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Tag Archives: Life on hold

The Monster Wakes UP

28 Sunday Nov 2021

Posted by Ann Kilter in cancer, Uncategorized

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cancer, Life on hold, myelofibrosis

Five years ago, Ralph received a diagnosis of a bone marrow cancer called myelofibrosis. His hematologist/oncologist told us the only cure was a bone marrow transplant from a donor. She started him on infusion chemo the very next week after the diagnosis and set my husband up for an evaluation at the University of Michigan Bone Marrow Transplant Program a month later.

In the meanwhile, due to my research and materials we were given, I realized that our 100 year old home would be impossible to make into a place where he could avoid infections. Furthermore, he didn’t have the strength to take care of things around the house, and I didn’t have time either, since I work full time. So that summer while waiting for the BMT evaluation, we made plans to move to a condo.

However, the doctors at U of M told us that if Ralph went through with the transplant, he would probably not survive due to his age and other health conditions. They recommended instead a type of chemo that would slow progression of the cancer and control symptoms. Palliative care. So for five years, he has lived with cancer. We’ve been very careful, especially the last two years due to Covid-19 and its variations.

Every six weeks, Ralph has his blood drawn to monitor his condition and adjust his chemo. This summer, his white blood count and blast percentage began to change. He began to struggle with dizziness and fatigue. On Tuesday, I received a call from his oncologist asking us to come in the next day. The Wednesday before Thanksgiving. He’d had his labs the Wednesday before. I sat at my desk looking out the window at work. Not moving. Not thinking. For a few minutes. This couldn’t be good news. Asking us to come in the day before a major holiday with one day notice.

They told us the blasts (leukemia cells) are increasing in his circulating blood. They are concerned that he may be developing acute myeloid leukemia (AML). So this coming Wednesday, he will be having a bone marrow biopsy to assess the blasts in his bone marrow and to assess the amount of fibrosis in his bones.

When he received the myelofibrosis diagnosis five years ago, I went into high gear. Trying to plan what to do, how to take care of him. How to save him. I was thinking of a cure.

This time feels different. The changes in his blood correlate with the fatigue and dizziness he has been experiencing since summer. Five years later, there may be better treatments. It may be that they have something available that will continue to slow progress of the cancer. But therein lies a lot of uncertainty. He has told me that he doesn’t want to go through a lot of treatments to try to survive longer.

So we are waiting for the Bone Marrow Biopsy. His bone marrow biopsies in the past have been painful. They drill a hole into the hip bone in order to extract bone marrow for testing. Then we will see what they say. What they have to offer him. Life is on hold.

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