I was 7 years old the only time I went to Disneyland, but I still remember the thrill and fear of riding the Matterhorn. The curves and ups and downs of that 2 minute 7 second ride is unforgettable, partially because I am fearful of heights and mostly because I don't like the unknown coming at me in high speed. My life has taken on a Matterhorn-esque feel; I don't seem to know what is around the next bend and it's coming fast!
While in Houston last week I had a PET scan to see where, if any cancer was still active. Going into the scan I had high hopes based on the prior month's CT scan which was extremely positive and showing me heading quickly toward remission. At that time I only had a few lymph nodes remaining over the acceptable range of 1 cm. Unfortunately, my PET scan came back showing a few areas with activity and a significant amount of active cancer remaining in my thyroid. This was quite the letdown. I am ashamed to admit that I had a twinge of jealously when I learned another lady in my Mantle Cell group had her PET scan come back clear the next day.
I did have good conversation with Dr. Wang after my PET scan. We talked at length about my pain issues and pain management. He re-educated me with graphs and statistics on the success of using Ibrutinib. In a nutshell, without the Ibrutinib my life expectancy is greatly reduced. However, staying on this drug with my pain is a big issue.
Dr. Wang has determined that my pain is mirroring that of an arthritis and that the drug is causing some sort of reaction whereby my joints swell causing my extreme pain. He has told me that he has not encountered this with any of his other patients. This is not a "first" I want to be known by. We discussed the options and together opted to restart Ibrutinib and treat my pain with arthritis medications. I would begin the arthritis medication at the first sign of pain and stop the Ibrutinib for 72 hours if the pain was over a level 3. I was again filled with hope when I left his office for my Rituximab infusion. Five days later I was consumed with pain again, the level being a 7 or 8.
I am still taking Ibrutinib as well as trying the arthritis drug to reduce the swelling which presumably will take away the pain. I am currently waiting for these things to happen. It has been only 20 hours and I need to remind myself to be patient, stay calm, work through the pain, give the medicine a chance, and breathe. This is after all, the fight for my life.
As I am sitting on the couch again unable to do much more than shuffle to the bathroom, I can't help but think that one of the most frustrating things is how quickly my health changes. In a matter of about 4 hours yesterday I went from perfectly fine to riding the Matterhorn. I turned a corner, took a step and knew the pain was on its way. By the time it hit the drugs were behind the 8 ball. I have been chasing it ever since.
The Matterhorn only travels at 27 miles per hour which is not really that fast so it therefore gives you a bit of time to anticipate that something is about to happen. The onset of my pain seems to be traveling at about the same speed; just slow enough to know that it is looming yet fast enough to be unable to do anything about it.
I appreciate those of you who have offered food in the past, all of which until today, I have turned down. Today I accepted an offer that was given to me to help with food. It was humbling and difficult to do so but I am learning since my diagnosis that I cannot do life on my own. Thank you, Jaci for unknowingly, yet timely reaching out to me. There are no accidents. I appreciate you and Randy and the food more than you know.
I pray continually to be able to stay on the trial, to continue toward remission, to thwart off the pain and to stay positive, hopeful and faithful.
Thank you all for the encouragement - I love you; you make my journey much easier.