In general conversation, Steph and I have likened my treatment options and subsequent disappointments to a Game show scenario. I became a contestant back in March, with my initial diagnosis. At the time, it seemed that the prize, in this case an easy cure, was to be found behind Door Number 1 containing 12 treatments and or 6 months of ABVD. This door had phenomenal odds, allowing 9 out of 10 previous contestants to go home with the ‘prize’. Unfortunately, I was not so lucky with Door Number 1 and it looked like Door Number 2, may just do the trick. In order to open Door Number 2, I would have to participate in some fairly intense ICE game play. I admittedly was skeptical of the results of opening Door 2 and my gut feeling did not scream WINNER; I was right. Sometimes in the game of life you have to trust your gut and I knew Door Number 2 was going to lead nowhere. Door Number 3 was a relatively new addition, but for some it totally paid off. I was pretty willing to take my chances and see what was behind Door Number 3. Only to discover that this too was not going to get me that ‘trip’ to Boston (for my stem cell) that I had been hoping for. And on to Door Number 4…
I wanted to know exactly what I would find behind Door Number 4, especially since Z was very optimistic that this particular ‘Door’ may just do the trick. My fourth option came with a very handsome, Duke alumni Emilio Estevez look alike for a radiation oncologist, that I’ll refer to as Dr. G. I had a brief consult with Dr. G back in March and had really hoped not to have radiation due to my concerns about related long term side effects. However, I should note that my refractory status would not allow that. If I don’t have radiation now as a means to get to the stem cell I would have been having it later to ensure any microscopic cells lingering about after the stem cell were picked off. Radiation was once the primary treatment for Hodgkin’s patients in general until the 1970s when concerns related to the long term effects proved that chemo or perhaps a combination therapy may be more beneficial. Thus, radiation is known to work for a large number of Hodgkin’s patients. And it turns out that being chemo resistant does not necessarily mean that I will be radiation resistant. So that is really great news! The goal for my radiation treatment plan is to target the tumors in my neck and mediastinum area that have evaded traditional chemotherapy regiments behind Doors 1,2, and 3.
My concerns for long term health issues were validated when Dr. G explained that I will be at higher risk for heart disease, lung cancer, thyroid issues, and breast cancer due to the radiation fields. He said the risks exist but are not guaranteed, just like the likelihood of getting Hodgkin’s is a relatively small risk but here I sit. He was more concerned with his ability to block my heart from the radiation field, because the placement of my tumors made lung damage fairly improbable. However, one of my tumors was sitting directly above my heart, making it nearly impossible to keep it completely blocked from the field. So that whole thing was news to me, but regardless of potential future risks I have to see what’s behind Door Number 4 anyhow. And Dr. G reaffirmed that once all of this was over, I would need to become a health nut.
So the radiation oncology department in terms of physical space actually has a lot of doors and a lot of people who are part of Dr. G’s team. They were all absolutely wonderful. They explained that my treatment plan details needed some ironing out in terms of actual number of treatments, which would be decided by Dr. G and my radiation oncologist from Boston, Dr. M. Dr. M. Is a Hodgkin’s specialist who has been in the field a long time. Z knows and likes him, which always puts me a little more at ease. And Dr. G even told me a story about how Dr. M actually gave him his Boards and is notorious for asking off the wall questions just to screw with people. Seems like a good fit for me based on that! It was likely that I would need 15-21 treatments that would take approximately 90 seconds. The set up time was the most time consuming. I spent much of my appointment being fitted for the machine and getting my fancy new blue dot tattoos so that I would always be lined up precisely the same way. The mold was an interesting experience. It sort of feels like a bean bag that the air is then sucked out of to make a hard cocoon mold around your body. It is definitely awesome technology and so weird at the same time.
While I am uncomfortable with the idea of radiation, it is my last option to get to an autologous (using my own cells) stem cell transplant. If this works, I win. Boston here I come. If it doesn’t there are still more doors to open they just involve more invasive options and much longer, harder road. So let’s hope Dr. G and Dr. M help me get the prize behind Door Number 4!