I Hate Cancer

Back to the hospital

2008-02-10T08:36:00.000-08:00

It's been a while since I've reported here, I've been home for 2 1/2 weeks, guess I've found other things to do than add to blog. Life has been somewhat normal, the primary side effects being fatigue and hair loss. I started losing my hair last weekend, now it's disappearing fast. Yesterday I shaved off the little bit that was left of my moustache, fearing that it was going to make me look like Hitler.

Life is not exactly normal, I don't have energy to do more than take a short walk or go to a restaurant. I have had visitors, my sister Marsha was here 2 weekends in a row, my niece Paula and her husband Ted were here last weekend. It's been good not to be alone, I'm so used to being independent, but in my weakened condition, I appreciate the security of having people around. They've also helped clean up my apartment, since I didn't have the energy to do more than add to the clutter of junk mail and the mess left by the plumber who installed a new hot water heater while I was in the operating room.

Today I'm heading back my second home, the hospital at NIH. It doesn't feel like I've been away for long, especially since I've been back to the hospital twice a week for blood tests and a blood transfusion. Tomorrow I start my second round of chemo, hoping that it will go as well as the first.

Home at last

2008-01-25T06:11:00.000-08:00

I came home Wednesday evening, finally, a 3-week break between cycles of chemotherapy. I'm doing well now (Friday, 1/25), but I was a nervous wreck Wednesday. My sister Marsha came from Philadelphia in time to go home from the hospital with me, and I felt great about finally leaving the hospital. One of my favorite nurses came running to the elevator to give me a hug, afraid that she had missed saying good-bye to me. I thought that was sweet.

In the taxi on the way home, I felt weird, a little feverish, thought I might be turning around and going right back to the hospital. But after that first night (Marsha thought it might have been a panic attack, I blamed the knit hat being too tight), I got back toward normal, just tired, having to remember to take naps.

Starting Chemo

2008-01-18T16:08:00.000-08:00

It's Friday, January 18, 2008, I'm back in the hospital, probably through next Wednesday, barring complications. And I've seen how easily complications can arise. This afternoon I started my first 96-hour cycle of chemo, a combination of 5 drugs, 4 iv and 1 oral. Yesterday I had a bad day, there was a lack of communication among doctors, and they were giving me conflicting reports on when the chemo would start. I was upset because I was ready, and the sooner I start, the sooner I get out of here. I was also anxious to get started because the goal of coming to the hospital in the first place was to fight the spread of cancer, and for the last 24 days, I've been delayed because of surgery and all the attendant complications. Now the fight begins, Larry vs. the cancer.

It's now about 5 hours since the chemo started dripping in, and so far I've had nothing more than a very slight headache. The nurses and doctors tell me that side effects vary with every patient, but I can expect my hair to fall out and to experience some nausea, possiblyconstipation and/or diarrhea (maybe they'll cancel each other out, and fatigue, once I'm at home. I was given an anti-nausea drug just before the chemo, and it certainly didn't affect my appetite at dinner (penne pasta and meat sauce), I could have eaten a second helping. So I'm happy to say, so far so good. I think this is why I'm glad to get started, curious to see the effects.

Today I remembered to ask why I'm still shaped like Humpty Dumpty, losing weight everywhere except in the stomach (where I needed to lose it). The doctors tell me it's related to tumors which cause fluid to build up, and they are hopeful that the chemo will help. This also explains why it was important to start chemo, the tumors are growing and spreading and need to be attacked.

I hope all this detail is not disturbing people, I guess if you've read this far, you must have strong stomachs as I have. For some reason I just find it helpful to share, just putting all my cards on the table.

My One Day at Home

2008-01-16T04:36:00.000-08:00

I finally made it home, after 20 days in the hospital and 2 days staying with my friends Ellen and Lenny, they provided a wonderful halfway house. Actually it was good not to be alone on my first days at home. Now I've spent about 20 hours at my apartment, so happy to be here. I had my best night's sleep in 3 weeks, only woke up about twice (unlike the other night, when I was getting up 3 times every hour, not exactly conducive to a good night's sleep.

The bad news is that I'm heading back to the hospital today and told to be ready to stay. I know they want to check my gall bladder infection, still have a bag, with a tube draining bile, emptying it a few times a day.
I know everybody means well when they say be patient, but how much can a person endure? I was so looking forward to coming home and had been promised that I could stay for a week or two, at least have a semblance of normal life. Now that's been taken away.

Actually I'm feeling good, walking up to half a mile, not at my usual speed, but it feels good to feel fresh air. It's the simplest things I miss. In a few minutes I will eat a poached egg, I have been longing for a real egg for over 3 weeks. Don't get me started on doing without chocolate and cheese for all this time. I'm on a strict low-fat diet because of the gall bladder infection, doctors keep worrying about nausea, but I've had none. I kept begging at the hospital for solid food, not just on a whim, but because I felt that's what I needed to regain my strength, then I got to say I told you so.

Thanks to everybody following this pitiful saga, it feels good to unburden myself, I'm a very verbal person, you can see I'm holding nothing back, and I think it's good therapy for me.

I hope everybody reading this is healthy, enjoy it while it lasts, I thought I'd be healthy for 100 years.

back in the ICU

2008-01-06T03:36:00.000-08:00

This is Paula, posting for my uncle. I've published the draft he wrote a few days ago, and you can read it for yourselves; unfortunately things didn't work out as he'd hoped. After a couple of days of real food, he developed an infection (they're fairly sure it was because of the operation). They moved him into the ICU because of his fever and because he was a bit groggy, not alert as he had been. So now he's being being carefully monitored, not allowed to even drink water - all he can do is use a swab to moisten his lips. His renal function got worse for a few days; it's not where it should be but at least has stabilzed; I spoke to his doctor and she said it was probably from the shock of the surgery. They'll keep him in the ICU for another day or two, then put him back on the floor. He's still feverish and it sounds like time is going slowly because he can't really concentrate well enough to want to read; however, he's got his cell phone there and would appreciate calls. He is allowed to have visitors, and would appreciate an in-person visit even more, for those of you in the area.

Tomorrow is my emancipation day

2008-01-03T14:33:00.000-08:00

As of Thursday:

At first I was being completely patient, not in a hurry to leave the hospital, but after 10 days here, I am desperately longing for a taste of real life. I want to breathe fresh air, don't care how cold, want to eat good food, no matter that it won't be in the quantities I'm accustomed to. Today I have ordered from the unrestricted menu (muffin and raspberry tea for breakfast, chicken pot pie and mac and cheese for lunch, all delicious).

I'm liberated from iv pole, able to walk more easily, even walked a friend down to the lobby on his way out to show him the beautiful aquarium. Tonight the doctor has given orders that I am not to be interrupted for taking vital signs and getting blood drawn, he said a good night's sleep, which I desperately need, is more important. I'll be staying with my good friends, Lenny and Ellen, near Annapolis, Maryland, through the weekend, then going home to prepare to come right back here to start chemo.

Happy New Year, or so far, so good

2008-01-01T12:59:00.000-08:00

Last night I went to sleep at 10:30 p.m., awoke in the New Year and counted that as progress. Now if I can make it through to 2009, I may even see a new neighbor in the White House. I had a bad night, because of a nurse who was opposed to pain management, and said, very persuasively, that I wouldn't start to heal if I pressed the button for medication even once (never mind that it's programmed to be pushed 9 times an hour, and I never use it more than once in 2 hours). Anyway, today I found doctors and nurses who confirmed my opinion that she was full of nonsense.

I'm making progress in getting rid of gas, I may even get more than ice chips for dinner. That's all I've had since last Thursday. The next step up is clear liquids, broth, juice and popsicles, not exciting for some, maybe, but try being on a diet of sips of water and ice chips for days on end. Anything sounds good compared to that. After that, it's on to soft foods, then real food, maybe for my last meal here. I may get out in 2 more days, but I'm not counting on that, I know how things change.

I sincerely hope everybody reading this has a happy, healthy New Year.

Surgery + 2 days

2007-12-28T07:42:00.000-08:00

Today my biggest accomplishment was walking around the 32-room hospital unit without an iv-pole to lean on. Of course I walked slowly, but several nurses said I was walking better than yesterday.

The surgery was actually very brief, 45 minutes instead of the 14 hours it might have taken. That's good news and bad news. It really was just exploratory surgery, and the surgeons found that it wasn't feasible to remove the cancer because it's scattered all around. So my next option is chemotherapy using 5 drugs intravenously, one of them experimental.

Surgery + 3 days

I started adding to to the blog, but got interrupted by a nurse or doctors, the staff here is huge and I see people all day long.

As for the operation, it was brief, but traumatic for my system because of a large incision and having organs moved around. My biggest problem now is that since the night before last, I can't have anything but sips of water and iv fluids. I have a distended belly, look like malnourished children that you see on the news. And after 5 days of nothing solid to eat, I don't look like I've lost an ounce, there is a possibility that I'll get solid food tonight, but I'll believe that when I see it.

I'm walking around but now I'm attached to the iv pole again. And I'm sitting in a chair more, they want me out of the bed more than I am in it. All things considered, I feel pretty good. Last night I had a good night's sleep, well, as good as can be when you're awakened at midnight, 4 a.m., and 5:30 a.m., to check vital signs, draw blood and given medication. This morning I had a big adventure, a trip 2 floors down, by chauffered wheelchair to radiology for a chest x-ray. It's not a pleasant experience, but the staff here is almost uniformly good. It's probably the best hospital I could be in to treat a rare cancer.

Now I have to get out of here, probably in another 3 days or so, then I have to recuperate for up to 2 weeks, so I can come back here and get sick again, with 4-day cycles of chemotherapy followed by 3 weeks off.

Thanks for all the messages of support, but this is not the kind of illness that will respond to get well soon messages, I may feel all right, but I know the cancer cells will multiply and spread, and the best I can hope for is a few more good years. But I appreciate all good thoughts and prayers.

Hospital admission minus 1 day

2007-12-24T11:04:00.000-08:00

Today is Monday, 12/24/07, Christmas Eve. I am getting ready to enter the hospital to prepare for surgery on Wednesday. I feel like I am in perfect health, just as I have felt for almost all of my life. In fact I'm about to go to the gym, actually in the mood for it, and those of you who know me, will know that mood doesn't strike very often. It must be the knowledge that I will have an excuse for not going for some time after surgery.

I think it helps to enter the hospital feeling healthy, as I have for four previous surgeries. Never mind that I am not healthy as my recent history proves. In July I had an adrenal tumor removed, it had taken over the left adrenal gland, and both tumor and gland came out. The surgeon saw the cancer when he operated, the biopsy confirmed the finding of adrenocortical cancer, and subsequent scans have shown the spread of cancer. It is hard to conceive, but all the while I have felt perfectly fine, probably as well as anybody reading this.
Since July I have been to four oncologists, including those at Sloan Kettering Hospital in New York City and the National Institute of Health (National Cancer Institute within NIH) in Bethesda, Maryland. Opinions of treatment have varied, and I had to choose who and what to believe and choose the treatment that would give me the best option for stopping or at least slowing down the spread of cancer. The surgery scheduled for Wednesday, December 26 at NIH includes removal of 1 kidney, spleen, parts of pancreas, colon and diaphragm. It sounds like a major part of my body, but I am assured that I can live normally without all these organs or parts of organs. It is an aggressive option but maybe my best chance to have more years of life with the quality of life I have been accustomed to.

This is my first attempt at a blog, I thought it would be difficult, but my niece Paula did the work for me, e-mailing the set-up from Taiwan where she and her husband Ted are living and working for 2 years. I resisted the idea, but it turns out that Paula was right, it is easy, and it seems to be a good way to speak my mind. I've never been accused of being shy, and this seems like a good way to share information, feelings, fears.

Test post

2007-12-21T01:42:00.001-08:00

Just to see what this blog looks like!