Sorry for the lack of updates as of late. I thought the proton therapy thing was a done deal, but it has been very complicated. And we still have not made a decision.
The decision WILL be made tomorrow and I wanted to give you all a brief summary so that you could be praying for Don and me as we decide.
Monday, December 22 we went and met with Dr. C at the Proton Center to discuss my eligibility and answer any questions we had about it. We were comfortable and excited and said "yes" this is what we want to do.
They took me down for my planning session. I was scanned and marked. (They used the tattoo marks I already had and added some sharpie marks of their own as reference.)
Then we saw a research nurse who asked if we would be willing to allow them to collect data from my labs and regarding my side effects for future research.
The next day, we went to see my regular oncologist, Dr. M, for a followup visit after completing chemo. We explained to her that we had decided to go with proton therapy. How we were looking to reduce the risk of long term side effects from radiation, specifically to my heart and lung. She was surprised, but did not have much to say about it at the time.
On the way home, Dr. M called and explained that she had called a radiation oncologist friend and talked with her about proton therapy. This doctor was surprised as well as it is not the "standard of care" for lymphoma patients. She presented me with some questions to be sure we had answered regarding proton therapy so that we could be fully informed.
Well, this goes on for the next week: me calling the proton center, the proton center calling Dr. M, Dr. M calling another radiation oncologist, the proton center calling us, us calling Dr. M. Whew!
So, tomorrow, we are meeting with Dr. C at the Proton Center one more time to be sure that ALL our questions are answered and that I/we understand what it is I am getting myself into here with the proton therapy. That appointment is at 2 p.m. and my first treatment is scheduled for 5 p.m. Obviously, we have to make our decision by then.
We have postponed my other radiation start date by one day as we attempt to make this decision. If we decide NOT to go with the proton therapy, I will start on Tuesday at 2 p.m.
Either way, I will be done the first week in February.
Thanks for your prayers!
Germany ... and a road trip to Norway
2 weeks ago