Day +19, Sunday

Photo of the Day: Trying to read Harry Potter, but dozing in the process. Sleep in the hospital is difficult to come by, sometimes impossible. Frequently, people will enter my room, needing to do vitals, or give me meds, draw labs or take my temperature, check my I&O sheet, give me updates on blood products, etc. There was a 2-hour window today that I had to myself; and I woke up partly through with HP open across my chest, drool on my cheek. I tried hard to stay awake and read, but couldn’t.

I’ve continued to be successful in my quest to eat Pull & Peel Twizzlers, other solid foods though – eh, not as much. For dinner, I added Peach yogurt. Why Peach? No clue, it just sounded brighter than my traditional plain or vanilla. I can’t prove it, but I suspect it was more sugar than actual yogurt, similar to the kind that I had as a kid where I always licked the top seal. For the record, I licked the top seal today, too.

I don’t remember Galina, my nurse coming in for 5:00 am labs. But at 6:30 I felt her tugging at my Blood Fluids ID tag to scan. She saw my open my eyes and softly commented, “you are getting Platelets now.” Per lab results, my platelet count was 18, and anything less than 20 means I need a transfusion. Every time I receive blood products, I think of the donors and I am grateful for their gift of life.

At 7 am, the daytime nursing shift replaced the overnight crew, and I was very happy to see Elaine and Junga pop their heads in my room to say hi – but then immediately close my door to let me sleep. By 7:30, my platelet infusion was complete, and I was doing my best to head to the bathroom and shower before all of the doctors and residents came in for the day….but failed. I don’t know about you, but I feel pretty vulnerable just sitting in bed in my pjs. And not just any set of pjs, but the most un-matching, hideous pjs in the world. The top is blue and has snowmen, bottoms maroon with orange flowers. Toss in a bald head for good measure.

Don’t mind me if I don’t make eye contact with you. I’m wearing this and haven’t had my coffee or hot tea yet. Or a shower. And I hope that all of my buttons are properly fastened.

But one doc came in for a pre-rounds check. Nothing new to report except my body did great with the Mycophenolate (MMF) horse pills, and I didn’t have any nausea. There are no new skin issues, no temperature spikes. Mucositis is getting better, bladder is getting better, hemorrhoids are nearly gone, wart wound on foot is OK, pain level is manageable, and please & thank you for ignoring my pajamas. Then he was gone and my nurses came in to administer morning meds, and do the zillion things that only they can while working with other patients.

Junga reading my PCA (pain pump) levels, while Elain and Patricia discuss my medications. I appreciate how they are great with me taking photos.

Realizing it would be a while before I hit the shower, I ordered breakfast and threw on a sweatshirt. And 2 minutes later, Dr. Hickstein walked into the room for a quick briefing.

Gotta admit: in this COVID time we live, its a little weird seeing this many people in a room. Granted, they are all super awesome NIH people and I have entrusted them with my life, so it was OK. Oh, and just before this shot was taken, I downed two prune juices. That was a mistake and one would be ill advised to attempt in the future.

Dr. Hickstein liked how my numbers looked – my WBC dipped to 3.77, as we have stopped the GCSF (Granulocyte colony-stimulating factor is a glycoprotein that stimulates bone marrow to produce granulocytes and stem cells and release them into the blood stream). This is normal for my counts to dip a bit, all part of the process. If I need to be injected again with GCSF, which I likely will, it’s not a big deal – just part of the transplant process. And Dr H liked how everything else looked. The biggie is getting me off my IV pole (bye bye Bart!) by taking all pills orally, and no longer using the PCA, or pain pump.

With how good things are looking, Dr. H said that I could even leave as early as Wednesday or Thursday. I gulped. But am excited at that prospect. Another biggie for that, is getting my Mom, who will be my caregiver out here, well – here; in my Friday meeting with social work (Jen), we decided to wait until Monday to book her travel, just in case anything changed over the weekend. I’ll know more tomorrow. After Dr. Hickstein left, Elaine wanted to remind me that I’m NOT being kicked out in any way, and that as long as I’m ready to leave the hospital then I can go. But if I wanted an extra day – that’s OK too. So…we’ll just wait and see.

By 10 am, I was exhausted again, and with all Rounds being complete, meds administered, I decided to read Harry Potter and nap, not necessarily in that order.

The rest of the day was uneventful. Between eating lunch, taking meds, reading and going for a walk – it wasn’t bad. I was hoping for a thunderstorm, which there was a chance of here – but nada. Oh well. I did shower and ate a few more Pull & Peels, chatted with Andy.

Taking care of my toes with the honey balm. Most people loose their warts after a few weeks and mine are diminishing rapidly. Both feet have spots where I’ve bled a little, so we are doing our best to keep them clean and infection-free.
Junga, signing a feather for my turkey. My friend Melissa had a beautiful idea for getting staff and people who have worked with my during my time inpatient, to write personalized notes or just well wishes – by signing a feather and gluing that feather to the turkey. I LOVE it so much. Junga is the first one to sign and I was touched. I was also incredibly touched by Melissa’s package – the turkey being one of my favorites, because this involves everyone who has been associated with my care.

So I’m ending Day +19 feeling OK. Boring….remember, boring is going to be my go-to word. Time to clean up, don my Ugly PJs and read Harry Potter until I fall asleep…and maybe get another turkey signature or two.

  1. Turkey feathers: newspapers publish them for kids to color, now, medical people sign them to record being on Marit’s team!! Wednesday release day????? My heart nearly skipped a beat. That’s about 48 hours from now – give or take a few. Packing goes into overdrive.

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  2. We are beyond happy for you the way thngs are going. Keith for decades gave platelets at the Red Cross. He started when a childhood friend came back from Madagascar with leukemia. That friend then young lived a long normal ife. If I remember right one of Keith’s certificates said 35 gallons of donated blood. So he has paid forward as people say. May your good spirits that come through in your blog continue with your improving health. Cheers! Much love, Grace and Keith

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  3. I wrote this last night for my husband who is an RN at a long-term care facility here, dealing with covid cases fairly often. Thought it might be diverting from the boredom for you :

    It Must Be A Ritual
    (A Tribute to Covid-19 Nurses)

    The worlds are two
    The one profane, of subsistence,
    Where people live and die for reasons
    That divide them by their existence

    The other of the sacred
    Touched by the sublime
    Living beyond reason
    Existing beyond time

    A consecration ceremony happens by the eternal bedside of mankind
    Through an irrational sacrifice that must be a ritual
    Creating Mediums among us
    Else we would have victims holding our immortality
    Repeating what matters most so that we learn what matters

    It must be a ritual
    To die to everything
    And be reborn everyday divine
    Not expecting man to be able to touch both worlds
    Because of reason

    It must be a ritual
    To release the promises of reason
    From hearts everyday
    Yet see division beyond time

    It’s got to be a ritual
    Because I see no bedside Mediums
    Holding on to life.

    – Kelly Riedesel, 16 Nov 2020

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