DIAGNOSIS !!!

After 4 months of waiting, I finally have a diagnosis! There was some mystery and a little disagreement between the VA pathologist and the Mayo Clinic, but the final diagnosis is that I have Nodular Lymphocyte-Predominant Hodgkin Lymphoma NLPHL. This is a vrey rare form of Hodgkins, but apparently very treatable. My oncologist gave me a choice of 1) having Rituximab only and then "living in peaceful co-existence with my cancer" or 2) having the R-CHOP chemo and standing a good chance of "Complete response" (still tryin to figure that one out). The R-CHOP will be 6-8 infusions every three weeks. Since I will probably be feeling well enough to to meaningful work at least half of the time, I have chosen the R-CHOP regimen. I shouldn't need radiation treatment afterwords. I am STAGE IIA (only tumors in my abdomin and no organ involvement (I experience no symptoms). What is still a mystery is that the internet research says that NLPHL occurs frequently in younger people and most often in the head-shoulders area and that Hodgkins is frequently treated with ABVD regimen. So, we'll start preping for August 3rd to start. We will drive down to Albuquerque (250 miles) have outpatient infusion and drive back home to Pagosa Springs, CO to endure!

I'll trade a vowel for a bowel!

Happy fourth of July. We will return to Albuquerque next Thursday/Friday to remove staples and visit with oncoligist. I think it will take several days to get and honest bowel movement. I will do lots of research on Hodgkins. Probably won't start chemo till August...gotta wait for surgery to heal. Can't lift nuttin. Eatin small portions.

It has taken 4 months to get a diagnosis. Yikes !

Me and Bobby

Surgery on Monday..........During the night on Monday, I became aware that I had a tube stuck through my nose and down my throat and I had a catheter. The throat tube was giveing me a sore throat, I didn't feel or wasn't aware of what the catheter was doing. On Tuesday morning someone came in and pulled out the throat tube and the catheter. Very uncerimonious ... and briefly painful. On Tuesday I rolled out of bed, VERY PAINFULL, stood up and waltzed one time around the nurses station with my IV pole. I had been told by a friend to get up and walk walk walk as soon as possible. I was not to have ANY food or drink until Wednesday evening. When you are being continually fed by an IV 24/7 you have to pee about every 2 hours. When they remove the catheter you then have to either roll out and sashy to the toilet or pee in the plastic bottle they supply (10% into the sheets!). I got up 4-5 tiimes each day and forced myself to walk around the hallways. You realize that the only person who really understand you is your 70-something roommate who is just as miserable as you. We could joke back and forth all night.
By Wednesday night I was watching movies on my laptop supplied by Roberta's son Clay. Black Sheep (vampire mutant sheep was a good gruseome comedy filmed in Australia). At 2:00 Man from Planet X ( a 50's black and white) got me back to sleep. I got out on Thursday morning. Taking my first shower, I could finally see that I have a stapled incision that starts high on my stomach, runs down about 6 inches, curves around my belly button and continues staight down another 2 inches. They've installed a sanitary pocket so that I can pretend to be Napolean next Halloween! (not). My wonderful oncologist came by on Wednesday and pronounced that the pathologist had been happy and that the preliminary diagnosis is Hodgkins Lymphoma. Roberta and I spent the night in Albuquerque with family and returned to Pagosa on Friday, July 3rd.

Gotta have my TV!

On June 29th Roberta and I reported for surgery. I first checked into a pre-op unit where they steal my clothes and get me ready to be wheeled off. Spent about and hour there. Then some folks came and got me and wheeled me down to the holding area in he surgery area. Anesthesiologist waas training a med student to do install the IV. She missed twice. The anesthesiologist then tried and missed.....then a med Dr came by and got it immediately. It's standard protocol for the surgeon to pop in and MARK you as to where the surgery will be. I sad that I had not seen the surgeon yet.....there was lots of calling back and forth because the surgeon thought he HAD been by. So, he finally showed up and informed me that I could lose all bowel and/or sexual function or I could die! I'm thinking .... "and this is only for a biospy!"
The next thing I was aware of was that I was in a ward recovery room.....Yahoo, still alive!......
The first thing I noticed was that the TV didn't work. Roberta joined me and said that the surgeon had told her that the surgery was a total success. The nurses showed me the magic morphine button that I could push myself. I complained about my TV and the nurses said they'ed move me right away. That was about 5:00 PM. When I came out a a haze about 9:00 Roberta was there. I was really pissed at no TV now and was ready to storm out of there. I called and complained again. The nurses moved me to the next room about 15 minutes later!
I pushed the morphine button 13 times the first night......don't remember watching TV.

Bones "What they do back in the 20th Century is sheer butchery Jim!"

So anyway...........after the useless surgery in May, I ended up scheduled in the GU clinic for the second surgical biopsy try. There are a couple of surgeons that come over from UNM and perform surgery in the VA GU clinic. These surgeons specialize in cancer and can do lots of laproscopic surgery. Yahoo! I went down for a consultation in GU, first with a senior surgeon. Looking at my record for the very first time, he looked at the results of the bogus biopsy and proclamed that "maybe we should be redirecting you towards Infectious Diseases." I was compelled to inform him that "no, it has already been shown through 2 PET scans that I Do have 2 clusters of 2-3 cm tumors that have grown to 3-4 cm in 3 months. He turned and dug a little deeper into the records and said "yes, we probably need to to get in there and get a good sample soon!" He then got me scheduled to see the UNM surgeon later that day who fortunately happened to be there doing some procedures. While I went off for blood work and nursing pre-opt checkout, the UNM surgeon waas able to stop by and take a close look at my PET scans. When I finally met with him he proclaimed that the tumors where in locations far ro risky for laparoscopic surgery, and that he would do open cut surgery. It was a big relief to finally be talking to someone who seemed able to make the right decision. AND he was a skilled cancer surgeon! (A message of mine will always be that you MUST be involved in your medical decision making)