New treatment

I met with my doctor to discuss the results of my latest scan and the news is, well, mixed. There are still no hot spots on the PET scan, but the largest tumor has actually increased in size a small amount. The remaining tumors appear to have developed resistance to the chemotherapy.

My doctor says she wants to intercept this new trend early and switch my treatment. Her new plan is to pull me from chemotherapy and start immunotherapy instead. This type of treatment takes a different approach in that it doesn’t attack the melanoma directly. Instead, it is an antibody, a common blood protein that stimulates the body’s immune system to a higher level of vigilance.

A healthy immune system’s T-cells attack foreign bodies, and are normally modulated by a protein called CTLA-4 that shuts down the process when it’s no longer needed. Without CTLA-4, T-cell activity can continue unchecked and become an auto-immune disease. But in the case of cancer, CTLA-4 may suppress the immune activity prematurely, giving the cancer an opportunity to grow without T-cell intervention. Research indicates that interrupting CTLA-4 can allow the immune system to continue to attack the cancer.

In a couple of weeks I’ll get my first infusion of Ipilimumab, this new drug whose name I absolutely can’t pronounce. The treatment will be simpler than what I’ve been through: one infusion every three weeks for a twelve-week cycle. Side effects can include fatigue, itchiness, rash, and diarrhea; they may be minimal, and I might even get my hair back.

How do I feel about all of this? I’m not happy to find out how resilient this damn melanoma is. It’s pretty distressing to be reminded there is still cancer in my body and it can thumb its nose at my attempts to get rid of it. Additionally, starting a new treatment fills me with the dread of the unknown. It may be simpler, the side effects may be minimal… but I don’t know that yet. I’m sure I’ll feel better about the process when it’s underway.

On the other hand, my doctor says that patients who undergo this new treatment after taking Temodar tend to do really well. Temodar may somehow set the stage for very efficient T-cell activity.

Time will tell….

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!

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.

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....

More of the same

I haven’t been posting to the blog. It feels a bit like complaining to get up here and say: I had another lousy day. Am I losing sight of the prize? I am, after all, getting better from this treatment, even if I have to put up with fevers, low energy, sensitive skin, joint aches, headaches, and sometimes worse? And not to forget the round-the-clock schedule of drugs, both chemo poisons, and over-the-counter remedies that address my side effects.

Yes, my life is consumed by the details of complying with the treatment plan and dealing with its fallout. It’s not pleasant, but it’s what I have to do. I feel like an idiot savant, constantly chanting to myself: two Tylenol and two Metamucil capsules at 10:00 am, two Advil at 4:00 pm, two Tylenol and two Metamucil capsules at 10:00 pm, Zofran at 10:30 pm, Temodar at 11:30 pm.

I will say this though: whoever dreamed up putting Metamucil into capsules is a genius! The powder form of this “Psyllium Dietary Fiber Supplement” is one foul tasting treatment that I always shunned. Even the flavored varieties can’t mask the slippery, grainy, unpleasant texture. But the capsules are very effective, address a variety of conditions, and are easy to take.

I keep track of all my side effects and all the drugs I take in a spreadsheet that my medical team reviews. They, of course, can appreciate the minutiae of what I go through since it helps them put my and other people’s reactions into perspective.

But friends? Do they want to hear those details? I’m skeptical that’s what friends want to hear. In fact, I asked that very question last night when I visited with some friends.

They are creative types I’ve known as many as twenty-five years. It’s a free-flowing group of “attendees” who meet at the home of one woman nearly every two weeks. The hostess doesn’t drive at night, but she loves the company and has a comfortable home that accommodates it. The mostly women who show up usually bring their latest craft project to work on, and to share for critical fine-tuning. When they bring their husbands, those men typically fall asleep on the couch in another room, or visit with my friend’s husband. Topics around the table branch out to life issues and concerns. This “Group” has grown to be a family.

My dear friend has crafted a life around a medical condition that’s thrown limitations at her for over thirty-five years. She doesn’t complain about her symptoms. She hosts a potluck party!

“How are you?” they ask me when I enter the room. I show them my mediport and my portable IV. They are concerned that I was feverish earlier in the day.

“Are you really interested in this?” I ask skeptically.

“Yes,” they assure me. It puts a visual picture together with the words they’ve been reading here in the blog. It’s a reminder that I, their friend, continue to struggle with a problem that takes a different form every day. It gives them a sense of what to expect in the outside world with other people who might be more reticent to talk about these issues. It adds depth and perspective to the growing problem of cancer and chronic conditions in an aging population.

I’ve always believed that honesty is important. There are topics I can’t talk about publicly – religion and politics jump to mind. But this is one arena where I want to make a contribution.

Powerless

I’m sitting in the dark… literally.

Last night, a huge thunderstorm rolled through the area. Loud, close thunder cracks, long streaks of lightning. The hard rain that followed was the least of it. Violent conditions played out over a short span of about twenty minutes, leaving car alarms blaring, dogs barking, and power lines down somewhere nearby. There’s no electricity at all in the complex where I live – not unusual in this area. I’ve experienced twenty to thirty power outages in the ten years I’ve lived here.

I have no power. Electricity, I’m talking about, but this is a metaphor for my general state of being. I feel powerless.

I am also resourceful. So, while there’s no electricity flowing through these forty homes, I’m sitting in my car, plugged into a cigarette lighter which is charging my laptop. I have no access to the Internet from here, but I can write and I can get some work done.

Which underscores the fact that my life is now, more than ever, full of roadblocks and obstacles. It's not comfortable in the least.

“Well, that’s obvious,” you might think. “You have cancer.”

But that’s not the whole picture. Cancer is simply my number-one priority that can interrupt anytime with a demand to drop whatever else I’m doing or thinking at the moment and attend to it.

And that’s not even the whole picture either... because my life had its share of black holes and disorganized messes to begin with. I’m sure that’s not unusual. Some people procrastinate more than others, but I’m certain everyone has things they just don’t deal with effectively. There’s a whole burgeoning industry of personal coaches, organizers, counselors, mentors, and motivational speakers to help people get control, get organized, and get on with life. I suppose you might even throw therapy into that mix.

This help sector has grown hugely in recent years. Bookstore self-help sections have bloomed proportionally along with it. But even with all the books and recordings, when people feel limited in what they can accomplish on their own, they look outside for someone to challenge and push them to achieve more of their goals. And maybe they seek assistance in hopes of shrinking the actual tasks themselves.

I’ve gone the route of mentors and coaches. They can be very valuable resources. But, in my experience, the value doesn’t result in instantly smaller tasks. The major simplification is in the eyes of the outsider. They can see our problems more clearly than we who have created those problems, we who remain mired in the thick of things.

I've had my own mentors and I've filled the role for others. I know I’m really good at identifying other people’s weaknesses and pinpointing where they need work, while my own pile of unfinished business continues to hold strong. No matter what the outsider sees or points out, the person with the problem is the one who must recognize its existence, acknowledge their part in creating it, and accept that there are options for getting out from under it. A perceptive outsider may see clearly and may even share those insights, but that doesn’t guarantee anything on the road to getting the problem fixed.

The outsider’s skills and strengths and insights might provide a mirror for where we’ve gone off track, pump us with inspiration to take on things we previously thought impossible. But in the end, there’s always work, even hard work, that only one person can accomplish. With an outsider to bolster our motivation, we might more readily take on the work, but we still need to roll up sleeves and dig in. We must wade through the paperwork, set priorities, make decisions, process and organize, and get the messes under control.

Where am I going with this? Why am I rambling? What does this have to do with cancer? And why haven’t I posted new blog entries lately?

Before my diagnosis, I had set some goals. I wanted to make changes to my circumstances to bring more fun into my life. “More fun” is an end product. The tasks I undertook to get there required work and dedication. I studied and evaluated many disciplines, attended workshops and seminars, set up legal structures to handle my new ventures, and invested in real estate. I’ve met some great people along the way, but so far the “fun” part has remained largely elusive. In fact, rather than simplify, my efforts served to complicate my life further, add more things needing attention, make the pile of unfinished business grow.

That’s where I was when I got the most distressing news of all from my doctor on June 11th. And that’s where I am today: inundated with paperwork, bills, to-do lists, half-successful undertakings, organization challenges….

Everywhere I turn I experience anxiety.

People call and ask how I am and I feel compelled to comfort them! I’m delighted to hear from friends, really I am, but I’m also agitated. They ask how I am and what they're asking about is the cancer. I can make a convincing case that my treatment is on track, my health is good, and my prognosis is positive. But that takes energy – energy I need to attack my mountain of tasks. And it leaves out the really ugly part of what it takes to get through day-to-day, simply to survive. Truly, that’s the part that’s demanding all my resources and has got me down right now.

I’m not in a pretty place. I haven’t been blogging most recently because I feel I need all my energy to attack my various problems. I haven’t wanted to stand up here and say “I feel lousy about my situation and I need all my resources to wade through it.” People’s response is invariably, “What can I do to help?” And as far as I can see, there is nothing. I have to do it myself. I have to experience it myself. I have to make decisions and get the work out of the way.

I had a house guest for the past couple of days. She came a long way to visit, to spend time with me and take my mind off cancer. This actually ended up being very painful for both of us. I felt her presence as an intrusion, a distraction from the mountain of work, a demand to comfort and reassure her, an interruption of the rituals that comfort me, a loss of my restorative alone-moments. I was very rude to her. She kept asking what she could do to help and I finally yelled at her, “For starters, you can stop asking me that!”

She was kind enough to look past my snappishness and see what was actually happening. It made her feel helpless, which only made me feel worse. My friend had come to be helpful and I made her feel helpless!

Those incidents are happening more frequently. My sister called the other day, and when her cell phone didn’t connect right away, I growled “WHO IS IT?” into the phone, thinking it was a telemarketer deserving of my rudeness. My ex offered to write a prescription for anxiety medication and I scoffed at him, "The last thing I want to do is sugar-coat my anxiety."

It’s night. I finally have electricity back in my house. Power restored to the physical plant, but control still lacking in my general sphere of existence. There is still so much to do.

In the back of my mind is the treatment schedule. I continue to take nightly Temodar pills until this coming Sunday. My appointment for the next PET scan is set for August 13th and the follow-up consultation with my doctor two days later. So I won't know the effectiveness of this cycle of chemotherapy and what the next steps will be until August 15th.

I don’t expect the anxiety to abate anytime soon.

What day is it anyway?

I just had the most disorienting experience!

I was feverish much of the day, starting around 11 AM. Fever spikes can occur any time during the seven days of Genasense infusion, and mine went from 101.3, when I first noticed it, to 102.9 a half hour later. I graduated from Tylenol to Advil to get it under control, and it hovered around 100° for the rest of the day.

At 5 PM, wiped out from fever in combination with the heat and humidity of the day, I took some more Advil and lay down in my clothes for a nap. Next thing I knew it was 7 o’clock.

I had slept fourteen hours, and I had missed my nightly Temodar chemotherapy pill!

I put in an off-hours call to my doctor and raced around getting ready for my 9 AM office appointment to draw blood. My doctor, and the nurse who monitors my participation in the program, are both out of town at a conference, so I called and spoke with a covering doctor who isn’t as familiar with the protocol for this trial. He looked into it and determined I should wait until tonight for the next dose. Three days into the program and already I’d flaked out!

I babbled on about sleeping fourteen hours and told him I’d be in the office later today for labs.

“You mean tomorrow,” he said.

“No, today, Thursday,” I said.

“Today’s Wednesday.”

I stared at my “Drug Diary”, still thinking it was morning, and simply could not figure out how I’d stuffed all those hours into the wrong day. I’d written notes about what side effects I had and what drugs I took, but had I made Wednesday up?

Finally I looked out the window and noticed the sun was going down, not up.

Phew... I didn’t miss my dose after all.

No stranger to stress

I woke up with a headache yesterday and again this morning. The nurse assigned to oversee my participation in the clinical trial shrugs it off as a side effect of the anti-nausea drug I take before my Temodar chemo pill. She says it’s important to continue taking Tylenol every six hours, and that does help. But I don’t wake myself to take it, so by morning the headache has crept in.

That’s one theory.

In fact, it’s not unusual at all for me to wake up with a headache. Life is stressful, after all. Particularly so when billed activity is light, which it was for some time before this new problem landed in my lap. Now that I have an elephant in the room, following me around morning to night, it’s even more difficult to concentrate on client problems. Billings suffer, I worry, and I wake up with headaches.

Every day's an adventure.

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.