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!