Update - Biopsy Results
All -
[Also posted on my blog: breathingroom.tumblr.com]
Apologies for the brief note, and the fact that it has taken so long to get back in touch. Many of you heard from me or from friends about my bad biopsy results, others may have guessed from my silence that I received bad news.
The biopsy surgery removed the entire middle lobe of my right lung and a portion of the upper lobe, which previously had been ‘re-sected’ (surgically cut apart) as well. The surgery went very well, and I have healed very well from it. The surgery produced two novel facts: 1) my lungs have grown ‘adhesions,’ that stick them to my ribcage. This sometimes happens with radiation and chemotherapy - it basically means that the healing process accidentally sticks the lung to the chest wall. This might explain some of the chest pains I’ve been having for the last few months. Clearing out some of the adhesions has enabled me to get off steroids. 2) There was a golf-ball sized mass in my lung that was positive for Hodgkin’s Disease.
Because it survived my last round of treatment, that makes it drug-resistant, refractory Hodgkin’s Disease. There is no medical consensus on how to treat the disease at this stage, other than with an allogeneic bone marrow transplant. Good news on this front is that my brother is a 10-point (perfect) match. For information on allogeneic BMTs, here is a decent webpage:
http://www.rush.edu/rumc/page-1124115591626.html
Right now I am exploring various options - every major cancer center in the country has its own way of doing things, and we are now officially ‘off the map,’ as far as treatments are concerned. Every place I consult has a different clinical trial going on. I will be making a decision about where to go in the next two weeks and will inform you all as appropriate.
Lots of people have asked how I am doing. I don’t really know how to answer this question. Imagine if you’d been living with the knowledge that you had a 50% chance of dying from a disease that 85% of people survive. Now imagine finding out that you chances have been (roughly) halved again, and that if the disease repeats its most recent performance (relapses less than 6 months after the transplant), you will certainly die and most likely very quickly. A simpler mental experiment is asking yourself “what would be running through my head if I knew I would most likely live less than 5 more years?” If you can’t think about those things without getting a little depressed, try wrapping your head around the fact that about the only thing you can do besides choosing a good doctor to improve the odds is to avoid a fatalistic, negative attitude and live a healthy, positive lifestyle.
Suffice to say, if you have praised me for being a certain way since I was diagnosed - good-humored, up-beat, rational, intelligent, etc. I have been the opposite of those things for the last two weeks. I also have an extremely large and painful surgical incision, and I think the painkillers do not help with my disposition. I am working on getting back to being myself and figuring out how I want to be for however long this phase lasts. I know I need to find more strength and determination to be a survivor, but right now I feel beaten down. I’m entitled to a little while on my back, I figure, as long as I eventually get back up again.
It’s not the first time I’ve been dealt a devastating setback in life, and it won’t be the last, but it’s going to take a while to recover from. Sorry if I have been surly and uncommunicative - it’s not you - you’re all wonderful - it’s me.
Hope all is well, thanks to all for prayers and good thoughts.
DS
