Wednesday, July 30, 2008
“The scan is what we expected,” my doctor said when she entered the exam room. “No new disease, but the tumors that are there are lit up. That’s because they’re inflamed."
She was referring to the PET portion of the scan which tracks the radioactive glucose injected into my body beforehand. Malignant cells gobble up the glucose more readily than regular cells, so they show up as points of light in the pictures.
"If it were up to me, I wouldn’t do the twelve-week scan at all, just the one at twenty-four weeks. But the FDA requires it.”
My side effects over the past three weeks have been nearly unbearable. The itch and rash are gone, for the most part, but I’ve still got pancreatitis, so I continue to have bouts of nausea and vomiting, even though the anti-nausea pills I take control my queasiness during the day. I also sleep a lot, feel very weak, and have extremely low energy when awake. When I reported the symptoms to my doctor, she sent me to the treatment floor for an infusion of steroid to boost my energy level.
In fact, from the laundry list I presented, she suspects hypothyroidism as well as pancreatitis, so she also ordered more blood tests, commenting that the immunotherapy tends to unleash certain elements into the blood that cause “little itises”, and these inflamed organs can cause lots of uncomfortable symptoms. She’ll call me with results of the tests, and plan to see me in a month to make sure things are under control by then. We’ll be in touch via email and I’ll go in to see her sooner if things don’t clear up by next week.
It’s unnerving for me to watch this process continue. I would certainly like to be disease-free. I’d like to stop having side effects from drugs that address one issue while compromising another. I’d like to forget about the medicine-balancing-act that attempts to keep it all under control.
On the other hand, the disease has not progressed in over a year. That is certainly good news. It makes the condition manageable. At that slow rate, it gives the immunotherapy a chance to settle in and work over the long term.
Thursday, July 24, 2008
I make it a point not to write about other people in my blog. It is, after all, my blog and they didn’t ask to be included. I’m making this exception because I already mentioned my ex in a recent post, it’s integral to what I’m going through, and he never reads my blog anyway.
For those of you who know of my difficulties with my ex and who were pleased to see he’s been helping me, know that there are no easy routes or straight lines. I got into a hassle with him yesterday, ran aground of the issues that undermined our nearly twenty-five year marriage. It’s no surprise, of course.
My ex’s most generous impulses are inevitably undermined by his stingy follow through. Of course, he doesn’t see it that way, doesn’t see himself as stingy or withholding. He’d call it self-protection, preservation of his resources to ensure his own care before he can consider distributing them to others. This always drove me crazy when we were married. I’d count on his implied generosity which rarely made it past the suggestion stage. I’d end up feeling cheated, denied. He’d sense my resentment and hold his valuables closer to himself lest they be wrenched from him against his will. Needless to say, the marriage suffered. There was a huge amount of emotion bound into this difference of expectations. Toward the end of our time living together, it felt like we were speaking different languages. It became impossible to communicate.
Accordingly, what he does give freely is advice, much of it unsolicited. He constantly scours various sources of media for more and more facts that support his outlook and opinions. He loves to send people articles presenting some unpopular idea or other that he holds dear. His knowledge is the one thing he’s not afraid to lose, so he shares it readily.
I am deeply mistrustful of “facts” which strike me as lies presented selectively to uphold whatever one wants them to mean. I tend to see at least two sides to every issue, so my approach, on the other hand, is to base decisions on emotion and instinct. He characterizes this process as denial.
It’s been eleven years since we separated, ten years since the divorce. Time has rounded some of the sharp edges that threatened to slash each other to pieces. But the differences are still there, still capable of fueling explosions of baggage where dirty underwear flies in all directions.
We got into an argument yesterday over this very sort of thing. He had previously come up with an idea for loaning me money collateralized by my life insurance. In other words, I’d add him as a partial beneficiary on the policy and he’d loan me that portion of the death benefit. That seemed a logical and welcome solution to my immediate crisis. It would get me through the short term, allow me to pay my mortgage and other essential bills, and buy me time to implement more long term solutions to my situation. And let’s face it, all solutions take time to get up to speed and return rewards.
But he seems to have reconsidered this option. It now strikes him as ghoulish. He can’t foresee me paying him back before I die and doesn’t want repayment contingent on my death. Plus, he fears that such a solution would introduce unwelcome emotional complications with my daughters.
I’m caught in a bind. I appreciate the help he’s given me in terms of figuring out what needs to be done. But I also need a way to finance the next few weeks while I make my way over hot coals to get to a place of more income and fewer expenses. He will help me with some money, but far less than I had hoped for, and with many more strings attached.
This process is exhausting and extremely stressful. I feel like I’m getting an ulcer.
Wednesday, July 23, 2008
The bouts of nausea continue. I wake up queasy every morning and sometime during the day, usually at night, am overcome with an urge to vomit. It sometimes passes without incident, but it’s uncomfortable nonetheless.
My doctor says that avoiding fatty foods is the most important factor, but the only thing that fixes this is “tincture of time.” In the meantime, she suggested I take an anti-nausea pill in the morning to control the queasiness during the day. I started doing so several days ago, and the drug helps. I still get nauseous out of the blue. Last night it woke me from a deep sleep at 2 am.
The good news is I’ve lost some weight, about five pounds in the last two weeks. Believe me, it’s a lousy way to diet!
Tuesday, July 22, 2008
Some of my most recent posts are pretty bleak. At least I was feeling pretty bleak when I wrote them. I’m not free of the problems that led me to the overwhelming situation I’m in, but I’ve gotten some good advice in the past two weeks and finally have some plans in motion to address the issues.
My top priority is to increase my income and reduce expenses so I can stay in my house. Toward that end, I’ve made an arrangement with my NYC client to spend two days onsite instead of one. Even with the discount I offered them, this raises my income substantially. Plus it leaves me free for other billable work and essential tasks.
One of my friends directed a potential new client my way (thank you Cathy!), and I’ve set up a job interview with a consulting firm near my home/office that’s looking for consultants whose skills combine modern and ancient technologies. My daughter found the ad for this position on the popular free bulletin board, Craigslist, and thought I might qualify even though she didn’t know what COBOL is!
I’ve accepted that I can (must!) do something I never wanted to consider before: rent out a room in my house. Over the next few weeks I’ll rearrange a couple of rooms to make a bedroom available for someone else and start looking for a responsible professional to rent to.
Yesterday I met with a CPA who gave me excellent advice about how to discharge some of the massive unsecured debt I’ve accumulated, and how to deal with two ill-timed and devastating real estate investments that have added to the burden. I will probably need to spend hours on the phone, but if I get to the right people, I may be able to handle some of the problems myself, without having to consider bankruptcy.
I’m working on it. And I have an unexpected ally: my ex-husband.
I went to him reluctantly because a year ago I asked him for financial help and he turned me down. Not only did he dismiss the idea completely, but he said some insensitive things at the time that insulted and stung me. Not because he doesn’t care what happens to me, but because of his own limitations, as I slowly came to accept. This time is different. I’m desperate and he recognizes it. He’s offered help in a form I can use. He’s helping me set priorities and work through the details, things he's good at. And he’ll provide some stopgap financial aid in a way he can live with. He’s the ear and the feedback I need right now, and things are indeed looking up.
Tuesday, July 15, 2008
The last few days I’ve had an on-again-off-again ache in my stomach. It feels acidic, ulcer-like. Sometimes it swells and blooms into a wave of nausea. Two days ago it grew very strong and I vomited most of the meal I’d just eaten. Last night it happened again several hours after dinner. I didn’t have much in my stomach at that point, so I stood over the toilet drooling and dry-heaving until it passed. In both instances, it passed pretty quickly.
Big question: Is it the drugs or is it the stress? (Or maybe the cabbage salad I’d eaten both days?)
Footnote: I met with my doctor earlier and told her about the vomiting. She had my latest lab report in front of her and was about to ask me if I’ve been nauseous. The labs showed an elevated level of pancreatic enzymes, “a touch of pancreatitis” which can cause nausea, especially from fatty foods.
In addition to the cabbage salad, I had spare ribs both days. I cook them on the outdoor grill with nothing on them, so a lot of the fat drips off, but they are still a fatty cut of meat.
I’m at the Cancer Center for the last of my four initial immunotherapy treatments. In three weeks I’ll have a scan, and see my doctor a couple of days later. Then I’ll be free of medical appointments for three whole months!
In late October I’ll have another, more meaningful scan, and a maintenance infusion of Ipilimumab, and that will be the schedule from then on: treatment and scan every three months as long as my doctor and I want to keep it going.
In truth, I feel very good. I like the idea that my own immune system is doing the heavy lifting; I’m not being force-fed poisons that kill everything in sight and suppress my immune system in the process. Chemotherapy is hard to endure; this treatment is much easier on the system and much easier to live with.
Sunday, July 13, 2008
I was at the Cancer Center on Friday for blood work and a urinalysis. After the phlebotomist drew blood, he handed me a plastic cup and I went off to the bathroom to fill it. I sat down, my mind wandered, and all of a sudden I realized I was still holding the cup, but I’d peed in the toilet!
I then had to sit around drinking water and waiting to fill my bladder again. As a result, I missed my train back to Westchester by a couple of minutes, and trains only run once an hour in the middle of the day. So I found a seat in Grand Central’s food court to catch up on some client work, berating myself for such a boneheaded move, until….
I caught sight out of the corner of my eye of someone carrying a bicycle downstairs, headed toward me. It looked like the one my client rides to the office, I thought. Then I looked at the person behind the bike and sure enough, it was him.
We chatted for a few minutes, and before he ran to catch his train I said, “Let me leave you with an idea: Is there any way I can put in more hours for you? The last year has been hard on me with all the cancer stuff I’ve had to attend to. I need to increase my income."
“You mean an arrangement to work twenty hours or so for a fixed amount? I’d really like that,” he said. “I could offload a lot of stuff to you and have more time to work on the things I’m supposed to be doing.”
His problem is that the company where he heads the small IT department has invested in a custom web-based project that’s overrun its time and budget and hasn’t started making money yet. The company's owner has instructed everyone to scale back expenses.
“Let’s talk about it when you come in next week. I’d like to figure a way to sell the idea.”
I was so jazzed when he left. The encounter felt like a sign. I’ve been going to this client site only once a week lately. I like going there. The man I work with, the one with the bicycle, is bright, an eager learner; I've taught him a lot about Visual FoxPro and he likes what I do for them. But once a week means I have to pick up dropped threads of thought every time I go back. The consistency of twenty hours would make me more valuable to them. And it would make bicycle-man more valuable too; it would free him up to be a more effective IT visionary.
Plus, it would nearly triple my billable hours there. It would go a long way toward covering the expenses I’ve been struggling with.
I hope we can work this out.
Saturday, July 12, 2008
I’ve always been a good sleeper; rarely had any trouble falling asleep, and mostly slept through the night. These are exceptional times.
In the last year I’ve had many instances of waking at 4am or so. The thoughts and anxieties that wake me make it difficult to get back to sleep once I’ve had four or five hours sleep.
Lately I’ve gotten into a terrible pattern. It’s almost every other night that I can’t fall asleep at all. Sometimes I get up and read or try to work. Or I just lie awake listening to radio news (sleep-inducing noise) until about 4am. The next night I’m so exhausted I sleep through the night. But being depressed, I then may sleep for ten or more hours. The next night it starts again: I can’t fall asleep.
I’ve always been an avid eater. I’ve heard that some people lose their appetite when depressed, but that was never me. I’ve mostly used food to curb anxiety.
Not now. Now, food holds little appeal. I eat less and rarely get pleasure from it. The only satisfaction comes from knowing I made it through another day and managed to feed myself.
Stress may be more devastating than cancer. I wonder what it’s doing to my health.
Thursday, July 10, 2008
It’s been a bad month. I haven’t posted to the blog and some of you have gotten in touch with me when you noticed. It’s just been a bad month.
It took a couple of weeks to shake the virus, fever, and fatigue from the beginning of June, but it’s gone and physically I’m okay.
My new treatment comes with rash and itch, particularly on my arms, but sometimes also on my neck, thighs, shins, and feet as well. The rash looks a bit like the goose bumps you get when you’re cold, not red until I scratch myself raw. The itch appears to be independent and comes and goes from somewhere underneath my skin. I try to keep my hands away, but once I start scratching, it feels like I’ll have to rip my skin off to get at it. Sometimes I wake at night and find myself scratching; it’s a bit easier to control when I’m awake since I always have lotions, gels, powders, and creams nearby. The topical stuff works for awhile.
But that’s just the physical. I have much bigger, more humiliating problems that make me want to hide and stay away from everyone. Cancer and the economy have taken their toll on me. I’m facing a devastating financial meltdown that has me terrified, extremely stressed, and yes, depressed.
I spoke with a financial counselor yesterday. He pointed out the obvious, what I’ve been avoiding for months. My income simply doesn’t cover my expenses, let alone pay back the greater and greater debt I’ve incurred attempting to keep afloat. He advised me to contact a bankruptcy lawyer familiar with the regulations in my state in order to explore my options. I will do that. However, in my readings about bankruptcy and discussion with the counselor, I’m concerned that following that route will introduce as many or more problems as it promises to solve. Without going into long, drawn-out detail, my income, though insufficient to cover my basic expenses, may be more than the law allows for me to qualify for bankruptcy relief.
I feel terrible. I feel like a failure. Feeling like a failure is counter-productive, at best.
This is a very difficult post for me to write and make public. People I’ve confided my situation to keep reminding me I’m a survivor; they say I’ll get through this. That may be, but for now I feel like I’m being flushed down a drain. I have more energy than I’ve had for most of the past year, but now I need to use that energy to figure out whether and where and how to move before I lose my house outright. It’s particularly difficult to go through this crisis without a partner.