Impending Ending

2020 will be one of the most difficult years of my life.

And whenever you postulate on future events, there is always someone in the crowd with the need to say, “You don’t know that.” I think maybe they like being contrary or are often wrong or are interested in what they might consider to be a safe bet on telling you later, “I told you so!”

But I do know, so shut up, and let me speak.

I’ve been traveling home some weekends to visit my mom who was diagnosed with Myelodysplastic Syndrome (MDS) in June 2018. It’s a type of blood cancer, sometimes referred to as ‘pre-leukemia’. Average life expectancy is about 1.5 years and that means a 1- to 2-year bell curve. #1 cause of death is when MDS progresses to Acute Myeloid Leukemia (AML). #2 cause of death is infection.

Last weekend, I made a last-minute decision to drive home to visit my mom. I had not been in town since Christmas, but the weather promised snow through Iowa. Such is mid-western winter travel. We had a wonderful visit until Sunday when I had to take her to urgent care, and she was treated for pneumonia… lung infection…

She’s not been able to get chemo for a couple months due to her blood counts being too low. Insurance will not cover the cost of a bone marrow biopsy yet, too soon after the last one according to the charts and graphs that they use to decide your medical care. But her medical team believes that she has progressed to AML based on her symptoms…

2020 will be one of the most difficult years of my life.

People with AML must be treated. Acute leukemia means the majority of affected white blood cells cannot function normally, causing rapid degeneration. Without treatment, survival is usually measured in days to weeks.

I have had hard conversations with others trying to grasp onto hope of a cure. But mom can not get the cure, only treatment that will extend her life as long as possible. The cure is a bone marrow transplant. I have been asked, “But what about a stem cell transplant?”

Same thing.

The first bone marrow transplant occurred in 1939 and the first successful transplant was in 1968. But it is what it says- a transplant of bone marrow tissue from donor to patient. Only since the 1990’s have stem cells been harvested and used for treatment. It is in fact the only form of stem-cell therapy that is widely practiced.

The problem is not the stem cells, it’s how to get the stem cells to do their work. The cells go to the site of greatest injury and repair it first. So, it’s what they have to do to injure you, to remove your cancerous bone marrow in order to get the stem cells to replace it with healthy tissue.

Blood cancer patients are literally killed with chemo and brought back to life with stem cells.

Mom is almost 80 years old and as much as we would like it, she will not survive the cure. The chemo regiment is too intense. Even with a stem cell transplant only about 30% of people over the age of 60 are expected to survive 3 years or more. If she had been able to get the transplant back in 2018, she probably would not have lived much longer than she already has. Her life is being extended for as long as possible, but it is a terminal disease.

We hope to celebrate her 80th birthday in June. It’s a stretch goal but it doesn’t hurt to hope. It would be fun to have a big party with ridiculous desserts for mom and wine for the watchers. It’s not that life goes on. Life must go on. You must choose to go on. Her children and grandchildren, and now great-grandchildren will live out their lives without her- which is the natural order of things.

I myself have twenty years of career left, whether in IT or finally writing that best seller. I have a new relationship, a new partner in the next chapter of my life. It’s snowing today but spring and summer will arrive even as she departs. I will plant my flag, make my stand, move my life forward to the next and the next.

I have been a caregiver for 20+ years. I have watched people deteriorate and die, held the dead. None of this is new territory for me though that does not make it any easier. But it is new territory for some of my family and I cannot release them from this burden.

So, how to remain calm, tender, loving, patient, forgiving, helpful, compassionate in the face of such pain… How to remain composed and clear headed enough to perform the required tasks while consumed with the fire of agony…

To die is the price of being born. To grieve is the price of loving others. To love and be loved with such intensity… well… that is the whole point of living.

-Copyright C.M. Mounts, February 2020

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