Shrinkage

The CT scan showed that all that remains of the tumors are a couple of tiny blips. These are most likely scar tissue, but they might be cancer cells. This is the best possible outcome anyone could have hoped for: "excellent," in the words of my plain-spoken radiation oncologist. The official report won't be ready until tomorrow, but I saw the photos.

I am teary eyed as I type this. I think I am structured for delayed reaction - at the time I saw the pix I was pretty numb, in fact all day until just a few minutes ago I've been pretty numb. In fact I've been pretty numb, or else teary, for weeks now. For this reason I have been referred to a psychologist. Apparently it is quite normal for patients to be depressed at this stage of the game, the "Now what" phase. The active fight against the cancer is over; now and for the next two years I will get a scan every three months and watch to see if there's any change. They say most people need help with this transition, so I am going to go ahead and see if any of these psychologists is in my insurance plan, and then take it from there.

In short, the word for today is "shrinkage."

Monday Morning

Roughly 24 hours from now I'll be discussing results of my CT scan with my oncologist. Am trying to fend off anxiety about this. After all, I'll be getting CT scans every three months for the next two years, according to the protocol for the clinical trial in which I am participating. Am going to pull out my meditation cushion and sit myself down for half an hour, but just thought I'd check in with you beforehand. I'm feeling a little stronger each day, though still fighting a running battle with the blues. I guess that's natural, but it feels really strange. Will write again tomorrow, when there's something more concrete to report. Love to all.

Through the Cracks

My oncology nurse told me someone would call me to follow up after my last chemotherapy (April 1). It seemed odd to me that no one had scheduled a CT scan or any follow up by now, so I phoned the USS Northwestern to talk to my oncologist's physician assistant. She informed me that the protocol for the clinical trial I am in calls for a CT scan three weeks after my last chemo, which means next Tuesday, April 22. She seemed surprised that this had not been scheduled.

Just received a call from the "patient care" person who will be scheduling these appointments for me. Tune in next week for results of scan, which I guess will determine what, if anything, happens next. My understanding is that they expect to see shrinkage in the tumors, along with residual scar tissue, and that we will practice "watchful waiting" to see if there's any growth in the scar tissue, which would indicate that it is cancerous. Seems to me at some point I should get an MRI and PET scan, too, but they didn't mention anything about that, so I will ask next Tuesday. The cancer I have likes to metastasize, and two favorite sites are the brain and the bones. The MRI and PET scan, I believe, looks for cancer in those places. The protocol calls for follow up blood tests and CTs of the chest every three months for two years.

I am slowly beginning to feel better, that is, I guess, to recover from the side effects of chemotherapy. I sure hope I won't need any more of that stuff. It is not fun.

Feeling Better

Day 13 after my last chemo and I woke up feeling somewhat better. Will be heading to the acupuncturist shortly but just wanted to thank all those who checked in with me over the weekend and helped to keep my spirits up. I'm hoping in another week to be more fully back in the game. Meanwhile I just have to persevere through this period of feeling constantly jet-lagged. The good news is that I seem to get a few hours' respite in the mornings, and the jet-lagged or hungover feeling doesn't kick in til around 11 or so. In short, I'm heading into the new week in somewhat better spirits. Love to all.

Impatient Patient

Eleven days after my final chemo, and I'm growing impatient. I'm in the stage where I feel hungover or jet-lagged all the time, and it feels like I've been here for months. Which, in a way, I have. Although of course it's always just today. Just now. The battle is to just stay in the moment, and see that whatever thoughts I have about my condition are just thoughts, opinions. And to take every opportunity to get out of my head. Saint Bob S. is coming over at noon today to help me remove my storm windows, a task that needs to be accomplished by Monday, when the condo association's window washers will arrive. Afterward Kate and I are going to the movies, perhaps with Bob in tow, we'll see. As for the rest of the weekend, it will unfold as it will, and I will get better, albeit more slowly than I would like. I still haven't heard from the pulmonary rehab lady about alternatives to the program at Rehab Institute of Chicago. Next week I guess I will start to track some down myself. One good reminder is that, whatever I think of the cumulative side effects of chemotherapy and radiation, without this treatment I probably would be dead by now.

In My Dreams

I'm once again weaning myself from Lorazepam at night, and dreams the last few nights have been big and in technicolor. Tuesday I dreamed I was in the depths of despair; in the dream, my friend Allan helped to talk me out of it, and when I awoke I was restored to sanity. The psychological arena is the big battleground right now; that seems to be where the effects of chemotherapy manifest most strongly. The chemo robs me of interest in things that ordinarily fascinate.

Last night I had two work dreams. In one I was in a sort of work camp. My job was to cook and clean. I had a landing and set of stairs to wash, and a huge tub of meat to form into burgers. First I found a desk and some writing paper, and I was extremely happy to immerse myself in story telling. I had to tear myself away from the writing to do the other work, but the point was that I was writing and enjoying it, something that has felt like it would never happen again. I can't tell you how comforting that was.

The second dream last night was more about aesthetics and the sociology of aesthetics. I was with some extremely sophisticated people, involved in very sophisticated projects they described in annoying polysyllabic terms that meant nothing to anyone but themselves - jargon. To one of them I found myself saying "B*sh*t. Simple, descriptive language is the most effective. Just say what you mean straightforwardly." The rest of the dream was devoted to observing the posturing of the various other participants in the dream, and wondering what I was doing there. This dream, too, comforted me greatly, and made me feel like eventually I will be myself again.

The chemo makes me feel as though I am occupying a skin that belongs to someone else. It's one thing to know intellectually that I will eventually feel more like myself; but in the dreams, I DID feel and behave like myself. I had another dream maybe about a week ago in which I was at the end of a long, picaraesque adventure, and I could see that what seemed very serious and heavy at the time was in fact quite funny. I awoke smiling.

So here's to another day. For me: hydration this morning, acupuncture this afternoon. And for you? Smiles, I hope, and plenty of them.

Into the Tunnel

Hi, everyone. Have been enjoying this nice weather since my last chemo on Tuesday and feeling pretty good, but now feel myself heading into the tunnel. Am down to my last half-steroid, and when that wears off, side effects tend to kick in. So with my last few hours I'm heading over to Kate's back yard to enjoy the spring. I expect to feel the side effects most acutely for the next week or two, then should slowly start to return to full strength. Spent time with Mark and Betsy in their backyard yesterday afternoon, topped by a lovely salmon dinner. Thank God for you, my friends, and for spring. Love, Valjean

Last Round of Chemo

Spent 9:30-5:30 at the hospital yesterday peppering my oncologist's Physician's Assistant with questions, getting blood drawn, waiting through a 1-hour backup to get chemotherapy, sitting on an IV drip for 4+ hours, then going down to the film department to pick up a copy of my last CT scan (3/10). Brother Bob S. accompanied me throughout, unfailingly good humored and patient as a saint. I am bouyed by waves of support from him and all those who called me the night before, sent cards and good wishes, including my 93 year old friend from Northern Ireland, John McLarnon.

I went to bed last night about 10:30 and decided not to set my alarm; the upshot was I slept til almost 10:30, which I apparently needed to do. I am back on Lorazepam, being chock full of steroids once more; will wean myself off steroids by the weekend, then begin to wean from Lorazepam early next week. I am scheduled to go in for rehydration tomorrow morning, and possibly again next Tuesday -- whatever it takes to minimize the side effects that dragged me down after the last round of chemo.

Next steps: there will be a CT scan at the end of April to see what's happening with the tumors. They expect to see shrinkage and scar tissue, and there probably will be no way to determine whether the spots are scar tissue or tumor other than to watch and wait. Another CT scan in three more months may tell something or not. So this is my big opportunity to rest in the unknown, which in reality is what all of us are resting in all the time, whether or not we are aware of it or acknowledge it.

Meanwhile my travel plans are shaping up nicely: Mexico in May, Portland and Seattle in July, Ireland and Greece in August-September. I hope to start working again in May and June, since I'm running out of the receivables from last year that have supported me so far this year. Looks like there are three possible assignments, and if these pan out, they should keep me going for a while.

On the pulmonary rehab front, I'm still in negotiations with the Rehab Institute of Chicago. I wiggled my foot back in the door, trying to persuade them to let me take the classes but not the physical therapy, which I believe I can mostly do myself. It involves strength training and breathing exercises, and there's a great deal of info available on the web about this. Another Plan B option is to investigate pulmonary rehab programs at other facilities that don't bill it as physical therapy, but as something else that my insurance will cover. In short, I'm not worried about it too much right now, I'm sure something will pan out.

Meanwhile the sun is out and the weather is warming, and I'm going to take the opportunity to enjoy a walk through my neighborhood and look for more signs of spring. In my backyard tulips, hyacinths, crocuses are all struggling to make an appearance. Inside the apartment, the last of the lilies is pouring forth a lovely scent, and an amarylis is blooming nicely, in company with a Christmas cactus Kate brought over.

I'm feeling blessed and relieved right now that the last treatment has been received, and all I have to do is allow healing -- create the conditions in which it can occur -- just like watering and fertilizing flowers, and ensuring them adequate sun.