Day +139, Monday

Photo of the Day: Moving forward, one step at a time. Today’s hike ~ Bent Creek.

Today was more challenging. I’ll be honest – last night, I had 7 hot flashes. SEVEN. Not cool, literally, very not cool (yes, I wrote that and laughed). I did what I could to help my body, but sleep was hard to come by. And for someone who has been incredibly fatigued lately, this stinks. At this point, it feels impossible to sleep for an entire REM cycle. Yes, I understand that my body is going through a lot and this may or may not be menopause…but it’s just one thing after another. And it wears me down.

For the record: I’m having a hot flash right now. Ugh.

Moving on – I think it is the combination of so many little things that don’t seem noticeable at the time, but this morning and today – they all just added up. And I cried, more than once. I woke up exhausted again; the promise of a strong cup of tea helped get me going. Later, Andy texted, asking if I could meet him earlier for our planned lunch date, and of course I said yes. But then it just took forever to get ready – my sensitive skin required a bit more TLC, and mid-way getting one compression sock on, I had to lay on the bed and tug….something I had never done. And then the skin on my leg that was being compressed was irritated from the pressure and hurt, along with my face.

The worst bit, though, was catching my reflection in the bathroom mirror – patchy whips of hair fuzz, puffy eyes, and acne on my cheeks – and I thought to myself, “how could Andy or anyone find you attractive? Who would want to be with you?” That inner critic was just vicious, and the thought popped into my mind before I could even put up a defense. So I sat on the bed and cried – a combination of sadness, frustration and pain. Grief, in the form of a left leg compression sock and right foot running sock (I had given up). 10 minutes later, I knocked my favorite tea tin to the floor, tea bags everywhere, and a few more tears sprung to the corners of my eyes. I was just over it, and it wasn’t even yet noon.

After lunch and meeting Andy, I headed to Bent Creek. Hiking didn’t really appeal to me, but I knew I needed to be outside. Time in nature has always been healing; so I grabbed my camera, and decided to just take my time and enjoy the woods. I was stubborn, though, and set an arbitrary goal of hiking 6 miles…and before you say anything, yes it’s ridiculous and no, that number doesn’t mean anything. I think I just wanted to feel as though I was doing something, or had some itty bitty bit of semblance of control over what’s happening with my body. Like, if I could walk 6 miles through the forest, then I could make everything else OK, too.

I know, I know – we do silly things, but sometimes that’s all we have in that moment.

Later, after returning home, I turned my phone back on and saw that I had missed a call from my hematologist’s office. I’ve learned that it’s one thing if the nurse calls and leaves a message – its something else when it’s your doctor, as was my case today.

The bad news: my Tacrolimus level spiked to 16, for some unknown reason. I watched my NIH Team flip out over an 11.2 once; and my “goal” range is currently between 5-8. I can’t think of what would have caused this, except I started a new medication for allergies – Zyrtec – last Wednesday. I have held this evening’s Tacro and have not taken Zyrtec. Regardless, this was last Friday’s number and I’m worried, scared. Thankfully I see Dr. W tomorrow and I’ve already sent an email to the NIH and my Team. Hopefully we can put a plan together moving forward.

Other lab results? My Epstein-Barr Viral results returned positive last Tuesday, but negative on Friday. EBV can cause Mononucleosis and as I understand it, both my donor and I were positive with EBV at some point; this simply means that post-transplant, EBV can be re-activated in my body. The jury is still out on this one.

What the jury isn’t still out on, is my CMV – or Cytomegalovirus – results also came back positive (again, both my donor and I were CMV positive). Dr. W wants to consult with my NIH Team on the best antiviral medication to help my body with this, potentially Valacyclovir, but we’ll see. CMV, as I understand it, can affect any organ of the body, but often present as similar to Mono…lots of fatigue, rash, but it can also be extremely dangerous in post-transplant patients.

I know that I could google more about EBV and CMV, and that a lot of what I’ve been experiencing over the past week fit into these two illnesses – but at this point, I just don’t want to know. I want to find a solution and move forward.

The good news – any combination of the three could be causing my increased discomfort and fatigue. Having an understanding of what’s behind the symptoms is so important and I’m thankful for that knowledge, even if it frightens me.

Emotionally I’m scared and concerned. As a problem solver by nature, I want to figure this out. Illness can be very lonely also – you feel like you’re the only one in the world going through something, when the reality of that is very different. Lots of other Stem Cell Transplant folks have dealt with this exact type of thing, post-transplant. But that knowledge doesn’t take away my fear right now.

My self-care this evening included watching Kung Fu Panda 2 & Kung Fu Panda 3 while Andy played pool league. Both movies are full of wisdom and awesomeness; I never tire of them. (Last week was Kung Fu Panda 1, fyi). I also lit a favorite scented candle and enjoyed Cinnamon Toast Crunch, just because. Currently I’ve got a purring kitty on my lap and 34 minutes left in the third movie. My appointment tomorrow is an 9 am, labs first followed by Dr. W. All I can do is take things one day at a time, one moment at a time, one breath at a time. And practice lots of Self-Compassion – that’s always a good thing to remind myself of.

I will be alright. This will be OK. A moment of happiness from earlier when I was at Bent Creek – I’m smiling because I’m done taking walking selfies and figured I would throw in a goofy one, just because. I’m glad that I did.

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