March 2025, loud love, new insurance, no bouncing back

Hello dear beautiful friends who are in my heart constantly, even when you may not know it….. I feel your thunderous support, even when I am quiet.

It has been a while since my last love letter to you all, but not for lack of love. I suppose, as I said in my last, reluctant update, I have not wanted to bother you, burden you. Maybe because I am trying to figure out how to live, how to move forward, face the day-to-day challenges, stand and walk on my own. You have all been such willing members of my tribe, OUR tribe, but we are all, every one of us, going through so much.  I do not want you to feel I am taking your energy and love, your unending support and compassion, for granted. But the flip side, filling you in, holding you close, sharing our ups and down, ins and outs, our beautiful chacha dance that we seem to come back to continuously, HAS also given us the gift of connection, created more community, brought us together. I feel the great importance of the bond we have built, as we rally around each other, to lift each other up. The perk we all need: shared human experience. It is sometimes easier for this mama/caregiver to stay muted, particularly now, after more than 4 years of updates and filling you in, but I know my isolation is not a show of strength, it is an escape. Vulnerability can feel like failure and most certainly weakness, especially for such a long period of time…… even if Brene Brown tells me it is not. So, the last couple of months I have been quiet, trying to sail solo, but today I reach out and open my heart.

Recently it seems we have been through so many more iterations and evolutions of this “cancer” and “result-of-cancer” life.  I almost wrote “post” cancer, but even for this very optimistic girl, “post” cancer sounds like we are done. Like it is over. It is not. I think in the case of Michael, it will never be “post”. What I always say: we cannot bounce back. Cancer and its effects will always be part of us. There is no going back. But as you know, that leaves tremendous space for bouncing forward. For growing. For adapting and becoming more.  Michael is getting stronger. With the help of medications and natural remedies, he has gained a bit of weight and at long last, more muscle and might! Even with the right supplements and stretches, he experiences daily bouts of muscle cramping, most likely from GVHD. A pesky side effect he will gladly live with in exchange for working out again. He loves going to the gym, even if he cannot pull up or pull down as he did before cancer. It makes him feel like a part of society, I think. Lifting weights, even light, is something he never thought he would do again. And there he is, one more time, defying the odds. Pale skin. Thinner than before. Scars and skin discoloration from cancer, high doses of steroids, and skin GVHD, are on display on his bare arms and shoulders when he wears his cut off muscle tees. Obvious in the bright overhead lights for the other gym rats to see and perhaps ponder momentarily, but who cares? The other gym goers are pretty wrapped up in themselves, keeping the sideways glances at Michael minimal. Sometimes I notice, but I brush it off. As long as Michael is ok, I am more than ok.

We are still waiting to get a hold of a newly FDA approved Graft Versus Host Disease infusion that will hopefully start in the coming weeks. Axatilimab. It would be every other week for 3 months. See how it goes. Michael’s very optimistic GVHD doctor has him on the hospital schedule to receive the first dose on April 9th. Our fingers are crossed. So are our toes, arms, legs, hands, eyes, and anything else that might possibly bring good luck. His chronic GVHD has become more active recently, especially skin and liver, making the new infusion a bit more pressing. Not life threatening today, but not to be ignored, either. This month we did get an untimely wrench thrown into the mix when Michael lost his Medicare health coverage. A drawn-out story that has probably cost me a hundred hours on the phone (nope, I’m not exaggerating). At long last I found a new policy for Michael, yet I cannot seem to let go of my deep fear that the new insurance will be more challenging when it comes to approving the latest infusions and treatments. They have already denied one of his necessary GVHD meds, but thankfully there are grants and financial assistance I am learning to navigate. Another new “momcologist” expertise I can add to my resume. Master of filling out financial forms. Not a skill I ever expected or wanted to learn, but necessity is a great motivator. I do hold hope, as I trust the universe, confident it will work out. It always does, right? The worries that we think are the end of the world, rarely are. The sun keeps on coming up. Giving me another chance to be better. To adapt. Learn. My spiritual journey in this life has certainly included lessons on patience and keeping my inner peace amid turmoil! I am not always succeeding, FYI. But I am working on it as a daily practice. Ommmm…..

In the coming weeks Michael has appointments with his pulmonologist following up on his lung function, the specialized GVHD dermatologist and ophthalmologist, and soon a new nephrologist, checking in on his annoying kidney function that continues to vex his main doctor. Are you drinking enough, Michael? Yes, Dr. Wang. About a zillion liters a day. Peeing about a zillion times, too.

As for me, the sweet children’s story I wrote about Michael’s diagnosis and dancing on the wave of getting a cancer diagnosis is coming together beautifully. I’ve also recently taken on the project of writing a caregiver manual, not sure if it is for me or for others. Don’t we teach best what we need to learn? I think I heard that somewhere. In that case, I should be a really good teacher, because I am learning a lot and still NEED to learn a lot.

As we wait for Michael to be able to receive the infusion, he keeps on with ECP, although less frequently. This gives him time to get in the ocean. Surf. Do more social media. Figure out our path. We plow forward with our little podcast, our advocacy, and we are asked to speak more often at cancer events. We continue to volunteer at the hospitals and for so many beautiful foundations. We are hoping, needing, more paid work, but trusting that the more good we do, the more we give, the better the world will be. That is good enough for me. It is always my purpose, make the world a little better. And then I know we will be able to dance on the waves.  Thank you for being there for us, praying for us, chanting, singing, dancing, and mostly loving us.

Even if it seems I am quiet, know that my love is loud..