“I’m happy to say that I am in remission. That R word is something critically important to cancer patients…but I never lose sight of the fact that there is another R word called relapse.” – Kathy Giusti
It has been 8 long months so far of treatment with many more to go. The finish line is so far out and while what quite possibly is the worst of it is behind us the end is still 19 months out. I have been struggling lately as I watch and hear about others who have started their children’s treatment after us and are finishing it long before we will. It is a sickening mix of emotions as I am thrilled for their victory but in all honesty envious that they are reaching the finish line so much sooner than us.
Cancer is an unpredictable beast and most definitely not one size fits all. Each case, each child seems to find itself on a different road map than another. Some cases from start to finish are just 5 or 6 short months and others, like my son’s, are years of hospital visits, shots, nauseating chemo and spinal taps. I quite frankly am pissed off that we didn’t get an “easy” cancer and while just saying that makes me feel horrible it doesn’t stop me from thinking that way.
I am frustrated that a bone marrow transplant isn’t an option for us. It’s risk in relationship to the type of leukemia Tucker has is not worth taking. A transplant will do nothing to up his overall odds of the cancer not relapsing. Leukemia is such a complex cancer. Some children are able to move through their treatment quickly and put this whole nightmare behind them and for others treatment simply drags on for years on end. Worst still, for some the cancer overtakes them quickly and other their light is extinguished slowly over time and time again of relapses.
In retrospect to the initial prognosis for Tucker I should be thrilled that he is doing so well and not care at all how long it takes, just as long as we get to the end of it. But the months are weighing on me. I feel trapped by the diagnosis as it has so much control over my life and has taken so much from Tucker and I both. I long for the days where I can make choices and plans that are not centered around or manipulated by treatment plans and/or unexpected symptoms and side effects. I know that Tucker longs for the days when life feels like that of a normal 11 year old boy.
So I sit here unsure how to reconcile my feelings. How do I get past my resentment when I hear that a family has completed treatment so that I may fully rejoice in their victory. How do I get past my guilt that my child is still able to fight when I hear the crys of a parent whose child has lost the battle and paid it’s ultimate price. How do I deal with the anger that my life, my son’s life, has been completely derailed. How do I deal with the fear that he will relapse and this whole nightmare will start over.
Thankfully we will be going on Tucker’s Make A Wish Trip soon. Hopefully it will be a much needed break to recharge us as we enjoy the special time together. It is coming at a perfect time as we celebrate Tucker’s transition from being in intensive treatment to the start of maintenance. While this initial maintenance will still require 8 inpatient treatment, every 28 days, it is a step in the right direction. With this transition I am trying hard to focus on the positives. Tucker is in remission and has survived an intensive block of chemotherapy. He has regained most of his strength and remains in overall a stable and healthy condition. Hopefully focusing on those things will distract me from the my other feelings as we make our way through this muck and mire.