It's been a few days, but I think tonight's blog post title says it as best and most simply as needed: Home. Wil is...home!
After 79 days since admit, 2 stem cell transplants, a virus, assumed GvHD...after one week ago thinking he would be moved to ICU for a few days...not to mention the combined total 149 days on BMT since November 13, 2013 and 154 days at UTSW St. Paul and 22 days at a SNF...Whew! Wil is...home. And for good we hope!
Wil discharged Thursday. We said our goodbyes to staff that have meant the world to us, who have held us together day after day when we were close to falling apart. Gosh, there is no place Wil would rather be than home...there is no place I'd rather have him be...but parting from 8th floor was a sweet sorrow indeed. It makes my heart full to see smiles and tears and to hear a few echo what we feel inside--our commitment is strong, our love is fierce, inspite of this bumpy road. We had a great marraige all along and B.C. But there were so many moments of circumstances crushing us into pieces...nights had I not blogged I would have lost from my memory into a sea of blackness...and their help, each one on that floor we called home for so many days...their encouragement, spirit, support, and most of all validation, has been super glue for the soul. For many other non-medical reasons, we could have not made it to now without them. BMT is where I was always seen and loved on; when the outside world felt cold and out of touch, I would breathe a sigh of relief walking on to the unit, a place where I needed no explanations, had to give no updates, and could just be still. (Those on the outside have played such a special role too, although very different. There is just something unique about being on a locked unit full of patients, caregivers, and staff who understand the journey forwards and back...and who can nod, smile, or tear, sharing the experience without any words needed).
So it was high-fives and hugs all around as we got ready to leave. All morning he had been so anxious, but as the time came to leave, he started to say, "I just can't believe it. I didn't know if it would ever happen. I'm really going home." Disbelief.
Wil didn't have to wait on transport...some of the staff wanted to personally take him down to the car. As his face hit the fall breeze at the door, his fist went to the sky. Freedom. Neither of us cried until we drove away, waved at UTSW St. Paul, a hospital that will soon close and be torn down as the new one opens next month. How do you wrap up, wrap around the idea of a place you spent over 22 weeks of your year being done? And soon cease to exist? It's not the building that made the experience, it's the people, and we will look forward to visiting the unit in their new home, when Wil is walking well, feeling well, and getting on with life after cancer. It's just a strange feeling to ride the elevator down, walk to hall, knowing, grieving, yet hoping, you will never see those walls again.
Re-entry into life is easier said then done. Wil is still in shock. Still weak, brain connections slow and interesting some times. His body has been through so much. Emotionally I am amazed at how well he has done. Home is what he has been dreaming of for about 50 days. Home is also strange. Life has continued on despite his absence. While I have not been home a lot myself, I forget I decided to change the placement of the garbage can, hang a new picture, or reorganize the dresser. I forget that even in my limited time at home I have been there almost every day. I have no idea what it would feel like to be away for 79 days straight or what it would feel like to suddenly be back. My life has been interrupted, but not as much as his.
Working in mental health affords me varied perspectives from the interactions I have with clients. I am struck by how similar some of Wil's statements and reactions are about the last few days to people who have to re-enter life after extended travel, war, or disaster. His numbness, shock, sadness, fear, helplessness, sleeplessness, vivid dreams, and sometimes lingering scary memories from the past year are real, even with the excitment and happiness that comes with being home. I guess it makes sense in some part, he has had his own battle and trauma, his own injuries to body, mind, and spirit. He is resilient. Yes, he is ready to be home. But we are definitely in a period of readjustment at our house.
And for me...life has continued on without him there. Yes, I saw him nearly every day of his admission, but I had a whole life, as sad and tiring and scary as it sometimes was, outside of the hospital too. I feel good about being able to hack it on my own. I have wanted, every step of the way to have my partner back to help out. It gets hard though as Wil wants to now assess my driving skills, ask about bills, question where I have been taking the cars for service, when I get to bed, if I ate dinner, etc. And I so want him involved and caring...eventually. It will take some time on that end too. I would be lying if I didn't say it is hard for both us. I am in such caregiver mode most of the day.
Yesterday in clinic we had wonderful news. Counts were holding strong and some better than they were at discharge! The results of the sigmoidoscopy were negative for the GI CMV (virus) and everything was normal. The assumed GvHD was already under control from the steriods. AND...the DNA blood work revealed that Wil is 95% donor now...no change in blood type yet, but that will be on its way! No blood transfusions needed, no appointment until next Tuesday! Despite rising counts, we are reminded that he has a severely compromised immune system. No immunities anymore to anything. Brand new and very young. It will take time to rebuild, but it IS rebuilding!
As Wil high fived his doctor, in true Wil-ness, "think-about-everyone-else," he asked if others in the original trial had had better luck. Yes, some had engrafted well, but there was one other local failure to graft who was too compromised and died before another transplant. To say that puts it all in persepective? Oh yes. No matter where we are or have come from or how far it feels like we have to go, we know we are blessed and that Wil is my little wonder hubby. My outlier. We are ordinary, but oh-so terribly lucky. As people started posting their daily "thankfulness" lists today, I knew in my heart if I took the challenge I would get very boring because each entry would just say: "I am thankful for this day and everyone in it."
(Halloween clinic visit with the best treat ever--good news from Dr. V!)
I love him now more than ever, have I said it often enough? Wil, my sweets, you are my home. The GPS location of your bed doesn't determine anything but global coordinates. But it does feel so much better to have my heart's home laying next to me in bed each night.
This year has held infinite splendor. Life has just continued to dramatically change. Again. And again. My introvert is used to someone being there for him every moment and wants me in his sight at all times. The extrovert that I am is used to being mostly alone and deeply missing just being a plain old wife. Now comes the transition when we combine, consolidate, and find new consensus. This next chapter is just beginning. Our new life.
I have no doubt we will come out better than ever. We somehow learned to acknowledge and celebrate the miracles every chance we have had. What we know more than ever is that there is no time to wait on some grand finale or goal. If we had done that we would have missed all the itty bitty brilliancy along the way--the people, the joy learned in the midst of sorrow, the greater connection to the suffering experienced by all people before, during, and after our little blip of an adventure. I'm really proud that we haven't missed all of that even if, sometimes, the wise Universe has granted us painful do-overs to get the message. I'm not so concerned about what tomorrow brings right now as long as it's another chance at this crazy wonderful.
Much love.
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