Monday, August 25, 2003

Sunday was great, got up, watered the yard, trimmed some plants, Sara and I worked the leaf vacuum-blower thingey, then I bonked, went inside and took a shower. Trooper as always, she finished the tasks to her specifications, came in and had a shower. We had a light lunch at Aqui's, a Cali-Mex restaurant in Willow Glen. What is Cali-Mex? Well, it's like Tex Mex, but expensive as hell, and you sometimes may be hungry when you leave. Chuy's Comida Deluxe in Austin is still the comfort food KING!

Back to the house for a quick nap, then over to Dale & Joan's for dinner with them & Jack. I will keep repeating this, having friends is my #1 strength. woo hoo. In bed early, Monday is a big day. Joan got a job at Ducati North America. Yay Joan! Dale just got back from Japan. Yay Dale. And Jack? always YAY Jack. He told us a story about his mother, who says her front room is lit up light the airport at night, from all the colored LEDs on things. DVD, VCR, TV, etc. etc. I asked him to tell her, I have placed squares of electrical tape over every LED in my bedroom. Nothing lights up to annoy me. Sure, it looks odd, black tape over devices, but I have tried to make it look like racing stripes. And Dark. did I mention Dark? :) (Howdy Mrs. Walshe)

Wake up with sunlight, shower, shave, and off to work. There are a few more things I think I can do, and want to handle them. Work on a few projects, then Keith comes in. He has just returned form a sailing vacation to Belize, looks tanned, relaxed, and happy. We chat about work for a bit, and he reminds me I MUST make lists of accomplishments. It is not enough to DO the good stuff, you gotta report what you did. Okay, I will work on this.

Larissa is supposed to be on vacation in Mexico, but her flight was cancelled due to hurricane or something, and she is at her house, dialing in and working. GRRR! I told her "vacation, it means time off and not working." She won't listen. I suggest she go to santa Cruz to the boardwalk, or shopping for frivolous clothes, or anything, not work.

Today I recieved many emails from freinds I have not heard from in a while. I need to return emails, and phone calls. My list keeps growing. Thanks for the emails Sara, James, Mig, Christos. Thanks for the calls, Evvy & Mike, Cindy, Lawrence, Louis & Dirty Steve. I will try to get replies out ASAP

So I leave the office and head to see Dr. Colburn at O'Connor. He is the Radiation Specialist. Have I mentioned I am kinda scared about all this? I mean, I KNOW what is coming, I KNOW this type of cancer has a 98% survival rate. But I am still scared. Will they Zap me? Will they Juice me? Both? Neither? Either? What is gonna happen??


As always, I try to get to the hospital/doctor's earier than my appointment. I already have my insurance card and ID ready. They photocopy these everywhere you go. Smile, be nice to the lady in the window. They ARE on your side.

After a few moment, I get to meet Joyce the Nurse. She is wonderful, cheerful, takes my temp, blood pressure, quick history interview, and chats with me a bit about what may happen, and what I should discuss with the Doctor. Really, I have always liked nurses, they give so much. Hmm, Lance started a charity to help cancer research, maybe I should start a charity to help buy nice things and smiles for nurses....

Anyhow, Nurse Joyce sets the tone for the visit. Things will be good. .... then she mentions I may have a prostate exam!! OH NO!

Sidetrack> Years ago, I would take Ladybird the Wonderdog to Dr. Greg Biehle in Austin. He is a great vet, who really has a good way with both animals and their pet humans. Every so often, Dr. Biehle would need a stool sample from Bird. He'd use a long white sample 'spoon' From the moment the spoon entered Bird's backside, she would freeze, absolutely motionless. Like a statue.

Till the exact moment the spoon came out. At that moment, she'd turn into a wild demon, trying to bite anyone near her. I never really understood why she remained absolutely motionless. Till my first prostate exam. Once you know what is happening, you want to remain as still as possible, to prevent ANY extra or unnecessary motion back there. Laid over a table, when it was MY turn, prostate being examined, I was absolutely motionless, till the offending instrument was removed. Then I tried to bite the doctor. Years ago.

Back on Track.

I have had extremely wonderful luck with medical staff. Dr. Nguyen my GP is great. she almost always has time to see me immediately, and really takes care of me. Dr. Andonian, who did the surgery is president of the staff at O'Connor, has a wonderful attitude, amazing mental rolodex, and dispenses advice well.

Dr. Greg Colburn. Radiation Oncologist. Good Guy. I like this man. He spent nearly an hour and a half talking with me, explaining things, discussing posibilities, and making suggestions of what to do next. I felt like I was interviewing him for a job, which, really, I was. And I would have this guy on my team any day of the week. I was impressed.

So much happened, I will try to sum it all up.

First, My questions:
A) Teamwork & Timing: You will need to work with Dr. Steve Scates, I have an appointment with him next Monday. Is this too far away? Should we try to see him sooner? Is there anyone you would rather work with? How do you formulate a program for my treatment?

B) When do we start, how long does it take?

C) How bad is the treatment?

D) Should I get a second opinion? Who would you recommend? Everyone tells me I need to "manage my treatment" what suggestions would you give a guy like me to do this effectively? I do not have time to put myself through medical school. What do I do?

E) Should I be taking any drugs, change my diet, add vitamins? Are bagel dogs the perfect food?


His answers, somewhat diluted through my filter, for time.
A) Dr. Scates is a great Medical Oncologist, and we can easily work with him. Monday is not too far away, it is just fine, you are not in any danger. Plus it will give you time to bank sperm, you are doing that, right?

You are a Stage II-B patient. this means the cancer has progressed out of your testicles into a few nodes in your left abdomen by your kidneys. It has gone far enough we need to consider the proper treatment. It may be Chemo, it may be Radiation, it may be both. But the cancer is not in your lungs or brain. We have time to catch and treat it. Cancer is not cured. You do not cure cancer, you survive it. You are in great shape to survive this one.

If radiation is the therapy of choice, we can do that here. However, it may have some effect on the bone marrow, so if it fails, chemo would be the next step. the issue is, if the bone marrow is weakened through radiation, you will be weak going into the chemo. So we may opt for chemo first. We need more research on this.

B) You need to meet with Dr. Scates next Monday. After you meet with him, we will contact each other and discuss this. Until we decide what treatment to use, discussing times and lengths is jumping the gun.

C) It is different for everyone. Depends on what we do

D) Great question. In our discussion, I think you hit the nail on the head. You need to find a doctor you are comfortable working with, who knows latest treatments. You should be comfortable with this doctor, or team of doctors, and they should be able to explain everything to you. Learning does not mean you have to know all the details. But you should learn some options. If you want second opinions, or other physicians, I will be glad to give you some names. You are really lucky, we are so close to Stanford, you are literally a few miles away from one of the country's leading cancer research hospitals. I work with them constantly to keep up to date. My thought is to call some freinds there, and see what treatment is thought best at the moment

E) multi-vitamins, but NOthing with 'oxidant' or 'anti-oxidant' they can hamper the radiation or chemo. A good balanced diet, high in protein, we have dieticians on staff to help with that. You need to eat well to rebuild energy and blood cells during treatment. No comment on the Bagel Dogs.


>>>

then we discussed my health, motorcycle racing, effects of treatment, and more on this 'contacting stanford' business.

That boils down to: The cancer I have is VERY treatable and survivable. Usually the treatment conflict is about what can be done, and can it be survived. Is the treatment worse than the disease. However, in my case, there are SO MANY effective treatments out there, the conflict is chosing and tailoring the correct treatment for me.

We also discuss fatigue. It is perfectly normal for me to be this tired. I should listen to my body and rest. Okay. I kinda knew that. But validation is great. He examined my incision scar, which is healing nicely. The muscles are sore, but in an appropriate way. My focus and attention problems are also normal, I need to stop thinking about this so much.

We discuss my web-log, and attempt to diary all of this. He says lots of people start, but they glaze over the treatment part, cause it is a difficult time. But do it, it is good stuff. Most people can tell what happened to THEM, but not in general. As long as I remember, this is MY cancer, and not what happens to everyone. But the idea of trying to put together a list of what happens, and stories as it goes, is probably a good idea.

I like this. I feel much better. Sure, nasty things are gonna happen, BUT, I will survive them.

Oh, and NOOOO Prostate exam! woo hoo!

NEXT STEP! bank sperm

After that? Meet with Dr. Scates next Monday, have HIM examine me, then they will both discuss, and we will start working on a treatment, assuming I like dr. Scates as much as I like Dr. Colburn.

I think I will try to have Sara come with me to Chemo Dr. Scates, just to ask more questions, and, of course, in case he says "yes, bagel dogs ARE the perfect food"


Other Business> Many MANY of my friends have made wonderful offers to speak with their doctors, freinds who have had TC, Chemo, etc. and Joe, who's folks neighbor is BIG Dr. at John's Hopkins has offers for discussion.


I am going to wait till I have 2 doctors, on the team, making decisons and suggestions, THEN I will begin chatting with folks. Like Jack tells me, one step at a time. One Step at a time.


In closing, it is DAMN hot in San Jose. Why is it this damn hot? I know, not TEXAS hot, but Damn Hot.






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