Alternate Endings

As a child growing up in the 1980's I, like many others my age, fell in love with reading.  Not because of school reading programs.  No, it was for a series of books called "Choose Your Own Adventure."  There was something magical about being the explorer in foreign pursuits or lands, knowing that in several pages you would need to make critical decisions and turn to the correlating pages that went with it. You could read the same book over and over and get a different ending each time. Your trajectory as the hero or heroine was not your friend's...it was all yours. Some choices made for victorious last pages and some...well, not so victorious.

I've thought about these books many times throughout my young cancer caregiver journey.  How the options we choose lead us to the next and the next and the next outcome.  Only, in the world of medicine, and art of oncology, the whole team of experts is along for the ride and making their guesses at what is best case scenario for my most loved person in the whole world.  Sure, we sign the consents. I look back on choices we have had to make...ones that led to complications or other impossible options that no one could have anticipated. Yet, in my heart, I would have made them again because at that moment it was all I could do with the time, emotion, and money I had to offer.

At age 36 I never thought I would have to put my husband, functional and wonderful before leukemia, in a nursing home, decide if there was hope for biological children, feed him, bathe him, watch him relearn to speak, haul around a wheelchair and walker, watch him struggle and want to die, wipe tears, among so many more things. Although caregiving has continued to transition as he regained skills, those days of diaper changes and lonely, sleepless nights, while his body was so toxic and he was psychotic, stay with a person. Just the other day at work, a coworker took a call from a person having to make decisions about a parent. It all came flooding back. Memories stick to me like glue as I navigate the duality in my life as it is for the time:  both a caregiver and wife...Advocate and friend.

It all makes me a crazy, ferocious, mama bear. And I make no apologies for fighting for him every inch of the way, even if unpopular. I will stand in the arena alone fighting if I have too. When I see him cry at clinic and tell the nurse he is thankful for me fighting, I know I've loved and lived to my fullest. No matter how uncomfortable it makes anyone else.

As a caregiver I am tired and task oriented. As a wife, I walk around with multiple alternate endings on my heart every day, just like those books.  I try to use reason and logic to help my husband make treatment and lifestyle elections that will hopefully give him the best verdict long term and in my battle to preserve our dreams. I sometimes think about life only in 3 days stretches, in terms of appointments and medications. I also think about life and what it may or may not look like in 365 days from today or in 5 or 15 years (the big mile markers for follow up). I think about how to function on 4 hours sleep and popcorn and diet coke on the bad days. I also think about death and how to survive a life without him, knowing the odds are against us but unable to truly imagine a house without him in it.  I forget he thinks about me too, now worried if I don't answer my phone because losing me, on top of cancer and wondering how he'd survive, is just as scary for him as it is for me.  We talk about plans and options in the event I die before him.  I think about the hope of good labs and maybe even a nap for me before working the night shift at work. I think about recovery and the new life that could spring forth from the ashes of the forest fire.  And everything in between.

The difference between my childhood choosings, in those fantasy reads, and nitty gritty, sobbing one moment, elation the next--the crazy life adventure that is happening now, is this:  there is no going back and getting another crack at the drama...and the story is dependent on so many people.  I can't leave the scene whenever it's grown too intense.  Others feel our stress for sure. But the story is every moment for us and we can't ignore it, take weeks to make decisions, or run off. I'm not saying I want people to stop living. Goodness, go out and live to the fullest!  Take every opportunity to live your best and love wide open. Be courageous in your choices. That's the exact thing we are trying to do.

Side note:  Yet the mama bear in me is so grow-lie these past weeks because I don't get a break from cancer and when people let my hubby down, don't call him, make decisions that affect him when he is already weakened, it tears me apart too.  And it's hard to wrap my heart around. The people drama of this journey will be the true scars that remain when it's all said and done. Whatever the outcome.

I've carried a fair amount of criticism on my shoulders lately for my feelings along the way, for being open about this process, from people so close that it hurts extra deep. If you are looking for a happy and calm mama bear from me, I can only assume you haven't had to walk and stand in the reality of death everyday. There is no one right way to undertake such a perilous, wonderful path.  No one way to feel or be or breathe. And at the end of this I will feel nothing but resolve because I know, in my heart, I have loved fiercely in spite of the doubts, fear, anger, hope, and questions. I never knew love or faith in such a raw way until cancer. And those two pieces to whatever ending we find, is what I hold to tightly.

To those that have said to me "just have faith:" lean in a little closer. You will see we are draped in faith each day. But faith without actions is not a living faith. Wil says he is living in faith every moment.  But it's not blind...he is fighting like hell alongside the prayer. We believe God calls us to do our part and surround ourselves with human healing hands that are divinely guided. Faith doesn't have to be passive to be true.

Thank you so terribly much to those people in our lives that "get it."  We nourish our souls on your kindness, strengthen ourselves through your encouragement. You are unsung heroes. Some day when I have energy and time, you will hear from me personally how much it meant. Just know it's not taken for granted.  As much as this life can sting, our supporters bandage us up every time so we can keep going.

The updates:
It's been a physically and emotionally draining two weeks for Wil's recovery and transplant planning.  3B recovery has been the worst. Hours and hours of blood transfusions to keep him going and platelets to keep him from bleeding it out!  His body is just more tired these days.  His DVT in his leg is slowing getting better but could take months to resolve. The swelling makes it hard to walk well, painful with each step still.

We've accepted the clinical trial, a family donor has been identified and accepted, and now we wait. Wil will have another bone marrow biopsy on Thursday afternoon to make sure the cancer is still controlled and he is ready for transplant. The insurance needs to sign off on their portion. The donor needs to get here and pass all the preliminary tests. We are aiming for the trial to start July 17th.

And then we will wait some more as the stem cells are frozen, sent away for 16 days to a lab, and manipulated to have a retrovirus attached (deactivated). Once those cells return back to UTSW, Wil will have the most intense round of chemo yet, along with radiation, to completely kill his immune system, leaving his body a clean slate for healthy cells to be transfused into him and hopefully grow (mid-August).

The coming 100 days post transplant will be the nail biters...as we wait and see if his body rejects the cells (called graph vs host disease or GvHD). This is all too common and also potentially life threatening. But here's the cool thing about this trial--those lab T cells with the retrovirus, should they get out of hand and attack Wil's tissues, the research drug can be used to activate a suicide switch and destroy only the cells causing issues, leaving the rest of his immune system alone. How cool is that?  Scary exciting. It could save his life. And help change the options for treatment for others in the future.

Because the process is going to take a few weeks to get going, Wil may need another round of chemo before the transplant round. Thursday's biopsy results and his doctor will decide. We want him as strong as possible for his month in the hospital during transplant. Yet we can't let the leukemia cells take off again. Such a balance.

So we wait while we continue to choose life at every page turn and in every way we can. We hope that we have picked well. Who doesn't want "victory?"  More than anything I've ever wanted, prolonging my life with Wil is my dream ending.  But it's knowing that the dragons slayed along the way, the leaning into our fears to take passionate steps out into the darkness, to loving the questions and truly liking the warrior within that is emerging...that is what makes us each the hero to our own stories, no matter what that last page will read.