It’s been a rough few days on my end – between record level bladder pain (think bleeding, the occasional clot, and major discomfort on all levels), a rapidly onsetting of mucositis (painful inflammation & ulceration of mucous membranes in the body, especially the mouth in my case) and a f*@$ing case of hemorrhoids, well – life as I know it has taken a painful twist. The culprit is mostly the chemo that I went through in order to receive my transplant, but the BK virus in my bladder certainly isn’t helping things. I’m told that most, if not all transplant patients go through the aforementioned.
I’m here to tell you that this is one of the more painful things that I’ve gone through in my life.
The fear has worn down, a little at least. I understand that this is all normal and that nothing that I have, my Team hasn’t already worked with. It’s “The Long Night” part of transplant, where I’m just going to feel really crummy before I get better. In my meeting with Jennifer (social worker) today, she reminded me again of doing hard things in the past – that has shown that I can do hard things now. Check, check and more check.
So I’ve mostly been laying low, trying my darnedest to manage the pain. After I threw up twice yesterday, my Team today consulted the Pain & Palliative care folks, and they recommended a PCA, or patient-controlled analgesia. Essentially, I’m hooked up to a pump that allows me to administer my own pain relief on a timed schedule.
I feel OK about this. I’ve spent a lot of time deep breathing and doing meditations for pain. Its so hard to hurt; I know it’s temporary, but when you’re in the thick of it – it doesn’t make it any easier. On a much happier note, my nurse Charlotte the other day, pointed out that if I put all of my Harry Potter books together, it shows a beautiful mural. So naturally, I did.
Today I spent a bit of time trying to catch up on photos from last night’s haircut. And explaining my project to Jessica, my nurse who was monitoring me during my infusion of Platelets. I talk with my hands, just like my Mom.
My haircut was extremely special, because both myself and Andy had our heads buzzed (in my case) and shaved in his. I told him that he didn’t need to shave his hair; he insisted on supporting me. I said – don’t be silly, its your hair. But he said that he loved me and it would grow back. So Andreas, my nurse cut mine, while Debbie, Andy’s sister cut his. And in classic 2020-style, this was all captured via Zoom.
I’m not sure if you can really see Andy, but my laptop was facing me. We work with the tools we have. I’m touched by what he did; not everyone would do this, but Andy is one in a trillion. And he happens to be folically gifted. But more than that, he happens to be one of the best people I’ve ever met and I’m very lucky to have him in my life. It’s not easy being in a relationship with someone undergoing a stem cell transplant. Very early on, I told him, “it’s a lot to ask someone.”
He replied with, “you never asked. And you’re worth it.”
And that’s just Andy.
Now my night is winding down. I’m hoping that I’m able to keep talking and swallowing as both have become quite painful. There are things here they can do for me – a few different mouth rinses that can help the relieve the discomfort, and I’m aiming to eat at least 2 mango-banana smoothies per day in the future, with added packets of benecalorie, a marvelous, tasteless food/substance that adds 300 calories to whatever I dump it in. We’ll see how much longer I like mango-banana smoothies after this. I did end my night with an attempt on Pull & Peel Twizzlers.
I ate 1, so this pretty much means I’ll set another record for longest lasting bag of Pull & Peel Twizzlers ever. And they’ll just be here for me when I start to feel better. Alright – Day +8, you are in the books!
Difficult to imagine having just a piece of Pull and Peel Twizzler, it seems an impossibility, or a mistake or even an untruth! But
the truth is your horrible pain, and hurt. Go away, GO AWAY: we want these horrible feelings gone🤮. And as you experience all this, you still plan a birthday surprise for your dad. Oh Marit, how we love you.
We love the great British baking show!!! Miss you so much and can’t wait for to be running alongside Hazel and me again soooooon!
Hurray for Andy and the Harry Potter series. Andy is fantastic!
And so are you. You are undergoing horrific pain but you arrange a wonderful gift for my birthday. I am so touched. Let us hope the pain quickly subsides. You deserve to be pain free. I am so proud to be your father. You are truly amazing