"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.
Hi Jen. My heart goes out to you knowing that it is hard to endure the constant stress of battling leukemia. I can say I have heard parents with your perspective before, thinking that their child has a harder cancer. The only cancer that seems "easy" to me really is standard ALL, requiring only a monthly clinic visit, having beautiful odds, excellent support and a lot of freedom, even if it does go on for years. Others though, such as Tucker and frankly, nearly everyone else I've seen on the inpatient side, aren't quite so relatively "lucky". I'm sure that from some peoples' points of view, Cy having to be inpatient for 6 months straight seems like a relatively quick treatment, but I can assure you that living at Doernbecher like that is not the same as being allowed to leave for a good portion of that time. Comparing cases based on the calendar may not be all that helpful. And even though there are no plans for Cy or perhaps another transplant patient to have any further chemotherapy, radiation or transplant, he is by no means done, and will be affected for the rest of his life by the treatment and the limitations he must now live within because of it.
ReplyDeleteIf someone shares that they are "done" with treatment in just a few short months, I can tell you this: I have seen people celebrate their victory and I bask in it with them, never to see them on the inpatient side again, although that is from a 6 month perspective. I've seen families face the excruciating and threatening scenario of relapse. I have seen families face what will be months and months surgeries, weeks of radiation and chemotherapy together with dismal odds for their child. I know of children who have died in those six months. Being in for such a sustained time allowed me to be acquainted with many families and their unique stories, and to learn about the specifics of their child's cancers. If it helps you find comfort, I encourage you to read more about some of the other major childhood cancers - neuroblastoma, osteosarcoma, rhabdomyosarcoma, retinoblastoma, pinealoblastoma, medulloblastoma, T-cell ALL, and AML. I can tell you with confidence that nobody gets away from this beast in just a few months really. I hope you are not witness to the ravages and tragedies of others any more than you have to be, but if it brings you comfort, you might seek more information about these other cancers to help you grasp what most other families from the inpatient side must face.
My post is not to discount what others go through and I know with out a doubt that the battle truely is never "done". I guess I am referring more to not being eligible for a transplant as well as pumping chemo into my son. Seeing him sick,weak and hurting. I look forward to the days when Tucker doesn't have to go through that and pray that when it is done that it never comes back so that he never has to have chemotherapy again. I spent nearly the first four months of treatment with Tucker in the hospital with little more than 3-4 days a month out. It is very isolating but with out sounding harsh I sometimes feel like I would have rather been up there for 6 months straight and not do Chemo anymore than have to face another 18 months of it. It is all relative to each case, there really is no way for me to know if having the transplant would have been or worked out better than what we are going through now. That is why I struggle with my feelings. These children are true warriors, no ones fight should be discounted at all.
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