Another treatment

I’m on my way into the City for yet another infusion of Abraxane. This is the part of the cycle that feels most like real chemotherapy. I mean, it’s all chemotherapy of course, including the nightly Temodar pills, the symptom management, and the daily entries in my drug diary. But this involves bags of intravenous drugs and most of a day in the Cancer Center.

I have clear, definable reactions to the Abraxane, in fact to the whole treatment cocktail: Pepcid, Kytril, Decadron; I know what to expect for the next few days in terms of my sense of taste, my energy, my hair, and my digestive system. At other times in the cycle, I can’t differentiate what is “reaction” from what is simply another ache, pain, or bodily expression of living and aging.

I’ve written about this part of the cycle before. Maybe I choose the topic because it’s easy to identify, easy to define, and therefore, easy to live with.

In any case, I’m halfway through the fifth treatment cycle. There are two more weeks of Temodar pills to take and on April 21st I’ll have another scan that promises to be very telling. It will either resume improving from where the last scan stalled, or it will continue along in plateau mode. It could mean changing the course of treatment if there is no further improvement, a development I don’t like to think about, though I can’t seem to help it. Currently, this treatment juncture is always near the surface of my mind.

Latest scan results

I met with my doctor this morning to go over the results of last Thursday’s scan. As I was sitting in the exam room, waiting for her to show up, she popped her head in and gave the “thumbs up” sign. “You’re good to go.”

“Does that mean it was a clean scan?” I asked.

“No, stable. We’ll give it another cycle and see where we go from there.”

I must have looked at her quizzically because she said “Stable is good. I just have to finish up with another patient; then I’ll come back and let you know what my thinking is about this.”

She’d said “Stable is good,” but I heard “but…”.

When she returned, she explained that frequently patients plateau for no apparent reason. The scan was good in that there was nothing negative about it, no hot spots, no new growth.

No news is good news, one might say. Only thing is, there was no change, so therefore we can’t infer anything about what is happening or why. We have to wait for the next scan for more information.

Tonight I start taking drugs for my fifth chemo cycle. In eight weeks, I’ll have another scan that should fill in the blanks of this cancer puzzle. If the remaining tumors resume their shrinking-and-disappearing act, we can proceed with the course we’re on. If the next scan is a continuation of the plateau, my doctor may want to pull me out of the study and change the treatment.

“I don’t mind taking you off study, since you’re just taking Temodar and Abraxane, which are standard chemotherapy drugs we can always go back to. If we switch treatment, it will be to an immunotherapy, not, strictly speaking, chemotherapy.” And here she rattled off some multi-syllabic medical terms to describe the drugs I’d never heard of.

We talked for a while about what that other treatment consists of. Basically, it seeks out all foreign elements in the body and stimulates immune system reactions to them. Her findings are that the drug is even more effective after taking Temodar. There could be side effects, but some people have no adverse reaction at all.

I must say, a lot of this went right over my head. I really didn’t want to hear about new forms of treatment. I’m familiar with the one I’ve been following since last June. I want it to be over, not continue down another path that would extend it possibly beyond the summer. On the other hand, I’m grateful that she is comfortable sharing her thinking with me.

“This is all theoretical,” she said. “I don’t know exactly what to make of the results, so I’m already thinking two steps ahead, but so far, everything is good.”

Still the side effects

Last week, about two weeks after an Abraxane infusion, I lost my hair for the third time. This business of growing and losing hair is one of the conditions I have to accept until the whole of the treatment is complete. I had another Abraxane infusion this morning, but I don’t have much hair left to lose. It grows back a bit between cycles, when I have an extra two Abraxane-free weeks. Just when it starts looking cute again, it’s time to lose it. I’m not fond of this process.

During the 42-day drug-taking phase that includes two Abraxane infusions and a nightly Temodar pill, I have a number of other side effects to manage. Temodar and Zofran, the anti-nausea pill I take with it, can cause headaches, constipation, heartburn, itchiness, hives, and who knows what-all else! In my case, headaches can take the form of migraine auras. My doctor agrees that they’re probably the same old stress-induced phenomena I’ve experienced for nearly thirty years, but next time it happens she may send me for an MRI.

Before my nurse starts administering Abraxane, I get intravenous doses of Benadryl, Pepcid, some steroid whose name I never remember (Dexamethasone), and another anti-nausea drug (Kytril). I get powerful doses of all of these to counteract the effects of the killer Abraxane. I leave the treatment room feeling groggy from the Benadryl. By tomorrow I’ll be speedy and energized from the steroid and that will last for two or three days. I'll also lose my sense of taste for three or four days between now and the weekend.

“Do you experience neuropathies?” my treatment nurse asked.

“What’s that?”

“When irritated nerves numb your fingers and toes and make them tingle.”

“Come to think of it, I do. My toes tend to feel that way when I wear anything more restrictive than Birkenstocks. I didn’t know that was a symptom too.”

I’m looking forward to the time when a headache is just a headache, and I can try out my spiky white (hopefully curly) hairdo on the world.

Happy New Year!

What a strange thing time is. Minutes crawl by – in the case of my life this past year, minutes crawled by menacingly – but weeks zoom past. And like it or not, ready or not, another year has been consumed.

It’s the second week following my latest chemotherapy cycle and I have another PET scan scheduled this week. I’m nervous about it. I don’t know what to expect since I stopped taking Genasense. The last time I spoke with my doctor about it, she seemed unfazed.

“There’s no reason to think the results of this scan will be any less positive than they’ve been in the past,” she said. “It’s a clinical trial. We don’t know what the exact dosage needs to be in order to be effective.”

I keep reminding myself of that; the Genasense I took through the first two cycles may very well have completed its job. It boosted the effects of the remaining two drugs I take, that’s for sure. It’s likely the Abraxane and Temodar can continue to wipe out the small amount of remaining cancer without assistance. We’ll know more when the results of the scan are in and I meet with my doctor again on Monday.

And in the meantime, Happy New Year! I wish peace and great health to all my friends and family, all of you who have sent good wishes my way this past year. May 2008 be wonderful for all of us!

Hair today, gone tomorrow

Nearly two weeks ago, a couple of days after my last Abraxane infusion, my skin was very tender to the touch, particularly on top of my head. It was a symptom I remembered from the earlier treatment cycles, and I took it as a sign that my scalp was preparing to give up its recent crop of newly grown hair. But it didn’t happen.

I met with my doctor this morning and mentioned that I still have hair. Her reaction amounted to “Go figure.” She told me that another of her patients just went through his entire first cycle without losing his hair. Another medical mystery, and from my point of view, not an unwelcome one. It was easy getting used to having hair again.

Tonight I sat down to my computer and noticed short white hairs all over the keyboard. I tugged at locks and they came out in my hand. Oh well. Once again, I’ll be bald by the end of the week.

The cruelest cut of all…

“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!

My contribution to the research

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.

Feathers

“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?!

Mystery unraveling

It happened again….

I went into the City to start the third treatment cycle after my aborted attempt last week. Everyone seemed a little nervous.

I talked first with the nurse program coordinator and with my oncologist, as I always do on infusion days. They were particularly interested in how I’ve felt this past week. My doctor was now leaning toward the theory that my freakish episode last Monday was the result of a bolus of Genasense getting pushed too fast into my system. She wanted to exercise caution and have me stay in the center for observation for about an hour after starting my IV pump. That was okay with me since I had my computer with me, as I always do in such situations.

I went to the treatment floor to start my infusion. Everything went smoothly. I ate my lunch (not pastrami) while waiting for the drugs to come up from the pharmacy. The infusion nurse drew blood from my arm rather than through the mediport. She started the IV and I sat in my cubicle for an hour or so while it pumped quietly. Several people poked their heads in to see how I was doing. Everything appeared fine.

I heard the nurse on the phone at her station telling someone that I looked good. She came in to tell me I could go home. I leaned forward to pack up my computer and…. “I don’t think so,” I said. All of a sudden I felt the heat rush, the nausea, the dizziness, the closed throat. “I think you should take my blood pressure.” And sure enough, it had suddenly fallen to 84/53.

Oh no, here we go again. In minutes I was throwing up and feeling faint.

“Once is a fluke. Twice is an allergy,” My doctor said as they pumped me with steroid, Benadryl, oxygen, and she made the decision to abort treatment again for another week.

I am so bummed!

“What are we going to do?! Can’t we just keep the pump going and I’ll live with the symptoms?” I asked.

She looked at me as if explaining to a child. “I’m not going to kill you with this treatment. We’ll come up with something.”

And she will. She has more experience with this drug than anyone else, and she hasn’t seen this kind of reaction before. But maybe the drug company has some information to share. She will come up with an altered plan by next week. Maybe we’ll continue Abraxane and Temodar, the killing drugs, without the Genasense. Maybe Genasense has done its work and the other two can continue to finish the job without it.

This is not going to be an easy week. I’ll try not to speculate and worry too much. The medical details are, after all, way beyond my expertise. But it sure was comforting to have a plan and simply be able to follow it. This business of being unsure about where I’m going is scary. The best part is that I know I’m in good hands and I trust my doctor to come up with something. Until I know more, I’m going to fight the urge to let it get me down.

Another treatment day

The day started badly. I showered and dressed and got ready for a long appointment in the Cancer Center. But I missed my train. The next one would come along in about half an hour and get me into the City about forty-five minutes late. Standing on the platform, I remember the lunch I so carefully prepared to bring with me. It was still sitting on my kitchen counter. Whoo boy.

As I walk from Grand Central to the doctor’s office, already feeling hungry and craving pastrami, I call my daughter, who I hoped would be at her desk computer. “Can you find me a pastrami sandwich on Third Avenue between 42nd and 34th Streets?” And sure enough, she does: “Sarge’s Deli, where pastrami is king.” I knew if anyone could locate something like that in a trice it would be my daughter, the “semantic web” specialist. I was simply delighted to be able to satisfy my craving.

The appointment starts, as always, with blood work. Sometimes there are more tubes to fill than others. Sometimes there is more blood to draw after the infusion. But always, we start by drawing blood.

I know all the phlebotomists by name. They see lots of patients in the course of a day, so they are all well practiced and good. But they have different strengths. Josef, for example is my favorite. His needle sticks never cause me pain. Never. Today, Judith drew the blood. I feel the needle sting as it goes in, and she sometimes leaves small bruises behind, but she is always very engaging and we chat amiably.

After meeting with the doctor and nurses who monitor my participation in the program, I go downstairs to the treatment floor. By this time, my Genasense IV bag is empty and the electronic pump is beeping wildly. People in the elevator eye me suspiciously. Is this an escape of some sort?

I sit in my private room and work at the computer while my infusion nurse prepares my chart and orders meds from the pharmacy. When the drugs arrive, she draws more blood. This time, she fills the test tubes from the line into the mediport. It is quick and there is no sting whatsoever. Then she puts the mediport to its more intended use as IV, and infuses first the steroid, then the Abraxane.

By this time, I am very tired. I fall asleep while the IV drains into me, and when it’s over, I have a sort-of dream that I can’t open my mouth to speak, can’t lift my arms, can’t move my head or body. It’s disorienting, but I’ve had this dream before, usually when sleeping in a car. I think it comes from being comfortable enough to sleep, but feeling restricted by the reclining seat. There’s no room to turn over, and I can’t exit the seat without changing to a sitting position. When the nurse comes by to disconnect my line and tell me I can leave, I ask if I can stay and sleep. “Of course,” she says.

An hour or so later, I wake, pack my bag, and get up to leave. I stop at the nurses’ desk to say goodbye. She looks at me and says, “Go back and sit down. I’m calling your doctor.” It seems my face is breaking out in hives. Oh no. This happened a few weeks ago. It started on the weekend, just before the last Abraxane infusion. The steroids cleared it up for a few days, but the condition returned with an intense vengeance several days later when they wore off.

So, it’s back upstairs to show off my hives and get yet more drugs: Claritin for the trip home, and Benadryl to take when I’m near my bed, as it will make me sleepy. They want me to take anti-allergy medications for the rest of the week as a proactive measure.

The day ended badly. I fell asleep from the Benadryl and overslept the radio alarm I’d set to wake up and take my Temodar chemotherapy pill. I hope it’s all right that I took it in the middle of the night instead.

So many medications to keep straight....

Food

Anyone who knows me knows that I love good food.

I used to be a pretty good cook, but it was always driven by what I wanted to eat. I enjoyed getting creative, mixing and matching tastes in my head before translating them to actual dishes. These days, I prefer to have others do the cooking, but I still love sitting down to a good meal.

Yesterday I had my Abraxane infusion, and for the next few days I can expect some of the most intense side effects of the entire cycle. The cruelest of all is that it robs my sense of taste! It starts with a metallic taste in my mouth, and by tomorrow, most food won’t have more flavor than paper. At the same time, it brings intense and sudden hunger pangs that leave me weak if I ignore them.

I stopped for a slice of pizza on the way home from work and remembered what I was in for. I’d been craving the pizza, but when it got to my mouth, all I could taste was salt. I couldn't finish it.

I’m looking forward to Saturday, when my taste buds resume their normally exalted function. For sure, you’ll find me in the pizza parlor, savoring the slice I missed out on tonight!

Good read #1

A friend recommended a book that addresses problems with health care insurers, the obstacles they throw down in our way to keep from paying what it costs to keep us alive. The author is a cancer survivor who lived through a grueling ordeal with a rare cancer, and at the same time, fought her insurer to get her treatment paid for. Not only that, but faced with misdiagnoses and dismissive treatment on the part of her HMO, Laurie Todd researched and found the best treatment for her form of cancer, sought out the premier expert on that treatment, and secured approval to fly across the country to obtain that out-of-network treatment for herself… on her HMO’s dime. She realized early on that she was at least as likely to die from neglect by her insurer as from any cancer in her body… and she’d have none of it!

Laurie’s book is a gem, full of wisdom and attitude. Fight Your Health Insurer and Win: Secrets of the Insurance Warrior is her firsthand account of what she did and said to get her treatment approved and paid for in the face of the insurer’s claims that it was “experimental” and therefore, not covered. It’s also a very moving portrayal of her experience with a living nightmare, pseudomyxoma peritonei – appendix cancer. From her account, the more familiar forms of cancer are downright well behaved compared to this one.

Appendix cancer has a tendency to entangle all the abdominal organs with tumor and scar tissue. The lengthy procedure she ultimately underwent cut out parts of, and re-sectioned, many of her abdominal organs, and then, during the course of the surgery, applied heated chemotherapy agents directly onto those organs and throughout the abdominal cavity. It left her in the hospital for forty days afterward, and too weak to care for herself even then.

Since there was no-one in her HMO qualified to perform or recommend such a procedure, she had to become her own advocate. In so doing, the feisty Laurie Todd “turned [a prognosis of] ‘two good years’ into an 80% chance of twenty good years. It was a huge, terrifying, potentially fatal war that I had to fight. The best that I could do was put my head down, embrace the battle, and forge ahead.”

And ultimately, it was a task she found extremely empowering.

Much of Laurie’s book reads with the authority backed by a legal degree. She is not a lawyer, but her presentation is very professional and persuasive. She is acutely aware of the inherent conflict of interest built into the health care reimbursement system. Insurers hire doctors to provide care, but give them a mandate to hold down costs. In other words, the doctors’ professional oath dictates they provide lifesaving care, but in order to keep their jobs or their contracts, they are bound to their employer’s orders to keep within budget. Laurie sums it up this way: “If cost containment was the imperative, their primary goal was then to get me and my expensive and difficult cancer to just go away. Have no treatment, have locally available treatment, have only palliative treatment. And die – the sooner; the better.”

But she’s also smart enough to know that the insurance machine is supposed to pay for treatment. She knew from the outset that she had a good shot at getting them to do the right thing: “The folks at the insurance company are bureaucrats; they always use the same tactics in the same order every time. You are smarter than they are; it is a battle of wits with an unarmed opponent!”

Laurie’s book, available on her website, is a must read, even if you don’t have cancer. As she points out: “Nobody has a magic charm to protect them from Bad Medical Trouble.” It can happen anytime, and this book can pre-arm you with information to get you through some of the roadblocks.

Since her ordeal, Laurie has made it her mission to help others in the same situation. Based on her own experience, she has helped many other patients prepare successful insurance appeals. She speaks on the subject and conducts book signings.

In my case, I’m actually taking experimental drugs, so it’s no surprise insurance won’t pay for those. But the drug companies have a vested interest in seeing that the drugs get consumed, tested, and ultimately approved, so they donate them to the researchers. This is fortunate for me, as one dose of Abraxane alone costs $10,000, and the protocol calls for two doses per cycle. In addition, my oncologist's office administrator has done a phenomenal job of holding their feet to the fire for the myriad ongoing tests I’m subjected to.

So, thus far I haven't needed to personally take on my insurance carrier, but it’s comforting to know Laurie is only an email away.

The little buggers are on the run!

I had my second PET scan on Monday, a follow-up diagnostic test just like the one I had in mid-June. This one was administered to measure the effects of my first six weeks of chemotherapy.

The procedure started with an intravenous infusion of radioactive glucose and a large drink of barium sulfate. Then I sat for about an hour while my body took up the fluids.

Next step was a CT scan. I lay on my back on a table that slides into a huge, space-age looking device. If you’ve never encountered such a machine, in person or on the likes of Grey’s Anatomy, this very imposing piece of equipment is a large, round, open-ended tunnel that projects x-rays toward you as you slide slowly through it. Unlike a simple x-ray machine, it records a series of images that present a three-dimensional view of the subject’s insides. It’s not painful or particularly uncomfortable. You simply lie still as the table slides to the proper positions to photograph what the doctor wants to see. This procedure took another hour, as they scanned my entire body, head to toe. A trained radiologist later reviewed the recorded images.

All cells consume glucose, but malignant cells are particularly greedy. They have a higher rate of metabolism than normal cells, so gobble up the glucose voraciously, and in the process, they light up from the radioactive substance. The radiologist looks for these metabolic “hot spots” to determine where tumors are growing.

In June, they identified about ten tiny nodules. This wasn’t a lot of cancer, either in size or amount. The largest tumor was less than two centimeters. Two months later, this past Monday, there were no hot spots at all! All the glucose was taken up equally. There were no visible pinpoints of light in the PET portion of the scan.

So where did they go? Well, the tumors are still there. They are dead and dying, but my body hasn’t fully absorbed or flushed them. They show up on the CT images as dull concentrations of cells, but there is nothing “hot” to be found.

I met with my oncologist this morning. She is very excited about these results. Needless to say, I am also. She tells me that when patients respond to this treatment in this manner, they respond “completely.” They go into remission “forever.”

Those are actually hard words to hear. I’ve been so very anxious the past few weeks, increasingly so as the date for the PET scan approached. I’ve been preparing myself for the best possible outcome, but I also have experience being blindsided. Twice, cancer fell out of the sky and took over my life. Twice, I got phone calls informing me I had melanoma I had no suspicion was there. At the same time I felt that my body was strong and healing, I was afraid to ignore the possibility of unwanted results.

“And how long is forever?” I asked, cautiously optimistic. After all, I was cancer-free for five years until this spring.

“Eight years,” the extent of the research so far with this clinical trial. Patients continue to get scanned once a year, but so far, their cancer hasn’t returned.

Where to next?

This coming Monday I’ll start the second treatment cycle. Another six weeks of drugs, starting with a weeklong infusion of Genasense. Genasense is the experimental drug that acts as a sensitizing agent. It alters the melanoma’s DNA so it’s no longer programmed to live and grow forever. In its weakened state, the melanoma is very susceptible to the killing power of the Abraxane infusion that ends the first week.

I will undergo at least two more entire treatment cycles and possibly a third; that’s another four to six months of managing side effects and missing my hair. On the positive side, the treatment is moving in the right direction, and I feel about a hundred pounds lighter!

It’s real

There’s something about losing your hair…. Now that I’m bald, it’s hard to deny anymore that I am undergoing chemotherapy for cancer. It’s an undeniable and irreversible milestone.

Yes, I know it will grow back eventually, and hopefully even curlier than before. But for now it feels like I’ve reached the point of no return.

For the most part, I’ve experienced very little in the way of side effects. In the past three weeks, there was one day when I was feverish, and a couple more when I had a rash of symptoms, including a fainting spell that may have been hypoglycemic and not related to the treatment at all. I haven’t been nauseous in the slightest, which is something to rejoice about. I’ve had headaches that may be due to meds, but are more likely coming from stress, and some low energy days filled with naps. But as far as the horrors of chemo I’d heard about beforehand, this is relatively simple.

Except for the hair.

It’s been hot, so I like going naked-headed to keep cool when I’m alone in the house. I can avoid mirrors pretty successfully, but there are unanticipated reflections all over the place: in windows when it’s dark outside, my laptop screen when I boot up, the oven door, the television screen, the glass in picture frames. These things are all over the house. My eyes travel to where I usually look, and I’m greeted by ET, an alien from another planet! It’s really weird.

Day by day

I know there are some who follow this blog who may now be concerned about me, since the frequency of my posts has fallen off. I apologize for causing you worry. I am fine… considering the circumstances.

I’ve been dealing with symptoms. Not symptoms of cancer, but rather, side effects of a toxic mix of medications and byproducts of an off-the-charts level of stress: tiredness, constipation, aches, hair loss, anxiety, depression. I’ve been open and personal in this blog, but some of these issues are even more personal than I care to talk openly about, or that others would want to share.

Cancer is ultimately a very solitary trip.

Hair loss, yes; I’m finally losing it. My doctor said it would be two to three weeks after the Abraxane infusion, and sure enough, right on schedule, the shower of falling hairs increased dramatically this past weekend. I tugged tentatively on a lock, and it came out easily. I will be bald by the end of the week. I knew it was coming, but the actuality is even more devastating than I anticipated. There is so much “self” tied up in one’s hair. I’ve seen it repeatedly in bald men. For the most part, I find it kind of attractive… in men. But they are almost invariably sensitive and self-conscious about it.

And now I have some insight about how it feels. I walk into the shower and before it’s over, huge handfuls of hair lay on the tub floor. It makes my heart sink.

I’m back on the Genasense pump. This is the experimental drug that improves my receptivity to the chemotherapy. I'm wearing a pack around my waist that holds this heavy little electronic device that measures and distributes the drug through IV tubes into my mediport. This pack is my constant companion until next Monday, when the IV bag will be empty and I will get another infusion of Abraxane.

I had to get up very early yesterday morning to go to the hospital before heading to the doctor’s office for my all-day appointment. I checked in with the surgeon about the lump I felt under my skin next to the mediport since last week. He asked the same questions all the other medical people had asked: Is it red? Sore? Hot? They are concerned about infection, and the answer to all those questions is “No.” He looked at the site, felt it, and determined that it’s scar tissue. This is to be expected, and will take six months or more to recede. But it will not interfere with the IV infusions through the mediport, which was my concern.

Later, at the cancer center, my doctor and the nurses I interact with all responded compassionately to my diminished hair volume. It must be so painful for them to witness this over and over; as of course, it’s such a painful milestone in each patient’s treatment.

I’m struggling with the terrain, but I’m happy to be here to report on my travels through this blighted territory. To some extent, it’s business as usual and time is flying by. I’m already halfway through the first treatment cycle.

In another sense, it’s as if I’m watching myself place each foot in front of the other in slow motion, one step at a time. It's dangerous and it's scary, but I'm here to make the trip.

Truly, each day is a gift.

Crossed wires

I arrived at the doctor’s office for my 9:30 AM appointment to draw blood. The phlebotomist stared at two test tubes, looking confused. “One is marked 8 AM, the other says noon.”

My doctor poked her head in. She had gotten an ad hoc request from the research committee for additional blood, but she hadn’t gotten the message until 9 AM. We could draw one sample now and another in four hours. Could I plan to come back?

Fortunately, I was planning to stay in the City after my appointment, since I’d arranged to go to a client.

When I got back to the medical office, I had another few minutes with my doctor. I told her I was feeling dizzy earlier, vaguely nauseous. “That’s not a typical side effect. Have you eaten?”

“Not really. I’m also feeling wired, jazzed.”

“Well that is typical. Before the Abraxane yesterday, we gave you a steroid, which can make you feel wired for 24-48 hours. You’re reacting to that. And you will crash.”

Oh dear… elephant alert!

After drawing blood, I walked to Grand Central, where I had just enough time to grab a slice of pizza before getting on a train. I sat down to eat it, took one bite, and felt the color drain from my face. I was suddenly faint, nauseous, sweaty, and clammy. I ditched the pizza and headed for the train, but got only as far as the nearest police stand. They sat me down and called their in-house EMT. “There’s a woman here, about forty, pale and feeling faint.”

If I weren’t afraid I might throw up on him, I’d have jumped up and hugged the young cop!

The EMT was very thorough. He insisted on feeding me oxygen. I kept pulling the mask off.

“I don’t need this. I’m feeling better already,” I said.

“You need it,” he said, as he replaced it over my mouth.

“Your blood pressure is low. I think we should call an ambulance and take you to the hospital.” He was a well-meaning angel, but I’d gotten in over my head. I certainly didn’t want to end up in yet another hospital!

“No, no. Just wait a few minutes and take it again. It will go right back up. Maybe I should go sit on the train.”

And in a few minutes, I did, indeed, regain my color and vital signs. Another EMT carried my bag and shepherded me to the next train. He smiled appreciatively when he lifted my rather heavy computer bag. “I’ve never met a woman who wasn’t stronger than she looked.”

Yes… if not for this damn cancer, I’m healthy as a horse!

I wonder, is this what she meant when she said “crash”?

Off the pump

Chemo. The word alone is frightening. “So-and-so is on chemotherapy.” This used to easily invoke images for me of faceless techs in darkened rooms administering painful injections of searing drugs; patients retching for hours on end. Maybe that’s a little dramatic. But surely, it must be a sad and somber event.

Today was my second in-office infusion day, and I’m here to report… there could be worse. Every individual has their own experience, of course, and the point on the timeline contributes to one's current reaction; it's said to be cumulative. But today again, my visit to the infusion floor was pretty relaxing.

The medical staff is kind, empathetic, warm, and helpful. My “infusion nurse” is the same every time I go in. There’s comfort in consistency, and she’s a delightful person, to boot. She grimaced in reflected pain when she saw how irritated my sensitive skin is from the bandages holding the IV tubes in place. She administered my dose of Abraxane, drew blood many times, joked and schmoozed, and sent me home. I look forward to seeing her next time, even if it does mean she'll hook me back up to the pump.

I brought along special friends: my computer and cell phone, so I was able to get some work done and feel connected to my life. I dozed in my reclining chair, ate lunch, walked around when I needed to stretch.

I still don’t know what to expect of this journey. I asked my doctor a lot of questions this morning, before getting started. It’s a fine line to walk. I want to gather enough information to feel some control, but not speculate so much I get lost in “what-if” circles.

I asked about the side effects I experienced last week: headaches, fever, migraine aura – all expected results in this study. There’s no reason to believe the dog tick I found on the back of my leg last weekend contributed any measurable ill effects, but we'll watch for unusual symptoms from that too.

“What will you look for when I go off the meds and get scanned?” I asked.

“After the first cycle, we’re happy if the tumors remain stable from the last scans. If they’ve grown in size and number, we’ll rethink the plan we’re on. If they get smaller, that’s a terrific sign, but even if they haven’t changed at all, we’re encouraged.”

“Okay… chances are good then we’ll do a second cycle,” I speculate hopefully, “but what determines if you do a third, or a fourth?”

“We’ll continue as long as we see improvement; even a plateau.”

“I thought there was a ceiling of four cycles in the trial. Do you ever do more?”

“Yes. The protocol initially called for four cycles. But when we see continuing improvement, we continue the treatment. We’re looking to change the protocol to spell this out.”

So this is what research is all about: Set goals, and when the results come rolling in, change the parameters to achieve higher and higher goals.

When I first met my oncologist five years ago, she told me she hated melanoma. It’s personal with her, a vendetta. She hopes to find a cure, and she works very hard at it. She works for one of the top medical centers in the world, in a city full of world-class medical treatment. It’s not a race to see who gets to the top of the mountain first; she collaborates with the other top centers. NYU, Sloan Kettering, Columbia-Presbyterian – they all remain connected and aware of each other’s research. Her ethics dictate that if there were a better program somewhere else, she’d send me there.

Over the years I’ve seen her look weary many times. Melanoma takes its toll even on those who don’t have it! Just as my elephant can run me over in an instant, she sees patients all day long, each never far from their own elephant. She’s constantly dodging pachyderms, and I’m sure it’s exhausting!

When I first met her, I was so impressed with her dedication. My clinical trial is not her only research. She’s exploring vaccines also. Something stirred deep inside me, a desire to help her achieve her goal. Maybe that’s part of why I’m here….

First day of chemo

I was pretty bummed this morning anticipating my first day of chemotherapy. But the physical effects so far are minimal and for now, it's mostly a matter of getting to know the details and working it into a routine. The doctor said I might have fever tonight, so I've been taking Tylenol proactively every six hours, and so far, nothing.

The complete treatment cycle takes eight weeks; six weeks of drugs followed by two weeks of rest. During the two weeks off, I’ll have another total-body PET scan. I’m not sure what they’ll be looking for to determine whether to continue or not, but based on their measurements, we’ll repeat the treatment cycle up to a total of four times.

The six weeks of drugs is actually two three-week mini-cycles. I started today with the experimental drug, Genasense. A nurse inserted a special needle through my skin and into the cap of the mediport. A long tube runs from the needle through an electronic pump, into an IV bag. The pump is a 4x5 inch brick that sits with the medicine bag in a fanny pack that I wear around my waist or as a shoulder purse. The pump constantly monitors and times and dispenses the proper amount of drug. I don’t feel it flowing or anything, but every once in a while I hear a low sound, like a camera lens going into focus.

I’ll be hooked up to this pump for seven days. Next Monday, when the IV bag empties, I’ll be back in the doctor’s office to remove it, and to get an infusion of another drug, Abraxane. That’s it for IV drugs until the fourth week, when I start back on the Genasense pump. During the entire six weeks of drugs, I’ll take one Temodar capsule per day.

Those are the treatment details. Boring as they may be, with names that are hard to remember, it’s comforting for me to have it spelled out into a plan of action. It’s a pattern and a rhythm I can follow. My visits to the doctor’s office will become routine.

There’s a special floor for the IV treatments where I sit in a private “room”. They call it a room, but it’s only three walls and a curtain. Still, it’s private enough, with a reclining chair, a phone, and a TV that I didn’t watch. I brought my computer and hacked into their network to get my email. It was actually kind of a relaxing day, apart from all the needle sticks.

Now I have to figure out how to share my life with this package of medical electronics I’m carrying around for the next week. "Get creative," the nurse said.

The tube is long enough to leave the pack outside the shower while I'm inside, and I can thread the tube under my clothes pretty successfully. But it's going to make sleeping a little tricky. I'm mainly afraid I'm going to somehow tangle in it and pull the needle out! And there's the issue of what to do if or when I start beeping, which can happen if the tube gets kinked. So far it hasn't happened, but I imagine it can be embarrassing. You know, like a cell phone going off in a quiet lecture hall.