That is what my kiddos call the baby hair growing back on my head. It has been almost two weeks of growth now and my scalp is no longer ghost pale as if I were wearing a tight, white speedo swim cap. When I ask the doctors if it will all grow back, they answer, “Probably, but maybe not. We will see.” That is a pretty common answer from my doctors. Apparently, we are in somewhat uncharted waters.
If you are reading this you are probably aware of and have been walking with me these past five years in a battle with CLL17P, a rare incurable – at least not yet – leukemia. When I say that you have been walking with me and my family, I mean that you have truly been coming alongside us rather than merely following our story and observing from afar. That means a lot because when cancer shows up, it is a journey no one should face alone. And we haven't. Although, there were weeks when I couldn't even pick up my cell phone, let alone get back to folks – please accept my apology if I wasn't very responsive to so many well-wishers. I hope you understand. I can't begin to tell you all the prayers that have been lifted up on our behalf these last four months since the bone marrow transplant. I am on so many prayer chains that The Lord must be tired of hearing my name. I am quite sure I would not be here without every one of them, and I am grateful.
Here is the update from the last few months:
Last summer as the latest miracle drug I was taking began to fail, our doctors said that the next option was a bone marrow transplant (BMT). I asked quite a few folks what the experience of a BMT was like. Doctors and nurses offered the same response; a pause, a shift in their gaze to the floor, and with a mumble or whisper, almost unanimously: it is hard. I even spoke with two survivors of a transplant and heard the same thing with the pain and trauma in their voices to support the claim.
Hard it was. Hard in ways I cannot yet describe. I am not sure I ever will, or even want to. These past few weeks since I was released I have sat down to share this update so many times, but there just weren't any words that came out that made sense. It worried me, my lack of ability to describe these past months. I remember that at the worst of times, it seems I only had one thought, I could only feel one feeling, and I am not in a hurry to ever revisit them. The physical trauma was hard, but now unexpectedly the mental and emotional wake seems more difficult.
It was a 90-day cocoon of care at the BMT clinic and hospital. It affected me deeply. I met and was cared for by at least twenty fully certified angels from heaven at the Duke BMT Clinic. So, last week when the charge nurse, the PA, and that day’s nurse gathered to hand me my paperwork and offer congratulations for ‘graduating’ that afternoon, I simply began to weep. Then I cried. Hard. I embraced them sobbing into their shoulder like I was a little boy in his mom's arms. I didn’t expect that. It undid me for a while, it was that intense. The care, encouragement, and love that those people shared touched me, forever. I could never appropriately thank them.
I have taken tests for PTSD, seen specialists in talk therapy, and have taken medication for anxiety and depression. But it was just last week when my palliative care doctor smiled and said, “I am starting to see some PTG," I thought, oh here we go, another problem, “what is PTG?” I asked. “Post-Traumatic Growth,” he replied. I teared up. “Doc, I want more of that!” Clearly I am healing daily.
So, in light of these last few months and all of their transpiring events, how am I different? Well, it is not that I see the world in a different light, but rather, I feel the world differently. I am sensitive and empathetic to suffering in a deep and new way. And it is far too painful. What happened during the BMT changed me and I am still witnessing the details of that change as they unfold. Many things emotionally associated with those three months now cause me darkness. The cover that was on my bed, the TV, radio stations and songs I listened to, even the sweatpants I lived in. And there are moments where I just can’t. I can't even think some of the same thoughts. I am learning new patterns to protect myself. I feel fragile. And while at some point earlier in my life I might have resented all of this, I am now embracing it and letting it do its work in me, have its way.
I continue to take almost 25 pills a day sorted into an AM/PM box weekly by Kate, my superhero wife, but at least that’s down from over 35 per day a month ago. Physically there are lingering issues to deal with; shaky hands, nausea, incontinence, constant bad taste, little appetite, and neuropathic pain in my arms and feet that we hope eventually disappears. Maybe, Maybe not. I am still sleeping in a bedroom downstairs, isolated from my wife and kids. This arrangement was originally designed to keep me away from any germs, but now it has evolved into a matter of getting my sleep before the kiddos crash into the bedroom much earlier than my body needs. I cannot wait to sleep upstairs again soon. It all will take time. I guess the saying on my mom’s refrigerator magnet was right: patience IS a virtue!
I wear diapers some days and some nights. I know babies and really old men do, but at 56 I am hardly old! Then again, vanity is long gone. I have lost 70 pounds, down from 265 to 195, and when I look in the mirror I sometimes just stare, questioning whether the reflection is really me. My bald head was the adjustment that took me the longest to come around to. I think I look like the character of Bull, the court security guard in the popular sitcom Night Court in the 80’s, but I am slowly getting used to the new image I see. My clothes don’t fit, especially my pants. My wife and older daughters hooked me up with some new stylish ones for Christmas. They are OK, a little too tight and skinny for my liking, but I wear them. They still hate my fanny pack, but it is just too efficient, and I have to keep some sense of normalcy, right?
As happy and relieved as we are to be here, post 100 days, alive and seeing stable and mostly normal blood counts, the reality is that we cannot get ahead of ourselves. We are not out of the woods yet. The next post-BMT mile markers on this journey are six months (May 1) and one year (Oct. 30). That is when the doctors say we can take a deep breath because the risks of infection are greatly reduced if the transplant lasts that long. But until then, we still fear every back pain, every headache and especially the nightly chills that come, praying none of them lead to a fever and a trip to the emergency room. That would likely begin a new battle with lingering graft versus host disease that has shown up to fight. But even that we can deal with. I only have the days the Lord gives me. Not one day more, nor one day less. I have heard it said, “I do not know what my future holds, but I know who holds my future.” That is true! I do!
I won't be driving for a few more months until they stop the powerful suppressant drug I am taking. My transplant doctor said that they did not want me to be the boy in the bubble, and yet I shouldn’t travel on planes, trains, buses or long trips until 2020 because of the continued escalated risk of infection from air born germs beyond our control. Oh, and no more sun! None. It is all about sunblock, sunscreen, long pants, long sleeves, and big rim beach hats these days. Your skin is the body’s largest organ, and the doctors remind me weekly that I am sporting the immune system of a four-month-old infant. That is an easy concept to vividly wrap my head around because my youngest son Leo was a preemie NICU baby for four and a half months, and when they finally took him out of that plastic incubator crib and let us bring him home, we darn sure weren’t going to put his fragile system in jeopardy that first year. So, I cannot ask my body to use its limited resources to fight off sun exposure when I can do that for myself. Because the plan throughout this ordeal was to do whatever is necessary to enjoy many more Christmases spent with family gathered together, and nothing is worth the risk of jeopardizing that.
I realize that this is a longer update than normal, but because it has been quite a while with so much happening, I wanted to make the effects of your prayers very clear and encourage you to not stop now. I want to thank you all for walking alongside us in this story. Your prayers and love reach us and they heal me. I look forward to sharing more from my heart when the words come to me. In the meantime, I am just happy to be here.
Yes, and Amen. Yes, and Amen.