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Recently, when I asked my doctor about my allergic reaction to Genasense, I remarked that the drug company might want to do some additional tests to try to identify some characteristic in me that provoked this reaction. Surely, now that it’s happened once, this type of reaction will occur again. Is there more they can know about how to predict its likelihood? Is it as simple as the fact that there are no longer any active tumors in my body, no more Bcl-2 protein to attack?
She thought for a second, then related an experience with one of her earliest study subjects that refutes my last question. The patient has remained cancer-free the entire eight years since the study. The drug committee’s protocol at the time called for eight cycles; the patient’s cancer was gone after four. It was a new study then. My doctor and her patient were both nervous about stopping treatment, so they continued on for sixteen cycles with no adverse reaction to the drug.
So there you have it: one patient with a life-threatening allergic reaction, one non-cancerous patient tolerating the same drug for over two years. Is there any information in that? Is that even a meaningful sample? My experience may be so rare as to be of questionable value, just a red herring.
This may be the end of it. “Everyone’s allergic to something,” my doctor says. I only hope that my altered program continues to produce good results. But I’m trying real hard to keep anxiety out of the equation.
I couldn’t help but hear the conversation on the next couch in the waiting room. The man had just gone off, rather cheerily, to the phlebotomist’s office to have blood drawn. His wife stayed behind to talk with a couple of friends they ran into there. Her tone was a bit desperate, pleading, disbelieving. It was all about the patient.
“He looks like he’s lost weight, but otherwise, he looks pretty good,” one of the friends commented.
“He looks thinner, but his weight is the same. He doesn’t sleep. He says he doesn’t sleep all night.”
“When that happens to me, I eventually doze off,” said Friend. “Is he in pain?”
“Yes, and they can’t tell us the source. The doctor says things are the same, but they can’t say where it is, why he’s in pain.”
“He says he’s full of anxiety,” Wife continued, “and the thoughts wake him at night and he can’t get back to sleep. Then he spends the whole day in bed. He doesn’t get dressed. He’s showered once in three weeks. He doesn’t come downstairs except to eat. He only goes out to come to these appointments. When we’re out, he comments how good the fresh air feels. I encourage him to go out and take walks other times, but he just stays in bed.”
“It sounds like he’s depressed,” said Friend.
“Yes.” Wife was certainly willing to accept the diagnosis, but she wasn’t finished rattling off her catalog of complaints. She didn’t know what to make of him, so she repeated his transgressions, louder and louder, maybe in hopes of scaring off the offending signs of anxiety and depression.
I can certainly relate to that patient’s feelings. I’ve been there. In fact, I never know when the anxiety is going to overtake and kick the wind out of me. I can relate to his wife’s reaction too. I’ve endured no end of criticism from the Wife who sits inside my head suggesting I exercise, seek out more client work, organize and finish my own paperwork, just do something. But it’s not that easy. There’s always the monster waiting around the corner, and he’s not at all shy about taking over my mood.
I wonder sometimes if it’s easier going through a life-threatening event like cancer alone, or with someone else close by. I can certainly see the downside of being by myself, and I’m very grateful for the many people who have reached out to me with kindness and made themselves available.
On the other hand, I’ve seen too many partners lash out at each other. Both sick and non-sick feel helpless. One or the other nags, and one or the other runs away. It’s a very sad and complex problem with a lot of wrong answers. The more people there are involved in the core of the situation, the more expectations get in the way, and the more opportunities exist for things to go bad.
The right answer is that there is no right answer. It's just a matter of facing this thing day by day, and trying not to hurt too many people in the process.
“I can’t believe Thanksgiving is next week already,” my daughter commented last night after we’d talked a while about our plans for that day.
Thanksgiving is my favorite holiday. There are no religious or political themes to wade through, no overblown commercial campaigns to legislate generosity. It’s simply a glorious excuse to share hugs, warmth, and good food with loved ones.
“Next week? For real? Oh no,” I groaned.
“What’s the matter?” she asked, noting my change in tone.
I’d already done the math. “This coming Monday I’m due for my first Abraxane infusion. For about five days after that, food won’t taste like much of anything. Thanksgiving falls right in the middle of that.”
It’s about the people, I keep reminding myself.
“And you’ll take home plenty of leftovers,” my sister generously offered when I made the comment to her afterward. Now, there’s a gesture to be thankful for!
I heard her complaints from the other side of the curtain in our shared hospital room: “I wish someone could pick me up and put me into a spot where I’m comfortable.” Her rants went on and on. “I won’t eat until my stomach clears out. I feel so impacted. I’m in pain.”
At times she sounded condescending. “You don’t understand,” she’d say to her nurses and aides as she refused medications, foods, drink, and treatments they offered that might ease her condition. Other times she was simply angry, augmenting her stubborn refusals by chastising everyone who tried for failing to help her. Too weak and sore to move herself into a comfortable position, she begged over and over, “Please help me sit up, just once more.” But then she’d scream, “You’re hurting me. You’re not doing it right.”
There’s not much in this world worse than constipation; unless it’s someone else’s constipation. There in the next bed, separated from me by a thin curtain, she bargained continually, whining, complaining, promising to be good if someone would only help her. “I can’t,” she whined over and over, and almost at the same time, “Help me.” Is she really saying, “Do it for me”?
“I can’t; I can’t. You try to feed me and I can’t eat. I Don’t. Want. Anything.”
Her private nurse attendant tells her she has to eat if she wants to eliminate. And she needs to eliminate if she wants to go home.
“I don’t want to go home,” she yells. “I want someone to hold my hand,” I hear her say under her breath. “Why won’t they just leave me alone?! Can someone please tell me why they won’t leave me alone?”
I’d been listening to this all day and watching the nurses scurry reluctantly in and out in response to her buzzer-ringing and hollering. They’d do their job perfunctorily and leave as soon as possible; which only made her more angry and ornery and abusive. I could no longer remain silent. I untwisted my IV line, pulled the pole along behind me and stepped behind the curtain.
“I’ll tell you why they won’t leave you alone. You’re in a hospital. It’s their job to try to get you better. And if they can’t make you better, they try to make you more comfortable. But you have been very resistant to their help, which only makes them want to get away from you. If you’re going to get more comfortable, you have to participate to make it happen.”
This is the first time I’d gotten a look at this woman all day. She is gaunt, emaciated, worn out, used up. Her belly is hugely distended. She embodies my memories of cancer from childhood, when “cancer” was one disease and it invariably ended in death. Initially her eyes were downcast and lifeless, with a heavy touch of guilt. She knows she's made my hospital stay less than pleasant; she's made frequent remarks how embarrassed she is about what the person in the next bed must think of her. Now I'm standing in front of her and maybe I'm going to dish her anger back at her.
“Your best bet is to go along with the program here, then get yourself home where you’ll be in a better position to be left alone. Have you looked into hospice?”
“No,” she said, “what’s that?”
I told her the little I know, which is that a person can have care in-home or in-facility, care aimed at making patients comfortable at end-of-life. She could probably get more information from the nurses.
She opened her eyes and looked at me directly. I’d dared to talk about her death.
“This is not fair,” she opened up. “Look at me. My stomach hurts. I can’t sit up. I can’t lie down. I can’t eat. I can’t get comfortable. I’m scared.”
“I understand ‘scared’,” I commiserated, “I have cancer too. But you’re going to have to stop saying ‘can’t’. No one wants to do anything for you if you don’t make an effort to find things that work. You have to let them know what you want and you have to let them try to provide it.”
“You’re right, it’s not fair,” I continued, “But it’s what is. There are a lot of things that aren’t fair.” And I related the story of the man who was struck by a car and killed in my hometown while walking on the sidewalk this past summer.
“I’m not afraid of death,” she said. “What scares me is what I leave behind. It’s having people see me this way, my daughters, their babies. I don’t want them to see me and remember me this way. It’s humiliating.”
“I understand. But you have to remember that what’s particularly unfair about death is that it robs the people left behind of someone they love. If you refuse to see them now, you’re taking away an opportunity for them to see you and love you and connect with you while you’re still alive. It’s awful to lose your mother. Let them have you while you’re still here… for them.”
I hadn’t wanted to touch this woman. Her appearance was scary, her demeanor hostile, hurtful, demanding, unforgiving. But she was looking at me directly through most of this interchange. I’d connected with her and I could see she appreciated it. She motioned for me to sit on her bed and reached out for my hand. We sat there, holding hands and understanding what it means to be in the cancer club.
I won’t hold out for suspense. It didn’t work.
I got to the hospital mid-morning, checked in, then waited in my room for all the pieces to fall into place. The nurses arrived with drugs and equipment, and started up the Genasense pump about 2:30 this afternoon. Within minutes I was consumed by heat, nausea, tight throat – the same reaction as the past two Mondays. This time was particularly intense. I had back spasms. It felt like I was hooked into an electric socket, shocking me randomly to the point of nearly doubling up.
Two of my regular nurses from the cancer center were at bedside, along with two equally wonderful nurses who are on staff at the hospital. All were concerned. All were prepared. I’d had infusions of steroid and Benadryl before starting the Genasense. Once the reaction started, I got additional doses of both plus oxygen. Aftershock waves continued intermittently for about an hour, and by then, the episode was mostly over. The Benadryl knocked me out. I slept.
I’ll see my doctor in the morning and lay out the path. We’ve talked about it already, so I know she intends to proceed with just Abraxane and Temodar. I start taking one Temodar pill each night for six weeks, starting tonight. I’ll get my first Abraxane infusion of the cycle next Monday, as if I’d taken Genasense all week.
It’s a little scary for me to deviate from the plan that was working so well, but I have no choice. The cure can kill me.
Genasense targets Bcl-2, a protein in melanoma cells that prepares them to live forever. Once they’ve been altered to accept cell death, the Abraxane and Temodar come in to do the dirty work. My last PET scans revealed that the tumors are no longer active, no longer alive. It’s quite possible that Genasense is superfluous at this point in my treatment. It’s unsettling, but not an entirely unwarranted proposition.
It may sound a little hokey, but painful as this experience has been, I'm actually glad to have an opportunity to add something to the body of knowledge. The research study will go on, and I'm sure this reaction will surface again, except they will have a clearer idea how to handle it as soon as they see it. My personal involvement is my number one priority, of course, but the study is much bigger than me.
“Wanna see something funny?” I asked my daughter recently while lifting off my wig.
“You’re covered with fuzz!” she exclaimed. “How cute.”
It’s been several weeks since my last Abraxane infusion, the drug that caused me to lose my hair. My head is now covered with hair, feathery and white. It’s not long enough to really keep me from looking bald, and there’s a good chance I’ll lose it again. But in the meantime, it’s pointing the way to what I have to look forward to.
Sometime in the not too distant future I have a decision to make. I would so love to be free of the expensive and time-consuming color habit I never wanted to start in the first place, but once started, I’ve faithfully maintained for the past fifteen or so years. I’m genetically disposed to white hair, but it’s something I was never prepared to welcome on my head. It reminds me too much of my grandmother, who had the snowiest of snow white hair from the earliest I remember her. Now when I see pictures of my young grandmother in her mid-forties, I’m amazed at her young face. That white hair was such a striking statement of “old” that I never got past.
The wig I wear is very close in color to what my hair salon came up with for years. It’s a good match for what my color used to be. But as we age, our skin tone mellows. Mother Nature is the perfect colorist and what she has come up with for me now is white hair to go with my toned down skin. When I see myself bare-headed in the mirror I’m struck with how the halo of white actually brightens up my face.
But then there’s the “old” thing. White hair will always seem old. Am I ready for it? Such a dilemma!
I’d like to post a picture here, but I’ll give it a couple more weeks to grow in before I have another Abraxane reaction and it starts falling out again. Maybe my friends can help me decide. Although, truth be known, who's actually going to tell me I look old?!
A friend sent me an article announcing Genta’s completed appeal to the FDA in clinical trials with CCL (Chronic Lymphocytic Leukemia). It was a typical cut-and-dried news release until I came to the section on “Safety” where it mentioned casually that nine patients experienced "adverse events that resulted in death" in the course of treatment with Genasense.
You can call me naïve if you want. I realize I'm in a potentially life-threatening situation, but I guess I didn't actually think I was in danger of dying until I saw the word "death" in print. That scared me.
My untrained mind connected my severe allergic reaction with the adverse events in the article. I was under the impression that only a handful of patients had this kind of reaction and nine deaths then seemed like a huge percentage of the allergic population.
But it seems I may have mixed apples and oranges and jumped to an unwarranted conclusion.
I emailed my doctor with my questions and concerns and a few hours later received her thoughtful response:
“You cannot apply this to patients with solid tumors. Patients with CLL undergo tumor lysis which can cause kidney failure, heart abnormalities from the rapid release of potassium and they already have a severely impaired immune system with the CLL, so many get very odd infections. You are not this population. …. None of these deaths were from “allergic reactions” they were from “adverse events”. None of the reported info pertains to you.”
She cited her own article on a study in which no melanoma patients in the group of 771 died of drug related complications, and went on to give me an out: if I am not comfortable with the proposed plan of treatment, I can choose to forgo Monday’s in-hospital Genasense infusion and continue with Abraxane and Temodar alone.
What I appreciate most about this woman is that she takes me and my concerns very seriously. She always answers my questions patiently and in language I can understand. She is a treasure!
I will be in the hospital Monday morning for treatment.
I got to the cancer center this morning with computer, clothes, and personal items in tow, ready to start pumping Genasense into my mediport IV and then head for the hospital. As I waited in the exam room for the pre-treatment meeting with my doctor I could hear bits of conversation in the hall. They were talking about me. Things were not going to proceed as planned….
There were a number of reasons to pull the plug again today. Top on the list were the hospital arrangements. It seems there was no guarantee of a room, availability going first to ER patients who are stacked up in hallways as I witnessed firsthand two weeks ago. In addition, the oncology nurse stationed at the hospital is on vacation this week. Although the floor nurses are good, they are each responsible for six patients, whereas the oncology nurse is familiar with and devoted to the special needs of my situation.
There were additional issues, questions posed by the cancer center nursing staff. They didn’t like the idea of starting treatment in one place and moving me to another venue. What if I had a reaction in transit? Who in the hospital has experience with a pump and mediport and can start my IV? Where would they prepare the drug and pump, in hospital or in the cancer center pharmacy? And how will they get the drug to me?
So we’re making progress. We still have a plan, but we also have another delay. I have another week to feel good and energetic and they have another week to work out the details. It’s a bit disappointing to be prepared to move ahead and then have to wait, but it’s not anywhere near as bad as not knowing.
I will get a phone call Sunday telling me when to show up at the hospital Monday morning. Two of my regular nurses will be there to help get things started, a nurse supervisor from the infusion floor and the nurse program coordinator in charge of research. And we should know by Tuesday how well the pre-treatment works for me.
After a week of keeping my mind disengaged during awake-time with PacMan and Sudoku online, my current mind-numbing techniques of choice, and nights of poor sleep, I sat down to talk with my doctor this morning and started to cry.
“I don’t usually cry about this, but I’m so scared,” I confessed somewhat apologetically. “What was saving my life is now threatening to kill me.”
“It’s okay. I have a plan.”
I knew she would, of course, but the wait had seemed interminable.
She spoke with the Genta research representatives late last week. They were, in fact, in New York to attend two of her presentations to cancer professionals on this research study. When she told them about my experience they weren’t overly surprised; they knew what to do. My doctor has administered over half the Genasense drug taken by melanoma patients in this country and had never encountered this reaction with “solid tumor”, but they had seen it in a handful of Chronic Lymphocytic Leukemia (CLL) patients in other trials. Their method of dealing with the situation is to “pre-treat” the patient with a high dose of a strong steroid that counteracts and prevents the allergic reaction. When they pre-treat, the patients go on to receive a full week of IV infusion without life-threatening side effects.
I looked at her skeptically. “What if I go home and pass out on my kitchen floor when the steroid wears off?”
“That’s why I want to keep you under observation for a couple of days,” she said. “We’ll start the treatment and then you can go to the hospital for an overnight stay, maybe two nights. If something happens, it will be in the first twenty-four hours. I want you here in the cancer center most of the day, where we know your treatment history, and I want you there after that, so they can monitor your blood pressure and condition.”
Which ruled out staying at my daughter’s apartment.
“This begs the question in my untrained mind. Do I possibly have leukemia?”
“No chance of it,” she said. “The major symptom of that is a very high white blood cell count. We monitor your blood all the time and your counts are normal.”
“It’s a little scary, but I’ll do it if you believe it’s worth a try.”
“The worst case scenario is that it happens again, we have to scrap the Genasense, and we continue with Abraxane and Temodar alone. In your case, there were no live tumors on your last scans, so I’d be pretty comfortable with that option. And if you have to abandon the Genasense, they’ll still keep you in the study,” which means they’d continue to follow my progress, and pay for drugs not covered by insurance.
So she sent me home to pack a bag, and we scheduled Day 1 for tomorrow.
I don’t mean to bludgeon any of my dear friends with this, but it’s been a bad week for me. I can’t seem to keep my mind on anything; not the work, not the fun stuff. This hammers home the point for me all over again that the worst state of all is uncertainty. Not knowing, not having a plan… it robs concentration. It’s deadly demoralizing.
I had a gynecological exam this afternoon… yes, another doctor chasing down the basis of yet another set of symptoms, or maybe more side effects. My mind wandered as I reclined on the examination table, and all of a sudden I found myself wanting to cry and wishing for my Mommy.
It’s funny how you never outgrow that urge to be cradled.
On occasion I like to remind myself that I’m a computer expert. Computer dinosaur may be more like it, since I’ve been involved with all manner of hardware and software since the mid-sixties. I know my way around a technical problem; that’s a big part of my life, and one that gives me a lot of pleasure. But there are a few unexpected things that always give me trouble.
Maps, for example. I need to turn a map upside down to read it if I’m heading south. And telephones. I can’t ever seem to get the hang of call-waiting and more often than not, I disconnect one party or the other… or both. And worst of all, the metric system.
Now you’d think the metric system would be easy for my logic-based mind to grasp. After all, it’s very easy to multiply and divide by ten. But in addition to logic, my brain runs on images. Inches and feet and quarts are part of my visual vocabulary; centimeters and liters are foreign.
I mention my trouble with the metric system because I noticed an error in a recent blog entry. I said that my tumors had shrunk from 1.6 to .9 cm, when in fact that should have been millimeters, not centimeters! That’s a big difference. The tumors started out quite small and they are being reduced to dust at this point. But .9 cm is nearly half an inch!
I mentioned this error to an aunt the other night in conversation and she was very relieved. Unlike me, she is not metric-challenged and had been concerned about the size I first reported. I changed the blog entry, but I know there are others, like my aunt, who had already read it and haven’t seen the correction.
It was a wonderful Thanksgiving; a small family gathering in upstate New York, filled with warmth and hugs and lots of good food. My taste was off, but it was still delicious! And it was a rare opportunity to enjoy both daughters at the same place and time.
