Day +112, Tuesday

Photo of the Day: I arrived home to this scene of carnage.

This afternoon, walking through the door, I found Harry – our little RoboVac – belly up on the first floor. There are two RoboVacs in this household, I should add, with Harry being responsible for the upstairs and Sally the downstairs. They are never supposed to meet.

We are still determining the responsible party, but this one seemed slightly more guilty than the others. Just a hunch. Between the folded over kitty mat and the wire cat toy that I love and Andy tolerates, the scene – that involves Harry plunging down the stairs – just screams “Monster”. But that’s me.

Today started with tea service! I had a fresh mug of tea, accompanied by sugar and cream brought to my bedside. It was a wonderful way to start my day, and instantly put me in a happy mood! The caffeine helped and I was out the door only 5 or 10 minutes late, easing into my hematologist’s office at precisely 9:01 am.

My lab draw was – eh. Today, as advised, I requested a Butterfly Needle. And today, the same phlebotomist replied that Butterfly Needles were, “not good because they caused the blood test results to be off.”

Um, ok.

I have to give myself credit – I didn’t burst out laughing and I didn’t storm off either, calling bullshit. Then again, I was wearing a mask and she was about to stick me with a needle. Honestly, in all the years of having lab draws, in some instances multiple times per week, I have never encountered a phlebotomist so averse to using a smaller needle or working with a patient. As someone who is constantly working on growth and self-improvement, I recognize that this is an opportunity to assert my needs. And so I will. That being said – it should not be this fucking difficult to have a non-painful blood draw and a phlebotomist who will work with you.

I get labs again on Thursday, so the saga continues (unless we have a major winter storm, in which case everything will shut down and I’ll see if I can go in on Friday instead).

My appointment went well. Dr W is great, and I enjoy our conversation. It’s not like my NIH Team – I really miss Daniele, Erin & Dr. Arnold – it was just fun to catch up and chat, likely the result of fewer patients for them and isolation from a global pandemic for us all. Currently, the biggest issue is my dry skin, which we will continue to treat. Also, we received labs with my Tacrolimus numbers and were able to confirm that the local Tacro machine and NIH Tacro machine were only 0.3 points off (the previous Tuesday, I had a vial of blood sent up to NIH in order to compare the two). Hooray for small victories!

All other counts look good, except for my Creatinine level – last Thursday and again today, I was at 1.13 – which is just over normal. Tacro is draining on the kidneys, and tough on the body in general. I think with the change of moving home and everything else, I just haven’t paid as close attention to my water consumption as I should (though I consistently drank 2L of water per day). I told Dr. W I would aim for between 3-4L of just water, and check with the NIH. He was good with that.

After my appointments, I spent some time in the woods, on the Mountains To Sea Trail. It was more mud than trail, which made for great, slippery fun. At some point during my hike, I developed a bloody nose…a perfect storm of blood thinners + transplant + dry, cold weather. The mask covered the evidence, and once back at the car, I could clean my face up. My shoes, well, they were a different story.

There’s been a lot of rain lately.
Happily earned mud spatter!

I joined Andy for a quick lunch and then hit up Target, in search of the elusive “Personal Moisturizer.” Thankfully, not too many people had to pass by and see me staring at this wall of product. Besides, I was wearing a mask and cap and bundled under 4 layers. Thankfully, I found the Replens product I was looking for.

Where’s Waldo? Above the Monistat and on the left, third box in. It’s important because I can’t do Hormone Replacement Therapy, because of my history of blood clots and clotting disorders. Estrogen can potentially lead to additional blood clots, so this is something my providers and I are sensitive to. That being said – I want the tender skin in this intimate area to be healthy.

I returned home to find Harry in an undignified position. It was easier to ignore him, as I unpacked a few groceries and made tea before an NIH Telehealth meeting. Priorities, right? Later, it was nice catching up with Andy, playing music and making a homemade chicken & veggie soup, chatting with Christine, and checking in on Andy while he worked with Mom via Zoom to get her Alexa working. That too, is a work in progress and To Be Continued.

Oh – and for the record – Harry lives! He still works, so we’ll see how tomorrow goes.

Monster, helping me chop carrots. I love this cat.

And finally, just because – I went to wash my hands in the downstairs bathroom with my cap off – and I was delighted to see…..more hair growing! I laughed at the Male-Pattern-Baldness spot as the sides are growing in thicker than the top. Oh well. The point is – is that I know that my hair is slowly returning. But even funnier than my hair – my shirt, a gift from Andy for my 40th. It proclaims, “Vintage 1981”, and then just below and in smaller print, “Original Parts.”

Its safe to say, with blood cells that are nearly 100% originating from my Donor’s Stem Cells – I don’t think this is true. Andy promised to alter the text. I can’t wait to see. With that – goodnight!

  1. Can’t say which I like better: Monster watching the cutting of the carrots or muddy footprints lining the trail. Both photos are all you!
    Seems there’s always an up and a down. IE: finding a needed cream vs having an unnecessarily painful blood draw; although, there is no excuse for your phlebotomist: she needs to find another job. And soon!!!


  2. Robot vacuums are mysterious. Do they interface with cats?
    Happy to see your hair coming in.
    More progress. I am sorry about the painful blood draws. You don’t deserve that. Hopefully the day had more ups than downs.


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