The Chacha after the Knee Replacement

Update January, 2024

To my dear, beautiful, friends and family who I appreciate, cherish and cannot imagine what I would do without your unending-love-and-support,

It is time to fill you in yet again, those of you who are still reading these messages…..January was another month of our chacha, another month of forward and back, dancing with progress and pain, continuing to focus on the forward movement, while not denying the past. Feeling the peace that comes with living in the present moment, but also allowing our heart aches to be part of who we are, who we have become. We try not to dwell on what Michael, this mama, and our little family of 4, have been through these last few years, but it lives inside of us. There are also the imprints that show on the outside. For Michael, in the form of scars and marks, for me, it is more subtle, the tired eyes, the new gray hair, deeper lines on my face. PTSD is real, it appears unannounced, jumps out from behind the shadows, surprises us just when we start to relax, to think we are ok. The truth is, at moments we are overwhelmed with the life we have been living, the life we lost, but for the most part, 99.99 percent of the time, we are amazed at how far we have come, how much we have gained, how much we now possess and can give back, how much we continue to laugh, how we keep getting back up, and how fulfilling life is. Even after cancer. Even after a BMT. Even while living with a chronic disease caused by treatment. Eckhart Tolle is one of my favorites right now. I have been leaning into his advice. He says so beautifully, “The primary cause of unhappiness is never the situation but your thoughts about it.” So very true. Similar to our staple philosophy: It is not what happens to you, but how you react. But of course, intrusive thoughts pop up. Uninvited. We acknowledge them, and (try to) move on. Cry to make space for joy. This month we cried. And we were joyful. 

The facts: January was a month of hospital appointments galore. As usual, Michael is continuing the bi-weekly ECP treatments for his chronic GVHD. At one time it was a bit traumatic to see the huge needles, to stay attached to the apheresis machine for hours, to see his blood flow out, get treated, and then return to his body, but it is now part of our normal routine. The nurses have made it not exactly “fun”, but honestly enjoyable to be there, sharing time and healing with them. Added to ECP this month was the total knee replacement surgery, scheduled for January 30th. That date led to the countless pre-op consultations for the surgery in the form of cardiologist, pulmonologist, PCP, GVHD doctor, CT scans, and seemingly endless labs. Not to mention meetings with the anesthesiologist, the orthopedic surgeon himself, and his nurse practitioner. Then the actual surgery, January 30th. I think a part of me was in denial, and did not quite believe Michael would make it past all the hurdles in the shape of the many doctor’s signing off on the surgery. But one by one, all the boxes were checked and he was cleared to have his left knee replaced the last Tuesday of January. We went to bed on the night of January 29th feeling like we were living someone else’s destiny. A knee replacement. Caused by AVN. A result of cancer and GVHD treatment. But this was not a life threatening surgery. It was intended to improve quality of life. The surgeon told us that Michael will never run or play basketball again, but maybe one day he will straighten his leg all the way. Bend it without grimacing. Surf. Of course it will not change the chronic GVHD, but it does add a few options for range of motion that he has not experienced in over 2 and a half years. 

On paper, a knee replacement is most often outpatient. We were told that because of Michael’s  health issues we would probably stay overnight in the hospital. Healing with chronic GVHD is a little slower, a little more complicated. And it has been slow and complex. Maybe it is not even the GVHD making this more challenging. Maybe his body has just been through so much, it was not quite prepared for this new trauma. Either way, the one night stay at the hospital turned into a four day admission. But we are home. We knew it would be a painful surgery, but I am not sure we were quite prepared for this level of constant agony. Michael says his pain tolerance must be low. I think his body is just tired. His mind, too. Not complaining, but the fact is, in 3.5 years he has suffered so much physical pain. So much emotional injury. My heart breaks. The surgery was a success from the standpoint of the surgeon. Michael had so much necrosis in his femur and tibia that they had to shave a lot of bone, then fill it with titanium. The surgeon was able to save the knee cap, which was welcome news. The resident explained that it was as if Michael had his femur and tibia broken, cracked open, sandpapered down, stuffed full of titanium, then glued back together. We keep hearing, now that the surgery is over, that knee replacements are up there with the most painful of recoveries. We agree. But then, as always, the beauty is there, too. The gold in the cracks. In his recent social media posts Michael has stressed that it is not how many times you fall down, but how many times you get back up. I think he is reminding himself not to give up or give in. He is sharing the lesson he needs right now. Getting back up, even when it feels impossible. Pain is temporary. But the beauty is everlasting.

January also brought this mama a few knockdowns. Insurance refusals. Pharmaceutical denials. Searches for solutions to prior authorizations for medications. Loss of Michael’s secondary insurance. But again, Eckhart Tolle is reminding me that right now, we are ok. Alive. Continuing our support groups. Expanding our reach to embrace even more who need hope. Expressing our love and perspective on social media. And so, at this moment, all is well. Writing on my computer. Listening to Michael figure out how to play the guitar with one leg propped up and wrapped in ice. Sharing my inner thoughts with you. The humans I cherish and love. We are grateful for “now”.