February – This is it

I am the medical tourist. This month’s schedule is unbelievable. I am gone on every week on a medical trip but one.

It starts out with a trip to UCLA for a PET scan. Since both of my parents died of cancer I keep wondering if this is the beginning of the end. Not in a depressing way but more curious – clinically curious. I have never been depressed by the prospect of having cancer. I do want to know if I am being smart in treating prostate cancer with protons. I want to know is if there are any other medical problems I need to address – are there other potential cancers?

The PET scan thankfully shows that I am in good shape. One thing does come up is I have a bone spur on my lower spine. It is degenerative with nothing to be done. I’ll have some back aches as I get older.

Since I’m in Southern California I drive the seventy miles from UCLA and arrive in Loma Linda on a beautiful cool blue sky day. In the background the mountains are snow capped, the lower hills are lush green, the streets are quiet almost tranquil and the hospital is a gleaming white. My god! This hospital even has valet parking out front. This is too perfect. There is one hitch. I like this place but it is still a consultation at the end of March with possible treatment start anywhere from one to seven weeks later. I meet the nurse who can’t move up the date. I see no doctors Can I afford to wait until May for treatment???

I really don’t want to go but the next week I go to Houston for my consultation with MD Anderson. The idea of living in Houston from middle of March to early May just is not what I want to do. I still go but once I’m there I change my mind. I am impressed with the vibrancy of the city. Little things become important. I visit a Whole Foods Market and it’s a better store than the store we have in Boulder. Things are looking up! I could stay in Texas.

The next morning I go to the MD Anderson Proton center. This facility shows better than any other proton center I have gone to. It bright, the colors are sharp. It has an advantage of having more daylight in the lobby and a color scheme which is either newer or just doesn’t look as dingy as other high use institutions. I meet with a very competent open admitting nurse. She is open accessible and most importantly, a person who clearly loves her job. Ty is by far one of the best.

The meeting with the doctor is efficient and thorough. Clearly he is a guy who is very good at what he does. After the consultation I am a candidate for treatment and they became a very likely treatment center.

Before I came down to Houston MD Anderson had told me they required a bone scan. A bone scan is used to determine if cancer has spread from the original site to the bones. The way it works is by injecting a radioactive solution which migrates to the bones and is concentrated in areas of greater cancer. A camera, sensitive to this radioactivity, takes a picture of the body and is read by doctor. All other doctors I spoke to said bone scans for prostate cancer are prone to false positives and generally useless for any PSA less than 10. My worse PSA was 6.3.

My real concern is the amount of radiation I'm getting. On top of the bone scan in the last month I had one MRI with a radioactive injection, two CT scan with ingested contrast material, a PET scan with radioactive injection. I know if I go to Loma Linda I would have at least one more CT scan. I also know every treatment day I at MD Anderson I will receive four x-rays or two at the other places. If I didn’t yet glow I was pretty sure I would by June.

All of the treatment start dates from Florida and MD Anderson were going to be the second week of March. I would start treatment at MD Anderson March 12. Florida wanted me to come at the end of February for a three day work up consisting of inserting fiducials as target for the prostate and other associated planning and prep work required for treatment. The start of treatment would be the same week as MD Anderson. I liked the Florida proton center a lot but the distance from home made it less likely I would go. I was not yet ready to cancel one of the accepting Proton centers. Loma Linda was still my backup.

The decision to choose a treatment location is quite difficult each center does thing a little bit differently and one is not clearly better or worse. What the decision was coming to was I was going to go to the center closer to Colorado. I also knew I was choosing centers which had less experience. I knew from looking at my own MRI the cancer was contained, I was in great physical shape so experience which was always preferable may not make a difference in a straight forward treatment.

The whole issue of experience hit home when I went back to MD Anderson on my third day in Houston. I decided to spend a few hours just sitting with the patients as they were waiting their turns for treatment. As I was speaking to a woman whose husband was being treated there was an increase in the number of patients. They started complaining about the delay in their treatment time.

The woman’s husband unbeknownst to the doctors at the MD Anderson had decided to have a pacemaker put in the Friday before. When he arrived for his treatment he announced to the doctors what he had done. The docs and physicist were quite concerned with the potential effects to the pacemaker by the proton beam. As they were trying to figure out the best course of treatment they had a conference call with Loma Linda. Two things were impressive with this. The first is there is willingness between all of these centers to share knowledge. The second was a willingness to care for the patient the best way possible even if it meant asking a competitor for advice. It gave me great comfort to see this in action.

Next we went back to UCLA to listen to a series of presentation by the scientist of the Crump Institute. These guys were developing imaging and research of cancers. I decided not to make a final treatment location decision until I had a chance to listen to any advice from these scientist.

This was going to be a four day trip. Connye and I would go in a day early so we could take advantage of being in California and go to the Loma Linda prostate cancer support group meeting held every Wednesday evening. On Wednesday morning I tell Connye I don’t really want to go to Loma Linda. I figure it would be disappointing if we liked it. After all I was getting very comfortable with the idea of Texas for treatment why would I want to add another variable to the decision process. Connye talks me into going - nothing is quite like the persuasive powers of a spouse.

I call up Janice Wilkins the admitting nurse I had been working with. I ask for the start time of the support group meeting. I am about to hang up I decide to ask her if there is any chance to move up my consultation. I know if I don’t ask I will always kick myself for not asking. “Well…yes” she says “Could you come in next week on February 26 for your consultation and we could make your pod on February 27. “Yes” I say. I immediately start to sweat profusely.

Holy Sh!t! In that one instant my plans have been completely changed. That’s the week I was to go to Florida for their workup. I was now in the perfect storm. Every proton center was lining up for a treatment start the same week. No matter what I decided in the next few days it would have to be final. No backup. I immediately send an email to Florida and make my first cancellation.

That night, in Loma Linda, there is a around a 150 people in the support group meeting. Men with their wives, some men alone some we were introduced just had their first treatment and most amazingly some alumni. Why would people come back a number of years later to a hospital for fun? These people are all open, accessible and more than willing to tell us their stories. The most important question I had was how long was the wait from the pod being made to the first treatment. Every person we asked said one week. The Loma Linda start date could very well be before MD Anderson.

Although we didn’t admit to each other both Connye and I knew we are going to Loma Linda.