Back in the saddle

First day back teaching

Baseball hat is to keep from blinding students with the reflection from the major bald spot (or as Michael calls it, the skin farm) on the left side

Completed 30 day Radiation cycle

Early morning rides for the radiation treatments are over. Sitting in the waiting room with patients who were there by themselves I realized how fortunate I am to have my family. Particularly when I wasn't allowed to drive. Rhonda certainly was there all the time but when she had schedule problems, Alex and Danielle were there to take over without any complaints. Susan also helped out when she was visiting.

I did get a graduation gift, the mask that was used to hold my head in place while the radiation was administered

Sunday, 1/27/08

I won't have access to a computer for the next week and won't be able to document Gary's last radiation session tomorrow. It's been a long haul. The doctors are still fine tuning the rate of withdrawal from the steroids. The original cut back was too much too soon.
Gary's classes start on Weds and he will be back to his normal schedule. No more daily hospital visits.
Six weeks went by slowly and at the same time sped. The hard part is ahead - waiting; waiting to take the scans and then waiting for the results. I am optimistic. Gary is strong and I have confidence he will persevere.

Susan

Almost done...

... with radiation and last chemo is tonight. Gary has started cutting back on steroids but the radiation was upped but it's done on Monday. Three days to sleep in and then school starts and back to a regular schedule. Hooray!

Susan

Almost done...

Johnny Padres tribute picture

!/15/2008

Gary's had his meeting with the oncologist this AM and blood work continues to be fine. Right now the plan is to take off one month and then have one week of intensive chemo followed by one month off , continuing for six months to a year. The standard procedure in the US is for one year and in Europe for six months with similar results. So that will be decided after consulting with the oncologist at MSKCC. The MRI is scheduled for Feb and an appointment right after with Dr Hodge, the miracle surgeon.

Susan

Readings

Clearly I am in the more you know the better off you are camp. Anyone going through a similar (even dissimilar) situation, my advice is to gather as much technical information you can understand. This is particularly important in regard to diagnoses and treatments. The one caveat is the statistics. What gets reported are averages. These averages include people with very similar situations to you but also people who are at the extremes. For example the prognosis for glilalblastoma multiforme IV is not promising but those averages include people with multiple tumors in very critical brain locations and people who may have had surgery and the surgery did not result in a complete removal of the tumor. So my bottom line is to remember each case is individual and the statistics apply to the entire sample of people being evaluated, not an individual.
Given my background in research methodology and statistics, it was very easy for me to put those numbers in the right perspective. What I found more troubling were books I got that recounted an individual's battle. When you see them talking about their personal struggles and how they, individually, stacked up against the statistics. Probably the worst (psychologically) day I had was after reading one of those books.
The other thing that bothered me about those “individual battle” descriptions is that the battle is very different for each person. One book I read was a biography of Lance Armstrong’s cancer battle. Certainly that was remarkable. And you can’t help but admire what he went through, just to survive. Reading about that struggle, at time I felt I wasn’t working hard enough. But his cancer is very different and his treatment is very different. The internal peace I came to was realizing that given my situation, I am fighting as hard as he or anyone dealing with toxic chemo is.

The book I found most helpful was Jerome Groopman (2005). The Anatomy of Hope.
Unlike most other books that deal with hope, this is not spiritual,religious. It deals with hope based on science, medicine but certainly drawing upon what we have within our psychological make up that allows us to do so. Thanks to Mary Avarakatos for the gift of that book.

For Glialblastomas, most of the information is available through Google search. Not too many scholarly articles are available (or I haven’t found them)

Probably the best book on brain tumors that I came across was: Peter Black (2006) Living With a Brain Tumor. This is especially informative starting with symptoms.


As far as reading for enjoyment, I am almost done with Philip Roth’s Exit Ghost. New music I’ve been enjoying The Robert Plant/Allison Kraus CD and the new Levon Helm CD. I also got a compilation CD from Danielle which introduced me to some new things including Brian Jonestown Massacre.

Given I am back teaching in two weeks, it’s time to start pulling that material together

Gary

Got back last night from my visit with Gary and family and left on a high. Doctor gave the go ahead to start driving again, Excellent news. The kids want to take him to the mall or school parking lot for some practice drives. We ate and laughed and laughed and ate. Told tales from his youth and that certainly entertained Danielle and Alex. Rhonda had heard them many times before.
The treatments are past the half way point so it's downhill from here. Only side effect continues to be fatigue. The other effects are blamed on the steroids. And once they start weaning him off , they should ease up considerably. Follow up scans will be scheduled for early Feb.
He looks great and his attitude continues to be positive. The boat progresses. A little slower then he would like and a liitle more difficult then the last boat. But that was when he was younger too and probably had a little more patience.

Susan

The New Year...

... started off with a very short ( and attractive) haircut. Also very drafty without a hat but fortunately Gary has a large selection of baseball hats to choose from.
They rejoined a gym and he was able to ride for 45 minutes on the stationary bike and should be in great shape by the time the weather warms up. Around June. His plan was to bike to work.
I'm planning on spending some time in Syracuse next week and will be able to report up close and personal.

Susan