Still Movin' and Groovin'

2010-09-08T14:28:00.002-05:00

To all of the people who have been following Karen's trials and tribulations through this difficult time, Karen passed away at home on 9/3/2010. She died peacefully...and will be greatly missed.
I have had the honor to be with Karen for 29 years but that was not enough for me (I'm sure it was more than enough for her). If anyone has any comments or questions, please contact me either through this blog (which I have just figured out, I think) or my e-mail, edobu@att.net.
I know Karen would like for all of the people who followed her to raise their glasses of red wine (or white if you prefer) smile and give her a toast.....ed

Do I Get Frequent Flier Miles Here?

2010-08-20T08:56:00.004-05:00

Last Friday night, two days after starting a new high blood pressure medication (that is a side effect of longterm steriod use), I totally freaked out at home. I thought that Ed wouldn't let me use my oxygen and if I did, he would throw me out. Completely irrational. I said I was never going to sleep again because I couldn't stop worrying about things. Ed sat and tried to calm me down, but it took until about 2 a.m. The next day I felt better but embarassed.

Sunday night it happened again but not as severe, but Monday morning when we were supposed to be going to the hospital for my radiation treatment, I really went off the wall. Ed had to call 911 for an ambulance to Sloan, where I was admitted. They did a CT scan of the brain, told me I was very dehydrated, and had a urinary tract infection from the catheter they placed before I left the hospital two days earlier (and was told to wear until the end of my 10 raditation treatments). They admitted me, did my treatments, started me on another antibiotic, and couldn't find a reason for the problem. I was released on Wednesday afternoon.

Thursday we came in for my 8th treatment and afterwards I had another episode. Since I was here they took me right to urgent care and admitted me again. Neurology aren't sure if it's from the brain surgery and subsequent radiation (and longterm steriod use), some medication, or what. We need to do something to fix this so it never happens again. I'll go home today after they will do some tests and I have my radiation treatment, or tomorrow if I can get treatment (they will do radiation on Saturday but inpatient only). Otherwise we'll come back on Monday for the final treatment.

When I learn something, you'll be the second to know.

Home Again

2010-08-12T07:53:00.002-05:00

The simulation was done on Monday morning and I had my first radiation to my spine late that evening. The plan is for 10 treatments, one every day for two weeks. I had the second one on Tuesday late in the afternoon and then I was discharged. Because it was so late, we stayed at my boss's apartment that night to save us the trip back in the morning. After treatment yesterday midday, we came home. It was wonderful to be back in my own bed, although the day completely wore me out. My appointments so far are midday so we can go in later and not get up at 4 am everyday.

The boss flies home from his summer in Montana on Monday. I can't believe the summer is practically over. Seems I've spent most of it in hospitals. We discussed my continuing to work from home as long as I need to, although I have to go in every seven to 10 days to do the bills (Ed will drive me in and home). He has been amazingly patient and generous. It can't be easy to have one employee and have her in such an everchanging predicament. I don't know what I would do if I were employed at a regular company. No patience or generousity there.

Nothing else to report at this time. If anything changes (LOL), I'll be back!

Found the Problem

2010-08-07T14:32:00.003-05:00

The repeat MRI showed that there is a small lesion (probably another metastasis, about 1 cm. in size -- so very small) located at the top of where the saccral nerves branch off to your lower body. The radiation oncology department is setting up a plan and an simulation for me for Monday so they can also hopefully start treatment that day as well. I won't know the schedule until they are done with the plan, but it will probably involve at least three treatments. So I am here at least until Monday, perhaps through Tuesday since I have that early morning appointment with the thoracic surgeon followed now by radiation. I might just stay through Tuesday on their dime before going home. They have inconvenienced me by having me stay through the weekend without any more tests to be performed and no doctors around at all tomorrow unless there was an emergency, so if it turns out to be more convenient for us to have me stay an extra night, I will.

Some of my numbers are bouncing around a bit, mainly because of the high dose of steriods I've been on. My sodium was good last week (137) but as of Friday, it was down to 129 so I am back on sodium for a while. My blood pressure has been high, so they put me on a medication to lower that. My blood sugar has been good, so nothing to worry about there, but supposedly today my calcium was down so they are giving me calcium every day. My breathing is good one day and not so good the next, even with the oxygen on. I have no idea why that is. Everytime I do take the oxygen off because I don't feel I need it, one of the nurses comes it and tells me I should be wearing it because my oxygen saturation level goes down several points. I just can't win.

When I find out about the radiation plan, I will update this again. In the meantime, don't worry too much about me. At least they are taking good care of me as long as I'm here.

Just came back from my first real walking since I got here on Wednesday night and it felt great. I'll probably be sore from it tomorrow, but it was worth it to get off my butt. LOL

Wrote too soon

2010-08-05T15:16:00.002-05:00

I'm back in Sloan for a few days. Dr. K called last night at 5 to ask me to come in to Urgent Care so a team of specialists could get together and figure out what's causing my numbness and other issues. Ed dropped me off here last night and I was admitted to my room at 11:30 last night. I was seen by the entire neurology department twice this morning and they ordered a new MRI of my lower spine because they believe that something is pressing on my 3-5 saccral nerves and want to redo the MRI even though I had one done at CentraState a week ago. Of course, everything in the hospital moves at a snail's pace, so I'm waiting and napping until they come for me. I'm very hopeful that this will finally resolve my problem with urination, which has been going on in various modes since Memorial Day weekend when I had to be catherized because I couldn't go. Now I have the opposite problem. Keeping my fingers crossed.

I have seen a patient representative about getting a new oncologist. I can no longer rely on Dr. K, especially after asking me what the next step should be. I agree that we need to do chemo if I don't have radiation to my nerves, and I have reached out to my group for advice on other chemos. One person has suggested Votrient, which has given several members a very good response, so I will be discussing this with the new oncologist and try to get things started by the time I leave here. I'll let you know what happens and when.

I'm still swollen and my blood pressure and pulse rate are high, while my oxygen saturation is only 92 despite being on oxygen all the time. The nurse practioner is coming in to discuss those issue and I'm on blood pressure meds now in addition to being on the high dose steriod. At least my skin has not been painful today as it sometimes gets because of the amount of swelling.

I've just been called down for the test, so I'll post later. Wish me luck in getting this finally taken care of, regardless of what they find.

Useless

2010-08-04T11:02:00.002-05:00

To make it a bit easier on me, we stayed in the city Sunday and Monday nights. It would have been especially hard to get around with the oxygen tank and all our other stuff if we had gone in for the day or just one overnight, so it really worked out for the best. I did fairly well getting around and not using too much oxygen on Monday, but it really exhausted me for Tuesday and I got pushed around at MSKCC in a wheelchair all day. Today I'm trying to recover, but it will take another day or so, I think.

My appointment with the neurosurgeon went far better than I was anticipating. His nurse had made it sound as if I was worrying unnecessarily about the cyst on the back of my head and that there was nothing he would be able to do about it. When he checked it out yesterday, he was quite concerned about how big it was and how long it had been there. He has recommended a follow-up brain MRI in a month, after which we will meet again. He also told me that if I had any questions or concerns in the meantime, I should contact his office right away. We left there feeling much more confident that he would continue to follow my case even though there is no surgical intervention needed at this time.

Our appointment with Dr. K was a total waste of time. She started the appointment by asking me what I wanted to do next. Is that her plan? After pressing her, she offered a new chemo because she claims that two weeks after my three day treatment, I suffered swelling of the chest tumor, which caused "SVC syndrome." I find it hard to believe that it would be possible to see any affect from the Ifosfamide that quickly, let alone claim it's not working, and I tried to argue for another round or two of it, but she insisted I would be wasting my time. She offered two other potential chemos, one of which I couldn't get at MSKCC but would have to arrange through UMDNJ. I would prefer not to get involved with yet more oncologists outside of New York, so it looks like I'm going to try DTIC, which is given via infusion over an hour or so with lots of anti-nausea medications every three weeks depending on how it affects my blood counts. My first treatment is scheduled for August 10.

Other than offering to take over my oxygen prescription issues, she offered little insight on anything else. She told me my sodium problem would be with me as long as all these other issues are affecting me, although she failed to mention that it's back to normal range (137) now that I'm on 1 gram of sodium per day and a 1.5 liter liquid restriction.

At our request, she set up a meeting with a new thoracic surgeon (the one who failed me in October has left for another hospital), and we are meeting with him next Tuesday to review my history and see what options I might have for the future. After her "emergency radiation" to the chest tumor, it is not possible to do surgery to that area for a certain length of time. We already know this, but we want to know what the future might hold as far as surgery is concerned and planning ahead may be key.

Part of the problem was definitely my fault. I did not have questions prepared in advance because she set up this appointment to follow up after all my recent hospital stays and present a plan, so I thought we would be having a discussion. Apparently not. We are seeing her again next Tuesday and I have already started a long list of issues to discuss. If we do not get the satisfactory answers we seek, we will request a referral to another MSKCC oncologist. This just simply cannot go on without her being involved in all the facets of my care and having a handle on what doctors I'm seeing, what they are doing, and how she needs to be involved. The almost one-hour appointment was a big disappointment.

I'm still fairly short of breath, but I'm breathing better at night and able to sleep at about a 25 degree incline using my new wedge pillow and one other pillow. That's a big improvement from not being able to sleep sitting straight up because I couldn't get enough air. I still have several other medical issues that need addressing, but the sodium seems to be in good shape for now. I'm hopeful that over time things will improve and not put me in for another hospital stay, but every day seems to offer a new challenge, and I need to address these challenges as they come along in whatever my best interest is at the time. Keep your fingers crossed that things are on the way from here!

In and Out Again

2010-07-31T12:32:00.002-05:00

My breathing started getting very difficult on Wednesday the 21st and I was unable to sleep for more than 20 minutes at a time sitting almost straight up in bed. Friday night I slept in the den so that I would already be straight up and awoke at 12:15 feeling like I was suffocating. The feeling did not abate all day, so at 3 p.m. I asked Ed to take me to the local emergency room. I was put on oxygen and given Lasix to get rid of some of the fluid that was causing painful edema in my feet and arms. The doctor tried to get me transferred to Sloan since they have my medical history, but was told by Dr. Keohan that the sarcoma department does not accept transfers on weekends. If I had showed up at the urgent care center there, they would have taken me, but no transfers. I wonder what a true emergency is considered?

I was admitted and finally reached my room at 4:35 am Sunday. I had many tests including chest and pelvic CT scans, a full spine MRI, ultrasounds in my legs and arms to check for blood clots, a chest xray, and more bloodwork than you would believe. The positive thing that came out of all these tests, besides showing that I don't have any new mets causing problems, is that the fluid around my right lung was removed on Tuesday. The doctor withdrew .5 liters from one pocket of fluid, and that has significantly increased my lung capacity and allowed me to lie down at a 20 degree angle and get some real sleep. I still have a low sodium problem, edema and a few other issues, and I'm on oxygen most of the day especially after I'm walking a few minutes, but the procedure was a huge bonus. I can't understand why no one suggested that before, unless they thought it wasn't enough fluid to bother with. I've obviously had fluid there but it's possible the radiation made the situation much worse since the damaged tissue cannot absorb the fluid build-up as it normally would.

I was discharged yesterday and Ed bought me a 4-1 adjustable pillow from Brookstone (thanks for the recommendation, Lydia!). It's not perfect (in the hospital I could adjust the bed up and down as needed), but it helped a lot and I got a pretty good night's sleep. Of course, it always helps to be in your own bed without nurses wandering in and out all night. I'm trying to get some more exercise now that I'm home, but I have to take it slow. I'm going to push a little harder, because otherwise I'm just spinning in place.

Because I had several CT scans in the hospital, I'm not having them repeated for my follow up with Dr. K on Tuesday. She is going to recommend trying a different chemo, which I am going to refuse because I don't think one treatment is enough to judge anything by. I want to complete at least two more followed by scans to see what the results are. It's also going to take some more time for this radiated tumor to calm down, since it's obviously swelled from the radiation and made things temporarily worse. I'll report on my meeting with her next week.

I'm also seeing the neurosurgeon on Monday to discuss the cyst on my head. I know that it's filled with spinal fluid, but the idea that it should "just go away eventually" is not good enough. I want a timetable and what happens if it doesn't resolve itself during that time. The surgeon didn't really want to see me again, but I insisted and his nurse finally gave in. I guess if they have done their jobs, doctors don't particularly want to deal with you again if the problem is unusual but happens and they don't plan to do anything about it right away. Amazing, huh? Makes you wonder what you paid all that money for.

It's been a long day already and time for a nap. I'll be out of touch Monday and Tuesday, so be patient.

I hope you enjoy a wonderful weekend!

My bad...

2010-07-23T08:17:00.002-05:00

I knew I hadn't posted in a while but I didn't realize it had been eight days. Sorry about that!

I finished the radiation treatments on Tuesday and we were very glad not to have to go into the city another day -- especially since it started on the 8th with my follow up with Dr. Yamada and ended up with me in the hospital again on the 9th. Eleven days of either being in the city (me) or traveling into the city (Ed) is waaaay too much. After my treatment, I saw one of the residents (the radiation oncologist was not in) and she reminded me that it could be some time before I felt or saw any change. So far, the swelling in my hands and feet, which were pretty bad by Wednesday the 14th, have improved and the veins that were extremely prominent on my chest and upper arms (a sign of a compressed SVC I've come to learn) are less so, but the past two nights I have been unable to find a position in which I can be both comfortable and breathe easily -- especially without wheezing. Yesterday I restarted the six day course of steriods that the resident put me on on the 14th, so hopefully that will help me breathe easier very soon. If not, I'm not certain what the next step is, but I can't go too many more nights without getting more than 30 minutes of sleep at a time.

My next appointments have gotten really messed up, but I do have a schedule. August 2: 11 am nutritionist follow up; 1:45 pm neurosurgeon follow up about this huge cyst that still exists on the back of my head (I was told by his nurse that while it is unusual, it does happen and it's spinal fluid leaking out of the incision in my skull -- which would be practially impossible to find; more on this after we see him and find out if I even have any options); and CT scan of the chest, abdomen and pelvis at 4:05 (arrival at 3:05). We then see Dr. K the next morning at 11 to find out the results of the scans and when I restart Ifosfamide. I'm guessing it will be around August 10.

I have been doing a whole lot of nothing around here. I can barely do 14 minutes on the treadmill and going up stairs is a real chore. I don't know whether it's that I'm totally out of shape or this tumor has swelled from the radiation and it's making me very short of breath. I'm guessing it's a combination. I'm trying to get at least one thing done a day (this doesn't count) so at least I feel that I've accomplished something. We'll see how that goes.

At least I'm down to one medication daily (the steriod is temporary). I took myelf off the sodium and water restriction to see if it would help with the urination problem (I still can't believe I've been writing about this). It's made a big difference and I guess I'll find out when bloodwork is done on the 3rd how my sodium and other levels are. I probably should have my blood pressure checked before then since I'm off the medication for that too.

I no longer go out, even on my porch, without a hat. I don't have much hair at all, although there is some up there, and I certainly don't want to burn my scalp. If I didn't have this huge lump on the back of my head, I could wear more baseball caps, but I need bigger hats to hide it. Also, if the swelling would go out of my face, the hats would look better too. It's a good thing I'm not too vain!

It's supposed to feel like 100 degrees here tomorrow so you know I'll be indoors keeping cool. Hope the weather is more comfortable wherever you are -- or that you stay as comfortable as possible. Have a great weekend!

Radiation treatments

2010-07-15T06:45:00.002-05:00

I finally made it back home late Tuesday afternoon. It felt good to be back in my own bed, although we're having a struggle getting my pillows set up correctly so I can breathe. I think we finally got it right last night and, of course, today is sheet chaning day! I wish we could glue the three pillows together so we can remove them and then replace them exactly as they are.

Before yesterday morning's treatment, the technician was concerned because my hands and arms are very swollen. She had the nurses check my vitals and call one of the radiation oncologist's residents to come and check me out. My heartrate is still quite high (130s) but my oxygen saturation is pretty good (95-98%). The doctor watched it as she had me walk around the floor to make certain I was okay. She decided to put me back on a low dose of steriods for 8 days, just to try to reduce the swelling that the radiation is causing in the tumor. I started the meds last night so hopefully my shortness of breath will be eased in a day or so. They will also have oxygen available for me during treatment since I have to lay on my back (very difficult for me to breathe that way). I don't think I'll need it since the treatment takes less than 10 minutes.

It's supposed to be a very hot weekend here in the northeast, so I plan to spend it indoors napping, under the umbrella outside or briefly in the pool (have to watch my sun exposure). I hope wherever you are and whatever you do, you have a wonderful weekend and stay cool!

Here I am again

2010-07-13T08:10:00.002-05:00

After the urination issue and the fact that I still needed some sort of allergy medication, I contacted Dr. K's office for help on Wednesday. When I didn't hear anything back, I called again on Thursday and was informed that she wanted to see me early Friday morning. Upon seeing me (8 days after my last appointment), listening to my racing heartrate and hearing that my breathing was a bit short, she decided I needed emergency radiation to the chest tumor because she believes the SVC (superior vena cava) was being further compressed. Soooo, she admitted me to the hospital once again, failing to mention my urination problem to anyone.

I told everyone about that problem but no one took it seriously until Friday night at midnight when I hadn't urinated for 12 hours. They catheterized me for two days, and so far things are running along much more smoothly. One problem possibly resolved.

When I was finally taken up to radiation, they did a scan and then spent the afternoon making their plan. I was supposed to have my first treatment at 5:30 pm, but didn't until 8:15. Then I was taken to my room. Poor Ed -- a very long day for him and then he had to drive back home whereas I could just go to bed.

I had another treatment at 6:30 pm Saturday and was supposed to be released on Sunday, but they screwed everything up and I spent another night. Yesterday, my treatment was supposed to be at 11:30 and then we were going to head home. Without telling us, they moved my appointment to 2:30 and Ed had to leave before I actually received treatment at 3 p.m. We're going to try again today. My treatment is scheduled for 11:30 but they are going to try to fit me in earlier and are going to try to schedule the rest of my appointments for 9 a.m.

I was originally going to have a total of five treatments, but they changed their minds and now I'll have nine -- two at a higher dose, and seven at a lower dose. They believe this will be more effective than five at the same high dose. I haven't met the radiation oncologist who is overseeing this treatment, but I hope to today to find out exactly what happened to make that change.

The on-call sarcoma doctor over the weekend and one of his assistants ordered Flonase for my allergies. They determined that it would not make me retain water (believe it or not, a lot of medications can do that). I've been taking it for two days now and it seems to help a bit. Perhaps a second problem resolved.

So that's why I've been out of touch once again. I hope to be home tonight but the fatigue is already starting to kick in, so don't expect too much in the way of updates over the next week or so. I'll do my best and thank you, as always, for keeping me in your thoughts.

How Not to End Your Holiday Weekend

2010-07-06T08:21:00.002-05:00

The holiday weekend was sunny and hot here in the northeast and I spent most of it indoors, although we did get in several hours in and around the pool. I can't spend too much time in the sun because I'm still on the antibiotic, but I slathered on the 30 spf sunblock and spent minimal time floating on the raft.

My allergies have really been bothering me the past few weeks, so I've been taking 12-hour Claritan D almost every day. At the end of last week, I started to notice that I was going longer and longer between visits to the bathroom, even after taking the medication to lower my potassium that Dr. K prescribed when I saw her on Thursday. I didn't think too much of it, until Saturday, when I urinated at 5:30 p.m. and didn't go again until 10:30 a.m. Sunday, and then didn't go again by 6 a.m. Monday morning. I knew something was very wrong because I could feel the pressure in my bladder, but nothing was happening. Into the car we climbed at 6:30 and headed to the hospital. I had to be catheterized and then they filled me with fluids. They also did bloodwork to check for an infection or kidney problems, but didn't find anything wrong. The catheter was removed at 12:30 and I was told if I went 12 hours without urinating again, I would have to come back.

When I hadn't gone by 5:45 this morning, I thought we were going to be spending another day at the hospital, but it turns out that the old wives' tale is true: If you run warm water over your wrist, it will make you go. I hope I won't have to do that every time, but it worked this morning.

I never even thought to mention to the doctor that I was taking Claritan D, and I never read the side effect of this drug. It turns out that it can cause less urination or none. If you take this drug and experience this symptom, that may be the cause. I've elimated it from the medications I can take, which is a problem because today I'm completely stuffed up and I don't know what to take. I'll have to check with the pharmacist.

So that's how our long weekend ended, but at least everything turned out okay in the end. With any luck, everything will return to normal in a few days.

I'm having my follow up MRI on Thursday and then seeing Dr. Yamada. I'll let you know what happens after the visit.

In the meantime, try to stay cool. It's supposed to reach 100 degrees here today. You know where I'll be!

Things that make you go "Hmmmmm"

2010-07-02T08:51:00.002-05:00

As you know, my potassium was considered too low last week, so I was put on pills for 7 days to increase the level. Well, yesterday, my potassium was too high, so I was given another medication to take to lower the level. That's just crazy. Standard procedure at Sloan for certain chemos is a Nulasta shot the following day to boost your white cell counts. Well, my white cell counts, which had been in the range of 4 to 5 tested on June 15 at 13! Despite that number, I was told to have the Nulasta shot, and yesterday Dr. K wondered what was going on with my white cell counts. Too high, she said. Well, do ya think? They are now 34! I think I will need to review those numbers in the future before I agree to another one of those "standard" shots. These things, and so many others, really make me scratch my head and wonder who exactly is crazy...

On a good note, Dr. K believes that Ifosfamide is working for me (remember this is the same doctor who laughed when I told her I thought the clinical trial was working for me). She is pleased with the reduced swelling in my arms, upper chest and neck -- not gone but greatly reduced -- and reassured me that the swelling in my face will go down as the steriod works its way out of my system. So no radiation consult for the chest tumor at this time, which is a good thing. I'd like to give Ifosfamide a few rounds to see what it can do first.

Speaking of which, I'm trying to arrange to do my next few treatments at the NJ facility (beginning with round 2 on July 12), which means I'll be able to sleep in my own bed at night and not have to travel into the city. The accomodations aren't quite as nice as Sloan, but Ed can drop me off at 9 and pick me up at 5 and not waste an entire day. And I can sleep until 7. Yay! I'm waiting to hear if the insurance company has approved it. Will let you know when I know.

On a final note before we begin the July 4 weekend: Happy 59th birthday to Ed!!!! Yes folks, as of today he has managed to survive not only life in general for 59 years but putting up with me for the last 28. Shouldn't he get some sort of cash prize?

Have a wonderful holiday weekend and enjoy those barbeques!

Nulasta sneaks up on me

2010-06-25T12:33:00.002-05:00

The nurse informed me on Friday that I would likely feel the side effects of the Nulasta shot over the weekend: achy bones and joints, especially the long bones (sternum, pelvis, femur) since they are the ones that produce the most white blood cells. Well, it wasn't until Monday evening when the pain in my lower back began, and it lasted for two days. Veeeery uncomfortable. Tylenol worked at first, but then I started taking Percocet on Tuesday. I only did that for a day, because it makes me feel better but also makes me a little nutty. Next time, I think I'll just stick with the Tylenol and maybe an ice pack. It feels fine now.

Just completed my third physical therapy session. I'm not sure that I'm making any progress other than more repetitions, longer pedaling, or using more weight, but I suppose the evaluation will show if there has been any improvement. I'm scheduled for four more sessions, so we'll see how they go. I don't think I'll continue after that. I think that once I'm off the steriod and my head clears up, I'll feel and function much better. Let's keep our fingers crossed. I am definitely walking and moving better than when I was in the hospital, but I still have room for improvement.

I'm hoping to do my next Ifosfamide treatment here in New Jersey with Dr. Windsor. They are going to contact the insurance company to see if they can get it approved. Although I would spend the day in a general room with up to 10 other people and one television, it would save me from traveling, staying in the city overnight by myself, and having to get up at 4 a.m. Ed could drop me off at 9 a.m. with my entertainment items for the day, lunch and snacks, and pick me up at 5. I would sleep in my own bed, have someone to make sure nothing weird happens to me, and go back the other two days the same way. I don't have a date for the next treatment yet (it's every 21 to 28 days), but I'll post it when I know.

Congratulations to all our grads out there. Kids are graduating from everything these days: elementary school, middle school, high school. Is there a kindergarten graduation too? Then congrats to you, too! Now take the next two months off and enjoy yourselves. No thinking about back to school stuff yet. Save that for July 5, when everything goes on sale.

I hope you get out this weekend and enjoy your pools, backyards, barbeques, friends and family. Good food and fun is what summer is all about. Don't forget the sunblock! I'll be back next week.

Made it through

2010-06-18T08:40:00.002-05:00

The week started with my CT scans on Monday. I haven't read the report yet, but according to Dr. K, there was growth in the lung and chest tumors as expected. Currenly, the largest one in the chest is compressing my superior vena cava to the extent that I am having difficulty draining fluids. Normally, fluid in the head and arms drains through the lymph system and into the SVC, but because mine is compressed, my neck and arms are extremely full of fluid -- much more than can be attributed to the steriods and extra fluids that this new chemo requires (2 liters extra per day). I had an ultrasound yesterday to make sure there aren't any blood clots causing the problem (there aren't); it's just a long, slow, uncomfortable process. My skin is stretched to the limit on my arms and is quite uncomfortable. After this, I'm going to try laying down with my hands above my head to see if that helps at all.

Dr. K said that if the swelling doesn't resolve itself in a few days after giving me Lasix yesterday, she is going to admit me to the hospital (once again) for radiation treatment to the chest tumor. She is afraid that situation will get worse, and this would be the first line, last resort, fast method of trying to debulk the tumor enough get it off the SVC. I don't know how she would work that since I just finished the chemo, but I'm not due again for 21 to 28 days.

This afternoon I have to go for a Nulasta shot for my white counts -- although they are actually elevated so I'm not certain why this is a "must." Nevertheless, I'll get it locally so I don't have to go all the way back to NYC and they will check my labs again too since my sodium is down again (from 137 when I left the hospital to 127). This is a tough balancing act since I'm restricted on fluids because of the sodium but the chemo treatment requires extra hydration to protect the bladder and I'm not draining it all out. I'm sorry for me but feel a bit sorry for Dr. K since she has to figure out how to manage this correctly. I'm just following orders.

Anyway, Tuesday morning I arrived at 8 and they hooked me up to saline for 1.5 hours. Then I was given pre-meds for nausea, steriods, and then 15 minutes on Mezna, which is the drug to protect the bladder. That was followed by three hours on Ifosfamide, more hydration and two more bags of Menza over the next three hours. I got out of MSKCC at 6 p.m. and went directly to the apartment. Had Chinese takeout and I was in bed by about 8, getting up every two hours or so to urinate. Wednesday Ed stayed home, and treatment started about 8:15. I finally finished up at 5 and once again headed straight for the apartment. I was going to take a short nap and then eat leftovers, but I slept until 12:30! Heated up the Chinese food at 12:30 and had a little feast before calling it a night.

Yesterday the nurses had a meeting and were running behind so we didn't even start until after 9. That was interrupted by the ultrasound, and by the time everything was finished yesterday, it was 7:15 p.m. Ed had arrived around 3, so at least he wasn't stuck there all day, but it was a long one. We finally got home at 9:15, had some pasta, and I hit the sack at 10:30. Slept pretty well with frequent bathroom trips, woke up very hungry, but got nauseous after breakfast so I took an Ativan. That seems to have soothed the problem. I'm headed down for a nap after this, though, having cancelled my PT session for today. I don't have to be at Little Silver until 3:30, so I have time to catch some zzzzs. That's probably how I'll be spending the weekend.

According to Dr. K, the real fatigue will hit in about 10 days. Not looking forward to it if this isn't the "real fatigue." Sleep can't hurt though, correct? If you need it, you need it. It's going to keep me out of touch again, but know that I am thinking of all of you, and I know you are thinking of me.

Happy Father's Day to all our dads out there! And thanks, as always, for following along with my journey.

Going strong

2010-06-11T16:50:00.003-05:00

Today I did my second session of physical therapy. They have me mainly doing arm and balance exercises, although they put me on the exercise bike for 10 minutes today and I thought I was going to keel over. Had to stop a few times to catch my breath. I'm definitely out of shape. Afterward, Ed and I went out to lunch and then it was home for a nap. Tonight I'm going out with the girls to get a change of atmosphere and just hang out. I'm looking forward to it, especially since last week I was soooo ill. It's hard to believe that this time last week I was being sent back to a hospital room. Let's hope that doesn't happen again for a long time.

Yesterday I got most of my hair cut off. It's very short and dries in about 3 minutes without a blowdryer. I know that it won't make a difference as it will still be devastating when it falls out, but I can get used to a lot less hair in the meantime. And it's natural air conditioning for my head! I'm going to get my wig shortened, as it's too long for me, but I don't plan to wear it during the summer. Even though it's real hair, it's very hot.

Tomorrow I'm going to go see Mom, who hasn't seen me in more than a month. She was ill when I had my surgery, so she couldn't see me, and since then I've just been too tired to do a long visit. Ed's going to take me to the house so I can leave when I get tired. She'll be thrilled but shocked by my appearance, I'm sure. My face and neck are so blown up from the steriods, I look like a 120 lb. woman with a 300 lb. face. It's weird, but can't be helped.

No other news from here. Hope you all have a wonderful weekend.

Busy, busy

2010-06-09T07:34:00.002-05:00

Today I start my physical therapy. It's going to be a very broken schedule, however. I was scheduled to go Monday, Wednesday and Friday mornings, but I have to cancel at least two days next week now and obviously had to cancel this past Monday. We'll have to see how much this will help, but I'm keeping my fingers crossed that I do see a benefit.

Tomorrow I'm getting my hair cut down. I haven't been able to have it colored because of the surgery, so it will be interesting to see what it looks like once most of the color is cut off. It won't last for long anyway.

Monday Dr. K has scheduled me for a CT scan of my chest to see what's been happening since my last scans and dropping out of the trial. I go in on Tuesday at 8 a.m. to see her and then start Ifosfamide for three days.

If I'm feeling well on Friday, I'll go to physical therapy. Since I haven't had this treatment before, I don't know how it will affect me or how fast, so we'll have to play that by ear.

Otherwise, I'm sleeping pretty well (about three hours at a time) and still taking an afternoon nap. I walked on the treadmill yesterday for 20 minutes and then I made dinner! It really felt good to try out a new recipe and get back to chopping and stirring and creating. I haven't done that in a while -- frankly, when I was on the trial I wasn't interested in food at all -- so this is a very good thing. By the way, on Monday when they weighed me in the hospital I was just over 120 pounds. Big progress there!

Nothing else new. I'll report back when I have something interesting to share. Hope you are having a good week.

More adventures!

2010-06-08T08:28:00.002-05:00

Yes, I know you've been wondering why I haven't posted recently. Last Tuesday, the day I finished my last steriod pill, I began throwing up. The first time was after breakfast, so Ed and I simply thought I ate too much or too fast or maybe I had a stomach bug. I felt terrible, and couldn't get myself going all day. After that, I would vomit at least twice a day, sometimes in the middle of the night, and early in the morning it was just dry heaves. By Wednesday evening, I knew something was wrong so I called Dr. K's office on Thursday and they made me an appointment to see her Friday morning at 10. They did bloodwork and found that my sodium was very low and my electrolytes were off. She decided to admit me to the hospital right away, and actually made me go by ambulette, even though I had just walked five blocks to the clinic and could have taken the MSKCC shuttle from clinic to the hospital much faster and for free. Can't wait to see that bill.

Anyway, we got to the hospital around one and after checking in, we did the usual waiting game. Saw the urgent care doctor finally and she called in neurosurgery. My neurosurgeon and his fellow came and determined that I needed a CT scan of my brain to check for swelling. They believed (and were correct) that I had swelling in my brain from the radiation treatment on 5/26. That caused the vomiting, which caused the other problems. I was admitted and taken to my room around 6 p.m. (when they finally let me eat). I was put initally on a very restricted diet, but that was only for one day.

I received a very high dose of steriods in the hospital, but that has been cut in half now that I'm home. However, they have me on a very slow tapering off schedule, so I'll be on the steriods for several weeks. I look like Jerry Lewis did when he was on steriods, even though Ed says it's not that bad. I'm feeling better, with no vomiting since we were in urgent care Friday afternoon. I was put on salt pills in the hospital and am restricted to drinking 1.5 liters of liquids per day. It turns out that when you have anything going on in your brain or lungs, your body sends a signal to your kidneys to retain water. When you do, you dilute your blood and that leaches out the sodium. By restricting fluids and taking the salt pills, it forces the body to let the water go. My sodium level went from 126 to 137 during my stay, and I'll be taking the sodium tablets until I have bloodwork again next week.

Another interesting thing I learned: The adrenal gland produces a steriod naturally. When you start taking steriods, the gland gets the message to stop producing the steriod. You taper off the steriods purposely to get the gland to start producing its steriod again. The doctors at the hospital think that my gland failed to get the signal and didn't pick up making the steriod again. That may be part of the reason why my brain started swelling and didn't stop after going off the steriods.

So now I'm on all kinds of medications: steriods, antibiotic, Prilosec, sodium. My blood pressure tends to rise while I'm on steriods, so they gave me a prescription for blood pressure medication, but that one I think I'm going to skip. I don't need to add the side effects of blood pressure meds to my list of worries.

It was another adventure on this long road. Another three nights in the hospital. I'm hoping that the billing office got all the approvals from Oxford. Thank goodness MSKCC is in-network now. Two long hospital stays in a month would wipe out our savings, since at last look they charged $3,300 per night! Imagine the accomodations you could enjoy on a vacation for that kind of money.

It's great to be back home, and I'm looking forward to feeling much better than I had been last week. Actually, I feel better now than I have since the operation. We'll keep our fingers crossed that this continues. I start physical therapy tomorrow morning, so that should help as well.

Finally, Dr. K was in to see me yesterday (she was off duty over the weekend). She wants me to start Ifosfamide next Tuesday. Treatment lasts a total of about 8 hours every day for three days: pre-meds for nausea, the drug itself is about a 3-hour infusion, then hydration afterward. I'm going to stay in my boss's apartment Tuesday and Wednesday nights so that Ed doesn't have to come in and waste two days sitting there and I don't have to worry about traveling back and forth. I'll take a cab from his apartment directly to clinic and back, and Ed will come in on Thursday afternoon to take me home. The treatment is every four weeks, so we'll try this out and see how it works. I will lose my hair, so I'll have to come up with some ideas for covering my head for the summer. I'm definitely not doing a wig -- too hot and uncomfortable. Send me your ideas!

I'm going to call today for an appointment to cut my hair down. I've been told by my friend Kay that it doesn't really matter how much you prepare your hair or yourself for the falling out. It's devastating, but I'll just have to suck it up. Now I'll get to see what kind of scalp I have!

Thanks for keeping tabs on me and I apologize for not getting on the computer while I was at the hospital. I could barely get in a nap or a walk what with all the doctors and nurses and blood-drawers coming in every few minutes -- or so it seemed. Hopefully, I'm out for good and on the way to a complete recovery. As always, I am so appreciative of your support and good wishes.

One last note: Bon voyage to Lydia A. Have a fabulous trip. I soooo wish we were going with you!

Another Sunday evening

2010-05-30T18:45:00.002-05:00

It was a gorgeous day here. Ed spent most of it working outside around the pool, and we finally got our ponds uncovered and the fountains working so our goldfish are now very happy. The pool looks great and I showed Ed how to add the chemicals today (that's usually my job). The water temperature is 86 degrees -- almost warm enough for me to go in! Maybe tomorrow.

I have been somewhat lazy since the radiation treatment on Wednesday, but tonight we went for a walk up our street and down the other side. Doesn't sound like much, but it was pretty far for me. I'm still having balance and gait issues, but I have an evaluation for physical therapy this week, so hopefully I'll start that soon and get them worked out. My steriods are on the last part of the tapering off and should be done on Wednesday, so perhaps that will help. I'll be very happy when the roundness in my face is gone. I look like a blob!

I've been sleeping better and have made it all the way down to a flat pillow, which is how I usually sleep. (In the hospital, I wasn't allowed to tilt my head below 30 degrees. I've been slowly lowering myself ever since.) It's been weird sleeping with my head at an angle, and several nights I had a very difficult time getting comfortable that way. I only have three sleeping positions -- left side, back, right side -- but they work for the most part. One of these days I'm going to have to give up my afternoon nap, which has become a luxurious habit since I've been home, but once I get more active I'm sure I won't even need it. If I have to go back to the office regularly before the boss goes away for the summer, I surely won't get one then!

Now that the treatments and surgery are complete, the next step is to decide with Dr. K what chemo to use. I didn't mention that the day I was discharged, she came by the hospital early in the morning and sat with us for at least 30 minutes, talking a bit about chemo but mostly just chatting. It was a side of her I hadn't seen before, and I must say that I enjoyed it. She said at that time (before we knew when the radiation would take place) that we would meet afterward to come up with a plan. I'm going to notify her office Tuesday that everything is done and get a date on her calendar. I'll let you know when it is. She did say she wanted to do scans again first and I know that they generally wait three weeks after surgery or radiation to start chemo again, so it will still be a couple of weeks before anything would start.

I hope those of you that can are enjoying the long Memorial Day weekend. I look forward to being back in touch more now that I'm feeling better.

Treatment completed

2010-05-27T17:14:00.001-05:00

The stereotatic radiosurgery was successfully completed yesterday and my stitches removed. It was a long day -- 5 a.m. to 9 p.m. -- and I have spent most of the day sleeping. Will have a follow up MRI in 8 weeks.

More later. Thanks for continued support and love.

Sunday evening

2010-05-23T18:39:00.002-05:00

This week has been full of up and down days. I haven't been able to string two good days together yet. One day I feel energized and try to get around more, and the next I feel like my head is full of cotton balls. Today was a cotton ball day. Doesn't help that it was a cloudy, raw day either. I guess this is to be expected, and I shouldn't be too discouraged, as tomorrow will only mark one week since I came home from the hospital.

Speaking of tomorrow, I believe I will get all the details of my Wednesday appointment. I'll probably have to arrive by 7 a.m., and it's going to be a very long day. The booklet says to expect to spend up to 12 hours at the treatment center. Yay. No concentrating on that yet. I'll give myself another 18 hours or so.

Thanks again to those who have been following up with e-mails. As mentioned, I am slowly trying to get back to people, so if you haven't heard from me directly yet, please be patient. I truly appreciate all the postitive messages you've been sending. It's just going to take a while to get back in the swing of things.

I'm here...sort of

2010-05-20T18:34:00.002-05:00

As most of you know, I've been home since Monday afternoon. It's been a period of adjustment for medication timing, sleeping, eating, and just getting around. I'm feeling better each day, but I'm still kind of foggy brained and wobbly on my feet. It's going to take a while to get back in the saddle.

I found out yesterday that they want to do my day of radiation treatment next Wednesday. They will remove the stitches from the surgery and then set up the radiation. The two remaining tumors are the main targets but they will also be radiating the surgery site to prevent recurrance (up to a 30% chance). I'm not looking forward to it and have decided not to really even think about it until Monday.

This is the first time I've been on the computer since the 12th, and I already need a break. I am trying to catch up with many of you, but please be patient. I will call or write as soon as I am able to. Some days, it's just too much too take and/or make phone calls.

Thank you all for your love, support and prayers. Keep them coming!

Back again

2010-05-12T12:32:00.002-05:00

My dear friend Lydia G. has offered her e-mail as a contact point for all of you. Since we can't rely on Ed this time to get e-mail updates out (he can't remember how he did it last time) and I don't know when I'll be back online, Lydia will send you an update if you e-mail her for one. Please send an e-mail (not before Thursday afternoon) to jklgraf at aol dot com. I'm spelling it out here so those e-mail address programs can't find it and start spamming her. You know which words to replace with symbols.

Once you send her an e-mail, she will send you a standard update with what she has heard from Ed (or me). How often she has news to share depends on how often one of us contacts her. If you don't hear back from her, it means she has nothing new to share.

Thanks, Lydia, for offering your time to keep people in the loop. I know they will appreciate it as much as we do.

The Day Before

2010-05-12T06:49:00.002-05:00

I apologize but I just can't get to all the e-mails I've received from you. I'll try this afternoon, but if you don't hear from me, don't be offended. I know that you won't -- you've all written that I shouldn't answer -- but since you've taken the time to write me, I feel bad about not answering. It's all just so overwhelming at the moment. I keep feeling like I'm going to start crying, but if I do, I know I won't be able to stop myself. So I just tell myself not to start. Crying isn't going to make anything better anyway, although it might relieve some of the tension. I might have to let loose tonight.

Thank you again for all of your support, prayers, thoughts, hugs and love. I know deep in my heart that nothing can go wrong simply because all my peeps have my back. No matter whether you are nearby or far away, I know you will be there with me in spirit, and that means so very much to me. Thank you.

This morning I have a special MRI where they will place markers on my head that look like peppermint lifesavers. I cannot touch them once they have been placed, so I will attempt to cover them with a baseball cap so I don't look like a total lunatic coming back to work afterward.

The nurse expects that my arrival time for tomorrow morning will be 5:45 a.m., as I am currently scheduled as the first surgery (that can always change in an emergency, of course). I'm not looking forward to it, since I've been told by the pre-admission testing nurse that they will have to run an IV line in addition to using my port. I know, it's a really stupid thing to get hung up on, but you know how hard it is to start an IV on me to begin with. Imagine trying while I'm totally scared. I'm surprised that my veins are even pumping blood at that point. I'll let you know how it goes.

The surgery should last 3-4 hours and I will spend the first 24 in the ICU before being moved to a room in the neurology unit. As mentioned, I may not be back on the computer until late next week, so don't panic if you don't see an update. I didn't have time to show Ed how to send out update e-mails again, so you're out of luck there. He's going to be at the hospital most of the time, so it will be difficult to catch him at home. I have an idea about an alternative source for updates. I'll post it here later if I can work it out.

Wish me luck, and I'll be back in touch soon. Love and hugs to you all!

Another update

2010-05-11T10:21:00.002-05:00

This will have to be brief as I am just too overwhelmed to spend too much time writing.

I saw the neurosurgeon yesterday and surgery is now scheduled for first thing Thursday morning, May 13. The tumor in my cerebellum has to come out immediately because if it swells, it would cut off the vessel that drains fluid from my brain into my spinal column, backing up the fluid and causing all kinds of problems. Dr. Gutin seemed very confident that this will be a standard, uncomplicated surgery. I will spend the first 24 hours after surgery in the ICU and then be moved to a room in the neurosurgical unit. I will probably be discharged on Sunday or Monday. After that, I will be home for a month. At some point during that month, probably after two or three weeks, I will have one day of radiation to the other two tumors.

This has been a lot to absorb in a very short period of time and I am trying my best to get organized in two days' time. I would greatly appreciate your thoughts and prayers for a successful surgery and an uncomplicated and speedy recovery. I don't know how long it will be before I can get in front of a computer again, so please be patient. It may be the 20th or 21st before I post again.

Thank you all for your good wishes. I'll be in touch as soon as possible.

Another update

2010-05-10T12:15:00.002-05:00

Things change by the moment around here. I guess someone is trying to keep me on my toes. At 11:25 p.m. Friday, I received a call from the same doctor I spoke with earlier in the day. She informed me that the neurosurgery department did want a special MRI, but not the one that was going to be performed on Saturday. Therefore, I shouldn't go to Sloan on Saturday at all and someone would get in touch with me on Monday to schedule a different MRI.

One of Dr. Yamada's nurses, Joan, has taken a special interest in me -- I don't know why, but I'm very appreciative. She was out on Thursday and Friday and so didn't know anything about this situation. I called to tease her this morning ("You picked a fine time to leave me, Lucille!") and she had just heard the news from Theresa, the other nurse. I told her about the MRI being cancelled (they didn't know about that) and that I was still waiting to hear from Dr. Gutin's office (the neurosurgeon). She informed me that Dr. Gutin's nurse is her best friend and that she would call her and call me back. A few minutes later she provided me the nurse's name and phone number. The outcome of the call is that I have an appointment to see Dr. Gutin today at 2:15. Because I'm by myself, Joan is going to join me at the appointment so if I miss something, she'll have heard everything.

Dr. Gutin's nurse kept referring to the tumor in the cerebellum as "the big tumor." I asked her if we could refer to it as "the tumor in the cerebellum" instead. That sounds less frightening. I'll find out when the MRI will be scheduled and when surgery will take place. I won't be able to have radiation on the other two tumors until I recover from the surgery, and Joan also informed me that Dr. Yamada is going to be away and the machines are going to be recalibrated and therefore will be out of use sometime soon. I don't know how that will impact the schedule, but we'll see.

On a side note: I just want to clarify that these tumors are leiomyosarcoma metastases. I do not now have brain cancer, which is a different type of cancer. These are cells from my original tumor that traveled to my brain -- like they traveled to my lungs, skull, pelvic bone, clivus, and chest -- and grew. When they send the tumors to pathology, they are classified as LMS tumors, not lung cancer tumors or brain cancer tumors. It's LMS traveling through my body and taking up residence in new places. I just wanted to make sure that no one thinks I'm developing new forms of cancer. It's the same damned one.

So, I should know more by late this afternoon. Look for another update here sometime tomorrow. And thanks, as always, for caring enough to follow along.

Update

2010-05-07T10:45:00.002-05:00

I received a call from one of the doctors who works with Dr. Yamada, my radiation oncologist. Dr. Yamada presented my case before the tumor board this morning and the neurosurgery team decided it would be best to do surgery to remove the tumor in the cerebellum (the back of my head) for several reasons: surgery is the gold standard for LMS -- if you can cut it out, you cut it out; the area where this tumor is located is slightly above where the radiation was performed to reach the clivus back in November 2008 and they have some concerns about radiating that area; and the shape and size of the tumor is amenable to surgery.

The other two tumors would receive radiation for several reasons: surgically removing one tumor is fine but operating on three sections of the brain is too much; they are not located near the area on the back of my head that received the larger doses of radiation in November 2008; and they are perfectly suited to targeted radiation. The 90% success rate remains in effect for those two tumors.

Dr. Yamada's office has cancelled the radiation for next Wednesday, although at this time I still need to come back to the city to have a special MRI performed tomorrow. The radiation will be scheduled after the surgery. They are scheduling an appointment for me next week with Dr. Gutin, the head of the neurosurgery department (see http://www.mskcc.org/prg/PRG/bios/317.cfm) to discuss the surgery.

The sizes of the tumors range from 1 to 2 cms (less than half an inch to just over 3/4 of an inch).

That's all I know right now. When I have more information, I'll be back.

Wow!

2010-05-07T08:32:00.002-05:00

First, I'd like to thank everyone who contacted me since yesterday afternoon about the brain mets. Your concern and love just amaze me and I am so grateful to have you all in my life.

Second, you people need to get busy with other things. You're obviously spending way too much time monitoring this blog if you read my message as fast as you did. You know I don't post every day, so get outside or something. Check every few days if you want. You're scaring me.

Third, there has been some discussion -- not with anyone who reads this blog -- that I seem to have "given up." I think as readers of this blog, you know that I have not given up. I've had a tough time lately, especially with the eating portion of the program. In case any of you were wondering but were afraid to say it out loud, let me reassure you: I have not thrown in the towel. I have not given up. I may be skinny and I may be out of shape and I may be tired and not as active as I used to be, but I intend to be here for quite some time. It's not going to get any easier at this point -- although it might sometime in the future if another chemo regimen actually shrinks my metastases -- and I may get sicker before I improve, but I'm not finished yet. I set a goal two years ago to make it at least to 50, and I've got almost two full years to reach that point. Once I reach that goal, I'll have to update my figure. In the meantime, I'm going to do the best I can to stand up to whatever new challenges come my way.

I know you're with me, and that gives me a lot of strength and encouragement. Don't give up hope. You never know if there is a miracle just around the corner.

Bad news

2010-05-06T13:20:00.002-05:00

I had my brain MRI this morning, and three metastases were found in my brain: one in the cerebellum (the back of the brain), one in the left frontal lobe (the left front side) and one in the left parietal lobe (left upper back side). These are actually in the brain, not in the skull as the others were. Dr. Yamada recommended targeted radiation and has scheduled it for next Wednesday, May 12. I have to come in to the city on Saturday to have a special MRI done.

On Wednesday, I have to arrive at 7 a.m. They will attach a metal halo to my skull using four screws (after they numb the areas, of course) and then attach a contraption to that. They will perform a special CT scan of the three tumors, and then I can eat breakfast and lunch and hang out until about 2 p.m. They will outline the tumors in 3D and determine a path for each radiation treatment. Around 2 p.m., they will begin the treatment, which will take about 20 minutes per tumor. Once the treatment is complete, I'll be finished and can head home.

Dr. Yamada says this treatment has a 90% success rate in killing the tumors and a five percent chance of long-term side effects. My other two choices were surgery or do nothing, the second not really an option in my opinion. We didn't discuss the surgery at all, although I will be speaking with him on Friday and will ask him about it. It would obviously be much more invasive since it requires operating in three different parts of my brain. I'll let you know what he says about the pros and cons.

He e-mailed Dr. K to tell her about the report and his recommendation. We both believe this means I am out of the clinical trial, since these metastases were not on the scans I had in November before the start of the trial. New growth in a new part of the body is a deal-breaker, I'm sure. He said that he's certain she will want to speak with me once she reviews his notes.

So, very disappointing news to say the least. While I have every confidence in Dr. Yamada and this treatment, it is not good news that I am growing new tumors. I don't know what all the options as far as chemo treatments are available to me. I'll have to discuss that with Dr. K, Dr. Windsor (the NJ oncologist), and do some research. I know there have been some new treatments lately that have brought some success to other LMSers.

I wish I could have brought the good news I was planning on, that everything was stable and nothing new was seen. It's been a very difficult day for me so far, and I'm not looking forward to breaking this news to my mother -- especially on Mother's Day weekend. However, I can't not tell her. That's going to be really tough.

So, I would appreciate your prayers, your positive thoughts, or whatever else you want to send my way. Right now I'm feeling pretty low.

In case I'm not back before then: Happy Mother's Day!!

A better day

2010-05-05T12:54:00.003-05:00

Yesterday we were called in to chemo at 10:55 -- only 2-1/2 hours after my blood was drawn. A significant difference from last week and a much more pleasant experience. I slept for part of the infusion time, as I have not been feeling well this week. My stomach has been very upset and I've had the dry heaves almost every day. I'm trying to get food in, but it's tough going.

I saw Dr. K yesterday and she admonished me for losing another two pounds over the past two weeks. She instructed me to nibble all day on whatever I can get in my mouth -- cheese and crackers, ice cream, cookies, etc. -- plus to drink Ensure or Boost. I actually have a bottle of Ensure at home in the fridge that I keep forgetting to try. Guess I should do that tonight. In the meantime, she, like the nutritionist, said to eat small meals throughout the day. I have been trying to do that the past two days. Today I'm making better progress, but my stomach is really not interested in anything I'm putting in it. As Lydia G. told me (and Ed has been telling me for weeks), I really just have to tough it out and make myself eat whether it tastes good or not. That's not easy to do, but just by looking in the mirror I can tell I have to do something and do it quickly.

I have my brain MRI tomorrow morning, which I'm not looking forward to. I have my Ativan to calm me down, so I will take that about an hour before the scan starts. I then see the radiation oncologist for my follow up and after that I'll head downstairs to see the nutritionist again. I don't think she's going to be too pleased with me.

I'll report back after my appointments.

What a gorgeous day!

2010-04-30T12:10:00.003-05:00

Just went out to pick up lunch and it is a beautiful day here in New York City. The temperature must be in the 70s and it's sunny with very little wind. My allergies are driving me nuts and my nose is dripping like a faucet, but on a day like today, I just have to suck it up (and take a Claritin D) and enjoy it. Hope it's still like this when I get home.

The meeting with the dermatologist was strange. First, he had me confused with another patient and kept asking me if I had a hobby, such as pottery, where I used my hands. Despite my negative reply, he asked me several times. (Hint to doctors: It would help if you read the patient's file before you entered the room.) He thought my fingers looked much better, and told me to keep up with the silver nitrate sticks, focusing on the infected skin in particular. I applied one again on Wednesday night and boy, did it burn! I suppose that means it was working. He also prescribed another antibiotic and had it called in to my pharmacy before I saw him. I picked it up and haven't taken it yet. I'm going to give the silver nitrate another week to see if it clears up. I really don't want to keep taking antibiotics.

At my weigh in on Tuesday, I had lost 0.6 kgs (a bit over a pound), so I guess I have to step up the caloric intake. Ed is concerned with the continuing iron infusions and is determined to get me to eat more iron-rich foods. Last night we had burgers and veggies. I don't know how much iron there was in that. Anyway, I did eat lots of protein yesterday, which I have been lacking since most meats taste very dry to me. I forgot to weigh myself this morning, but will do so tomorrow. I meet with the nutritionist again on May 6. I hope to have a better report for her by then.

I have to give a shout-out here to Dan and Kay, who turned me on to Greek-style yogurt, Fage Total (pronounced fa-yeh) and Chobani in particular. I have always hated the taste of yogurt, except when it was mixed into a smoothie, but I love these two. If you haven't tried them yet, I highly recommend them. Fage Total is full-fat yogurt and Chobani comes in fat free and 2% fat. Try them and let me know what you think. Thanks, Dan and Kay!!

Taking Mom out to lunch tomorrow and then I'll probably spend the weekend in the yard (sorry John). I find that yardwork really helps stretch out my lower back, which has been painful since I pulled it in a coughing fit about a month ago. I think many of us here in the Northeast will be in shorts tomorrow and Sunday. Don't forget the sunscreen!

Have a great weekend!

An endless day

2010-04-28T09:38:00.002-05:00

Yesterday was pretty much an unmitigated disaster. We arrived at Sloan at 8 for my bloodwork -- no visit with the doctor or nurse scheduled. My blood draw was complete by 8:30, and we settled down on the couch in the lobby expecting our usual two to two and a half hour wait. When nothing was happening by 11:05, I went into the chemo suite to get an update. Imagine my surprise when I was told that the pharmacy had been waiting for the results of my triglycerides and had only just starting mixing the drugs. The receptionist claimed she had told them to put a rush on it, and hopefully it would only be another half hour. A few minutes later, Dr. K's assistant came out to tell us about the hold up and that she and the nurse had been calling to get things moving because the results of that test were not necessary to mix the drugs. A manager came to see me to apologize for the delay and promised to send a patient rep to see me in chemo. At 12:30, I was finally called into chemo. It turns out that the nurse had ordered another iron infusion for me, so that added 15 minutes to the typical three hour infusion. Having arrived at Sloan at 8:00, we finally pulled out of the parking deck to head home at 4:00.

When we arrived home at 5:35, I headed upstairs to hit the sack. When Ed suggested that I at least have a small bowl of cereal before going to bed, I literally sat down on the stairs and sobbed. I had reached the end of my endurance for the day. Once I recovered, I stayed up long enough to eat a yogurt, but I did it in bed in my pjs. Unfortunately, every time I fell asleep I would wake up having to cough. That went on until 9:00. It was not a good day or night. Today I'm exhausted so it will be an early night for me again. On the other hand, when is it not an early night for me??

My cholesterol is down to 213 -- still high but low enough that I'm taking a break from the Zetia. As I have written before, I think it is a contributing factor to my weight loss, so with any luck I'll gain something back while I'm off of it. My triglycerides are very good, so I'm not worried about that. I found out the reason for the iron infusion: my hemoglobin is down to 9.3 (they usually don't let you do chemo if your hemoglobin is below 10). No wonder I've been extra tired, and no wonder I had the meltdown last night. I hope the iron picks me up a bit. I'd love to get back outside to do more weeding this weekend. It's supposed to be lovely.

I have to go see the dermatologist again today as my finger infections have not improved. In fact, I think I'm getting a hangnail on another finger, which will likely result in another infection. His office called in an order for an antibiotic yesterday, which I didn't pick up on the way home. I'm hesitant to take my third drug for this infection (my fifth if you count the two antibiotics I had to take for the vaginal bacterial infection in late February/early March), but I'm not certain that it's going to clear up otherwise. I'll report more tomorrow.

I have chemo again next Tuesday after I see Dr. K. (I have a feeling the pharmacy will be watched like a hawk for a while.) On Thursday, May 6, I have my brain MRI and then I see the radiation oncologist for my six month follow up. Afterward, I see the nutritionist to discuss my progress, if any. Another busy day of seeing doctors. Don't you wish you were me?

It was only 40 degrees when I arrived in the city this morning, but it's supposed to reach 75 by the weekend. I'm supposed to go see Mom on Saturday, although it's going to be the better day of the weekend. I still have a lot of weeding to do, so I'll be out there Sunday if it's not raining -- or maybe between any raindrops. I hope your weather is lovely, too.

Astounding

2010-04-23T13:39:00.002-05:00

When I first found out the details of this clinical trial, I was informed that the pharmaceutical companies would pay for the drugs, but I would be responsible for the rest of the treatment costs: doctor visits, blood work, infusion, scans, etc. At that time, I didn't know that my insurance company had signed an agreement with MSKCC to make the hospital in-network, so I thought I would continue to have my scans done in-network at another facility and I would pay whatever balance the insurance company didn't cover. Of course, I was thrilled to find out that MSKCC is in-network now, so I get charged $20 for each visit and nothing for anything else except prescriptions. I even get my scans done at Sloan.

Imagine my shock when I received the detailed bill that Sloan is sending my insurance company. Almost $12,000 for one month of treatments, bloodwork and scans! The insurance company won't actually pay that amount, but still. I don't know how much it would have covered if Sloan was still out of network, but I'm sure I wouldn't have been able to afford to stay in the trial. My portion of the bill came to $60. Can you believe it??? After paying out all that money before July 1 of last year, it really irks me that I had to lay out the balance of all those bills and now that these two companies have a contract, I'm off the hook. Don't get me wrong; I'm thrilled that I don't have to pay out that money, but it's just insanity. Those who don't have the in-network coverage get hit for tens of thousands of dollars, while those that do pay almost nothing. Doesn't seem fair to me.

Have a great weekend!

Stable

2010-04-21T12:40:00.002-05:00

I'm a bit busy today with the boss just back from Italy, but I wanted to let you know that my scans showed that my tumors are stable. That means six more weeks in the trial, with scans scheduled sometime after May 25.

Also, I gained about 2 pounds in the past week. We'll see if that holds or improves next Tuesday.

My iron counts were okay so no iron infusion yesterday. Cough continues but the Lyrica seems to be helping. I'm not taking anything else, other than an occasional allergy decongestant. The pollen is REALLY affecting me this season.

They will be checking my cholesterol next week and I'm hoping that if it's good, they will give me a month-long break on the Zetia. I think that is a major cause of my weight loss.

That's all for now. I'll be back soon!

Aaargh! The Pollen!!!!

2010-04-16T09:47:00.002-05:00

I rarely suffered from seasonal allergies in the past, but I suppose the mets in my lung have made me more sensitive to the higher pollen counts. I don't know what it's like where you are, but the pollen here is terrible. Everything is coated with green dust, and the tree pollen remains high. The grass pollen is next, with mold coming in at low levels. Today it's raining a bit here, so with any luck, we'll get a bit of a break. My chest could use it, and so could my back.

I'm happy to report that the Lyrica seems to be making a positive difference. Although I'm still coughing quite a bit due to the pollen, I can see a difference in the "non-allergy" cough. I've been on it at a twice a day level for three days now, and I'm quite pleased so far. I tried Claritin D 12 hour to help out with the phlegmy cough, but it doesn't help me much. Will try some Zyrtek D (however it's spelled) today. I just really need something that will allow my lower back to heal. I've been taking ibuprofen every day to get a little relief, because when I cough, especially early in the day before I've stretched out, my back is extremely painful.

Dr. K's nurse sent me to a dermatologist at Sloan on Tuesday after chemo, because they decided they didn't want to give me any more antibiotics for the infection in my ring fingers. The doctor was very personable and used silver nitrate around both fingernails. My understanding (from a Google search) is that the skin that has discolored (it's black, actually) will eventually slough off, leaving healthy skin underneath. I'm to apply the silver nitrate once a week for four weeks, and I have to pick up a prescription today for a corticosteriod that I have to apply to my fingers as well. That's to reduce inflammation. We'll see how it works and how fast. I can say that after almost three days, my fingers are not any less tender nor any less red.

We just learned that our Aussie friends, who we met in 2005 on a Mediterranean cruise, visited in 2006 during the whirlwind Florida tour, and sailed with on Liberty in November 2008, are moving back to Australia. We are so sad to see them go, although I suppose now I'll have to visit Australia! I wish we could get to see them before they leave, but this chemo schedule makes it so difficult to get away. We wish them all the best. We love you guys!

Have a great weekend!

Happy birthday to me...

2010-04-12T09:09:00.002-05:00

It was a Keystone Kops kind of day. Woke up at 7:15 and immediately started coughing and wheezing. Realized that going to a garden for the day would be a biiiiig mistake, unless I wanted to cough, blow my nose and hack all day. So, I had breakfast, spent some time with a heating pad on my lower back (which is not getting any better since I can't stop coughing and give it a break), and decided we would rent some vidoes and watch movies all afternoon. Got in the car and headed to the video store, only to find it closed two months ago. I guess it's been a while since we rented a movie! Headed back home, had lunch, opened my cards (thanks everyone!), cried at the one my mom sent, spoke with mom for 45 minutes, then decided it was nap time. Napped for two hours, visited Lydia G. for an hour while Ed picked up dinner, then had an upset stomach and could barely eat. I didn't even have my birthday pound cake! We decided since it turned out to be a not-so-great day, we would make this my birthday week. We're hoping to get at least one really good day out of it. I'm very grateful to have celebrated another birthday, but it could have been a little bit better. We finally had birthday cake yesterday and watched a movie. All in all, not a great weekend, but not too bad.

I started the Lyrica last night, but it's too soon to tell if there will be any benefit. The doctor said it would take a few days, so we'll see what happens. I showed Ed the literature on the neurostimulator and we both agreed that it is not an option that we would like to try. For one, I wouldn't be able to have any MRIs, and there is the possibility of infections, shocks, interference from certain equipment, etc., not to mention the implantation of the device, which is not small, somewhere in my chest. The MRI issue is the most important, as that is how the radiation oncologist tracks my skull and clivus tumors. I'm not giving up that test for The Cough.

Someone on the list I belong to wrote about a doctor out in California that does some very aggressive lung surgery. I may look into that. Supposedly he will review a patient's case without seeing you. If he thinks that surgery is possible, then you make an appointment to see him. That, of course, is still a last resort. I really don't want to give up my right lung, and I have a feeling that would be the only way to remove this tumor in its entirety.

I'm feeling extremely tired the past few days and will be interested to see what my hemoglobin reading is tomorrow. The iron is not helping, so they are going to have to try something else. I'm not scheduled to see anyone tomorrow, but I may have to insist on seeing the nurse. I'm sleeping a lot (see two hour birthday nap above) and that's not a good thing.

Beautiful weather out here, but the tree pollen is at its highest level, with grass and mold not far behind. Ed and I are both suffering from seasonal allergies. I'll be very happy once the bulk of the stuff has bloomed and all the green pollen is gone.

Have a great week!

The Cough

2010-04-09T12:08:00.003-05:00

Yesterday afternoon I met with the pain management doctor to discuss options to deal with The Cough (seems appropriate to capitalize it). I spent quite some time first with the resident and then Dr. Gulati, and we came up with a menu of options. The first is to try Lyrica, which is a medication used to treat fibromyalgia, thought to be caused by overactive nerves (I'm sure you've seen the ads). The doctor thinks it may help desensitize the phrenic nerve and thereby reduce The Cough. He wants me to take it for three nights, just in case I have a reaction (confusion being the main one he mentioned), and if I have no problems, I'll take it twice a day. I should know in a few days if it helps.

The second option is numbing the nerve. That would be done by injecting a block into the nerve on the side of my neck. There are actually two nerves he is thinking of blocking, but in his opinion, I will likely only get a few days' relief from this option. If that's true, the only bonus I can see is that we'll know that the phrenic nerve is or isn't the main cough irritant.

The third option is a neurostimulator. This Medtronics device is recommended mainly for people who have chronic leg or arm pain and is implanted under the skin, delivering electrical impluses to nerves in the spine. It works by tricking the brain into feeling a tingling sensation rather than the pain. Dr. Gulati thinks that it may work in my case by disrupting the sensation in the phrenic nerve that tells me to cough. The device can be turned on and off, and it's recharged and controlled using a remote control. The downside is that the device is implanted under the skin (and it's twice the size of my mediport) and in my case, that would probably mean in my chest. A test is done first where temporary leads are implanted and hooked to an external device that I would wear at my waist. If it works to control my cough after a week's trial, the actual device would then be implanted, so it's a temporary way to find out whether or not to go through with it.

He is also thinking of other options, which we can discuss if we exhaust these three. I told him I needed someone who would think outside the box, which I suppose he has to do anyway. He told me that of the four patients he's treated in the past two years with phrenic nerve issues, they all involved hiccups -- no coughing. So I continue to be unique. Yay me.

Tomorrow we were planning to visit Longwood Gardens in Pennsylvania since I didn't want my birthday celebration to hinge on food (usually we go out for a good dinner). However, with all the pollen in the air, my cough is worse than normal and Ed questions the sanity of visiting a garden. I guess I'll have to give that some serious thought this afternoon. Otherwise, I have nothing planned and I won't be having my usual four layer vanilla cake with chocolate icing, since I can't tolerate the taste of chocolate right now. Maybe a vanilla cake with lemon frosting?? Or a pound cake?? Both of those actually sound yummy.

It's been difficult the past few days trying to eat five meals a day. I've tried getting in some extra snacks and I've been also trying to drink fruit juice, but the 260 extra calories from the juice seems to fill me up. Oh well, I'm giving it my best shot. I guess we'll see in a week or so if it's working.

Before I sign off, I want to send a greeting to Lydia A., who shares my birthday if not my age (she's a spring chicken). Happy birthday, my dear friend. I hope you have a fabulous day!

Have a wonderful weekend everyone!

Long 48 hours

2010-04-07T09:46:00.003-05:00

Monday evening Ed came into the city and my boss and his wife took us out for a pre-birthday dinner. Told that I was to "pig out" that night, I tried my best but things just didn't taste quite right. Unfortunately, the food was also a bit rich for my stomach, and I ended up with a stomach ache that lasted all night and into Tuesday morning. That celebration didn't go very well, although the company was wonderful and the restaurant was lovely.

Yesterday was chemo day. My iron is still low and my hemoglobin is down to 9.4 (not that anyone informed me of that fact). After my treatment I was given iron by IV again. We'll see how that affects my energy level over the next few days.

At 3:00 we saw the nutritionist and she provided several great ideas. She recommends adding protein powder to smoothies and milkshakes (if I can tolerate them -- smoothies are my drink of choice) as well as using at least 2% milk and yogurt rather than nonfat. She also suggested that I replace half my water intake with fruit juices, which are much higher in calories, and that I try to eat at least five smaller meals a day -- working my way up to six to eight small meals a day. She wants me to avoid being overwhelmed by the "normal" amount of food that I would eat during my three-meals-a-day routine and suggested breaking some of those portions in half. I also need to add bakery goods, like muffins and pound cake, to my list of foods. Since I like carbs with butter, she encouraged me to eat pasta, bread, and potatoes. Since my iron levels are low, she also gave me a list of iron-rich foods and told me I need to eat the non-meat sources with vitamin C-rich foods.

Several foods that I like were on her short list: peanut butter, bananas, eggs, pancakes and waffles, oatmeal, sour cream, smoothies, and bagels. That was good to hear, as I was afraid she was going to have me eating tofu or some other food that doesn't appeal to me. (Apologies to those who like tofu.) I explained to her how difficult it is for someone who has always tried to watch her weight (at least since I turned 30) and counted calories to suddenly find herself looking for high calorie foods. It's a change in mindset that isn't that easy. She explained that I need to add about 250 calories a day to maintain my weight, based on her calculation of my current caloric intake, and add 500 calories a day to add about 1/2 - 1 pound per week. She also wants me to keep a journal for a week of all my food and beverage intake as well as the times I consume them.

I guess I'll be taking a trip to the grocery store this weekend to see what might interest me. If I let Ed go, he'll buy multiples of all kinds of things and then we'll be left with multiples of things I can't/won't eat. I see myself lugging all kinds of stuff into the office, though: jars of peanut butter, sticks of butter, fruit juices, crackers, etc. Thank goodness we don't have bugs!

Tomorrow is my appointment with the pain management doctor to discuss numbing the phrenic nerve. I will report back on his recommendation. I have chemo again next Tuesday and then scans the next day. I will also have an x-ray of my right jaw, as I have been experiencing tenderness there for a few weeks. My infection on both ring fingers has not cleared up, so I am back on an antibiotic today for the next week. Other than that, I feel okay.

Today the temperatures are supposed to reach the mid-80s. It was 85 degrees on our way home yesterday and by the time we reached our driveway at 6:45 p.m., it was 82. If your weather is anything like ours, GET OUT THERE!

Happy April

2010-04-05T08:28:00.002-05:00

I know, I'm a few days late! Belated happy Easter greetings to those who celebrate it. The Easter bunny had eggsellent weather for hiding those baskets yesterday. It was sunny and in the 70s here. Thank you, Lydia and Joe, for having us over for dinner. I can't believe I ate so much! Thanks also to Sue for joining me for lunch on Saturday. I had a wonderful time.

This will be a busy week. Tomorrow is not only chemo but we're seeing a nutritionist for a consult at 3 p.m. That will make for a very long day. Thursday is my appointment with the pain management doctor to discuss numbing the phrenic nerve. I don't know if I want to hear the details, but I suppose I must. I'll report back after that meeting.

The weather has certainly improved my mood of late. I've actually been a bit busier, too. I started crocheting a baby blanket for a friend, did some weeding and some baking, decorated Easter eggs, did some cleaning and other mundane household chores, and took a nice walk on Friday afternoon. The weather is supposed to be beautiful and warm for most of this week. Too bad I have to come into the city the entire week. I guess I'll have to make certain I get out at lunch.

Have a great week!

Low iron

2010-03-31T08:39:00.002-05:00

Found out yesterday prior to my treatment that the nurse decided to test my iron since my hemoglobin counts were falling over time. My iron was low, so I had a 15 minute infusion of iron before I got my meds. I don't feel any different today, but I'm not sure I'm supposed to. Nevertheless, I guess that's another thing they will be watching over time.

One of the assistants decided to take on my nutrition consult problem (first appointment wasn't until May 25) and got me an appointment on April 6 following my chemo treatment. Apparently, each department has its own set of nutritionists (or at least the oncology and radiology departments do) so the assistant contacted radiology and got me an appointment there. I wonder why no one else suggested that...

We have also discovered that my going in for bloodwork on Mondays is a waste of time. The past two weeks I've been working from home, so I didn't have blood drawn until Tuesday morning. We got into treatment faster than if I did the blood draw the day prior. So, no more double sticks. I'll have my blood drawn through my port on the day of my treatment.

I'm wearing my new work slacks today and while they fit, they certainly show how thin I've gotten. Now what happens if the nutritionist is able to get me to gain weight????

The rain has finally stopped and Ed continues to suck up water in the basement. We've experienced our worst flooding in 15 years. The water just keeps coming in from all over the basement, and he's having a difficult time keeping up. He hopes to get it all up today, and there is no rain in the forecast for at least a week. Even when it does rain again, with any luck it won't be four inches worth.

Happy last day of March!

More thoughts

2010-03-27T10:15:00.003-05:00

Well, I thought I would feel better after having vented all that, but I don't so much. I suppose the fact that I have cancer is just hitting me right in the face. I know, it sounds ridiculous. I've known I've had cancer since December 2005. The difference is that it didn't really show. For example, I was in various casts following my initial surgery for about eight weeks, but most of that time I was at home, and no one saw me other than friends and family. When the hair fell out on the back of my head following radiation, I couldn't see it unless I looked in the mirror -- and believe me, I rarely looked in the mirror. Now, I see people looking at me when I'm hacking away and can't stop, and I looked in the mirror on vacation and didn't recognize myself. I finally faced the fact that I didn't know who I was any longer. My hair didn't look like me, my face doesn't look like me, and my body certainly doesn't look like me. It's like a slap in the face, reality looking back at me. It's scary.

So, I cut my hair, finally bought a few new pairs of pants that actually fit, and made some appointments to try to deal with the cough. The pulmonologist wants me to try two more things (his last tricks in the bag) and recommended that rather than returning to the thoracic surgeon at MSKCC, I seek another opinion about whether surgical removal of the tumor is possible. Prior to that, however, I'll be meeting with the pain management doctor to arrange to have the phrenic nerve numbed. Maybe that will give me some relief from the coughing. I'll find out on April 8 what the procedure entails and when we can arrange it.

In the meantime, I'm trying to get moving again. I worked from home this week, so I finished our taxes, got my financial documents back in order, did some weeding last weekend when the weather was warm (today it's 40), finally put the Christmas ornaments away (yes, believe it or not), got some housecleaning done, and visited with friends. I'm trying to catch up on my e-mails and get back to this blog. Now if I can just make some time for doing crafts...

I'm still not happy with the way I feel from this chemo treatment. The fatigue and the muscle cramps are especially trying. I don't know whether the treatment is making the cough worse or if the pollen is now contributing to the irritation. I'm not gaining any weight, but I've leveled off again. Let's hope this is the final level. I don't want to buy clothes again.

I know that I'm complaining, but I actually think it's time. I feel as if I've been trying to be the happy, positive cancer patient for so long that no one has taken my few complaints seriously. It seems to be true that the squeaky wheel gets the grease. We'll just have to see what happens from here.

My pulmonologist gave me a referral to another thoracic surgeon, but we'll hold off on that until after the numbing procedure. He also gave me a referral to a nutritionist, since the next available appointment with MSKCC's nutritionists isn't until May 25. Can you believe that??? In the meantime, I'm trying different foods to see how they taste, although that seems to change from one day to the next. Chocolate and chocolate cake is still out, but brownies seem to have turned around. I suppose it's simply trial and error at this point.

Thanks for your patience and for "listening" to all this venting. I'll try to get back here in a few days.

Thoughts

2010-03-18T13:27:00.002-05:00

I've been reading quite a bit today about people's perceptions of themselves with cancer. All have written that they don't like to be called "victims," and one wrote that he doesn't consider himself "brave" nor likes the constant illusions to war: fighting, battling, slaying, killing, etc. I've been giving this a lot of thought. I have to agree that I do not consider myself a cancer victim. I'm a person who has cancer. I am definitely not brave and I do not view myself as in a fight or war. Usually, I'm a person who is partly scared, partly angry, partly sad, partly glad who is just trying to do her best in the face of this new reality.

It's not brave to undergo treatment or the scans. They are just things that must be done. If I don't have treatment, my cancer will grow and I will eventually die. Where is the choice in that? Research is essential because I have to know what my options are, what treatments are left, what new ones are being studied, what is on the horizon. I need to keep on top of the bills, because despite the fact that insurance covers almost everything now, that doesn't mean that mistakes won't be made -- plus, those referrals always need to be requested and renewed. I need to keep an up-to-date schedule, or I would lose track of who I'm supposed to see when and for what. That's not being brave or courageous -- it's being organized and informed.

I don't know where I want to go with all this, but I needed to get it written down. I feel as if I have hit bottom at this point and I need to make some new choices. The cough has reached the point of truly interfering with my life. It interrupts my conversations, makes me very self-conscious, prevents me from enjoying myself at restaurants, on vacations or with other people, and none of the many medications I'm taking really helps. They all do something, but that something is not enough. I've scheduled an appointment to see the pain management doctor to investigate having that nerve numbed again. It's really my last hope to deal with this issue, and I've put it off long enough because I was scared to try it knowingly (last time I was unconscious) and I was in denial about how bad the cough is.

The nurse/case manager from my insurance company recommended that I see a nutrionist. Despite having maintained my weight during our vacation, I've lost another two pounds since then. Because food doesn't taste right, I just don't feel like eating much of it. Today my boss made me go to McDonald's to get a Big Mac, fries and a shake. Although he never brings it up himself, he's worried about the weight I've lost since November 2008 -- about 20 pounds now. I kept hoping that my taste buds would normalize and I would be able to turn this around myself, but I can't believe that anymore. And because so many things don't taste right, I avoid going out to eat both with Ed or with friends -- and that was something I enjoyed.

Please don't ask me if I'm depressed. Ed asked me that question the other day. I don't think I am. I just think I've isolated myself because of all these issues (plus the fatigue and my various aches and pains), and now I've reached the point where I have to start doing something different -- many things different actually. I'm no longer the person I was before I was diagnosed. That's normal, I suppose, but I haven't improved, especially since the radiation in 2008. Unless I want to live the rest of my life hiding in the house, feeling miserable and tired, avoiding restaurants and vacations, I need to make changes.

More on all of this later...

14 weeks down

2010-03-17T10:39:00.002-05:00

Yesterday was my 14th treatment on this protocol. I continue to experience most of the intial issues: muscle spasms in my calves, feet and hands; fatigue; some shortness of breath; high cholesterol (although the Zetia is doing a great job getting that down); and some acne.

My cough continues unabated and has been worse since Friday. I don't know whether it was the weather (sometimes low pressure systems make me cough) or an allergy exacerbating the cough, but it's annoying. I spent the entire way home on the bus on Monday trying not to cough -- and that was after taking a Benadryl during the day and a Levsin tablet (which dries me up) at 3 p.m. Of course, the cough by that point was a dry, tickly cough, but it's still annoying.

As such, I have finally made a follow-up appointment for a consultation with a pain management doctor at MSKCC (scheduled for 4/8). We will discuss numbing the phrenic nerve as the doctor did during my thoracotomy back in October. That lasted for five days, but perhaps we can get a longer period out of another one. I won't know until I try it again.

The weather here has changed for the better. After four days of rain and wind, the sun is shining. Yesterday the temperature reached 67 on our way home from chemo and today looks to be a repeat. I hope you are able to get out and enjoy the weather wherever you are.

Happy St. Patrick's Day!!!

Wrote too soon

2010-03-12T08:34:00.002-05:00

Unfortunately, my infection is not gone so I have to call my gynecologist again today. We'll see if that means another 7-day round of antibiotics. I also picked up a stomach virus, so I left work early on Wednesday (which I don't recall ever doing in the 11 years I've worked here) and stayed home yesterday. No vomiting, but stomach pains and a few digestive problems. I'm feeling better today, although weak from not eating or doing much.

We are expecting a weekend of rain -- two to four inches in fact. I, for one, plan to stay indoors and do our taxes among other chores. At least it's not snow again. I don't think Ed could stand to shovel another two feet of the white stuff.

Have a great weekend all!

How it works

2010-03-10T10:32:00.003-05:00

While I was in treatment yesterday, Dr. K's nurse came in and handed me a chart, which shows how they measure response under this protocol. The dimensions of up to five tumors per organ are added together to get a baseline "long diameter." My baseline from my scans of Nov. 25 was 104. The dimensions of the tumors from each subsequent scan are compared to the baseline. If it exceeds the baseline, I would be out of the trial. My first scans totaled 96 and my second 97, so I'm down 7% from the baseline but up 1% from the lowest measurement. Hope this makes sense.

I finished the antibiotic for my infection and that seems to be cleared up. My cough continues unchanged despite all the meds I'm taking. We'll have to see if there are any other options when we see the pulmonologist later this month.

Today I have a very upset stomach. Can't think of any reason why, since the chemo doesn't cause nausea. Maybe I picked up a bug. This certainly won't help me gain weight!

It's another beautiful day, but the rain is on its way. I hope to get out even for a few minutes to enjoy the sun and warm weather at lunchtime. Hope you are having good weather wherever you are.

Note: I wanted to clarify that the metastases in my lungs are leiomyosarcoma cells that took up residence there. (This also holds true for the metastases in my skull and pelvic bone.) I do not have lung cancer. I have cancer in my lungs, and that cancer is LMS. While it is possible for a cancer patient to develop another type of cancer, the metastases are always the same type as the original cancer. They are just growing in a different place. For example, if a man has prostate cancer and it metastasized to his liver, the cells would still be those of prostate cancer even though the tumors are now in his liver. It is not liver cancer.

Passed but barely

2010-03-09T09:23:00.002-05:00

While most of my metastases are stable, the radiologist believes that there is one new lung nodule and two that have grown slightly. Dr. K believes that it is a possibility that the "new" nodule was missed on a previous scan and the measurement of the other two could be different because of a different view. She asked if I were comfortable doing another round and I said that I was. I would rather see a few comparative scans before believing that anything grew. So, today I start the third cycle and I'll be scanned again in six weeks.

It seems that this combination of drugs will provide me stability, but likely not reduction in the size of my mets. We'll see what happens after the next six weeks. I guess I need to speak more firmly to the evildoers.

Let's keep up the positive thoughts and not let this get us down. I'm not through fighting yet.

Scans completed

2010-03-08T12:11:00.002-05:00

I had my CT scans this morning and everything went well. Now that I'm having them done at MSKCC, they access my port so there is no more worrying about getting poked in the back of my hand or wrist with a needle. If they didn't have to keep the temperature so cool because of the equipment, I wouldn't have a problem, but my veins seem to disappear when I get to the imaging center and have to put on one of those flimsy gowns. I'll get the results from Dr. K tomorrow. I'm still keeping all my body parts crossed for good results.

The weekend was quiet. I had my Zometa infusion on Friday and after all the rushing around after vacation, plus two chemo treatments in five days, I was very tired. I got my bills paid and my financial paperwork in order, but still haven't started our taxes. I guess that's next weekend's chore. I got my hair cut, because the big poofy curls were making me nuts and I felt every time I looked in the mirror that I didn't recognize myself. So far, the reaction has been good, although a few people seemed less than excited about the change. I'll have to post an updated photo one of these days. Otherwise, I relaxed and even sat out in the sun for a while on Sunday, soaking up the rays and getting some vitamin D.

I was incorrect when I stated last week that I'm seeing the radiation oncologist at the end of this month. We moved it to May.

Nothing else new to report. I'll be back with the results of my scans.

Second cycle completed

2010-03-04T11:06:00.002-05:00

It's hard to believe, but I've finished the last treatment of my second cycle. On Monday, I will have my CT scans, and on Tuesday we'll find out how many more of the evil doers have bitten the dust. That will be followed by the first treatment of the third cycle. After six weeks, I'll be scanned again.

Treatment on Tuesday was fine, although the wait was too long again. We arrived at 7:45 and didn't get into the chemo suite until almost 11:30. No matter what we do to try to speed up the process, something gets screwed up almost every time. Once we waited two hours, but every other time it has been 2-1/2 to 3-1/2 hours. What a total waste of time. If this keeps up, I'll likely start coming back to the office after my meeting with the nurse or Dr. K and let them call me when my meds are ready. Sitting in the waiting area is booooring.

Other than continuing to cough, being tired as I try to get back into the swing of coming into the office daily, and fighting a vaginal infection, I'm feeling pretty good. My Zometa treatment was cancelled last week due to snow, so I'll be going to the NJ facility for that on Friday. Later this month, I'll have my 6-month brain MRI and see the radiation oncologist. I also have a follow-up appointment with my pulmonologist later this month. We'll discuss how the various medications are working on the cough (not so much) and see if there are any options left.

There is no snow in the seven day forecast. Hard to believe after all the storms we have experienced this season. Spring is right around the corner, but I wouldn't put it past Mother Nature to have another one up her sleeve. Even though I really like snow, I'll be very happy to see the flowers this Spring!

I'm back

2010-03-02T10:06:00.002-05:00

Sorry for the long silent period. We took a little vacation and as soon as we returned, I had chemo. It was not a great transition from restful to craziness, but it had to be done.

The chemo continues to go well, and next Monday I have my scans. I still feel that this treatment is working, and the extra bonus is that I can go at least a week without shaving my legs. Ladies, you know how wonderful that is!

My Zometa infusion that was scheduled for last Friday was postponed due to the snowstorm -- our third big one of the season. I was rescheduled for this Friday, and thank goodness no new storms are on the horizon.

Nothing else new to report. I hope that the sky is sunny in your part of the world.

I'm here

2010-02-18T07:15:00.002-05:00

Sorry I haven't written, but things have been busy. Will explain soon. I'm feeling pretty well, so no worries on that front. Thanks for your patience!

Laughter is the best medicine

2010-02-05T14:31:00.002-05:00

Feeling a little punky today. My nose has been stuffy/runny for the past two days and I'm tired. I've got lovely little red acne dots all over my cheeks, and my skin is extremely dry. I'm trying to eat despite not having much of an appetite, and it doesn't help that everything tastes just a little bit off. Not necessarily bad, just not the way it's supposed to taste. I know, however, that I can't afford to lose any more weight, so I just keep on spooning or forking food in my mouth. I don't think I've ever enjoyed food less than I do now. That's almost as sad as losing my taste for wine.

On a brighter note, we are looking forward to an overnight snow storm. The jury is still out on how much will fall (estimates range from 3 to 12 inches), but we are fully stocked. As long as we have electricity and an internet connection, we'll be happy and snug.

I received this video today and got a good laugh out of it. There is no virus attached (for those of you who might be understandably concerned) so please watch it and enjoy. I would love to see this on television, but that will never happen in the US. http://link.brightcove.com/services/player/bcpid1125919467?bctid=63259762001

Happy weekend everyone!

What a day

2010-02-03T10:33:00.002-05:00

Having my bloodwork done on Monday shaved about 30-60 minutes off our wait time yesterday. We were actually on the road toward home by 1:30, and it's a good thing. After making two stops and having lunch, I was in bed by 3:45, watched 40 minutes of television, laid down for a nap, and that was that. I got up at 7 p.m. to take my cholesterol pill and brush my teeth, and then went immediately back to sleep. I don't know why the meds hit me so hard yesterday, but I was in bed for 12-1/2 hours!!! I guess I needed it.

We woke up to about an inch of snow this morning, but the sidewalks and roads were clear in the city and the snow had stopped by the time I got here. The temperatures are supposed to be in the upper 30s today, so anything that's out there will be melted by the time I head home. Another storm is expected Friday night into Saturday morning, but since they didn't predict this snow until yesterday, I will wait until I actually see snow.

Sunday marks the fourth anniversary of my ankle surgery. I saw the surgeon for a follow up on Monday and everything looks fine. Dr. Healey is my favorite doctor. We discussed my rib fracture and why it might be bothering me after all this time and also talked about the clinical trial. He is the only doctor I see who treats me as a human being first and a cancer patient second. He claims it's because he listens to his patients and learns from them. If only all of them were like that...

Quite a week

2010-01-27T11:48:00.002-05:00

Monday was a perfect example of a day when I should have stayed in bed with the covers pulled over my head. It began with pouring rain and wind gusts up to 50 mph, making my trek from the bus to the clinic at Memorial Sloan-Kettering on 53rd Street an adventure. When I arrived and finally got up to the lab, I was informed that the paperwork for my bloodwork wasn't available yet so I would have to come back. The tech told me to have the nurse leave my IV in from my CT scans (for the contrast injection) and a nurse in the chemo suite would be able to draw my blood when I returned. (We weren't using my port because I thought they needed to test my clotting factor. When they test that, they can't draw blood from the port.)

I couldn't wait for the MSKCC shuttle up to the new Breast Cancer Center because it would be leaving at 7:50 and my arrival time for my CT scan was 7:40. After standing in the rain for five minutes, I managed to grab a taxi and made my way uptown. I checked in and was given the solution I had to drink. Normally, you drink it over 45-60 minutes and then you get scanned. Hence, my arrival was scheduled for 7:40 with scans scheduled for 8:40. By 9 a.m., I was wondering what the heck was going on. I was finally called in at 9:25, and the nurse couldn't find a vein in my elbow, so she placed the IV in the back of my hand. That was okay as it didn't hurt -- then. When I finally got in for my scans (turns out one of the machines wasn't working that day) and they started injecting the contrast material into my vein, I started yelling. I have never felt any pain when the contrast was injected, but according to the technician, because the nurse used such a small vein, the contrast material was pushing against the wall of the vein and causing the pain, which went on for about three minutes. Doesn't sound like a long time unless you are waiting for the pain to end.

I finally finished my scans and left with the IV still in place. I had to walk a block and a half to the main hospital to pick up the shuttle, and was soaked from the waist down by the time I reached it. After 20 minutes of being stuck in traffic, I finally returned to 53rd Street and made my way to the chemo suite to have my blood drawn. Guess what? The nurse couldn't get a blood return from the IV. She said that often when contrast material is given (especially in such a small vein), it is so thick it prevents blood return. She checked the paperwork and discovered that my clotting factor wasn't being tested, so she drew blood from my port -- which I could have used for the scans as well, preventing getting stuck twice and eliminating the pain portion of the scan. At least I know that from now on, I can have my port accessed for the scans.

I hadn't eaten because I thought they were testing my cholesterol again (they weren't), so I finally got something to eat at 11 a.m. I headed for the bus back home, walked in the door, and got hit immediately with the diarrhea problem that the drink sometimes causes. At least it didn't hit me on the bus!!

Of course, it all turned out to be worth it. The large tumor in my right lung is stable as are most of the other lung mets. A mass in my chest, near but not in the lung, decreased the most. Two small possible metastases in my liver, seen for the first time on the November scans, are gone. The tumor in my pelvic bone that was radiated in November 2008 is stable. Yay! My rib fractures continue to heal, and the only one still bothering me is the one on the right side. That feels slightly better than when it started up almost three weeks ago, but there isn't significant improvement.

All in all, I'm very pleased. Apparently that large tumor is not going to shrink without a fight, so we'll be concentrating our "death to evildoers" thoughts toward that one for the next six weeks. This cycle will end on March 2, and I expect my scans will be scheduled for March 8.

Thanks to all for your e-mails and comments. I was truly touched by all the responses. You really do follow this blog, don't you??!!!

The results are in...

2010-01-26T08:44:00.002-05:00

8% shrinkage!!!!!!! The large tumor in my right lung is unchanged, but overall I had 8% shrinkage in my tumors. I haven't gotten a copy of the report yet, but will post more once I've had a chance to read it. The news was so good, I wanted to get it up here ASAP. We are currently waiting to be called in for treatment (cycle 2, week 1), so I will post more later today or tomorrow.

Thanks for all the positive thoughts and prayers!

First cycle completed!

2010-01-21T10:02:00.000-05:00

One cycle down, who knows how many to go! Everything went fine on Tuesday. It was good to have Ed back with me for company, and the pharmacy was on the ball. We only waited 90 minutes for the meds to be sent up to the chemo suite. My cholesterol continues to come down, albeit much more slowly, and while my glucose was up, it was well below the limit. I'm scheduled for scans on Monday and I'll be seeing Dr. K on Tuesday to hear the results. The nurse informed me that the two patients who started the trial the week before I did both had positive results. Sounds good for the rest of us!

Last Friday I had my Zometa infusion in NJ and spoke with Dr. Windsor about Ifosamide. He believes that it is the next treatment appropriate for me should the clinical trial fail. Although I don't agree, he suggested we table the discussion for now, since he believes the trial is working and thinking about another line of treatment is not something I need to be doing at this moment.

I continue to deal with the same side effects: acne, dry nose, eyes and mouth, and some fatigue. Otherwise, I feel pretty good.

Our broken treadmill was replaced, so now we have a treadmill to use. Unfortunately, there are some parts that need to be replaced because the incline mechanism is holding up, but we can still use it in the meantime.

I plan to take down all the holiday decorations starting today. I really enjoy the lights and the sparkles, so I tend to keep them up as long as possible, but even I think it's getting silly now. The house is going to look so bare...

Pain in the chest

2010-01-15T09:25:00.002-05:00

This fractured rib is really painful today. I don't know why, since I coughed yesterday about the same amount as every other day. The worst part is there is nothing that can be done. I know that sometimes your ribs can be taped so they don't move, but this is in an impossible place to tape. So, I'm trying all my meds to keep from coughing too much and with any luck, it will soon feel better.

I forgot to mention that in addition to the raised cholesterol and fatigue, I've been experiencing very dry eyes, nasal passages and mouth. When I wake during the night, my tongue is literally stuck to the bottom of my mouth and my nose bleeds every time I blow it (which is frequently these days). Saline spray helps the nose a bit and drinking lots of water during the day helps my mouth, but it's a bit annoying. I'm also getting acne. Acne at 47!! Thank goodness they are little pimples that last a few days and disappear. One of the nurses told me that another patient in the trial had a huge pimple appear on his face. Would I prefer one huge one to five small ones? No, I think I'll stick with the small ones. These problems are worth the price, though, as long as the treatment is working.

It's hard to believe that next Tuesday finishes the first cycle. I'll be scanned on Monday the 25th, get the results from Dr. K on the 26th and then start the second cycle the same day. We'll see how badly the evildoers have been beaten down.

I'm thinking about purchasing a small humidifer for the bedroom so that my nose and mouth don't get so dried out overnight, so I might take care of that this weekend, and it's time for a root touch up. Other than that, no real plans for the weekend. My boss leaves on Wednesday morning for Montana, so I'll be back home for a short while. It will be nice to wake up without an alarm again.

Have a great weekend!

Late day

2010-01-13T08:04:00.002-05:00

Yesterday's appointment with Dr. K was scheduled for 1 p.m., so I went in Monday morning to have my bloodwork done. It turns out that because I am in the clinical study, I cannot participate in the "Chemo Ready" program (you have your bloodwork done the day prior, then call the pharmacy two hours prior to arrival the next day and your meds are ready). However, if I have the bloodwork done the day prior and call the nurse, she will call in to the pharmacy ahead of time and the wait should be shorter. Yesterday I only waited an hour and part of that was due to no room in the chemo suite.

While I was seeing the nurse, I mentioned that my chest hurt where I had experienced pain following my thoracotomy, only now it was worse. As you may recall, the radiologist had reported that my last chest x-ray showed a rib fracture on the right side, but when I contacted the thoracic surgeon's office, I was told it was scar tissue. Well, I had another chest x-ray yesterday, and the radiologist once again said I have a rib fracture that is healing. Apparently last Thursday night, I coughed in such a way that I aggravated the area, which is why I am experiencing pain again. There is nothing to be done for a rib fracture, so I am hopeful that the pain will recede quickly, although it's been almost a week now without any relief.

The treatment went fine, but it was strange to be there without Ed. Since the treatment was starting so late, I knew it would be faster to take a bus out of the city rather than driving out, so I convinced him to stay home. I had no problems navigating the subway and Port Authority to get to the 5:20 bus, and I enjoyed a good nap on the way home. By the time I arrived at 6:45, I was ready for bed, so I took my Zetia and hit the sack -- no dinner, no conversation, no nothing. I am still sleepy this morning, but am feeling pretty good. Speaking of Zetia, it really does work. My cholesterol continues to drop. It is now down to 249 from a high two weeks ago of 319.

Friday afternoon I see the NJ oncologist and have my Zometa infusion. I want to discuss with him his alledged agreement with Dr. K that Ifosamide would be the next treatment option for me. I can't imagine what they were thinking, and I'll be interested to hear what he has to say.

I told Dr. K yesterday that I believed this clinical trial was working, and she actually laughed at me. I told her I wasn't kidding, that I really believe it is working and she looked at me as if I were nuts. Then she told me that another patient she has on the trial told her the same thing. I wonder if she laughed at her, too. Not a big surprise that I would like to change oncologists, huh?

On a non-medical note, the temperatures are finally supposed to climb out of the 30s and reach the low 40s starting tomorrow. I don't know how long that heatwave is going to last, but it will be nice to have a reprieve of sorts. I hope the weather is improving wherever you are!

Happy 2010!

2010-01-06T09:44:00.002-05:00

So how do you refer to the current year? Is it twenty ten or two thousand ten? I was using the latter until I realized that until the change of the century, I referred to the date as nineteen ninety-nine, not one thousand nine hundred ninety-nine. Still, twenty ten sounds weird to me. Whatever you call it, I hope it's happy, healthy and full of fun, laughter and good friends.

I completed week four of the clinical trial yesterday with no issues. As mentioned, I am now on Zetia for my cholesterol, and I can report that it works. After three days of taking it, my cholesterol dropped from 319 to 269. I'm also pleased to report that my glucose is also down, so perhaps I'll be lucky and avoid having to take any medication for that. The nurse said I don't need to worry about it unless it exceeds 120. She also informed me that since the high cholesterol is caused by medication, changing my diet won't help so I guess I can stop worrying about eggs and cheese, among other things.

We waited 2-1/2 hours for the medication to be prepared, so I'm going to try to work around that in the future. Since they need to draw blood from my arm anyway (using my port requires flushing it with heparin first and that interferes with the clotting factor test), I'm going to go in the day prior and have the bloodwork done. Then they can begin to prepare the meds as soon as the pharmacy opens on Tuesday morning and our wait should be reduced (theoretically) to almost nothing. I'll let you know next week how that works out.

It's still mighty cold here in the northeast. The temperatures are supposed to be in the mid-30s today and tomorrow, but then we are expecting some snow activity Thursday or Friday, and it's supposed to be bitterly cold over the weekend. I think I'll be staying inside!

Last treatment of 2009

2009-12-30T11:25:00.002-05:00

Yesterday's treatment went fine, although we waited 2.5 hours to start it. I believe it was a combination of delays in the pharmacy as well as in the chemo suite. I asked about the status of the meds at 11:15 and was told they hadn't been delivered from the pharmacy, but 10 minutes later, despite not seeing the delivery guy, they called me in and had already hung the bags on the IV pole. Interesting. The doctor halved my Benadryl dose and I had no reaction this time. Maybe it was that after all. I also got my H1N1 shot, so that's finally taken care of.

My cholesterol reading yesterday was 319. Yes, you are reading that right. Because the cholesterol is so high, I'm being started on Zetia, a cholesterol lowering drug. Isn't it nice that I have to take a drug to lower a reading that is up only because of another drug? If they have to add insulin to that, I'll be a pill-popping momma. My glucose is also rising, but it's not in the danger zone yet. It will probably hit that mark in the next few weeks. I've gone from a woman who used to take ibuprofen occasionally to deal with back or leg discomfort to running a pharmacy in my own home! I have four meds for my cough, now one for cholesterol and who knows what's coming next. Lucky me. I'm starting to feel like my mother with her weekly pill box.

Other than that, things are relatively quiet. I'm feeling tired today, but I'm working from home, so maybe I'll be able to sneak in a nap after lunch.

Ed and I send all of you our best wishes for a wonderful 2010. May it be a year filled with laughter, love, joy, and the company of good friends.

Counting down the last days of the decade

2009-12-28T07:49:00.002-05:00

I hope you all enjoyed either a very merry Christmas or a lovely long weekend. The holiday was bright and joyful in our household, with gifts given and received and a short but sweet visit with Mom. The only "damper" on the weekend was the downpour we received starting Friday night through Saturday. That melted the two feet of snow in the yard and caused our basement to flood. Ed was up all night Saturday night trying to keep ahead of the ever-growing lakes that appeared in three places. He finally got them under control late Sunday morning. It was the worst flooding we've experienced in the 14 years we've lived here, and we hope it remains the worst. Bailing gallons of water every hour is not fun.

As we close out the year, if you are considering making some last minute charitable donations to deduct from your taxes, I ask you to consider Cycle for Survival. A man we have come to know very well at Memorial Sloan-Kettering, Stephen Layne, is leading two teams to raise money for cancer research at the hospital. You can read more about it and make a donation online at www.cycleforsurvival.org. Stephen's teams are Makattack and MakattackII. Any amount would be welcome, but no pressure. I know we are all struggling this year.

Week three of my clinical trial is tomorrow. I'm keeping my fingers crossed for no Benadryl reaction this time. I can feel the medications working to kill off those tumors. I'll bet they don't know what hit them!

Merry Christmas to all and to all a good night!

2009-12-24T10:11:00.002-05:00

Ed and I send our best wishes to all of you for a very merry Christmas! And if you celebrate something else, then very merry that holiday too!

My treatment on Tuesday went well except for a strange reaction to the Benadryl, which I've never experienced before. Toward the end of the 20-minute infusion, I became very lightheaded, a feeling that persisted for about two hours. The nurse insisted that was normal, but I've been treated with Benadryl many times before and only once had a problem (and that was due to too high a dose). We had to take a cab back to Port Authority (you can imagine what that cost mid-afternoon on a gridlock alert day) rather than the subway because I couldn't stand for very long. By the time we got home (more than two hours on the road in traffic), I felt much better. I hope that was a one-time-only occurence.

We still have snow on the ground, although it's due to rain here tomorrow night into Saturday, so it will be a white Christmas after all.

Wherever you are and whatever you do, may you enjoy the love and comfort of friends and/or family, and may the joy of the season fill you with hope and the promise of a better tomorrow.

Made it in

2009-12-21T09:51:00.002-05:00

Despite the fact that the plows have not yet visited our street, Ed was able to get me to the bus stop this morning and I made it into work. There is not much snow in the Big Apple -- just accumulations at the curbs where the plows piled up the snow and the sidewalks were cleared. Otherwise, you would not know that the city got about 11".

Ed is busy clearing out the backyard this morning. There was some melting back there yesterday when the temperature rose to 37 degrees, and his unscientific measurement today was 18". He is going to take another measurement out front (which faces north and get very little sun in the winter). According to the New York news stations, Jackson received 23.5" but I'm curious to know what we have in our yard.

It's a short week. Chemo tomorrow, which hopefully will go faster than last week. The market closes at 1 p.m. on Thursday, so I will be working from home. We have a party to go to this week and my mom is coming on Friday to stay overnight (I guess that means I have to clean up the spare bedroom on Thursday!), but otherwise it looks relatively calm. I might bake another batch of cookies on Thursday -- did the sugar cookies yesterday -- but all the presents are wrapped and now that the tree is done, I guess I can relax. I hope you are caught up with all of your chores and can take a day or two just to enjoy the season.

It's beginning to look a lot like Christmas!

2009-12-20T12:48:00.006-05:00

Just a quick update as I am between chores. Yesterday's snowstorm dropped 24" on us as you can see below.

Here is Ed between the cars in the driveway. He had already cleaned the roof of my car twice yesterday (foreground):

Here's the front of the house. It's difficult to see, but in the foreground is where Ed has shoveled out the driveway and that white blob in the center of the photo is an Adirondack chair!

This is a view of the backyard. You can see the snow piled up on the tables and our fish pond is completely covered.

It turned out to be the perfect day to finish the tree!

So far, pretty good

2009-12-17T10:25:00.002-05:00

Yesterday I had a follow up with my pulmonologist, who continues to surprise me with his outside-the-box thinking and his treatment of me rather than just my cough. The more we talk, the more questions he has and the more ideas he generates. He has given me a prescription for something to control mucus production, thinking that may help when the cough gets really bad. I'm checking with the research assistant at MSKCC to make certain I can take it before I fill the prescription. We'll see how it goes.

Last night, I woke up around 10 p.m. with a headache. At 1 a.m., it was still there so I took two ibuprofen. At 3 a.m., it was still there. At 5 a.m., I took two Tylenol, and now at 10:30 a.m. it's still there although not quite as painful. It almost seems like a sinus headache, but my sinuses are fairly clear. I might try some Benadryl next, just in case it is a sinus problem. I know it's not my blood pressure, as it was a little higher than normal yesterday but not dangerously so.

My head hurt so much this morning that my stomach was -- and still is a bit -- upset, but I made sure I had breakfast. My weight has leveled off at 125, and I want to make certain I don't dip back below that mark. Of course, since this new treatment can affect my glucose levels, I'm going to have to re-evaluate my eating habits. As I've probably mentioned, I've been eating relatively high calorie foods, most of which contain a lot of sugar. Since I really don't want to add more medications to my ever-growing list, I'm going to have to start watching my carbs while maintaining my weight. That's a tough thing to do, especially at this time of year. Especially since I make delicious cookies, if I do say so myself. I'm just glad I'm not home around them all day. Ed's not so lucky!

This morning it was 23 degrees when I arrived in the city and the wind was blowing. Not a good day to be out and about, despite the fact that the sun is shining. Winter arrives on Monday, and winter weather has preceeded it. Time for those flannel sheets.

Finally...

2009-12-16T08:28:00.002-05:00

Monday was a day of frustrating ups and downs. After my post mid-morning, I received a call from Dr. K that she couldn't get me registered without my having bloodwork AGAIN at MSKCC. She wasn't sure that even having it done there with better results would mean she could get me registered in time for treatment on Tuesday. I hustled myself down to the office for my third needle stick in a week and called her office immediately upon completion to get the ball rolling. By 4:15, I still hadn't heard anything so I called her office. At 4:30 I received the news that I was registered and could start the trial Tuesday morning. Of course, I never did find out what the hCG level was from that final blood test.

We reported yesterday morning at 8:00, I had my port accessed and my blood drawn by 8:25, saw the research assistant at 8:55 and then sat in the waiting room until 11:20 as my glucose levels were checked and then the medications were prepared and tested. (I was assured that the process would be much quicker in the future. We'll see.) I started with the A12 at 11:30 for one hour and then had a half hour off. At 1:00, I received a 20-minute infusion of Benadryl and at 1:30 I had a 30-minute infusion of temsirolimus. We were headed home a few minutes after 2:00. Other than being very sleepy from the Benadryl, I felt fine and still feel good this morning. The chemo nurse informed me that after two weeks, two of the other participants in the trial had had no complications or side effects. Sounds like promising news.

This afternoon I'm off to the pulmonologist for a follow-up. He'll want to know how the Symbicort is working for me. The answer is that it's helping a bit, but the cough lingers. I can't believe my fellow busmates haven't thrown me off yet.

I hope the holiday preparations aren't wearing you down. I still need to finish that tree, and it's good to know that I'll feel good enough this week to work on it.

Good to go?

2009-12-14T10:47:00.002-05:00

So far, I'm in unless I hear something back from MSKCC today.

Dr. K called me this morning "in a quandry" because my hCG level was higher on Friday -- up to 12. According to Lab Corp, I should be four weeks pregnant. I assured her that unless this was another immaculate conception and Christmas was going to happen all over again, being pregnant is impossible. She told me she would pass that information on and someone would call only if I were not going to start the trial tomorrow. I would write that we are good to go, but I won't believe it until the IV is hooked up to my port.

According to my research, there are other cancers that can cause that level to be high, but 12 is not high. 10,000 is high. Dr. K told me the level was too low to be of any concern about any other cancer. Since I actually read that from other sources, I believe her. If I hadn't read it elsewhere, I'm not sure I would take her at her word. BTW, the urine test showed I was not pregnant, but they go by the blood marker, not the urine test. (Then why do it???)

On a brighter note, I got a lot done during my four days at home. I baked two batches of cookies, made split pea soup, finished up my shopping, finished decorating (except for the tree, but I've made a good start), purchased and sent out the rest of my cards, and started wrapping. I'm hopeful that I will feel well enough following treatment that I will be able to work on the tree for a bit each evening. We'll see how that goes.

So, with any luck my next post will be about how the treatment went. Keep your fingers crossed!

Another bump in the road...

2009-12-11T08:57:00.003-05:00

Yesterday I received a call from Dr. K's office informing me that one of my blood counts exceeds the level for the clinical trial's protocol. (Each clinical trial has very specific requirements so that the participants are as similar as possible, making it easier to track the results.) In this case, my Beta hCG count is too high. Strangely, this is a hormone that rises during pregnancy, and there isn't a chance that I can be pregnant. First, the other blood marker for pregnancy shows I'm not, and second, I'm either in menopause or in chemo-induced menopause and have been for more than a year. I was told that this marker can fluctuate from day to day, so I have to have that test repeated today locally with the results sent to MSKCC. If it's still above the limit, I can't start the trial. Isn't life difficult enough? Why do I constantly have to deal with these bumps as I travel through life? Just once I would like to go back to life pre-cancer, when I didn't spend my time worrying about tests and side effects and doctor's appointments and scans and bloodwork and surgery and insurance.

I'm confident that if this blood test doesn't show the count under the limit (which I believe is 9.5 and mine was 9.7), the next one will, but it will delay my treatment again. That we really don't want.

I have also decided that unless I am at the end of my rope and there is no other treatment option available to me, I am not going on Ifosamide. If Dr. K doesn't agree, I'll have to find another oncologist. I'm already seriously thinking about going to Dana Farber for a second opinion, although Ed would really like to go to MD Anderson in Houston. I don't have a lot of faith in her any longer, and I don't believe she thinks about me, who I am, what I do, and how I want to live my life when she decides on my treatment. I feel that she sees me as a LMS patient, not as Karen, who happens to have LMS. There's a huge difference in that perspective.

On a brighter note, other than the tree, the house is decorated and the first batch of cookies have been baked. Let the holiday season begin! Happy Hanukkah!

And Amy, I loved that "Duh!"

Let the trial begin

2009-12-09T13:39:00.003-05:00

I went in for bloodwork and an ECG yesterday (EKG is the European term -- and obviously what most places other than MSKCC use). According to my lab results on the website, my counts are all good and my cholesterol is down to 237. It's definitely not from better eating habits, so it must be from being off the Gemzar. Anyway, I'm scheduled to begin the trial next Tuesday morning, the 15th. The treatment takes three hours in total -- one hour for the first drug, then a one hour wait, then 30 minutes for the second drug, plus pre-treatment bloodwork and pre- and post-treatment medications for nausea and the like. I'll have this schedule every Tuesday for six weeks, and then they will scan me. Let's keep our fingers crossed for zero side effects and excellent results.

I also met briefly with Dr. K, who told me that she would put me on Ifosamide if the trial didn't work for me. My immediate reaction was "no," but I didn't want to get into it then because it was late in the day and this trial is going to work. However, she and I will have to have a chat at some point, because I cannot see a reason to get on that drug. Ifosamide is given by IV over three to four days every three weeks. While it can be infused on an outpatient basis using a home health service, it is usually given in the hospital. I don't understand why she doesn't consider my lifestyle -- such as the fact that I still have a fulltime job -- when she "decides" on a treatment. I also think she is being overly aggressive at this point, and that there are other treatments available to me that I would prefer to try first. I plan to discuss this with my NJ oncologist, and I have asked other LMS patients for their opinions on this matter. I'll post back with what I find out.

I'm looking forward to working from home the next two days. In between my work, I hope to get started on some baking and wrapping. Since there is still a treadmill sitting where the tree belongs, I don't think I'll be getting to that this weekend, but I won't count it out. Maybe the person who bought it will actually come and get it in a timely manner!

Here's to no 4 a.m. alarm for the rest of the week!

Two updates - updated

2009-12-07T14:00:00.004-05:00

The genetic testing on my tumor has been completed. They wanted me to start this Friday, but I pointed out the two holidays that fall on Friday this month. Dr. K's assistant will check, but assumes there will be no problem with me starting next Tuesday, December 15. I have to go in tomorrow for bloodwork and an ECG, and then I'll be good to go.

I forgot to mention that in my CT scan report, the radiologist mentioned that I was post-thoracotomy with a right rib fracture. I've been wondering since surgery why the area under my right breast was extremely tender. At first I assumed it was a muscle issue, because the Steristrips over the incision were pulling my skin toward my back. After those were removed, I then assumed the muscle was simply recovering from that pull. After a few more weeks, I gave up trying to second guess it, but now I know the reason. Wouldn't it have been nice if someone (namely, the surgeon) had mentioned that I had a fractured rib and that it would be painful/uncomfortable for quite some time??? I just don't understand doctors and how they pick and choose the information they share with their patients. Maybe it's me who's crazy! Anyway, I sent a note to Dr. Flores's office mentioning that no one told me about the rib fracture (and they took three x-rays post-surgery, so they had to have known). I'll let you know if I hear anything back.

CT scan results

2009-12-07T11:08:00.004-05:00

During my Zometa infusion, I chatted with my NJ oncologist about my scan results and obtained a copy of my report. As expected, there was growth in all my lung mets, and there are two small spots in my liver that are "suspicious for metastatic disease." I am not going to concern myself with these two lesions, unless they continue to appear after the first cycle of the clinical trial.

Speaking of which, I have not yet heard from Dr. Maki's office about the start of this trial. I assume they are still awaiting the results of my tumor testing. I was hoping to hear something today so I could start tomorrow, but unless they call in the next few hours, I don't think that's going to happen. Looks like a potential start date of December 15.

It's hard to believe, but it was four years ago today that I had my bone biopsy, which eventually led to my diagnosis and this long, strange trip I've been on. Thanks for coming along for the ride. Your companionship has made the trip much easier to handle.

Hope you all had a good weekend and have a great week!

An early Christmas gift

2009-12-03T14:55:00.002-05:00

As Ed just said, "There really is a Santa Claus."

Through no help from Oxford or Memorial Sloan-Kettering (other than an offhand remark at my appointment there last week), I just discovered that since July 1, MSKCC is an in-network provider for my insurance plan. Hallelujah!!! That means that other than a $20 co-pay for seeing a doctor, all my visits, treatments, bloodwork, scans, etc. will be covered. And because the hospital obtained pre-certification for my surgery, that (and the associated doctor's bills) is covered 100%. While that doesn't help me with all the money I paid out at the beginning of the year for November 2008's radiation treatments, it will certainly benefit me down the line. I have been hoping for this for four years now, and it's finally come true.

So for all of you who think you're too old to believe, believe it. Santa Claus exists!!!

Waiting...

2009-12-02T14:33:00.003-05:00

Still waiting to hear from the research assistant in Dr. Maki's office about starting the trial. As of yesterday, they were awaiting the results of the testing on my tumors. Once they receive the report, she said I can start right away. I'll be having my treatments on Tuesdays, since Christmas and New Year's Day fall on Fridays.

I tried to get a copy of my scan results, but the NJ oncology facility's policy is not to fax out reports that weren't ordered by the doctor from there. Since MSKCC will not fax out copies either (you have to see a doctor to get a copy), I'll wait until Friday when I have a Zometa treatment to get a copy of the CT scan results.

I contacted Dr. Yamada's nurse (he's the radiation oncologist who did my treatments in November 2008) to alert him that Dr. Keohan had ordered an MRI of the brain. Since he is now following up with me every six months, and this scan was done after four months, I thought he might want to take a look at it. If everything looks good, I should be able to wait another six months before having another MRI rather than having another one in February. Anything that reduces the number of tests I have to have makes me happy. She will let me know once he has reviewed the report and the films.

Otherwise, nothing new to report. Once I have the results of the CT scans, I'll be back!

More details

2009-11-29T12:38:00.002-05:00

The clinical trial is currently open to six participants. My tumor is being tested for the IGF-1R marker. Once the results are back, I'll have to go back to sign another consent form, have blood work and an ECG. I should be able to start within a week or so after that. I'll receive two medications via IV once a week: A12, which blocks IGF-1R, a protein in cells that helps keep tumors alive, and temsirolimus, which attacks the protein mTOR. It will take an hour for the first infusion, then I wait an hour, then the second infusion takes 30 minutes. I don't know what type of meds they will give me prior to and following the infusion, but apparently they will be giving me something to reduce side effects.

Ah yes, the potential side effects. For A12, the likely side effects are high blood sugar (because it targets an insulin-like growth factor) and fatigue. Some of the less likely side effects: allergic reaction, decreased white cell count, anemia, weight loss, acne, vomiting, or seeing flashing lights or floaters. Some symptoms seen in people who received A12 in other studies: diarrhea, muscle spasms, chest or abdominal pain, abnormal electrial function of the heart, and my personal favorite, Posterior Leukoencephalopathy Syndrome, which are changes to the brain that show up as confusion, change in eyesight, seizures or other symptoms, which are usually reversible but in rare cases are potentially life-threatening and may lead to longterm brain damage. Yay.

For temsiroliumus, the likely side effects include nausea, diarrhea, mouth sores (Dr. Maki mentioned this one specifically), high cholesterol, and rash. Some of the less likely: high or low blood pressure, hair loss, constipation, difficulty swallowing, infection, nosebleeds, depression, cough (just what I need), insomnia, inflammation of the pancreas, change in vision, fluid buildup in the chest, and blood clot formation, especially in the legs, which can travel to the lung. Also making the rare but serious list: heart failure, kidney failure, development of fluid around the heart, bleeding into the intestines, lungs or brain, and liver failure.

Now, as my friend Kay relates, they need to tell you every potential side effect by law. That doesn't mean that any of those side effects will occur. Other than high blood sugar and mouth sores, Dr. Maki and his research assistant didn't mention any other side effects seen in the phase I trial. Still, it makes me (and Ed) nervous. They will be watching all of us closely for any side effects, and if anything happens, I can always drop out of the trial. Let's keep our fingers crossed that I don't even have the likely side effects.

After the first cycle (six weeks per cycle), we will all be scanned. The doctors will review the results and see if there are side effects that require changes to the treatment. After that, the study will be open to 20-40 other patients at MSKCC. Nationwide, they expect to enroll just over 100 participants. I will remain in the study until I drop out, the study ends, or I show progression of disease (growth in any of my tumors). The study is currently scheduled to end in 2012.

So there you have the details. I will let you know about my scan results from last Wednesday and my starting date for the trial as soon as I hear something. There is -- thankfully -- nothing on the calendar this week other than a Zometa infusion on Friday.

I hope you all enjoyed your Thanksgiving holiday and took advantage of the long weekend.

I'm in...but do I want to be?

2009-11-25T14:44:00.002-05:00

Just a brief update because I'm swamped today. Yesterday I found out from Dr. Maki, who is running the clinical trial, that I am in barring any strange mets found on the scans I had today. The phase II trial is starting with six patients, and I am number 6. I was very pleased to get this news, and then I read the material they provide. In it, there are several pages of potential side effects, which include diabetes, heart disease, kidney disease, problems with brain function, and on and on. Dr. Maki stated that two problems experienced in the phase I trial were high sugar levels (glucose) and mouth sores. He didn't say if these were the only problems experienced.

I'll write more when I have some time and the material in front of me.

Have a wonderful Thanksgiving. I know I'm grateful this year, as I have been for many years, for the love, support, kindness, and thoughtfulness of those who follow this blog and those friends and family members who don't. If this disease has taught me anything, it's that there are more generous and loving people in this world than I previously believed.

I thank you for you.

Is it Monday already????

2009-11-23T09:46:00.002-05:00

This past weekend was a very busy one -- the busiest I've been since surgery. Saturday morning we headed out early to do errands, then Ed went off to help out a friend and I went for a cut and color. Then it was off to get gas and stop at a store to pick up a few things. I followed that with a visit to Lydia G's, where we had dinner. We left the house at 9:30 in the morning, and except for 45 minutes at home for lunch, I didn't return until 7:30 -- at which time I went directly to bed! Sunday involved chores, like ironing, and getting things ready for this morning.

When that alarm went off at 4:02, I thought I was dreaming. Nope, it was back to work day. The bus ride in was more difficult than I anticipated. My incision is very tender at the moment, and I'm contemplating taking a few ibuprofen to ease the discomfort. And, despite having shorter coughing fits at home since I started with Symbicort, I coughed on and off all the way in on the bus. I'm sure my fellow passengers were simply thrilled to have me back.

I've been busy this morning going through all the accumulated mail, e-mails, filing and bill paying that needs to be done, and I'm already pooped. I can't imagine how I'll feel at quitting time. I hope I can make it through dinner without falling asleep!

Hope you had a wonderful weekend. I'll be back soon with news about the clinical trial.

Clinical trial update 2

2009-11-19T10:20:00.002-05:00

I have an appointment to see the head of the clinical trial on Tuesday. Dr. Maki is also the head of the Sarcoma Department at MSKCC, and he should be able to give me more details about this trial. I've been searching all the websites I can find that list clinical trials and have found no information on this one. Of course, I'm trying to find it based on the information that Dr. K gave me (two chemo meds vs. one, mTOR inhibitor, IGF) so if she didn't get all that correct, I won't be able to find it. I'll post an update here next week.

I'm also having scans next week: CT scans of the chest, abdomen and pelvis and an MRI of the brain. Dr. K didn't explain it to me, but I believe one of the exclusions in the trial is no brain metastases. As you know, I had mets to the bones of the skull, not to the brain, but they have to have scans to prove it. I'm not looking forward to the brain MRI, as I am stuck inside that tiny tube with a cage over my face for about an hour, but I'll be bringing my Ativan along to calm my nerves.

If I don't get into this trial, I found another trial that I would be interested in. I'll ask Dr. Maki about that one when I see him based on his opinion about my chances of getting into the first trial.

It's hard to believe that this is my second to last day at home. Too bad it's so crummy here today -- cloudy and drizzly -- although the temps are supposed to reach 60. No walk for me today! Hope the weather is better wherever you are.

Clinical trial update

2009-11-17T10:06:00.003-05:00

I received a call from Dr. K yesterday regarding the clinical trial. It seems that it may be more difficult for me to get into than she previously indicated. First, my tumor should be IGF (Insulin-like Growth Factor) positive. However, they may be including some patients who are IGF negative, so if I'm not positive, it "doesn't necessarily preclude" me. Second, the protocol requires a biopsy of a tumor seven days after beginning treatment. All of my tumors are too deep in the lungs to biopsy, so I would need a pass on that part. That, also, "doesn't necessarily preclude" me. Not very encouraging from my point of view.

To explain it as simply as possible and as much as I understand it, IGF-1R is part of a signaling system in the body that encourages the growth of many tissues, including cancerous tissues. The thinking behind this anti-IGF therapy is if the IGF-1R can be targeted, perhaps the cancerous tissue would stop growing or reproducing.

The trial starts in about three weeks. They are screening potential participants and I may have to go into the city on Friday to sign the paperwork allowing them to test my tumor samples for IGF receptors. I would also have to have bloodwork done. Dr. K is also ordering CT scans, since it's been two months since my last scans and I've been off treatment that entire time.

So there is some progress on this front but no definitive answers yet. When I know more, you'll know more.

Another week, another doctor

2009-11-13T16:08:00.002-05:00

Yesterday we met with the radiation oncologist at Riverview Medical Center with whom we discussed Cyberknife radiation last October. As you will recall, we decided to go with the IMRT/IGRT radiation with Dr. Yamada at Memorial Sloan-Kettering instead. This time, we wanted to investigate whether Cyberknife might be an option to debulk the major tumor in my lung. We had asked Dr. Flores and the pulmonologist about this, and they both thought it was worth investigating.

Rather than bore you with all the details, I'll sum up our meeting. The doctor felt that attempting to get into the clinical trial was the most important item on my agenda. If I don't get in, I might want to consider trying a round or two of Gem/Tax and have scans again before considering Cyberknife. As he stated, the last time the tumor was measured was almost two months ago (two months without any chemo treatment), and he would have to assume that the 4.6 cm tumor is now larger. (Six centimeters is his outside limit for performing Cyberknife.) While he believes that Cyberknife could certainly debulk or even destroy the tumor, there are a number of risks: damage to one of the major vessels while the tumor marker is implanted; damage to one of the major vessels from the radiation; inflamation of the lung due to the radiation resulting in permanent shortness of breath; and a potential longterm complication of an aneursym on one of the vessels. He also conceded that the radiation could potentially damage the phrenic nerve and make my cough worse rather than improving it. It's a lot to consider.

So right now we are waiting to hear from Dr. K about this trial and when it will start. I'm beginning to get nervous about being off treatment for this long, but I know that starting something new now could jeopardize my chances of getting into the trial. I'm hoping to hear from her early next week.

My boss is going to be on vacation next week, so I'll be working from home and won't have to go into the office for another week. I had been planning to go back on Wednesday, which, believe it or not, will be four weeks since I came home from the hospital. Now I have another few days to rest up and try to wrap my mind around the idea of getting up every morning at 4:05. Yikes! At least the first week will be a short one.

It's been rainy, windy and chilly here for three days now, but the Nor'easter is supposed to move out sometime tomorrow. I did a half mile inside Costco on Wednesday and rode the incumbent bike for three miles today, but I hope to be out for my walk tomorrow or Sunday. I hope the weather is better wherever you are.

Have a great weekend!

Two days, two doctors

2009-11-05T10:27:00.002-05:00

I have to admit that despite just having seen the pulmonologist and the surgeon, some things we discussed are a blur. Nevertheless, we did get some answers to some of our questions (and there were questions we forgot to ask).

The pulmonologist has given me a bronchodialator (Symbicort) to try for two weeks to see if that gives me any more relief. He confirmed that it is the tumor pressing on the phrenic nerve that is causing the cough, but unlike the interventional radiologist that Dr. K spoke with, he feels that even if that nerve was permanently damaged or destroyed, the side effects would be minimal. Something to keep in mind.

He also agreed when I suggested it that CyberKnife might be an option to deal with the main tumor. As you may recall, we explored CyberKnife last year when we were dealing with the bone metastases, but decided to go with the experience of Dr. Yamada at MSKCC since we were dealing with my radiation close to my brain. We are going to schedule another appointment with the CyberKnife doctor and get his opinion on at least trying to debulk the tumor.

The surgeon said he thought he told us the possibility existed that the surgery would not be successful. Nope, you didn't. He explained that he absolutely could have performed the surgery to resect the tumor and has done a number of similar surgeries, but the issue was location. If things had not gone perfectly, he would have had to remove the entire right lung. Because I have metastases in the left lung already, he felt I needed all the lung capacity I could get for as long as possible. He wouldn't have wanted that chance taken on himself, therefore he didn't take that chance on me. He views every case individually to decide what's best for each particular patient, and while it was disappointing not to be able to remove the tumors, he did what he felt was best. He described himself as very aggressive, yet this was a decision he was comfortable having made. I was satisfied with that explanation.

He removed the steristrips and my incision looks pretty good. No stitches to be taken out, thank goodness. He then suggested that he would contact the pain management department at MSKCC to find out about numbing the phrenic nerve, as he did after surgery, to provide me with some relief from the cough. I don't know if I would be willing to have shots every five days (which is how long his shot lasted) for the foreseeable future, but we'll have to discuss that with whomever he puts us in touch with. He, too, thought CyberKnife was something to look into.

So that's the update for now. We'll set up an appointment to find out more about using CyberKnife on the main tumor and wait for Dr. K to call back with more information on the clinical trial. In the meantime, I am continuing my walks, taking naps when I need to, and trying to get some more calories into me. It will take time, but I should be back to feeling more normal soon.

Thanks for all the cards and e-mails. I really appreciate your support.

Nap time!

Overdue update

2009-11-03T09:03:00.002-05:00

I apologize for not updating the blog before now. It's amazing how the day really gets away from you even if you aren't doing much of anything. The morning rushes by, then it's lunchtime, then the afternoon rushes by, and then it's dinnertime and bedtime. Last week I couldn't keep track of what day it was. Guess I've been home too long already!

My recovery is coming along slowly but surely. I've been walking at least six days a week since I came home from the hospital. I do a little more than a mile most days, but my speed is significantly slower than it was prior to surgery. I start off at a good clip and shortly lose my breath, so I have to force myself to slow down and just amble. Unfortunately, it's getting colder here (windy too) and getting myself out there is tougher each day. As I think I mentioned, our treadmill decided to kick the bucket just when I was assigned this mile a day task, and Ed has been trying to either fix it or decide on a new one. The ones today are much more expensive but more cheaply made than ours, and it's tough to decide to throw $700-$1,000 at a machine that might only last a few years -- and require an expensive service contract, too.

My steristrips are still attached, although they might be removed at the surgeon follow-up tomorrow. The area where my chest tube was inserted is still tender, but I'm getting much more use out of my right arm lately. I even made the bed yesterday. LOL Seriously, when I first got home I had a difficult time brushing my teeth and getting a shirt on and off. Today I can get dressed, shower, lift a milk or water bottle (provided it contains a half-gallon or less), water my plants, tie my shoes, etc. I haven't done any cleaning yet, but I did cook dinner one night. I'm still not putting any weight on, but it's not for lack of trying. I've been eating stuff I normally shouldn't be eating, but we're trying to reverse the trend. Once that happens, I'll get back to more of the good stuff and less of the sugary stuff.

Our appointment with Dr. K was a mixed bag. I let Ed voice his frustration without interrupting him. I have a tendency to think that if people like me, they will treat me better, so I try to avoid conflict with the doctors and nurses that I deal with. However, I realized that (a) this doesn't really get me better treatment and (b) it doesn't allow us to honestly voice our issues with the doctors. I don't think Ed got much satisfaction other than being heard, but he needed to get all his issues out on the table.

In summary, we learned the following: There is a clinical trial set to start at MSKCC within the next month or so that Dr. K recommends for me. It involves two chemotherapy agents that have been tried individually on other cancers, and one showed some success on Ewing's sarcoma. This phase II clinical trial seeks to combine the two agents and see how effective they are against other types of sarcomas. I don't have any details of the trial as it is new and the meeting to hammer out the final details was taking place yesterday afternoon. She said she would get back to me in about two weeks. That is about the time that I would be restarting chemo under any circumstances, as she recommends waiting four weeks after surgery.

She contacted an interventional radiologist (at my suggestion) about other procedures to address the tumors (RFA and embolization). The radiologist, presumably after looking at my records, informed her that these radiation techniques might debulk or reduce the size of the tumor, but because of the main tumor's location on the nerve that is making me cough, it could do more harm than good. She recommends seeing my pulmonologist again (which we are doing today) to see if he can prescribe something to give me more control over my cough.

Tomorrow we see the surgeon, and I would almost guarantee that he is not going to be one of my fans by the time we are finished. Although Dr. Windsor (my NJ oncologist) explained to me the limits of scans, I still want some answers. Dr. Windsor said that scans are in two dimensions only, so if, for example, you held your hand close to a wall, the scan would show that your hand was near the wall, but it would be impossible to tell how close to the wall you were or if you were touching it. He also said that thoracic surgeons are among the most aggressive surgeons he knows, so if Dr. Flores says something can't be done, we should take him at his word.

That's not really my issue at this point. My issue is why we weren't fully informed that the surgery might not be successful. He mentioned that it might not cure my cough, but he never indicated that he expected less than success in removing the tumors. If I had known there was a certain percentage chance that it wouldn't be successful, I might have chosen chemo prior to surgery. Because I thought we were going in and taking them out, it didn't make sense to waste the chemo first.

So, we await more answers and information on the clinical trial. I will try to do better in posting, although this is the most I've typed at any one time since the surgery and I can feel it in my back. Thanks for your continued support. I deeply appreciate it.

So frustrated

2009-10-26T09:13:00.002-05:00

Every day I get a little more frustrated over this situation. How could so many doctors looking at so many scans not know what to expect when they opened me up? I know the scans won't show everything, but not knowing that two of the nodules were close to or attached to major blood vessels? Not knowing anything about the tumor that is supposedly wrapped around the superior vena cava? How is that possible? I will expect a full explanation from Dr. Flores when we see him on November 4. I feel like I'm going through all of this recovery for nothing. He opened me up essentially for nothing. What a waste of time, money and energy, to say nothing of the damage to my spirits.

We see Dr. K on Friday to discuss chemo options. I have to do some research this week so I'm prepared. I am familiar with some of the options available, but I also know there are some clinical trials she may recommend. I'll post an update after that meeting.

In the meantime, I'm getting in my walks each day (took off on Saturday) and have been off the pain meds since Friday night. I have quite a bit of discomfort along the incision site, and now that my cough is back in full force, my ribs and side are sore as well. I feel a little better each day, but wish that this recovery had been for something we had accomplished.

Thanks for all the good wishes. They truly help.

It's good to be home

2009-10-23T08:41:00.003-05:00

Just a brief note as my right side is not cooperating as it usually does.

I got home late Wednesday afternoon and went right to bed. Slept for four hours, was up for an hour, and went back to bed until 6 a.m. Yesterday I basically rested, although I did do my mile, and I had a visit from Lydia G.

This morning I had my first shower and we removed the pressure bandage that was over the chest drain incision. It feels good to have that off, because it was very tight. Now I just have steri-strips, over what I am assuming are dissolving stitches. My follow up appointment isn't until November 4, which seems way too long if there were stitches to be removed.

Needless to say, I am very disappointed that the tumors could not be removed. I'm also more than a little surprised that with all the modern imaging machines in use today, no one knew that there was a tumor wrapped around my superior vena cava nor that two of the tumors were sitting on/next to major blood vessels. Don't get me wrong: I'm very pleased that Dr. Flores made the decision to close me up rather than remove what he called a very healthy lung (other than those tumors). I just wish he hadn't had to open me up in the first place if there was nothing he could do. I still have to go through the recovery period, take the pain meds and miss work, and I'm not really getting a payback from that.

I'll try to get back tomorrow to write more, but I need to go stretch out for a little while right now and take a nap. Thanks so much for all of your e-mails, calls, cards, prayers and positive thoughts. They worked!

We're all set

2009-10-18T10:09:00.003-05:00

My surgery is scheduled for 9 a.m. on Monday. I have to arrive at the hospital by 7:30. The nurse, during the presurgical call, assured me they can access my port to start the meds and if they need a bigger vein, they can access it in the operating room after I am asleep. Yay! No digging around in my arm. I'm very pleased with that news. After they start the IV, they will take me to another area for the epidural. She assured me that I will already be feeling relaxed and sleepy, and that after the shot to numb the area, I will only feel pressure as they insert the catheter. The epidural will remain in place until I leave (which should be Thursday). It will continually provide pain medication to the nerves on the right side of my chest where the surgery will be performed.

The thoracotomy is scheduled to last three to four hours. I will spend the rest of the day and the night in the recovery room (or the fancy new name, PACU) where they can monitor me before sending me up to a room. Once I am in my room, they will immediately put me upright in a chair. After breakfast, they will essentially kick me out with a specialized walker and start me on my first mile. I will have to practice my deep breathing and coughing throughout the day, and continue to walk as much as possible.

I have all my pjs and toiletries laid out so all I have to do is stick them in a bag for Ed to bring me on Tuesday. Yesterday's shopping trip with Sue was a big success, with four pairs of pjs and a new pair of slippers purchased, not to mention a bed tray. I can't believe how expensive pjs have gotten -- the first ones we looked at in Macy's were $54!! I finally found some decent looking ones in JCPenney on sale for $24. I guess I haven't been pajama shopping in a loooong time.

I still have to charge up the cell phone and find out if the hospital has WiFi, but other than that we are ready to go. It's hard to believe that after tomorrow I'll be missing a part of my lung, but I know that I will recover well and won't even miss it after a few weeks. Besides, it's being sacrificed for a good cause -- my greater health.

I'll be back in touch as soon as possible. As soon as I can make it back to a computer, either at the hospital or at home, I'll post a note. In the meantime, take care of yourselves and know that I love you.

I am humbled...

2009-10-16T10:15:00.002-05:00

I wish there were some way to adequately express how much all the e-mails, cards, and phone calls of support mean to me. I am so amazed and humbled by the amount of love, friendship, kindness, and thoughfulness I have received this week. It means so very much to me and truly gives me a sense of positivity that this surgery and the recovery will go well. I know it will not be easy, but knowing that so many people are pulling for me makes me want to work that much harder. Of course, getting back into my own bed is a big incentive as well! LOL

From the bottom of my heart, thank you so very much. I'm sending love and friendship back at all you. I hope you can feel it.

Getting closer

2009-10-15T07:27:00.003-05:00

We enjoyed our anniversary and have gotten off to a good start on our 22nd year. We went out for dinner Thursday night to celebrate, then had dinner with friends both Friday night and Sunday night. You would think I'd be gaining weight with all this eating out -- not to mention the 10" cheesecake Ed bought me for our anniversary. Unfortunately, I'm not. Ed's goal -- and the goal of a few other friends -- has been to fatten me up prior to surgery, but it's simply not happening. I'm sure it's partly because of nerves. I've got a twitchy stomach these days, and trying to interest it in food is not going too well. I'm hopeful that after the surgery, once I'm done with the pain medications, my appetite will come roaring back. Let's keep our fingers crossed.

I'm trying to wrap up some loose ends around here before next week. I've arranged to have my nodules (let's assume they are LMS tumors) sent out for molecular profiling to see to which chemotherapy agents my cancer is resistant or sensitive. The chemo-resistant profiling is considered fairly accurate, while the chemo-sensitivity is less so. However, this should help us and Dr. K determine what agent(s) to try next, since Gemcitabine no longer works and we already know that Doxil didn't help.

My surgery has been authorized by the insurance company, and I found out that most of the molecular profiling will be covered as well. While I'm in the hospital, I'm going to arrange for a visiting nurse to come to the house at least the day after I get home to make sure everything is okay (dressing, pain meds, etc.). I'm going out Saturday to pick up a few things: new slippers for the hospital, a bed tray, and button front pjs. My friend Kay gave me that last hint, and while I have flannel pjs that button up the front, I think it's not quite cold enough yet for them. I'm going to look for some cotton ones, and the button front should make it much easier to get in and out with the stitches and dressings.

Ed, who you may know is not a computer wizard, will nevertheless attempt to send out a group e-mail either Monday evening or Tuesday morning to let you know how the surgery went. I wish I could teach him how to send it out as a BCC so your e-mail addresses wouldn't show, but I think that's beyond his grasp. If you don't want an e-mail, please let me know and I'll take you off the list. I don't know when I'll be up to e-mailing again, and I wanted to make certain you were up-to-date in some way. Maybe I can convince him to send an update later in the week. We'll see.

Other than trying very hard to quell my anxiety, there is not too much going on here. The weather for the next four days is supposed to be terrible -- rain, wind, and temperatures in the upper 40s for highs!!! Is this really mid-October?? It's our first nor'easter of the season, and I'm very happy I'm not commuting in this weather.

I hope that the skies are sunnier wherever you are!

Much Ado About Nothing

2009-10-06T09:07:00.003-05:00

My stress test turned out to be an anticipatory stress test. I was so worried about the IV and the treadmill that I stressed myself out (per usual) and it turned out to be a breeze. The nurse gave me a warm compress for my arm and was able to get right into a vein, and the treadmill part was easy. I was breathing heavy but still able to carry on a conversation. In fact, when they slowed the treadmill down, I thought that was just the first part and they were going to run it faster and at more of an incline. Nope, I was finished -- and in under three hours.

Here's how the morning went: I arrived 10 minutes early, filled out the required paperwork and then sat and waited for 20 minutes past my appointment time. A "technologist" (yes, she actually referred to herself that way) came out to review my form (9:20 a.m.). Then I was called in to have my IV line started and receive the injection (10:05). Then I had to wait 30 minutes until they could take the first scan of my heart. Afterward, I had an electrocardiogram (along with my blood pressure) taken as I laid down, sat up and stood. Then I walked on the treadmill at a modest pace while they took another electrocardiogram. They increased the incline and the speed and then injected me again and took another electrocardiogram. After that, they waited until my pulse returned to normal and sent me to the waiting room until my next scan (11:30). Fifteen minutes later, they called me in for the scan and then sent me packing (12:05). I, of course, went immediately to the deli and got a sandwich.

This stress test sounds different from the stress tests I've heard about. First, there was no point at which they said I could eat anything. I was informed that eating draws blood away from the heart and to the stomach, so no food until the test is completed. Also, this clearly doesn't take five hours, unless you spend even more time waiting between the different activities. Third, there was no point at which I thought I wouldn't make it through the treadmill portion. Maybe those daily walks are helping!

My spa retreat on Saturday was wonderful. It was a little weird talking with strangers about my cancer, but there was a woman who loved to talk (actually a few) so she took the pressure off the rest of us. After an hour of talking, we drove over to the salon for our treatments. I had a pedicure, a manicure, a massage and a mini-facial, and they were all a treat. The women at the salon who volunteered their time to pamper us were all lovely, and I'm truly grateful to A Time for ME for sponsoring this day spa. It was a relaxing afternoon, and as you can see, my nails and toes look beautiful. I really went out on a limb with the polish color, which Ed calls either burple or purgandy. (In the photo, it looks like a light burgandy, but I assure you, it's dark burple.) It's quite a change from my usual pinks or neutrals.

Nothing else happening this week except for a celebration on Thursday of being married for 21 years! There have been times when I thought we wouldn't make it another day and I know Ed felt the same way -- maybe at different times -- and there are days when we make each other crazy. But after 21 years, he still makes me laugh, we still always find something to talk about, and he's still my rock. I never would have gotten this far through this fight -- or through this life -- without him, and I am truly blessed to have him as my husband. I'll have to ask him if he feels the same way. He says yes (good thing he did). :)

I hope you all have a good week!

Waiting, walking and inhaling

2009-10-02T09:50:00.002-05:00

I'm not enjoying this wait. I try not to think about all the things that will happen surrounding this surgery, but I can't help it. I'm not getting anxious or panicking, but it's certainly on my mind. Last time I only had four days to worry about surgery. Three and a half weeks is too long to wait. Remind me not to schedule it so far in advance next time, okay?

I've been walking every day (except last Sunday) and I can't say I'm enjoying it. First, our neighborhood is BORING. Other than some really weedy, messy, overgrown yards, there is nothing to look at. Second, so few people walk around here that homeowners look at me like I have something strange growing out of my head. They seem not to be able to process that I'm just taking a walk. Third, it got cold. I started off last week in shorts and a t-shirt and yesterday I was still chilly in heavyweight sweatpants and a hoodie with a long-sleeve shirt and a hat. What happened to the warmer weather? We were about 15 degrees below normal yesterday. The high was 55. Yikes! Despite the chilliness, I'm still walking my mile or so. I started at 2,075 steps and I'm up to 2,435. I'd like to do a little more each day.

I'm also trying to use the spirometer four times a day. I was doing pretty well there for a while, getting it up to 1250 75% of the time, but the past two days I can only inhale it up to 1000. Guess those lungs still need a lot of work.

Tomorrow, thanks to my dear friend Kate and her friend Toni, I will be enjoying a half day of pampering. Toni volunteers for A Time for ME, an organization dedicated to "caring for women with cancer" (http://www.atimeforme.org/index.htm). They offer various weekend, day or half-day retreats, and I was lucky enough to be invited to attend tomorrow's spa retreat. I'm looking forward to a massage, a mini-facial and a manicure. Sounds like just what the doctor ordered. Thanks Kate and thanks Toni!

Monday is my nuclear stress test. As you can guess, I'm really looking forward to that, especially the IV part. I can't eat or drink anything for four hours prior to the test, so I'm going to grab a bowl of cereal and drink some water before I leave for the bus that morning. That way I won't be dehydrated and it should be easier to find and get into a vein. I'll let you know all about that experience next week.

In the meantime, have a great weekend. I hope it's warmer wherever you are!

Surgery date is set

2009-09-24T10:50:00.002-05:00

The good news is that we have scheduled surgery on my right lung for October 19, and I had a pulmonary function test and my pre-admission testing before we left the building yesterday, so that's out of the way. The bad news is more growth (and one supposedly new nodule), which eliminated the option to perform VATS. (VATS is video assisted thoracic surgery and is similar to laproscopic surgery in that the surgeon uses a small camera and surgical tools inserted through small incisions -- in this case, in the back.) The largest nodule is now 4.6 x 2.3 cm (1.8 x 0.9 inches) versus 3.1 x 2.1 cm (1.2 x 0.8 inches) only two months ago. Four other nodules in my right lung and one nodule in my left lung increased slightly in size. Now he will perform a thoracotomy, which involves an incision from my back to my front around my chest and separating my ribs. He hopes to remove the large nodule by doing a wedge resection, which would involve taking a piece of my lung with clean margins, but he thinks he will actually have to remove my entire upper right lobe (a lobectomy). The other nodules will be removed via wedge resections and he will feel around in the lung for any other nodules that the scans may have missed.

Sounds like a fun time, doesn't it??

While this was not the surgery I was hoping for, it's obviously the only option at this point. I had good reasons for waiting, and once we made the decision, we needed to live with it, so that's what we are doing. This type of surgery will allow him to get clean margins, which are necessary to prevent local spread of the disease. I think he will probably encourage me to have chemo to reduce the size of the nodules in the left lung before he considers doing surgery again, but he said he didn't want to discuss it until he sees how I tolerate this surgery.

He also fibbed. They cannot use my port for surgery. That means another IV line, which is not my favorite thing, plus I get an epidural in my spine. More fun.

Unfortunately, and this is partly my fault, my lung function is not great. As you all know, I don't exercise and therefore my lungs are very weak (aided and abetted by the nodules). I am now required to walk a mile (minimum) a day and use a spirometer 10 times in the morning, at midday and in the evening. (See a spirometer here: http://en.wikipedia.org/wiki/Spirometer) The first time I tried it (I'm inhaling on it), I couldn't move the blue disc on the left at all. How embarassing. This morning, after using it twice yesterday, I'm up to 1250. (Ed got it up to 3250.) I have a long way to go! I guess this just goes to prove that those of you who share my dislike for exercise should just suck it up and get moving. Otherwise, it could come back to haunt you.

The doctor is requiring me to have a stress test because he doesn't want "any surprises" involving my heart. I have one scheduled for October 5. At least I'll have more than 10 days of walking under my belt by then so I shouldn't be a total schlub. That will be the end of my testing before surgery. I will now be in the hospital for four days rather than two, but they will boot me out of bed Tuesday morning (Monday night will be spent in the recovery room). The nurse practioner who did the pre-admission testing told me that I will have to walk a mile at the hospital and use the spirometer starting Tuesday. They want to prevent pneumonia and other complications, so they are very aggressive on this front. Sounds like more fun.

So, now we begin the wait. I've been thinking about it a bit (and made the mistake of looking at a photo online of a thoractomy incision -- I recommend against it), but I'm sure not to go into a panic until the 18th. Until then, I need to cram 47 years of exercise into less than four weeks. Think I can do it? Not a chance, but I can do my best. Wish me luck.

I have a Zometa treatment tomorrow, but my chemo is done until sometime after surgery. I need to either talk to or see Dr. K to find out what my chemo options are now that we can see definitively that Gemzar is no longer working.

I hope all of you are enjoying a week with better news. Thanks for listening...

Scans went fine

2009-09-17T10:43:00.003-05:00

No problems with my CT scans this morning, although my regular technician wasn't there. (And a strange thing: noticed a sign in the room referring to the "technologist." Never saw that term before.) Dr. Flores will have the results on Wednesday.

I spoke with my pulmonologist last night, whom Ed insisted I contact because I'm still coughing that wet, nasty cough. He would like me to try a broncodialator, such as Advair or Symbicort. I've seen those ads, as I'm sure you have, and they come with all sorts of side effects warnings. I'm going to mention it to Dr. Flores when I see him, but that may be something I want to avoid. We'll see what happens.

Bon voyage to Melinda, who is off to Spain today. Have a wonderful time and be safe!

Congratulations and best wishes to Laura, one of the oncology nurses who takes care of me with such gentleness and humor. She's always busting my chops, but she can take it as well as she gives it. She is getting married in a bit more than a week, and I want to wish her and Dale all the happiness in the world. She is truly one of the good people in this world, and she deserves a life full of as much love as possible. Have a great time in Las Vegas!!

Summer returns!

2009-09-14T09:47:00.002-05:00

It's a beautiful day here in the Big Apple -- sunny, temperatures expected to reach the low 80s, blue skies. It's a shame I have to be looking at the day from inside the office, but it's a huge improvement over the deluge we dealt with on Friday going to and from chemo. The skies opened up as we left and we probably received at least an inch of rain that day. The winds were almost tropical force at times, which made for a tedious trip, but otherwise, my treatment went well. My hemoglobin dropped from 11.9 to 11.5, so I received another shot of Arenesp as a last booster prior to surgery. We'll see how well it worked when I go back for my Zometa treatment on the 25th.

I'm a little concerned that I am being passed off to a new doctor at the NJ oncology facility. As you may recall, I originally met with Dr. Greenberg, who is very quirky but whom I liked very much, but she is off on Friday when I usually have treatment. I was passed to Dr. Windsor, with whom I have developed a solid relationship over the past year. They recently hired a new doctor and I've seen her twice now. I was very disappointed on Friday because I had some issues I wanted to discuss with Dr. Windsor, but he was at the hospital doing rounds. I don't know how I'm going to resolve this issue, since I usually can't do treatment on Thursdays when Dr. Windsor is always on the schedule (unless I'm working from home). The new doctor may be very competent, but I feel as if I have a history with Dr. Windsor and I am loathe to "start over" with someone new. We'll see what happens.

I have scans on the 17th, which I will review with Dr. Flores when we meet with him on the 23rd. I'm putting together a list of questions for our meeting, and I'm starting to stress a bit about this upcoming surgery. I'm sure my mind will be eased once we meet, but I must admit that if there were any logical reason for avoiding this surgery, I would. However, there is no logical reason at this point, and I'm hopeful it will bring me relief from my cough.

Have a wonderful week!

Getting back into the routine

2009-09-09T07:45:00.002-05:00

It's been tough hearing that alarm clock go off at 4:05 the last two mornings, but as I figured out, I don't have to listen to it too many more times. My boss leaves for Montana again on September 22, so with that and my recovery following surgery, I'll be home (except for occasional trips into the city) for a while.

Everyone seems to be getting back to the fall routine. The kids are back in school, the temperatures by us have turned cool, and it's time to close the pool. I can't believe we are in September already and summer is unofficially over. This year has flown by.

I have scheduled my pre-surgical CT scans for September 17 and I see the surgeon to choose the date on September 23. I have my final chemo treatment on Friday and then I'm off for a while. I'll have to ask him how long after surgery I'll be off treatment, and I'll have to discuss with Dr. K what treatment we're going to use since Gemzar seems to have stopped working for me. I know that patients are usually off chemo three weeks before and following surgery. I'll be off a few extra weeks due to the timing of my treatments. I'll still be having my Zometa treatments as far as I know.

Nothing else new to report. I'll be back following Friday's treatment.

Some photos of that sweet suite!

2009-09-06T14:20:00.003-05:00

Here are some views of the lovely suite we stayed in at the Bellagio starting with the seating and bed area:

And then there was the huge bathroom...

...with this jacuzzi tub and an amazing view. I enjoyed a relaxing bath one afternoon while I watched the world go by!

Viva Las Vegas!

2009-09-05T07:31:00.002-05:00

As some of you know, we spent a few days in Las Vegas as a break from tests and doctor appointments. I didn't want to add specific dates to the blog, especially after that guy out west Tweeted about his vacation and thieves subsequently broke into his home. Not that I think any of you would waste your time breaking into our house (after all, there isn't much to take and we do have an alarm system). but I thought it was better safe than sorry to announce the trip after its conclusion.

So, we had a wonderful time, despite the fact that I wasn't up for all of our usual activities. We visited a few other casinos on foot, and never used our car after the first day except to return to the airport! We had some delicious meals, drank some wine and mixed drinks, and saw Bette Midler -- at a discount! We relaxed by the pool every morning for several hours, and between us we only lost $110. Not bad for having visited the gambling mecca of the United States.

I surprised Ed with a stay in a suite and boy was it lovely. A huge room with a sofa and several chairs, a large screen television, king bed, two huge windows (not with a great view unfortunately), a bathroom (about the size of our kitchen at home) with a jaccuzi tub, a stall shower, double sinks and a make up table with the toilet in a separate area. Oh, and there was a small television in the bathroom as well, plus a large clothes closet. I'll include photos in the next post.

We tried two new restaurants during this trip: In 'N Out Burger and Mesa Grill. In 'N Out Burgers can only be found out west, and Ed wanted to try one. I would say it is a huge step up from a McDonalds or any other fast food burger, although it's not the type you would find in a regular restaurant. However, the burger was tasty and the condiments were very fresh. The fries were good, too. Mesa Grill served very eclectic Mexican-type food, full of various flavors in each dish. Ed had 16-spice chicken with a mango chutney, which was very flavorful, and I had a chile relleno stuffed with roasted eggplant and roasted red peppers. Yummy. Unfortunately, we usually had no room for desserts after our dinners, so there was a lot less sugar consumption than usual. But that's a good thing.

We arrived home at 12:15 a.m. Friday morning and were immediately asleep. I had chemo at 11:30, and it was tough dragging ourselves over there. I went back to bed as soon as I got home, slept for 3-1/2 hours, got up for 2 and went back to sleep for 12. I'm feeling much more rested today.

We have no plans for this holiday weekend other than to get caught up, get the laundry done, and maybe tackle some of the weeds that are threatening to take over the backyard. I hope you all have more exciting plans for this weekend and that the weather cooperates!

Stability is a very good thing

2009-08-26T10:24:00.002-05:00

Other than a bulging disc or two and some continuing issues with my ribs, my scans showed that my bone mets are stable and nothing else is new. Dr. Yamada had not seen the reports but viewed the films, so I'll have to discuss the disc and rib issues with someone else. He doesn't need to see me again for six months, so that is very good news.

My CT scans have been showing a fractured (fourth or fifth) rib since January, and no one has shown any concern about this. The bone scan refers to "fracture deformities" in the front part of my left fourth, fifth and ninth ribs, but I find it difficult to believe that I could possibly have a fractured rib (or ribs) that hasn't healed for eight months. I'll discuss it with Dr. Windsor, my NJ oncologist, since he is the next doctor I see (on September 4).

So, there seems to be no impediment to my scheduling surgery with Dr. Flores (the thoracic surgeon) when I see him on September 23. The only scans I have left are CT scans, which Dr. Flores wants to review before I see him, so I'll have those done the week of September 14.

I'll be back after chemo on September 4. In the meantime, enjoy the rest of August and don't worry if I don't write before then.

It just never ends

2009-08-25T13:23:00.002-05:00

As you may recall, I had my annual physical back in mid-June. My doctor ("Dr. Gout") gave me a prescription for bloodwork and I didn't go until last week because I had to fast beforehand. Well, I got the results today. While almost everything was good, my cholesterol is 249 (the limit is now 200) and my bad cholesterol is 157 (the limit is 100). My eating habits have been admittedly poor over the past eight months, but the last time I had my cholesterol tested -- which was several years ago -- it was around 175. Guess I need to make some more changes.

Dr. Gout wanted to put me on medication to prevent cardiac disease (like I need that to worry about), but we're going to try a better diet and exercise first. I have to go back in four months to have my blood checked again. Has anyone out there successfully lowered their cholesterol through diet and exercise? Please tell me yes...

Hardest part is over

2009-08-24T11:40:00.003-05:00

Just wanted to let you know that I managed to live up to my license plates (which read "Toughie")! I made it through the total spine MRI, which required me to lay on my back in that little MRI tube for an hour without moving, followed by the bone scan, which was another 40 minutes of laying on my back, but this time in open space. Tomorrow I only have the brain MRI left, which is good news. I don't think I could handle another 3-1/2 hours of scans.

I'll be back with a report following my appointment with the radiation oncologist on Wednesday. Sorry for sounding so freaked out earlier, but I was very nervous. I feel a little calmer with two of the three scans completed.

Really nervous

2009-08-24T06:25:00.002-05:00

I've been dealing with a low-grade panic all weekend in anticipation of today and tomorrow's scans, and I got absolutely nothing done -- no housework, no phone calls, nothing. This morning I'm having the total body bone scan done, and it was last year at this time that the bone scan uncovered the metastases in the skull, clivus and pelvic bone. There is no reason to fear that something else will show up, but I can't help but worry that something will. I also will have two parts of my spine scanned by MRI this morning, and the brain and last part of the spine MRIs will be performed tomorrow morning. The good part is that I see the radiation oncologist Wednesday morning, so I don't have to wait long to get the results. I just hope he has nothing to tell me.

I almost feel like I'm going to faint from nerves, and I haven't felt this way since my ankle surgery. I'm trying to calm myself down but it's not working very well. Please keep your fingers crossed for me and send me those positive thoughts. Right now I could use a hand to hold -- and some extra oxygen!

Barely hanging on...

2009-08-21T13:16:00.002-05:00

It's 2:15 pm on my first full day back since June 16 and I'm trying to hang on for another hour. Had chemo yesterday, got home at 4 and went directly to bed. Got up at 6:30 for a bowl of cereal and was back in bed at 7:15. I couldn't believe it when the alarm went off at 4:05. Yikes! Thank goodness I have two days to recover before putting in my first full week since June 8.

Chemo went fine. Dr. Windsor ordered another shot of Arenesp. My hemoglobin is up to 10.9, but the normal low range for a woman is 12.5, so they are trying to get it up a bit higher. I'm off now for a week, so no shots for a while.

Dr. K contacted me to let me know that she spoke to Dr. Flores and that she's fine with his explanation. Even that didn't sound quite right, so on Tuesday I sent her a fax outlining every Dr. Flores and I discussed, including my treatment schedule, the scanning schedule and my follow up consultation date with him. I wrote that I was hoping for an October 15 date. Unfortunately, I just found out that he only does surgery on Mondays and Fridays, and since I don't want to be in the hospital over a weekend, I'm planning to shoot for October 19. I wrote that if anything disagreed with what they had discussed, one of them needed to contact me. So far, I haven't heard anything.

On Monday, I'm having a full body bone scan and two sections of my spine scanned via MRI. On Tuesday, I'll have a brain MRI as well as the third part of my spine MRI. On Wednesday, I see the radiation oncologist for my four month follow up.

Kudos to Ed. When I visited my hairstylist to have my roots touched up, he suggested a custom-made hairpiece to cover my thin spot -- at a price of $350. Since he didn't have one in stock and the photo made it look like a giant puff ball, Ed suggested we visit a wig shop at a local mall to see if they had something similar so we could see how puffy it was. Lo and behold, they had one in the perfect color, a little curlier than my hair, but it's fairly flat, so we bought it -- at $39.99. Ed has to put in on for me, since I can't see to hook the clasps onto my hair, but he's gotten the hang of it after only two tries. Now I don't have to worry about wearing the hat out in the sun -- which is about the only time I've been using it lately. I'm sure it doesn't blend perfectly, but how many people are going to look that closely at my hair? My boss thought it was real! That's one less thing to worry about. Yay!

Just wanted to say thank you for some recent visits from friends. Cathy (Spot's other mom) and her husband Bill were over for dinner last Friday for the first time and we had a wonderful time. I spent about three hours with my friend Kay and her family, and it was enjoyable as always just to have a chance to catch up. On Wednesday, our friend Sue sacrified one of her vacation days to spend the afternoon and evening with us, and it was a delight. Girl talk is good for the soul.

If Laura, the chemo nurse, is unable to prevent it, I'm hoping her husband-to-be will post an interesting video on You Tube. It seems that Laura was in a wedding party in upstate New York, and said wedding was held outdoors. During the ceremony, a large dragonfly, mistaken by Laura (a scaredy cat about bugs) as a rabid bat, tried to land on her bouquet. She smacked it away toward her sister, who started to get nervous and the flower girl, taking this all in, started to get scared as well. It ended with Laura running screaming away from the ceremony while the bride and groom wondered what was going on. We've all tried to reassure her that a dragonfly won't hurt you, but she remains unconvinced. If it ever makes it to You Tube, rest assured that the link will appear here.

Have a wonderful weekend!

Surgery

2009-08-06T08:23:00.002-05:00

We met with Dr. Flores at Memorial Sloan-Kettering yesterday. He started off by stating that there is no way to know whether the nodules in my lungs are actually metastases until they are tested and talked about doing a biopsy. He was then called out of the room to take a phone call. When he returned, he stated that had called Dr. K but wasn't able to reach her. (Apparently, she failed to call him prior to my appointment as she said she would.) He asked what she recommended. I said that she had suggested after my April scans (which showed stability) that he might want to do surgery to remove at least the largest nodule in my right lung, but that she had sounded less confident when I spoke to her after my July scans. I then said that Dr. Healey advocated removing them.

He asked me what I wanted to do, because he wants to know how agressive the patient wants to be. We then discussed the quality of life issue involving my cough, and he agreed with the pulmonologist I saw that the large nodule in my right lung was the likely culprit. Ed mentioned the other option, which was not to do surgery and try a more potent chemotherapy treatment, but Dr. Flores said the end goal of that would be simply to reduce the size of the nodules and then do surgery. Since the goal is to remove them (and find out what they are), he said that he would recommend surgery on my right lung to remove all the nodules he could find and then at some future date, he would do the same surgery on my left lung. We all agreed that this is a better plan than stepping up the chemo, which would damage my immune system and certainly not cure anything.

Since we have a trip to Las Vegas planned and a wedding to go to in mid-September, plus some work timing issues, I asked if the surgery could be put off until mid-October and he agreed. The plan is that I will either continue on Gemzar or be off chemo until mid-September and then have scans again. I will then meet with Dr. Flores again to schedule the surgery. He said that he would perform a wedge resection (where he removes the nodules along with some of the surrounding tissue) using VATS (video assisted thoracic surgery), but if he could not get to the nodules using VATS, he would have to open me up. (I told him that following the surgery I would want to know everything he did, but prior to it, I only wanted the basics. The details would only make me more nervous.) If he can accomplish the job using VATS, I would be in the hospital for about two days (and out of bed on the second day) and home for four weeks. During that time I believe I would be working to regain full use of the lung.

I asked him if there were anything I should be doing to prepare for surgery, and he suggested I "remain active and exercise." Music to Ed's ears! As you all know, I am not an exerciser -- never have been, never enjoyed it, and never will. However, I know that I need to get my lung capacity up prior to surgery in order to make the recovery easier -- which will, of course, involve more exercise. So in addition to all the other ways that cancer has changed my life, it looks like this is another one. Ed's thrilled and I am less so, but there are things one must do whether one wants to or not, and this is one of those things. Why can't eating chocolate be something one must do??

I need to discuss this timetable with the boss, who is away fishing this week, but I believe this is the schedule we will stick with. It allows me to enjoy the rest of the summer, take the two trips we planned, get my major work commitments out of the way, and wrap up some loose ends. In the meantime, I continue to take my pills, which have been reducing the frequency and severity of my cough. The prescription did not come with a refill, so I have contacted the pulmonologist's office to see if I can get a renewal.

I feel somewhat relieved to know this is practically a done deal, although I still have to get through the bone scan and MRIs at the end of this month. We'll keep our fingers crossed that the bone mets are stable and nothing new shows up, and then we can proceed.

I hope your August is going well thus far. It's hard to believe that my time home is almost up. I need to pack a lot of enjoyment into the next two weeks!

More appointments, more info

2009-07-31T09:33:00.003-05:00

On Monday, I met with Dr. Healey, my orthopaedic surgeon, for my six month follow up. My ankle is fine and he agrees that the pain in my back and leg is from my sciatica nerve. The question is what is pinching it and where, and the MRI of my spine (scheduled for August 25) should answer that question.

We discussed at great length his opinion on lung surgery to remove one/several of my metastases. He reiterated that the gold standard for leiomyosarcoma is to cut it out. That's the only way to potentially "cure" it. So, if the scans I have at the end of August show no new tumors, he believes the surgery should be done. He doesn't believe that stability in the lung mets matters, only that there are no new tumors anywhere else.

He also likened the fight against cancer to a baseball game. Where most other sports (other than cricket) are set against a clock, baseball can go on forever. Similarly, your survival with cancer should not be boxed into a time frame. You can play as long as possible and even get extra innings, so if you have a strong spirit, and relatively good health, you should plan to stay in the game as long as possible. He said he's known of patients who have had up to eight lung surgeries because their general health and lung capacity remained good. I told him I was nervous considering one lung surgery, let alone multiple, but I suppose it can be done.

My appointment with the thoracic surgeon is scheduled for Wednesday, August 5, in New York. We will see what he says. I'm hoping, if he agrees to do surgery, that we can put it off until mid-October, when some personal events we would like to attend and some upcoming business items can be taken care of before I'm down for the count for several weeks. I don't like the idea of being on a chemo that obviously is no longer working for me, nor would I want to be off chemo completely, but that's something we'll have to hammer out.

Speaking of chemo, my treatment went fine yesterday although I was a bit disappointed that my hemoglobin had only climbed from 9.7 to 10.1 over two weeks following the shot of Arenesp, the red blood booster. Dr. Windsor informed me that it sometimes takes two or three treatments before a boost in the counts is seen -- despite Kathleen, the chemo nurse, telling me that shot should last for up to three months. I guess she was thinking positively, and Laura, the other chemo nurse, is going to be rubbing her hands together in glee that next Thursday they will have to shoot me up again. She loves to torture me. Lest you think that she really does get her kicks from sending me into a tizzy, this is the same woman who yesterday brought me in a special Sleeping Beauty bandaid for my port after treatment. They know that I go home and hit the sack for a long nap, so she brought me an appropriate bandaid. They are both caring, thoughtful, chop-busting nurses, and treatment would be a chore if it weren't for those two. Thanks, ladies!

I will be back late next week after my appointment with the thoracic surgeon and my treatment to bring you up to date. Hope you all have a wonderful weekend, and thanks, as always, for keeping me in your thoughts.

Bon voyage!

2009-07-22T08:43:00.002-05:00

I meant to include a bon voyage to Kate and Steve in my post yesterday, but I forgot. Safe travels and happy sailing to you! Have a wonderful time in the Med and enjoy your extra days in Athens. I can't wait to hear your opinion of the new museum. This makes how many Mediterranean cruises after the "once in a lifetime" trip? LOL Have fun!!