In March of 2009 my wife Roberta was diagnosed with a brain tumor AND Ed has been diagnosed with NLPHL, a rare form of Hodgkins Lymphoma. Roberta had GammaKnife treatment for her tumor and seems OK (Future MRI tests). Ed will have R-CHOP chemo for 5-6 months.
Saturday, May 16, 2009
Went to Albuquerque for surgeon consutation in prep for laparoscopy in belly to get biospy of tumors. Surprised to hear surgeon say that they didn't do belly laparoscopies there! I had thought that it was a done deal. The surgeon suggested that he could find a lymph node somewhere else that would be easier to remove. He also stated that there was a surgeon in Gu who might "give it a try" or I could opt for major surgery that would put me down for 6-8 weeks from my construction business. "What do you think Mr Strickland?" I suggested that maybe a surgeon from the university might be called. The surgeon then acknowledged that there was one of the best lymphoma surgeons in the country there! However, he recommeded that he go ahead and find a lymph node somewhere accessible and proceed with a biopsy in the morning. He found a slightly enlarged node in my groin area. OK..fine.........I got ahold of my oncologist late in the day and told her what was going on. She was surprised and called the surgeon to say that it was unlikely that it was a cancerous node because it had not shown up on the March PET scan. The next morning I had the biopsy.....very quick procedure. The surgeon found Roberta in the waiting room and told here that the 50/50 chance of it being a cancerous tumor was reduced to 1%.............. it looked pretty normal. I now have an appointment to return May 26th and maybe we'll get the ball rolling to get the university surgeon on to do the laparoscopic biopsy!
Tuesday, May 5, 2009
You da one in the middle
I'm learing more and more about the medical system. The VA has a lot of compartmentalized specialists................ the oncologist, the radiologist, the general surgeons, the GU group. There is a common data base that they all put reports and instructions into. I have found the actual coordination between the specialists to be a little less than perfect. My role has been to follow through from one department to the next to make sure I get scheduled by department B who was requested to do something by department A. There isn't really anyone who keeps the whole ball rolling. My general practicioner in the Durango clinic has taken a strictly hands off approach to helping to keep things rolling in Albuquerque. I accept this role.....I worked in the government for 10 years, industry for 12 years and as a general contractor for 12 years. My bible has been "The Patient from Hell" by Stephen Schneider.
THIRD biopsy
I got a call from the oncologist on April 28th. The second biopsy apparently got a lot of material from the wrong place. The pathology report indicated that diagnosis was not possible and recommended surgically removing a node, which is now scheduled for May 15th. I'll go down on the 14th to meet the surgeon and anesthetist. My biggest impatience is that apparent Stage II will turn into Stage II or IV by the time I get the diagnosis! It really helps to make it real to read other people's blogs.
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