21 days (part 2)

Completely and utterly taken aback. More and even larger nodules on the chest CT. I was scared. I looked at my husband and my children and felt that for the first time I was 1 day closer to dying. I tried to have a positive attitude, but it was just so much more than that. I was one day closer to my worst possible nightmare. Not getting to live to see my children grow up. Not growing old with my husband.

But there was the positive blasto antigen. Apparently, sometime, somewhere the was a fungus among us. It was just so hard to find a more concrete finding; the mildly positive result can be present in individuals without illness, so doctors were reluctant to call it blastomycosis. However, my husband theorized that I could have a disseminated (widespread) fungal infection. It would explain the lung nodules and bone necrosis. I had become greatly nauseated on the chemo medication. The antifungal that I was on made the situation worse, so I had been taking it sporadically in the first weeks of chemo. I was honest with my doctors about this. Infectious disease and hematology were in agreement that I could quit the antifungal medication because there was no overwhelming evidence that I had a fungal infection. I was off the antifungal medication during the time that I was most neutropenic (without an immune system). This would have given the fungus the opportunity to become strong and take over whatever it wanted. Blasto loves the lungs- and second it loves the pelvic bones. And blastomycosis can be a trigger agent for secondary HLH. There you have- a perfect storm. But try to convince the doctors of this- even when my pain began to improve on the antifungals in the hospital. The doctors scheduled another bronchoscopy to sample the new nodules. All histiocytes.

For some reason broncoscopies are particular miserable for me. I spiked higher temperatures that evening as well as more pain, rigors and chills. Once again my God did not forsake me. It is during these times that I truly feel that I am visited by angels. These are earthly angels, crossing my path for a reason. Late the following evening a chaplain visited me. Maria I think her name was. The following is a poem by Aaron Zeitlin she shared with me:

“Praise me said God, and I know that you will love me. Curse me says God and I know that you will love me. Praise me or curse me And I know that you will love me”

“Sing out my my Graces says God. Raise your fist against me and revile, says God. Sing out graces or revile. Reviling is also a kind of praise says God.”

“But if you sit fenced off in your apathy, says God. If you sit in “I don’t give a hang,” says God. If you sit and look at the stars and yawn; If you see suffering and don’t cry out; If you don’t praise and don’t revile; then I created you in vain, says God.”

I needed to hear that. The God that I had asked for forgiveness from, I felt not only loved me because I questioned him, but also because I cursed him. I needed that during those evenings; when you feel alone- you know that you are not.

The struggle is real, but so is God. 21 days later I went home. To struggle, to heal, to listen. Just breathe. A wonderful reminder, so difficult to follow. And sometimes you can only focus on the next breath and how to get to it. And it is in those moments that you can really hear God.

I took baby steps at getting better. Able to get to the bathroom without my walker. Able to eat breakfast with the family. Sometimes in bed by 6 p.m. Slowly able to drive, starting to get fuzz back on my head. Still running fever, still in pain. Scheduled for another bone marrow biopsy- nothing shows up but histiocytes. Sheets and sheets of them. But I was feeling better. Another CT scheduled.

The definition of insanity (at least in my book) is doing the same process expecting different results. We were doing the same thing; expecting different results. Well guess what- more of the same. The CT showed…. mixed results! Some resolving nodules, some new and worsening ones. Bones looked worse. “Do you have any shortness of breath? are you in pain?” “no. I feel much better…”  Was I caught in a Ground hog Day  scenario? When would it end? Dr. Yoda was at a loss. G.R.E.A.T. He wanted me to see a sub-specialist in Boston.  Ok. That’s the mark of a good doctor in my book- he knew his limitations and we had reached them. Off to Boston. How would we pay for all this? What would they say? I was feeling so much better…. what was going on? Hoping once again, that someone out there knew. That I wasn’t a unicorn among zebras.   IMG_6878




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