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?

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

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

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

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

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

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...

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

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

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

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"

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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!

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

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

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!

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

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

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

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!!!!

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...

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

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

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!