As Day 100 gradually nears, we face yet another milestone that we’ve been anticipating. This is a moment where we must remember to pause and honor the bitter-sweetness of the adventure thus far. As a reminder this is not the end. It is only one of many mountains we have yet to climb for mom and her team.
(One of our favorite set of mountains out in Vermont and New York on Lake Champlain)
A problem for me over the last few months has been, I ONLY prepared for getting mom to transplant. All of my research and preparations, were only for how to get her TO transplant (many times it was hard to imagine we would ever be post-transplant).
Then the shock went through and she made it there!!! And then she made it past Day 30, then Day 60, and now is on to Day 100!!! It's hard to even remember all of the experiences we have been through but looking back it still makes my heartache at all the of battles we have come through. The infections, Graft Verses Host Disease (GVHD), mom's ejection fraction/heart issues, issues with nausea, sleep, fluid retention, kidney functions, appetite...and that's just naming a few!
Like I've said my experience as a caregiver of a post-transplant survivor is one that I never expected to get to. There were times when I was told to prepare myself for the worst and to know that she might only have months if transplant was not possible. Now it is and we our heads are still spinning as time continues to pass! More hills have come up in front of us: an obnoxious virus, some GVHD rashes that have come and gone (and reappear), fatigue that comes and goes, nausea seems to be an ever present companion for her, and her daily medication rotation.
But now we are moving forward. Mom's Day 100 serves as a landmark, though not the finish line (this was my naive assumption previously). For most Bone Marrow Transplant patients' Day 100 is when you would transition from the BMT crisis site to your local physician for continued monitoring and close observation-Mom just happens to have both sites be at the same hospital/clinic. She will not be considered "out of the woods" until 18 - 24 months after the transplant. Her next landmarks after this point will be at her 1 Year post-BMT and 5 Years post-BMT.
Day 100 will be mom's second Bone Marrow Biopsy (since transplant). It will be the time when the doctor's are actually able to see whether or not the stem cells have engrafted and are successfully growing a new immune system for her and if she is in remission (still). They will also be closely watching to see if any other side effects/risks posed to her in the future (infections, GVHD, relapse/a re-occurrence of the cancer, or even rejection of the transplant) actually occur.
As I have said this is not the end it is only the beginning of mom's recovery to full health. She will slowly continue to wean off medications, clinic visits, and over time volunteers. After having 24/7 volunteers around her the thought of her having time "alone" is beginning to make us both a little nervous and saddened. As Mom said the other night "we have only served part of our 'tour of duty,' the war is not over yet."
So for all of those who have gotten us this far, those who have given of their time, energy and heart. Those who have frequently laughed and occasionally cried with us. Those who have been the heart beat of our journey. The ones who carried us when we weren't sure we would be able to face the next mountain. YOU ARE AMAZING!!!!! Please know that you are the ONLY reason we have gotten as far as we have! Our gratitude, appreciation and unending love for all of you is beyond measure! I only hope you know how much you have inspire us and those around you!
As we transition into the next phase of the adventure I will continue to tweak Lotsa Helping Hands to allow for continued meals, visitors, and rides to clinic for mom as it will still be some time before she is able to establish her "new normal". We are also beginning to look for support of a fundraising event!! Ideas are flowing, creativity and organization are beginning to be established but if you find yourself wanting to help PLEASE email me: wolkate@bethel.edu. This adventure has been a long one and the costs are not minimal by any measure, so please let us know if you are able to help! :)
On a side note: I apologize for not being able to sign up for as many shifts as I have in the past. Mom and I are both going through post-transplant "burn out". Which is the emotional exhaustion that people post crisis face. After going for months on end in "Surviving Mode" one eventually must crash and at that time all the emotions that have been repressed or stuffed (often unconsciously) then rise to the surface. So both of us are working on self care and emotional maintenance at this time. So please be gentle with our fragile emotional state at this time. Thanks again everyone for keeping us afloat!
Here's a lovely summary of the adventure from another BMT Leukemia survivor I stumbled upon today:
http://kenzibmt.blogspot.com/2011/01/day-100.html
