Friday, May 19, 2006


Tales of this weeks poking and prodding.

Tuesday I met with Baylor's Director of Marrow Processing (almost sounds like something out of Soylent Green - ) to talk about a possible bone marrow transplant (which is the same as stem cell transplant and, oddly enough, doesn't involve an actual "transplant" or surgery). Hopefully, I'll be able to donate the bone marrow to myself but regardless the process is at least four months away so I really don't have to think about it now. Pain quotient - 0

Wednesday was a big day for poking and prodding. The day started out well enough. The MUGA (Multiple Gated Acquisition) scan of my heart was dominated by discussions of the technicians new Jack Russell terrier. The dog talk was a good distraction from the little prick I got when he accessed my vein. The tech drew blood, mixed it with dye then injected it back into my system for the scan. Once the vein is accessed there's really not much pain involved. Pain Quotient - 2

Next I had a PET scan. Luckily they were able to use the access the MUGA tech had done to inject the dye into my system so there was not real pain involved with the PET scan and I got to nap for almost an hour in a darkened room before the actual scan. Pain Quotient - 3 (because of the crappy "pina colada" they gave me to drink)

I saved the best for last --- a bone marrow biopsy! This was ten minutes of pure pain. I have a couple of friends who have, unfortunately, undergone the procedure and warned me that it was painful and that the pain can linger for several days afterward. So I took my iPod in for distraction --- it didn't work! The bone marrow biopsy team had me lay on my side then they gave me a local anesthetic and stuck what I can only imagine was an incredibly large needle into my backside and into bone. Luckily, bone marrow biopsies were the nurse's specialty and, though the pain was off the chart, there was no lingering pain. Hopefully, I'll never need another one. Pain Quotient - off the chart.

Monday, May 15, 2006

The Ninth Season

"Honey, it's over. None of that happened." Bobby Ewing, as he stepped out of the shower, to his future wife Pam, reassuring her that all the bad things that happened in Dallas’ ninth season were just a bad dream.

In the last episode I had just gotten out of my third cycle of salvage chemo after a trip to Indianapolis to visit Dr Larry Einhorn, the testicular cancer specialist. Dr Einhorn called May 2nd to tell me that his pathologist had noticed something unusual about my tumor cells and decided to run some further tests. The results came back negative for testicular cancer! I have been misdiagnosed! I don’t have testicular cancer I have Non-Hogkins B-Cell lymphoma (which, ironically, is what my surgical oncologist and original CT scan report suspected from the very beginning – before my first biopsy). My tumor cells had been tested by three pathologists (including MD Anderson) and they were all wrong. Usually, the distinction between the two types of cancers is easy to make but because I’m “special” the lymphoma cells presented themselves enough like seminoma that there was confusion. I could have gone through the whole round of testicular cancer treatments and never known that I had lymphoma. Luckily some of the same chemo drugs that are used with testicular cancer are used with lymphoma and would have kept the cancer at bay but I wouldn’t have been cured until, as a last resort, I had a bone marrow transplant.

What happens now? This week I’ll undergo a PET scan, a MUGA scan to look at my heart and a bone marrow biopsy. The results of those tests will help determine a treatment that will probably include more chemo and a bone marrow transplant. Then I’ll meet with doctors to discuss the results and decide where to be treated and make sure that I really do have lymphoma (samples of my original biopsy have been sent to NIH and NCI. The NIH has confirmed the lymphoma diagnosis, saying it was a difficult one to determine). My doctors have assured me that my prognosis for lymphoma is better than it was with testicular cancer which has a pretty high cure rate itself.

Hopefully there won’t be any more surprises.

Thursday, May 04, 2006

Cancer part 2

Okay, so while it's not, at this point, confirmed it looks like I've been seriously misdiagnosed. Einhorn called Tuesday evening to say his pathologist noticed something "off" about my tumor samples and decided to run extra tests. Well, come to find out I don't have testicular cancer I have lymphoma! So, for the past couple of days I've just sat around numb. I had actually been looking forward to finishing this last round of chemo and getting on with my life and now it looks like I may have six more rounds of chemo do to. Of course, this could all turn out to be some great big joke too if Einhorn's tests aren't confirmed but I have a feeling that they will be. God must be laughing.

I discovered in USA Today earlier this week. This guy Ian has a brain tumor, takes pills for his chemotherapy, gets a cough as his only side-effect and is LIVING with cancer. Why is it I can only wade through it?! Why does it seem like the most curable forms of this shit are the hardest to go through? Cancer, thank you very much, SUCKS.