See my nice mantle radiation burns.

11/1/96
Another month is beginning and I am still de-HDing myself! This is the month I get my abdomen and spleen zapped, which means I must make sure that I keep my WBC visualizations going strong! I have been using a new one where a Blort jumps on a trampolene and everytime he lands, there is an explosion of baby white blood cells. I am trying to economize my energy, and this one allows for more WBCs per/bounce!

11/3/96
I haven't had radiation for twelve days, and that is good and bad news. The good news is that my skin is healing nicely, like a lizard about to shed, I can once again swallow fairly normally, and I have tons of energy. The bad news is that Dr. Knox may want to give me two extra chest treatments, because she does not like to have anyone go more than a week without treatments. She is going to think about it. She also told me that if we had not stopped treatments when we did that my skin would have fallen off. Yeeeikes, do I ever feel lucky! Besides all that, I completed my abdomen set up and now sport three new tattoos. So now the plan is to get all my chest treatments behind me this week, and then I get to have my abdomen and spleen zapped. I wish I could think of a way to move my intestines aside during the zapping, but unfortunately, I do not even think that even Houdini could do that.

I had a long day on Friday, because I had an extra added problem to deal with besides seeing my doctors about getting zapped, and having a long set up to lie still through. It was Halloween the night before, and I could not help but dive into the candy bowl for a little feast. I bit down on a tiny Snickers bar and felt a terrible pain in the back of my mouth. I thought it was an abscessed tooth, but it turned out to be abscessed gums. So Friday morning I saw a dentist, two doctors, completed an 1 1/2 hour set up and then I saw a Periodontist who numbed my face and drained my gums. Gee, I hope you weren't eating just then. I am now on antibiotics and my gums feel healed.

I feel ready to be zapped tomorrow! My skin may feel like a Lizard, but the burn pain is gone. What is left is the itching! From all that I have heard, I should expect to start peeling soon, and then under my reptilian epidermal layer will be skin as soft as a baby's butt. I have not found any way to get the itching to completely go away, mostly I have just become used to it. I have to tear off all the tags on my shirts, because they feel like large scratchy irritants against my neck. Everything can be adapted to, and I believe that being adaptive is a necessary part of survival. I learned that from the monkeys I worked with when I interned in college at the UC Davis Primate Center. But then that is another story. Can you tell I like monkeys and lizards? Well I do! If you have time, why don't you learn about your favorite animal? No reason? None! Good, then be sure to check out the beautiful Frilled Lizard, and then please come back!

11/8/96
I had my last chest radiation treatment today! Dr. Knox decided to go ahead and give me two extra chest zappings, because I had taken such a long break to heal my skin. It was a trade off, destroy my skin or take a break and interrupt the potency of the treatments. Nobody really knows just how long too long is between radiation treatments anyway, it is not a science yet. Whatever might have been the best decision, I do know that my skin healed like new and it withstood these last five treatments like it was a force field. I must have done something right.

I start abdomen treatments on Monday, and I am relieved that stomach skin does not burn like chest and neck skin. I do get to expect some lovely side effects, such as worse nausea and possible diarrhea, just in time for Thanksgiving. It is the way it has to be, so I will get through it. It is certainly better than chemo, and I feel a million times better than I did this time last year. That light at the end of the tunnel is now visible!

These past two days I have been losing my stamina. Last night I was too tired to eat, and everyday at 3pm, it feels like midnight. Also my counts were way down this week, my WBCs were 2,800, my RBCs (hemoglobin) were 10.8, and my platelets were 123. Dr. Knox said that it is probably a delayed reaction to the radiation. So the downward spiral has begun. I am being as positive as I can, but I know that I am going to be on the edge of feeling good for the next two to three months. Maybe I should think of it as a strange vacation, and just relax!

So my next step is to believe that my chest is free of HD, and that it will never return. I do worry about my chest, because that was the only place left in my body with any sort of mass. My chest is on it's own now, no more medical help, no more help from anything other than me and my mind. So now I must envision my chest and it's entire lymph area as completely free of disease. Better yet, I will think of it as healthy, maybe even normal.

11/12/96
Yesterday I had my first abdomen radiation treatment, and I vomited for five hours afterwards. I think I was semi-nauseous going into it, but moments after my two doctors came in to examine me, I vomited. They just looked at me while my eyes bugged out in an attractive puking sort of way. Then they gave me a Compazine suppository, but I still vomited. So their next plan was a stinging shot of Phenergan, which knocked me out for twenty minutes before I continued to vomit. By now I was running out of things to vomit, but I managed to conjure up some colorful substances. Meanwhile, people were coming and going in the radiation unit, hours were passing by and I continued to vomit. Finally they got out the big guns, and they slipped an IV into my veins and pumped my favorite anti-puking drug, Zophran, into my body. Finally the fog lifted and I felt almost normal. I was the last patient to leave the unit, it was very quiet!

Now I will be taking Zophran around the clock until I am through with the rest of my treatments. Zophran was my drug of choice during chemo, so it is once again my anti-puking buddy. I am glad to say that after my treatment today, I ate a vegetarian burrito "grande." It tasted so good after not eating very much yesterday, and oh yeah, all that upchucking too. Not only was it good news to be able to eat, but at the hospital I got good results on my blood counts. My WBC's were 3,100, which was slightly up, my RBC's remained the same at 10.8, and my platelets were up a bit at 137. That means my downward spiral is now an upward one. I think my white count went up because of a new visualization that I did, where I imagined a Blort jumping on a pillow of bone marrow. I did it in the middle of the night, for I often wake up around 3am and I am very relaxed. I rather enjoyed the peacefulness of watching another being having fun sparking new cell life into my marrow. It was effervescent!

11/13/96
I wrote a poem today.

11/17/96
On Friday, I did my first interview for a documentary that a Stanford graduate student, Ian, is doing about cancer patients. He picked three of us from my support group, and he is going to follow us along through June. I see it as sort of a family album, and I plan to put a copy in the chest I started for Brittany, where I am putting all kinds of remembrances of me for her to have just in case my demise should come early or unexpectedly. I planned the chest before I got diagnosed, so maybe I had some sort of premonition, or maybe the threat of cancer due to my family history of breast cancer has always been in the back of my mind.

Once the filming was done, I went to the hospital for my usual abdominal zapping, and then I went to another part of the hospital to see a newly diagnosed friend who was in the middle of a Lymphangiogram. I got to see how my feet must have looked when I had mine done, and I even got to see what a lymph vessel looks like. It resembles a stretchy fishing wire, and it is amazing that anyone could find one, let alone fit a needle into it. The entire procedure is bizarre!

Yesterday, Saturday, I took an all day children's book writing class. It is the precursor to the eight week course I really want to take starting in February. It has been a long time since I was in a group of people where I was the only cancer patient. I think I fit right in!

Today, Sunday, Ian is shooting another part of his documentary, with all three of us participants talking amongst each other. Each of us has a different type of cancer, a brain tumor, breast cancer and my Hodgkins. We are all very different people at different stages of our cancer, and I am the only one still going through treatment. But then just the fact that cancer has invaded all three of our bodies, makes us very much the same.

11/23/96
I am in a constant state of nausea, and my head is always slightly dizzy too. I am beginning to wonder if I will be able to drive myself to the rest of my treatments. I'm really not good for anything right now, my world has become very small. I have a few good minutes and then a wave of the big "N" takes over again. I have a little bit of a fear that I will get stuck somewhere and I will not be able to stop throwing up. At least I have figured out a way to try to control the nausea, at times, just by concentrating on my breathing and letting myself relax. I will have plenty of chances to test it out over the next few weeks.

I am now exactly 1/2 the way through radiation! That is a good thing, just like it is good that I am able to eat well through all this, in fact, eating small amounts all day makes me feel better. It's reminds me of chemo. I need a nap.

11/25/96
I've been in a haze. I've been dizzy. I would be happy to put my head down all day long. I spend my time on the edge of nausea, because it likes to come in waves, unnanounced. I do a lot of breathing, I drink a lot of tea, and I am eating freshly cooked foods like bok choy, mushroom and tofu soup. I am starting to feel rather lean again, and it makes me want to work out. I could start this morning, but then movements of any kind make me nauseous. I must be patient and remember that this will end soon and then I can start thinking about getting into shape. I have the rest of my life!

Right now is hard for Brittany, but she seems to have adapted to my periodic bad times. I have been telling her all along that it will end one day, and now I can tell her it will end very soon. It is hard to imagine what life will be like without some form of treatment, and it will be especially strange to have energy again. I can't wait to go skating again! It is one of my favorite things to do, just me and the floor and the wind, going any which way I want.