Day -12, Thursday

Photo of the Day: One of many post-Busulfan/Chemotherapy blood draws. My Team wanted to know how my body metabolized the chemo, so at 2, 3, 4, and 6 hours after beginning the Busulfan, I had my blood drawn from the IV in my left arm. Why the left arm? Because my Central Line Cath is entered via my right jugular artery and the doctors want the drug to be as dispersed as it can be throughout my body before retrieving test samples. Or something like that. My nursing team was AWESOME today.

Today was another big day – I had my Busulfan (type of Chemotherapy) test dose administered first thing. It wasn’t a full dose, mind you; I was given about 10% of what I’ll start next Wednesday. Today’s goal was to see how my body metabolized the drug, in order for my doctors to determine the appropriate dose.

Honestly, there were no issues, and I tolerated it very well. I was given anti-nausea medication as a prophylactic, which just made me feel a little sleepy, especially when combined with a light narcotic pain med (minus the Tylenol) for residual Line Placement and biopsy discomfort.

The day, though, actually started with a trip to the coffee bar on the atrium level. I’m a sucker for cappuccino, and NIH-level caps are actually really good. Then my nurse surprised me with another COVID test. I would have preferred a pop quiz on chemo drugs, but whatever.

Then it was onto the Busulfan. I wasn’t sure what I expected – but basically a second nurse needed to verify that I was being given the correct drug and sign off on it. Then it was hooked up to a pup, and to the drug and voila. I listened to the machine administer the medicine over a 2-hour period. It was over before I knew it, and the empty bag was disposed of in a special chemo bucket (which originally I thought would be a throw up bucket for me, but thankfully wasn’t).

And then I had a blood draw. And then waiting.

Waiting for another blood draw

And another blood draw. And more waiting.

Is it time yet?

And this went on for four hours, but it was OK because I read Harry Potter, tried to find the 100+ point word on Words With Friends (yes, I’m competitive there as well), met with multiple doctors, talked more about the Jackson Hole WY airport (only airport in a National Park!), found out that I had skin cancer on my ear (likely accelerated due to my GATA2) but determined that it would not affect my transplant and that in a few weeks, it will be removed at Walter Reed (the NIH doesn’t have a skin surgery department, interestingly. Nor do they have an ER), and had my first ever round of acupuncture. And boy, that was a long sentence.

Anyway, the acupuncture was great – the lady who gave it to me was very kind and reassuring about all medicines. And I like alternative medicine – am completely into a total body approach. The problem was that she left the room with me stuck full of needles, showing a lot of skin. And then a new doctor, one whom I had not yet had the pleasure of meeting, walked in.

He stared at me. I stared back at him. Except that I couldn’t move because I was stuck full of pins.

He introduced himself, but maybe it’s the chemo, or anti-nausea meds, or the fact that I felt very embarrassed and never wanted to remember this moment EVER – but I couldn’t even recall his name. At one point I stopped him mid sentence and just apologized, “this is so awkward for me,” I stammered. He looked at me and said, “yes, wearing masks is awkward.”

Um, okay. I still don’t know what to think – but guess he was trying to make me feel less embarrassed, but there’s just no way of doing that when you’re flat on your back stuck full of pins. I wanted to crawl under my bed and into a hole, but the needles prevented any movement whatsoever. Well, fuck. One day I’ll laugh about this, but today was not that day.

Alone again, no more needles in me. Still reading, waiting for my last blood draw.

By 3:30 I was getting my final instructions from the nurses on 3NE, and by 4, I had made it back to the family lodge. My backpack felt heavy and pulled a bit at my central line – but overall, it could have been worse. And if you speak Minnesotan, you’ll understand it was actually unpleasant. I had a not-so fully balanced meal of crab sticks, chili-lime chips and cottage cheese for dinner. Yeah – that total body approach to health? Yeah, that went out the window pretty quick. Driving was out of the question for me, as I had already taken pain meds.

I should have inserted this photo earlier in the post. Oh well. Me, my nurses and my chemo drugs. They were having a conversation about blood drawing. I was listening – learning is fun.

So that’s it! I’ve got a round of Dental appointments tomorrow morning, and then an empty day after that. Andy gets into Baltimore late, and I’m looking forward to spending the weekend with him – even if it’s a boring, socially distanced one from mostly everything else. It will be with someone that I love very much, and that makes me happy.

  1. I have been impressed with your honesty and frankness about what you ae going through. I will tell my two granddaughters (whom you may remember sent you a get well wish years ago when you were first set to have the bone marrow transplant) how things are going. I am sure they will also think you are extremely courageous. And I think they will like your sense of humor as well. I’m sure that helps a great deal as you are gong through this lengthy preparation for the real thing. P.S. It is snowing in Minnesota right now!

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  2. Oh Marit,
    I loved the part about acupuncture – well not really. I can only imagine what a horrible experience this was. Will you be seeing this doctor again? Loved your dinner – the chips seemed especially good to me!

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  3. I was on pins and needles as I read your blog but I kept my clothes on because it’s snowing here.
    Glad to see you will be with Andy this weekend. He’s a real Mensch!
    Keep up with your great sense of humor. That will help carry all of us through this journey.
    ❤️Dad❤️

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  4. OMG you’re a human pin cushion….with my love for needles (also Minnesotan), I had my head between my knees after ear piercing. You’re amazing, Marit.
    Lorelei

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