The "hair cut"

OK, I've decided it's too hard to get caught up all at once so I'm going to start doing this the right way - I'm going to try and start with today and post current events. Then as time permits I will catch up with the past. I find writing to be very therapeutic. Even if most of you will find it boring I don't care. After all, it is my Blog!

Speaking of Blogs, Marlys and I went to the movies last night and watched Julia and Julie. I recommend it to everyone - 5-star! This is how movies should be made.

Now with the hair cut. Much as I have always prized my full head of hair the radiation finally started taking it's toll. On the Monday of my second week I was in the shower and washing my hair and I wound up with a "big" handful of "unattached" hair. I wasn't too shocked; I knew there was a 99% chance it would happen. The radiologist said that the radiation kills the hair follicles around the exit point and the damage would show up between weeks 2-4. Because the radiation is focused to the same spots during the entire 6-week procedure, once the follicles were murdered the first time there would be no further damage. Well, I’ve just finished week 4 and I certainly hope the slaughter has ended. It seemed that every day I would find more victims. Not only was it making me scary looking (think Hannibal Lecter) but it was painful (like having a bad sunburn on your head – all the time). Wearing a hat (I’m not now nor have I ever been a “hat person”) had become mandatory. Not just to keep small children from crying, but also because the Doctors don’t want me to get any direct sun exposure.

So anyway, I’ve been wearing hats. Not only are they uncomfortable but every time I adjust them (remember I’m not a hat guy) or remove them they seem to pull more hairs out of my head. Ouch!

So this morning I told Marlys I wanted her to give me a Buzz cut. I haven’t had a Buzz cut since the Saturday after I got out of 6th grade. She was excited (do you think?) to do it. I was nervous, but I knew I had to do something. I have to say, she did an excellent job. I am very happy with the results. I wish I still had all my hair, but this is so much more comfortable. And now I know how Billy and Mike and Glen and Mac feel. The big difference is: my hair is going to grow back!

The Plan: Getting ready

So on August 3 I was to begin my first radiation/chemo treatment. But before that we had a number of missions to accomplish. First we had to order a number of drugs. The chemo drug they selected for me is called Temador. Because of side effects I also needed to take an anti-nausea medication. Because of the increased risk of pneumonia they prescribe an antibiotic. Then to try and keep the seizures under control I need to take and anti-seizure medication (I'll need to take it forever - however long that is). Then there is the constipation side effect that requires several pills to help overcome. And last but probably my most hated and needed is the anti-anxiety pills.

If there is any silver lining to be found it is that my insurance seems golden. Once my deductible is spent I have 100% coverage with no limit. I'm sure "they" will be working overtime trying to find a loophole, but we'll face that if it happens. The drugs are really expensive and we don't have the best prescription plan but it is still very manageable. All in all, I feel comfortable that this will not bankrupt my life's efforts.

I didn't like walking into the bathroom and seeing all the prescription bottles sitting on the counter. It sent a signal that I was a sick person. And I didn't like that. So I moved them to the closet. Problem solved!

In order to prepare for the radiation treatment I had to make two trips to the radiation clinic. We are fortunate that we are able to go to St. Josephs Hospital in Federal Way for the radiation treatment. Virginia mason also has a branch hospital in Federal Way about 2-miles from St. Joseph's where I have to go every Friday to get blood work done. This is much more convenient than fighting traffic to get downtown.

On my first visit they made a "mask" for me. The radiation treatment is designed to focus a radiation beam at the major cancel cell groupings and kill as many as possible. In order to be successful they need to radiate the "exact" spots each day. To make it simpler they make a mask (custom fit to my face) that they use each treatment to "bolt" my head down to the treatment table so I am in the same position each day. It is very restrictive. Initially everyone was very concerned about claustrophobic reactions. Fortunately I don't have any. The process of making the mask was simple and actually enjoyable. I told the staff that they should stop scaring people with concerns about claustrophobic issues and just tell them that the process was like going to a very expensive European spa for a facial treatment. They thought that was "interesting' , but probably wouldn't work for them.

A few days later we returned. I was laid out on the table, the mask was bolted down and they took x-ray images of my brain so they could line up the ray-gun with the MRI pictures of the inside of my head. Of course this is all computerized. From then on all they need to do is bolt me in, set the computer, verify location and pull the trigger.

I was pretty anxious about beginning the procedure, especially starting on the chemo pills. Sunday night I began with my first pills. I admit that it was a rough night. I expected all kinds of bad reactions. I was very pleased that I didn't' have any reaction (except to the anxiety).

The "Bad news" phone call

Four days after the surgery my surgeon called to give me the results of the biopsy. He said I had Glioblastoma Multiforme (translation: really bad news!).

We had 4-days before we met with my neurologist (the head of the cancer team), Dr. Lynn Taylor. So I used the 4-days to research all the bad news I could find on the Internet, given the single bit of information I had. Unfortunately there was no shortage of bad news to be found.

When we did finally get to meet with Dr. Taylor she gave me the only bit of good news I have had since June 21. She said the removed tumor was relatively small and that the surgeon seems to have gotten it all. EXCEPT that there was a very large "shadow" in the MRI that she suspected was another growth that hadn't yet formed into a compact tumor.

She explained the treatment plan she wanted me to begin which includes an initial 6-weeks of combined radiation (Monday through Friday) in conjunction with Chemotherapy (pill form) every day for the 6-week period. There would then be a 4-week recovery period (no radiation or chemo). The next 8-month would include one week of chemo (a much larger dose) followed by three weeks of nothing. Repeat, repeat, repeat.

I liked the plan (I like any plan). I was anxious to get started. So, on August 3 I started with my first radiation/chemo treatment.

Fathers Day, 2009

On Fathers Day, June 21, 2009 at about 1:30 PM I was putting groceries away when I began experiencing what I call "an out of body" experience. It was like I was standing there watching myself put the groceries away. I know that I wasn't really speaking out loud (?) but in my mind I was actually carrying on a conversation with myself. This lasted about 2-3 minutes. I remember moving upstairs and going to the bathroom. The next thing I remember I was being questioned and prodded by a bunch of firemen. I was on my bedroom floor.

Evidentialy I had experienced a brain seizure. Within the hour I was at Burien Hospital surrounded by my children and family. Within 2 hours they had completed an MRI and identified a brain tumor on the right side just above my ear in the outer portion of the brain. By the next morning they had completed a CT-scan and discovered a growth (presumed to be cancer) on my left kidney. The initial fear was that I had Kidney cancer that had spread to the brain (not good).

Within two days I was discharged from Burien. I went to Virginia Mason which is where my doctors are. They scheduled a PET-Scan which told them that the two cancers were not related. By Friday, June 27 the decision was made to operate to remove the main tumor. I met with the surgeon who had performed surgery on my back a year ago and he agreed to do the brain surgery. We scheduled it for June 30th.

The surgery was successful and 3-days later I was home recovering. I was back at work two days later and feeling like I was going to be just fine.