Getting diagnosed with cancer is like being on death row. I keep appealing and hoping to extend my sentence. My friends and supporters remind me that everyone is on death row and will die eventually. This does not console me at all. I’m on the inside looking out, they are on the outside looking in. So each, “judgment day,” each turn of events, is a major blow to my psyche and to my physical being.

That’s why I live a life of fear and anxiety where I imagine “others” live a relatively relaxed life where they don’t think about dying (as much).

This journal began in 1995 to minimize rumors and to keep my friends and family informed. Then it morphed into a way for me to explore the impact of my illness on my life. Then it morphed again into a “creative writing” outlet and a cathartic way for me to communicate. And now it’s been a way for me to explore all this plus multi-media.

I’ve set a standard for myself where writing has become a performance rather than a genuine process. The anger I feel about change the in my “clinical state” gets buried in the merriment of the prose. I’m so tired of hearing, “being thankful is the key to happiness”. Go be thankful somewhere else, thank you.

Sometimes I want to just SCREAM, “Is this ever going to end?!?”. Of course the answer is, yes - when I am dead.

Cleveland

My follow-up MRI in March showed no change from January if you have never seen an MRI report, here is one in .pdf format . This is excellent news, but I know better. As I wrote before, I’ve been getting mini-seizures in my left leg since January that has restricted my activity through February. So, I may be radiographically stable but I am not clinically stable.

When we talked to Dr. Stevens, the general oncologist, he emphasized there was no change in the MRI and that my changes might be due to my previous brain damage. We asked him if a PET scan would help distinguish if the tumor was growing again and he said, “No”, because he thought that PET was less sensitive than MRI. When he left the room, Abi and I both got a little weepy. Abi said, “It’s just not fair. It’s like vultures slowly picking at your head.”.

Feeling drained and unable to tread water, we walked down a long hallway to talk to Dr. Peereboom office, the chemotherapy Dr. He offered Abi a tissue as she described my clinical symptoms and how they cycled with my chemotherapy treatments, except for the last two treatments. We asked him about alterative ways of taking the chemo, such as one week on, one week off, etc., and he listened. He said that seizures maybe the first symptom of re-growth (which we knew already from past experience) and suggested we could try a new regiment of six weeks of chemotherapy with two weeks off, two times, and see how that goes.

When I left his office, I did not relish the thought of doing six weeks straight of chemotherapy, but I felt so much better that he actually listened to our concerns and that we were going to do something different, rather than doing the same thing, expecting different results. So that’s what I’m doing now, taking Temordar, seven days week at ½ strength. I actually had a spring in my step as I left.

Birthday

At the end of February it WAS Zachary’s birthday. He’s 14, growing like a weed, and eats anything I do not eat at dinner. Here are some pictures of his birthday (link). Hana is also growing very tall; her birthday is in May.

Snakeskin

As my physical abilities get more restricted, I’m being called to find other ways to express myself. This has been a process throughout my illness. My identity as one who “knows things,” like computers and networking, is something that I value very much and I hold onto.  But, just like the snake, at some point it becomes inevitable that I need to shed that part of myself and show new colors - to contribute to the world in a different way. But, I find this very hard because, while mentoring is something that I have always enjoyed, I usually choose to mentor in a subject that is close my original expertise. 

So, I’m at a loss as how to contribute to the world in a whole new way, or if I even need to.

Some have suggested that just taking time with others and showing kindness is a gift within itself beyond measure. And that moves from doing to being, leaving both satisfied.

Found on the web

Two people in the last month have found my journal on the web and have written me to express their appreciation for my openness. They have family members recently had surgery and are beginning to go through the exact same process. It is emails like these that remind me why I write. One in particular had me crying as remembered when I first started this process. In responding to one of these emails Abi and I added a section to the website answering some common questions and giving some general advice that we have collected over the years. 

So I’m starting to swim, staying in one place is tiring and boring. See you, communicate with you next time.

With love, thoughts, and blessings,