This past Sunday we had a great time checking a few things off the old "must do" prior to post transplant list. In truth, we are gearing up for more life changes that will begin soon when Wil admits and it will continue for a year or more. Coming towards 9 months of treatment already, much of which has gone in some unexpected ways, it's hard to believe I am writing these words: more life changes.
Transplant is the potential cure, right? The no more chemo and brand new immune system treatment (did you know that if your donor has a different blood type you actually CHANGE to their blood type? That's how it goes...they wipe you of everything so a new immune system from healthy cells can grow), right? Yes, we hope so! Getting there will be days, weeks, months, and maybe years before we have a more "normal" life again. If there is such a thing after leukemia!
So on Wil's list first, among other outings--see a movie at the drive-in. So we loaded the car with pillows and blankets and lawn chairs, picked up a niece and nephew, and headed off to see the Earth to Echo/How to Train Your Dragon 2 double feature. What an amazing night! I have to admit, I was not looking forward to the Texas heat and had agreed for Wil's sake, but the gentle breeze, the 20 "I love you's" from the kids, the smiles and excitement...it made for a carefree night. Good for the soul. And in the dark, under the Texas night sky, by the light of animation, bellies full of sugar and junk, complete with bugs and dirt...Wil leaned in and whispered in my ear, "I'm really glad we got to do this." Simple. Just like my guy. No guarantees we will have another night like this...not in the next 6-12 months for sure, honestly who knows the future anyway. So we savored the night, knowing these experiences, all of life, feels so sacred lately.
There are definitely not enough days left to fit in all the good immune system fun we'd like. But we are making the most if it in between the prep appointments for transplant.
First off the list, the insurance has approved Wil's participation in the trial!! It took a bit of clarification and extra contact with the doctor, but ultimately it is a GO on that end. The RN transplant coordinator has been in many meetings with the pharmaceutical company as well. It's nice knowing these pieces won't get in the way of the medical procedures. There are so many extra moving parts being a part of a clinical trial. We are so blessed and excited to have this opportunity though!
Last week Wil had a PET scan. This scan requires a radioactive dye with glucose to be injected (from my basic understanding). If there are cancer cells, they feed on the glucose and will light up on the scan. No surprises at all with the results...the lesion on his back is still there but not active and so it's not an issue at this point. They were also looking to make sure there were no areas that lit up as indicators of cancer elsewhee in his body. He's in the clear! All in all unremarkable.
Thursday Wil had to carry around the "jug of shame," as I joke because people always look embarrassed to have it at clinic, to collect a 24 hour sample of urine, which he returned on Friday. This was to look at kidney function. Results are still pending but we are not expecting anything out of the ordinary.
Yesterday, Friday, was an all day clinic marathon. Wil had a pulmonary function test in the morning, followed by blood work at the clinic, meetings with the transplant coordinator and research department, a psychosocial by the clinic social worker, EKG, and a chest X-ray. It was a long and tiring day, on 3 hours of sleep for me since I worked the night before, multiple buildings and valet parking, but SO worth it because we are now nearing the end of the the pre-trial tests. This coming Monday he will have labs again and an ECHO of his heart. All of these tests are for baselines. Transplant, although a possible cure, is not for the faint of heart and can have many twists and turns and complications. Expecting this, they want a great snapshot of all main systems pretransplant.
After Monday, we sit tight with only weekly blood work until the donor cells are manipulated in the Houston pharmaceutical lab and sent back to UTSW. Close to their arrival back in Dallas, Wil will get "mapped" for the total body radiation he will receive during his pretransplant days at the hospital. His admit day could be anywhere from August 5-13 depending on the donation arrival time. Nervous excitement.
I, myself, have been struggling with the questions that arise from hurt, the burden of things unexplainable. I think Wil has been too, but I will speak for me alone right now. The knowledge that, as much as I hope people can understand our intentions that, our very needed encapsulation to survive this next leg, we may hurt some we care. We talk a lot about this lately. The staff at UTSW tell us, this is the time to be inward with your energy. Most things, and some relationships, have to be back seat priority. They tell us in a year or so Wil might have energy for more. But right now, nothing is more important than conserving all the energy we have left for making it through transplant and 100 days and then 6 months and then 1-2 years post transplant (the mile markers, so to speak).
We have never said our feelings were any more important than anyone else's. Or that others should feel any one way. What we hope is that the people who love us...the ones who want the best for us...will understand our enveloped life is not meant as anything other than to protect and preserve Wil's life and fight. We hope they will take time for empathy towards us in that regard. Validation and love don't require agreement. Just understanding.
Lately I feel so angry at times and seem to get drawn into unnecessary drama I would not usually be tempted by. I walk to edge some days between a heart overflowing with love and a mind filled with useless worry and frustration. I realize that, unless you are in our shoes, you might not know how to respond. I try to find compassion, I'm just weary. We are under the greatest stress and journey of our life...please know we also don't know how to gracefully respond sometimes. So we do our best and hope people see the heart center of our intentions. I just feel so...restive this week. So much is out of our control. And I've never been great at patiently waiting.
I have the words, "Love life's questions" on my cube wall at work. I know in my head that this is a journey best walked in a spirit of process vs goals. It's just so hard when you want your most precious person to live and not be in pain anymore. It makes you want all the answers upfront to try an prepare. If only...
I just want to cover Wil in a million layers of love now, free from stress and drama. I hope you all will help me in this plan to wrap him up in positive energy...envelop him in prayers...make his emotional load as light as possible. I hope everyone around him, in his many circles of family and friends, and even strangers, will join me in the effort. Feel whatever you need to feel, but please process it outside of your relationship with him. Support each other if you are worried, angry, fearful, etc. and then send him all the positive regard you have available.
If you know him, you know he struggles to not take responsibility for EVERYTHING and everyone he loves. When we met with the social worker, Wil talked more about everyone else in his life than himself. The social worker gently told Wil to decide carefully how he spends energy. He said Wil needs to be selfish right now for the sake of beating the odds. For Wil, this means all his energy goes toward building a new immune system.
And then the social worker looked at me. I'm supposed to conserve my energy too. For me, to carry on the life tasks solo while caregiving. Wil won't be able to clean house, do the yard, take out trash, care for the animals, etc. I will need to keep up on all of that while still working 2 jobs, cooking from scratch each day with all the dietary restrictions, taking him to more appts then before, and cheering him on.
So please know, we still love all of you, but we can't spend energy on other people's feelings right now. I know that may sound harsh. But this is life and death stuff and this is our new reality.
I've been reading works by Rainer Maria Rilke this week. What an inspiring challenge to my anger and worry about people and how life will shape up in the coming year. There are really too many great quotes...I think I could highlight most of his writing. This one, hit home:
"How should we be able to forget those ancient myths that are at the beginning of all peoples, the myths about dragons that at the last moment turn into princesses; perhaps all the dragons of our lives are princesses who are only waiting to see us once beautiful and brave. Perhaps everything terrible is in it's deepest being something helpless that wants help from us. So you must not be frightened if a sadness rises up before you larger than any you have ever seen; if a restiveness, like light and cloudshadows, passes over your hands and over all you do. You must think that something is happening with you, that life has not forgotten you, that it holds you in its hand; it will not let you fall. Why do you want to shut out of your life any uneasiness, any miseries, or any depressions? For after all, you do know what work these conditions are doing inside you."
If asking for no drama is too much for folks, distance is OK. In time, if all goes well, we will be back to supporting others again and able to let in the full array of feelings from you all. We will unwrap again eventually, I promise. Life has definitely not forgotten us these days. Our love and marriage has grown in ways it could never have without cancer. We hope you will still stay in contact and keep cheering us on too, we need your presence near and far, to feel we are in your hands for a little while longer too. So many of you have blessed us in ways we didn't expect already.
We hope you understand the greater need though--only positive energy flowing our way can be accepted at this time. If it's not love and light, we can't invest energy into it right now. Why? Because we have what seems like mountainous terrain to cover in the fight yet and this leg comes at a time we are already low on energy....because we carry with us heavy loads of our own feelings already. It will be all we can muster to just deal with our own experiences alongside the actual physical exhaustion we are sure to meet this year. And because above all else, Wil says, "I want to live dammit. That's all I can handle right now."
As his wife, friend, advocate, I hope you'll let him do just that--focus on him, and him only.
Much love. Much light.
The picture of the four of you at the movies with Wil's smile is priceless! That shows him in his true light. I think of you both often (if from afar), and you are ALWAYS in my happy thoughts and prayers. =)
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