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Waldenström's Macroglobulinemia
Blood Cancers & Disorders | Last Active: Apr 23 10:15am | Replies (132)Comment receiving replies
There you are, My Friend! I've been hiding in the rock pile! Hope that you had a great Fourth of July. Other than both of us coming down with stuffed up noses and feeling as though we have "caught" something, all is well. Keeping an eye on this and will test for Covid tomorrow to make sure it hasn't finally caught up with us. We have dodged it, so far.
More great news though! Val had his PETCT last Friday and he is, again, unremarkable. No evidence of cancer, lights out, Deauville score of 1. What a feeling of gratitude and happiness!!!! Next follow up appointment with his hematologist is 8/2.
He has been working, within his fatigue range, to get his strength and stamina back. He was able and willing to walk with our neighbor the day before yesterday up and over the hill and he did and it felt good.
What a journey this has been. Thank you for being here to run the trail with us. I will reply to Patrick about Val's treatment and how he it went for him. If I could get Val to sit at the computer and type up his own story it would truly be a Christmas Miracle. Soooo....I'll interpret. LOL
How are you doing? Have you been doing anything creative lately? I finished a small gourd bowl and am happy with it, but, I have been spending most of my time in the yard. I get a bit of tunnel vision going and am very task oriented. I want to get this landscaping finished!!! I hear my Little Workshop beckoning me in for some fun. Soon!
Big hug launched!
Sheri
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Hi Sheri, I’ve been hiding in plain sight! 😅 Thank you so much for your wonderfully detailed and helpful reply to @drwill about the new meds he’ll be taking soon! Val came to mind right away when I read Patrick’s comment! I hope it helps to allay is concerns.
I am beyond thrilled to see that Val’s PET scan was perfect!! Unremarkable!! That is the best word to see when we’re in medical treatment. I think when we’re younger we feel the need to be thought of as remarkable or standing out. So the first time I heard it from my doctor i had a nanosecond of deflation until I realized what it meant. 😂. I heard “You’re unremarkable today!” So I replied, “Seriously? I’m not memorable?” He laughed and said “I can assure you that will never be the case. You cause me sleepless nights and haunt me 24/7” 😂😂 Poor guy. I think he used to have dark hair before he got me as a patient… I digress.
Val IS remarkable and it’s really reassuring to hear about his continued progress! I’m glad he’s Mr Sunshine again. I’m sure you are too! (Sending you a PM)
Thank you again for replying to Patrick.