The years long rollercoaster

I have come down significantly from the high I felt on Monday of this week, when I got my stem cell re-infusion. This is to be expected with this treatment, but it feels horrible, nonetheless.

Yesterday (Wednesday), I had my blood tested, and a consultation with Dr. Ruiz, Jr. He looked at the results and was pleased to tell me that I am officially in neutropenia, which means I have extremely low levels of neutrophils. My neutrophil count was 1,000 cells per microliter. He also said I am anemic. He didn't need to tell me that, I can totally feel it.

I have never felt as bad in my life as I did yesterday. I felt like my body was done. I am so weak and tired, and I keep taking naps during the day, so of course, I am having trouble sleeping through the night. Today I am determined not to nap. Thanks to coke and coffee, so far, so good.

A couple of people who are usually much more able bodied than I am are currently in wheelchairs, because they don't have enough strength to walk around. I have resisted using a wheelchair since we left the airport, and I hope to keep it up. Today, Renee and I even went to the gym, and I did the bike for 20 minutes, meaning I sat on the bike and rotated the pedals once in a while, as she stretched and played poker on her phone.

Every morning the patients, myself included, get a filgrastim shot, because this drug helps increase platelet and white blood cell counts rapidly. Every other day we will get a blood draw and consultation with a doctor to see if we are in neutropenia or not. If our white blood cell count gets severely low we can get a blood transfusion, but so far no one has needed one.

This is only the beginning of this physical and mental rollercoaster. I have been made aware that for at least the next 2 years (maybe more), I will have good days, as well as many days where I will be brought to the edge and want to jump off. But I won't jump, I promise. I know in my heart that someday I WILL make it back onto the ice in hockey skates, and I will keep pining for those days.

And now, some words of encouragement from my amazing friends and Shooter McGavin:


https://www.cameo.com/recipient/61410a53e2352b001d8e8a1a?utm_medium=owned-crm&utm_source=email&utm_audience=customer&utm_type=singlesend&utm_subtype=crm&utm_drip=email&j=165a0b9aa821a07de4d9c0efc44bb5da&utm_campaign=Triggered%3ACus%3ATar%3ACRM%3ACompleted&sub=613cf9f03abe47001dbec9ce&_branch_match_id=967026979871052188


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