I've been hesitant to blog lately. We're all dealing with the strain of the after effects. I'd like to post something rosy, but that would be dishonest. I started the blog to inform friends and family, and to have a record others could use to get a realistic idea of our path with ALL. Now I almost regret having started it since I feel like I need to keep going, and to my surprise, what we are going through right now is almost as challenging as the chemo and transplant.
Don't get me wrong: we are all blessed beyond measure with Ryan's survival and the success of the transplant. It was what we prayed for and dreamed of.
I underestimated the emotional tailspin that would follow.
Ryan feels pretty lousy most of the time. He's having trouble eating and drinking adequately. As a result a PICC line (an IV that goes from his arm into the large veins in his chest) was placed last week so he can get IV fluids at home. After a few days of adequate hydration, he had been able to eat and drink more.
Brad Ferland came to visit and cheered him up watching some silly tattoo show on TV and making fun of the show. Last weekend Ryan went to New Hampshire to see "The Hobbit" wearing a mask aand gloves in the balcony of a small town theater. Brad arranged for Ryan and Sophia to have the balcony to themselves and to enter via a separate door after others were seated to avoid contact with crowds. Then they spent the night at a hotel in NH for their anniversary. He traveled with his IV in a backpack.
Shannon came for Christmas and I think that cheered him up a bit. She was able to get him laughing.
While I really can't speak for him and I don't want to misrepresent his experience, much of the time he seems to have lost interest in most things. And I know he gets really tired of me monitoring his hydration status and how much he eats.
I am walking a tightrope trying to let him be an autonomous adult while at the same time keeping tabs on what's going on medically.
We've made it through the really hard physical stuff, and past the uncertainty of survival. We were braced for all that. Now comes the day-to-day drudgery of survival. The guilt (a good friend we met at AMC is struggling with repeated recurrences), the misery of the chemo side affects, the uncertainty of what the future holds, the denied emotions.
Early on in this process, the staff at Dana Farber told us of their resources - counselling, a library with books about cancer and survivorship, on-line and community cancer society and leukemia society support. At the time, we were focused on his treatment and tackling the next battle. We were optimistic and determined. We felt like we were doing just fine. We didn't really think about the reality of living with the long term side affects and the uncertainty about the future.
Now I'm feeling burned out, and all of us are struggling to re-establish some sense of "normal". The cancer and Ryan's continued malaise have become the elephant in the room. Ryan doesn't want to be defined by his disease. But he has none of his pre-cancer life. No college, no freedom to eat his favorite foods (and none of them taste right anyway), no nearby friends. Just the student loans which need to be deferred and he worries about repaying. Right now everything seems suspended in time. It will be another 10 months before he can live on his own or get a job or go to school.
My life for the past 7 months has been defined by Ryan's illness. Ryan is doing well enough that he no longer needs me available 24/7. I have things I want to do, but I have been reluctant to make any commitments or start anything for fear that Ryan will need me. It's time to extricate myself as much as possible and let Ryan and Sophia assume responsibility for his care.
So we're all struggling to make the transition from the fight for Ryan's life to living. For some reason I wasn't prepared for this stage. Maybe I was afraid to plan for this - his survival - out of fear that we'd never get here. Or maybe just taking one day at a time. Or maybe it's just emotions of the holidays. Or maybe we were all just so happy that he was going to survive that we were in denial about the rest of the struggle that lay ahead.
I know that these are things we all need to work through. Little by little we're each facing our demons and our fears. We'll figure it out.............
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