Diagnosis

I will be hibernating the next couple months. In September, I was diagnosed with Hairy Cell Leukemia, a rare blood disease (apparently only 1 in 3 million people get HCL each year, wish my luck was on the lotto not on Leukemia). It is treatable but not curable, this will be my chronic disease for the rest of my life. Next week, I will start a five day chemo treatment, after four weeks I will start an anti-body treatment once a week for an additional four weeks. If all goes well, by the end of March I will be back teaching and living my normal life and will not have to worry again for a decade or so.

It all started in October 2020, like so many others, I was feeling run down. I knew I was peri-menopausal, I felt fatigued, depressed, and I was just not feeling myself. I wanted to pop into the naturopath, have her give me a few supplements and get my energy back.

She did some routine blood tests that came back with a bit of concern. My white and red blood cells were all below normal. She thought I might be anemic and prescribed iron and ton of different supplements and told me to come back in a month, after a couple months of back and forth my numbers kept falling and she suggested I find a specialist. I left the naturopath and started working with a hematologist at Seattle Cancer Care Alliance. This scared me. I hated the word cancer, it had invaded our family already, I was just anemic, I didn’t need to be at SCCA.

In January of 2021 after a wonderful Suncadia Christmas with my family (aka Super Spreader Event), I got Covid. Rapid tests never caught it but since I was on a regular schedule of blood tests now, it showed up. After Covid, my blood counts dropped even more. Still the hematologist figured it was an issue with iron and anemia. I tried not to be too concerned. But as the numbers kept dropping month after month, they decided I needed an iron infusion, in April I sat at SCCA for three hours binging Bad Moms, while I was pumped with iron, straight into my veins. This had to work, I was hopeful this was the turning point.

Unfortunately, that wasn’t the case, after the infusion my iron numbers went up but blood cells and now my platelets were down. The infusion hadn’t helped. Now I was worried. I was Googling all the reasons someone would have a low blood count, cancer was always the answer. I emailed my doctor and asked what the next step would be, I wasn’t willing to keep getting blood tests without any action. The next step was a bone marrow biopsy. The weeks before, during and after the biopsy my anxiety was through the roof. I could not concentrate on anything, my thoughts spiraled and I only imagined the worst case scenario.

Almost a year passed from when I went to my naturopath and when I got the results of my biopsy. As Andrew and I waited for the doctor to share my results, minutes felt like hours, when he finally walked in he started talking in what seemed like a foreign language. Cells this, levels that, I had no idea what he was talking about. Eventually, I just said – is this good news or bad news? He told me I had what was called Hairy Cell Leukemia, an abnormal mutation of B cells that look like they have hair on them. He was going to investigate more to get a better idea of what percentage of these cells were in my marrow, but as he said, I did not have acute leukemia, he wasn’t going to throw me over his shoulder and get me into treatment right away. I could wait awhile. That was in October of 2022. He suggested I get my updated Covid booster, my flu shot and take precautions to stay healthy because I still had neutropenia (abnormally low white blood cells, which makes me at a higher risk of infection) and we would start the treatment in the new year.

So here we are. I will start my treatment on Monday. And then as I said, I will be hibernating. Staying in, not teaching, sleeping, resting and taking care of myself. I feel lucky and blessed. I realize it could be worse and I am lucky that I am in tune with my body and knew something was off. I have an amazing support group of my husband and kids, my close friends and my family. I will be well taken care of.

What I need now is healing vibes, prayers and any good book, show or movie recommendations.

Lastly, I will say, don’t take your health for granted. Get your mammograms, colonoscopies, annual physicals and your complete blood counts. Understand what makes your body feel good and when you don’t feel right, investigate.

I wasn’t sure if I would write or publish this, but writing for me is therapeutic and whether you read this far or not doesn’t matter. For me, its about putting myself out there, being vulnerable and accepting what is real in my life. After my diagnosis, I just called it that, never saying Cancer or Leukemia, but after talking with my therapist I understand that I need to acknowledge what is happening, realize it is hard and then get through it. This is my first step.

Published by kathygorohoff

This is a site about me and for me. A place to put my thoughts down, and to express what I am thinking. Sometimes serious, sometimes fun, sometimes just trying to get a message out. Just a place for my voice or thoughts to be heard, even if just for myself.

One thought on “Diagnosis

  1. Kathy, I’m one of Lynn M.
    Long time sister friends. You’re in my thoughts and prayers. She Reached out to me this evening with you in mind.
    That’s why I’m here. Love, Tara 🙏🏼🌺🌈💪🏽🤙🏽

    Like

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