Last treatment of 2009

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

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!

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

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!

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

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...

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?

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...

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

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

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

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

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...

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

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?

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????

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

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

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

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

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

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

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

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

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...

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

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

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

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

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

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!

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

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!

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!

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

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

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

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

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...

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

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

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.