We are over half-way through this next cycle of chemo. Best of all, the chemo part is finished! Because of Kurt's residual disease on the last bone marrow biopsy, this is basically "Induction #2." The goal is still to get him into remission and to keep him there. The end goal is now stem-cell transplant after three more Hyper CVAD cycles. For this first cycle, much like the last induction, patients typically remain inpatient for the entire duration of the treatment. For Hyper-CVAD cycles that cycle is usually 21 days. We remain hopeful that if Kurt's counts recover quickly, they may be generous and let him go home early, but we aren't holding our breath!
With this cycle of chemo, the bulk of the treatment was administered the first 4 days. On day #11, he had a final treatment of vincristine and started another 4-day round of steroids. Now, it's just a waiting game for his counts to recover enough to have the next biopsy. Right now, his neutrophils (those beautiful infection fighting cells) are 0. We need them to come up to around 500 for biopsy and discharge. It's great that the cell counts drop--that means chemo is working! Now, we just need them to rebound. In order to help his counts come up, he is receiving a daily injection to help boost cell production.
This cycle of chemo was a little bit more rough than the first (as anticipated), but Kurt has really handled things so well. Big challenges this cycle have been a headache that is more positional in nature and some mild nausea/vomiting. The mystery headache has had everyone scratching their heads. It worsens when Kurt is sitting upright, but completely disappears when he is laying flat. The most likely cause is the spinal chemo. Spinal injections are notorious for headaches and chemo in that area can cause irritation and inflammation. However, being the tricky patient that he is, Kurt's headache didn't begin until almost 48 hours after the spinal injection, so we can't be sure that is the cause. He had some fluid on his ears, which has been treated with antibiotics, and has almost felt as though it was muscular in his neck too. Thankfully, his CT scan was perfectly clear and the headache seems to be growing less prevalent each day. In the future, the oncologists will administer some steroids with the spinal chemo to see if it will prevent this from happening. Massage therapy might also be stopping by. What a treat!
Last week, Kurt also had some nausea and vomiting one afternoon. I had gone down to try to meet a Door Dasher (our food was lost and never arrived--which Kurt said was God clearly knowing he wasn't going to be able to eat it!). I called up to the room to let him know and he told me he wasn't feeling well. By the time I got to the floor and rounded the corner, I could hear him. The nurses were talking--"Oh, that's Mr. Johnson." If you have ever been lucky enough to be around me when I have complained about Kurt's noisy vomiting, you'll know he could be heard clearly in the hall. We often have joked that he almost yells when he vomits. This loud vomiting trait seems to be hereditary, as Kurt's dad and brothers also demonstrate this wonderful quality. Shortly after we were married, Kurt got food poisoning during a trip to Seattle and I heard him vomit for the first time. Needless to say, I stood outside the bathroom door crying and asking if I should call 9-1-1. Now, I know what's up and quickly let the nurses know, "he's a loud puke-er." They agreed! Thankfully, it seems to have been brought on by an empty tummy (he napped through lunch after the spinal chemo that day) and, after a dose of meds, went on to eat a full dinner and has felt fine since. He joked about how loud he was and took it all in stride. "Welp, chemo is working" was one of his first sentiments.
It's so hard to be stuck in the hospital, watching the cars on the street below, students walking to class, seeing the football stadium fill (only to 25%) and empty...life going on outside of these walls. We can find joy in the stillness of it all though. I am thankful for this time together. It isn't what we would choose, but we have been able to laugh until we've cried at each other's silliness, watch movies together, have long conversations, laugh at the past, and plan for the future in the face of this huge mountain before us. We have a deep hope and a joy that cannot be disturbed by the ripples on the top of the water. I am not making light of what we are going through by any means. Some days are really hard--seeing our kids over Facetime with anxious faces, worn out eyes, missing them and "normal" days. We are grieving life that was, life without the word Leukemia in it. We are missing our sweet dogs we lost this year. We are trying to process this whirlwind diagnosis that literally turned things upside down overnight. While we laughed later over Kurt's loud vomiting, I stood outside his bathroom door, fist on the wall, crying over the suffering, heartsick for him. And yet, we find God with us in the midst of all this. We hear His gentle whispers. We see Him working for us, using the hands and feet of others to hold us up. I feel like Moses in desert when Aaron and Hur held up his hands. We are thankful for those holding up our hands during this battle. We couldn't do this alone.
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