Queasy

The last few days I’ve had an on-again-off-again ache in my stomach. It feels acidic, ulcer-like. Sometimes it swells and blooms into a wave of nausea. Two days ago it grew very strong and I vomited most of the meal I’d just eaten. Last night it happened again several hours after dinner. I didn’t have much in my stomach at that point, so I stood over the toilet drooling and dry-heaving until it passed. In both instances, it passed pretty quickly.

Big question: Is it the drugs or is it the stress? (Or maybe the cabbage salad I’d eaten both days?)

Footnote: I met with my doctor earlier and told her about the vomiting. She had my latest lab report in front of her and was about to ask me if I’ve been nauseous. The labs showed an elevated level of pancreatic enzymes, “a touch of pancreatitis” which can cause nausea, especially from fatty foods.

In addition to the cabbage salad, I had spare ribs both days. I cook them on the outdoor grill with nothing on them, so a lot of the fat drips off, but they are still a fatty cut of meat.

Mystery solved.

I’m at the Cancer Center for the last of my four initial immunotherapy treatments. In three weeks I’ll have a scan, and see my doctor a couple of days later. Then I’ll be free of medical appointments for three whole months!

In late October I’ll have another, more meaningful scan, and a maintenance infusion of Ipilimumab, and that will be the schedule from then on: treatment and scan every three months as long as my doctor and I want to keep it going.

In truth, I feel very good. I like the idea that my own immune system is doing the heavy lifting; I’m not being force-fed poisons that kill everything in sight and suppress my immune system in the process. Chemotherapy is hard to endure; this treatment is much easier on the system and much easier to live with.

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.”

Fewer and smaller

I met with my oncologist today to discuss the results of Friday’s PET scan. As in the previous two scans, there are no metabolic hot spots at all, no signs of active malignancy. The tumors are continuing to shrink and disappear. The largest one is now 8 x 4 mm, down in size from 8 x 9 mm on the prior scan. Things are still moving in a positive direction; all indications are that the cancer is on its way out.

This report comes as a relief. I was nervous about dropping Genasense out of the mix of drugs. My doctor said she wasn’t worried about that, but admitted her concern about the long delay between cycles two and three. We seem to have weathered that storm.

But what does this mean in terms of how much longer I need to be in treatment? Today is the first day of my fourth cycle. Is this the final cycle?

“No,” my doctor said when I asked her this. “I want to see a clean scan first, and then we’ll go one more cycle after that to make sure we’ve gotten it all.”

I appreciate her intelligent, cautious approach to my health, even though I’m not thrilled to be taking these toxic drugs “ad infinitum”, as I heard her say to someone in the hall outside the exam room.

“Ad infinitum?”

“You weren’t supposed to hear that,” she responded.

She wasn’t condemning me to a lifetime of chemotherapy; just commenting that we’ll go as long as we have to in order to get rid of it all. That’s something I can live with!

Plan B and a half

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.

How can this be?

When I was mid-attack yesterday, throwing up, flushed with heat, throat tightening, and nearly passing out, I asked my doctor, “How come this is happening? Why now?”

She said that allergies can develop over time because the body builds up antibodies that eventually reach a critical mass. Also, there may be reactions along the way that don’t register as such. For example, early in my first treatment cycle I had an episode where I nearly passed out in Grand Central. They’re rethinking now that it might have been an unregistered reaction.

I didn’t end up in the hospital ER yesterday. Forewarned is forearmed. Everyone was prepared to notice symptoms. The results of the previous week’s CT scan ruled out an embolism; if it happened again, it would be a pattern implicating allergy. My doctor wrote orders in advance for steroid and Benadryl; the IV bags would be there if needed.

I am so out of sorts today. It’s been very difficult to keep my mind clear and focused. I’ve been trying to attack my mountain of paperwork, but I keep getting distracted.

I called the oil company this morning to report that my heat didn’t go on. I went downstairs and pushed the furnace’s red button to reignite the pilot light, but nothing happened. They scheduled an appointment for later in the day, commenting that it might take a while since there were a lot of service calls for heat problems.

When the heat guy finally showed up, he walked to the thermostat first, turned up the temperature, and without missing a beat, the heat went on! All day I thought the furnace wasn't going on because the pilot light wouldn't start, but it was because the thermostat was set too low. Oy vey!

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.

Moving right along

I just returned from a visit with my oncologist to discuss the results of my most recent PET scan. As expected, the news continues to be excellent; my health with regard to this insidious cancer continues to improve. As on the previous scan, there are no metabolic hot spots, no activity in my lungs to indicate that cancer is growing or spreading. The largest of the remaining tumors has shrunk further, from 1.2 mm to 0.9 mm. Many of the smaller ones are gone altogether. The drugs are doing their dirty work and my body is flushing the detritus!

The radiologist’s report noted a pattern of “ground glass” in my lungs. This is nothing to worry about, according to my doctor. A mild lung inflammation that accounts for the intermittent fevers, limited stamina, and flagging energy I’ve had over the past couple of weeks. It could be from the drugs, or possibly something inhaled. She assured me there’s no possibility it’s cancer, but of course, I had to ask. She gave me a prescription to address it.

I’m on schedule to start a third treatment cycle next week. After that, my doctor’s cautious approach dictates that we add on a fourth round “for good measure.” This is not fun, but it’s the safe way to go, so I’m all for it.

And the beat goes on…

I’m returning from the Cancer Center, where I had the Genasense pump removed, received steroid and Abraxane infusions, met with my oncologist and program-supervisor nurse; in short, spent most of a day in the City at the place I’ve come to know as home-away-from-home.

Things are different. A heavy weight has been removed since my last PET scan. The threat of imminent danger is gone. I no longer wake with my heart pounding in fear of what the day will bring. On the other hand, there is still a sense of having to complete a long and rigorous journey.

This is a very different and much preferable trip. Difficult, yes, but it’s not like, for example, being trapped in a collapsed mine or on an icy mountain, hoping every minute that rescuers will arrive, but knowing there’s a chance time will run out before they break through. Or the panic that airline passengers felt moments before they slammed into the World Trade Center, knowing their lives were about to come to a violent end.

I’m not trying to minimize the horror of those other situations, but terror is terror. I experienced many moments of panic this summer knowing that no matter how valiant my fight, circumstances could drop from the sky and blow me away once again.

I may be out of imminent danger, but the struggle goes on.

Chemotherapy, round two

The infusion nurse looked uncomfortable as she prepared to insert a needle into my mediport yesterday. It’s a different motion than slipping a needle into a vein to draw blood or start an IV line. She grabs it kind-of like a knife handle, and jabs firmly through the skin and all the way through the rubber cover of the mediport.

“It’s okay,” I assure her, “it doesn’t really hurt.”

But in spite of training, and years of practice, it doesn’t feel natural to stab someone in the chest that way, and they cringe a little every time they do it.

It doesn’t really hurt, but it does take its toll. It leaves me feeling deeply sad. I’m once again hooked up to my portable IV, back to carrying around a weeklong supply of Genasense. I’m back on chemo.

Don’t get me wrong, I’m extremely grateful that the treatment is working in my favor and I can look forward to a time when I’ll have hair and no cancer. But the process is very unsettling, disturbing, intrusive. It represents a profound loss of innocence. I’m reminded again and again that there are things I’ll never be able to take for granted again.

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.

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.

There’s no diet like fear

I’m a foodie. I love sharing an excellent meal and a good bottle of wine with friends. Set us in a fine restaurant, where none of us is burdened by hours of preparation and cleanup, and that’s my idea of heaven. I’ve always enjoyed reading restaurant reviews and collecting recipes, and for much of my life I also enjoyed cooking, although that’s lost its luster now that I mostly eat alone.

The dark side of my relationship with food is how I use it to stifle anxiety. I tend to greet stress with a pint of ice cream. Combine that with many hours each day sitting in front of a computer and you can appreciate that my waistline suffers.

I started a new exercise regimen about two months ago. Exercise is nothing new to me. I’ve always found ways to keep fit, and enjoyed doing so. Unfortunately though, that hasn’t stopped the slow progression of higher numbers on the bathroom scale. This new program involves short intervals of high exertion alternating with slow cooldown periods to regain a resting heart rate, the premise being that this ultimately burns more body fat than a single long, continuous session of moderate effort.

It may be too early to tell for sure, but this new exercise plan seemed to have a positive effect: about a pound a week for six or seven weeks.

Then came the diagnosis.

I’ve continued to exercise these past two weeks, but of significance is what’s happened to my appetite. I keep forgetting to eat! My insides are in such turmoil and sometimes I choke on thoughts of food.

My first course of chemotherapy starts tomorrow and I don’t know what’s going to happen once I'm taking strong drugs into my system. I've heard chemo can have cumulative effects, so I may not know my reaction for a while. My doctor has said this treatment shouldn't make me sick, so I'm trying not to speculate.

For now I'll just welcome the opportunity I've already been given to kick my metabolism into a higher gear.

Mediport

I had my mediport placed yesterday. As explained to me, a mediport is a small titanium reservoir embedded under the skin between my shoulder and neck, near the collarbone. Its rubber covering allows access via a special needle, and at the other end, a tube attached to the reservoir empties into a nearby vein. They choose a larger vein to minimize irritation from the chemotherapy drugs that are going to flow through it. The doctor explained that a lot of the sickness chemo patients experience comes from running the drugs through small veins.

I was sedated for the procedure. Good thing too, as this was essentially minor surgery. I didn’t feel any pain while it was going on, and was able to walk from the hospital to the train station shortly afterward. But the experience and sedation knocked me out. I fell asleep soon after I got home and slept for twelve hours.

The doctor who performed this surgery is the same one who did my pulmonary biopsy. “Do you have any questions for me?” he asked.

In fact, I did have a question that others who know me may have wondered also. “Are there different types of cells for different cancers? They found cancer cells in my lungs. Why is my diagnosis melanoma and not lung cancer?”

He explained that pathologists do in fact have ways of distinguishing among various forms of cancers. They use a number of different stains to clarify and identify characteristics. There was a pathologist with a microscope in the room with us during the biopsy, so they were able to look at my aspirated cells right away. He remembers that they appeared dark, indicating the presence of melanin, the pigment-producing skin element where melanoma grows.

This begs the question: Is it better or worse to have metastasized melanoma or lung cancer? In fact, every case is different, but that may be more of a philosophical issue than medical.