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May 05-11

This Week

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Happy Fourth SCT (Stem Cell Transplant) Anniversary for me, The Quarantine Kid! With my apologies to you for my failing to provide more frequent medical updates. In my defense, there hasn’t been much to report since my health has pretty much plateaued, albeit without significant signs of improvement, but more importantly without spiraling into Fasten Your Seatbelt/Here Comes Trouble territory.

Here is a quick recap of issues noted last year and their current status.

Graft versus Host Disease (GvHD): My ever-present companion, and quite the troublemaker, continues to be largely responsible for most of my health issues.

Immunoglobulin G (IgG) Deficiency: Plummeting IgG numbers have been directly tied to GvHD going bonkers throughout my muscle-poppin’ beach bod (Ha!), but a regimen of biweekly IVIG infusions has helped to lessen the severity of whatever ails me.

Edema: That cranky old 2021 edema ulcer reappeared on my ankle at the end of 2022, but it has finally healed. Lower leg swelling is much improved and I am almost back to the old Heron-like bird legs I knew and loved. However, because some puffiness remains, I’ve been instructed to wear multiple compression wraps on the lower legs From Here to Eternity.

Myositis: My collapsing neck and upper spine has not much worsened, although it is difficult to hold my head up without a hand under my chin. The trio of neck braces were all failures, but I am expecting a consult with a prosthetic specialist to determine if the rigid plastic brace can be modified so it won’t sit on and cause trouble for my chest chemo port and the small port tubing that feeds into my jugular vein.

Breaking News!

Osteoporosis: Severe, it turns out, and a predictable result from the recent years of treatments and medications for Mantle Cell Lymphoma and GvHD and its sidekicks. In March of this year, I received the first of three annual infusions of Zoledronic Acid to combat this situation. Meanwhile, whenever I maneuver about with my four-wheel walker or when leaning on one of my appointment escorts, under my breath I am chanting: “Don’t fall! Don’t bump into anything!” The last thing any of us wants to hear is the snap, crunch, and crumble of these holier than Swiss Cheese bones.

Adrenal Insufficiency (Addison’s Disease): A chronic condition in which the adrenal glands don’t produce enough of the hormones cortisol (responds to stress, including the stress of illness, injury or surgery, and helps maintain blood pressure, heart function, immune system and blood glucose levels) and aldosterone (affects the balance of sodium and potassium in one’s blood and in turn controls the amount of fluid the kidneys remove as urine, which affects blood volume and blood pressure). This is very recent news, and I have only just started taking oral Hydrocortisone. Check back next year and I’ll let you know how this worked out.

Anal Dysplasia (aka Butt Stuff): Due to ongoing G.I. tract issues, within the last six months I underwent two procedures: Endoscopy/Flexible Sigmoidoscopy (examination of descending colon) and Anoscopy (examination of the inner lining of the anus and rectum). The first procedure confirmed suspected GvHD inflammation, while the second one (including multiple biopsies) revealed the occurrence of High-grade Anal Dysplasia. A pre-cancerous condition in which lesions (skin cells that have changed into abnormal cells) have formed in or near the anal canal. Anal dysplasia is not cancer, but anal dysplasia lesions can turn into cancerous tumors. I have an appointment for the end of summer to get the lesions treated in-office with a Hyfrecator, which cauterizes/burns off the top couple layers of cells. I’m not looking forward to my poor little old pooter squeaking out “Ow! Ow! Owie!” in the weeks following the procedure.

And that pretty much brings us up to date! Thanks for tuning in. If anything remarkable occurs between now and my Fifth STC Anniversary, I’ll make more of an effort to provide an update.

Bye for now.

~ Love, Doug.

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