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Linton ... and Multiple Myeloma

Follow Linton's odyssey of living with multiple myeloma

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Day + 64 post-STC. Special Days

Time for an update! Day + 64 post-STC.

This blog post should have been written two days ago, on February 6, 2018.

That date marked two special events:

(1) it was Linton’s birthday.
Who would have thought when he was born that day in London, within the sound of Bow Bells, that he’d be celebrating his 56th birthday exactly two months after  

(2) he’d had another special “birthday” i.e. Day 0 of his Autologous Stem Cell Transplant (Dec 6, 2017).

Linton had a quiet and relaxing birthday with touching phone calls and text messages from friends and family around the world. He also got permission from his hem-onc to eat out at a restaurant, provided he chose something well-cooked.

So, Linton donned his new mask from VogMask and off we set to have a platter of ribs and chips/ French fries. We chose a quiet time of day and the waitress kindly seated us far away from the few other souls who were out for lunch at 3 p.m. on a Tuesday afternoon.
The waitress was unruffled when Linton walked in with his very noticeable Vogmask.
Linton had admired the one that JB had worn to the hospital during his STC. However, that design was Sold Out in Linton’s size. He settled for one he’d hoped would look unobtrusive and rather plain (and it did look like that on the young guy who was modeling it on their website!)

However, in reality, it’s a bit bold. Linton says he looks like either a bandit or a ninja!


But, it’s more comfortable than the disposable ones he wore during his hospital stay; also, when he puts it on he’s not transported back in memory to the days he spent in the West Wing for the STC. The VogMask lasts for two years and can be gently washed.

As of today, Day + 64 Linton is doing very well. Within the past week, he has improved quite markedly. He still has his daily nap, but he’s stronger and feels less wiped out. He’s able to “squeegee” all the walls of the shower stall after his shower – something he previously wouldn’t have had the strength for. He has a reasonable appetite and he doesn’t look as pale and washed out, either.

Actually, the day after his birthday he’d planned to return to work for a few hours. However, Pittsburgh had another winter storm with icy and snowy conditions. He decided to be cautious and not venture out in those icy conditions. A few years ago he slipped on black ice while walking down so-called Cardiac Hill from the parking lot to the research building where his lab is. He didn’t want to risk a repeat of that with his now more fragile bones.

However, as soon as this icy spell is over, he’ll be back – at work – and will slowly ease back as his strength permits. At home, he’s been catching up on administrative work that he can do from here – such as completing the endless pages of the recombinant DNA IBC protocol renewal application and morphing his NIH Biosketch into the newly-required format.

At his last appointment with Dr. R. on Day + 49 (Jan 24, 2018), Linton’s blood work was fine. His red blood cell count has continued to increase to just under low normal. His white blood cell count and absolute neutrophil count have decreased, but are right on low normal, while his platelets have decreased to just a bit below normal. His doc said such fluctuations were to be expected as the graft stabilizes, and that his counts were acceptable. For the first time since October 2017, he had the specialized tests that track the markers for multiple myeloma. All are within normal limits: the mutant, cancerous clone is not detectable by either Serum Protein Electrophoresis (i.e. no M-spike) or by Serum Immunofixation Electrophoresis. His kappa-lambda Free Light Chain ratio (at 1.10) is within the normal range.

Also, at the last appointment, Dr. R. convincingly persuaded Linton to re-try gabapentin (300mg/day) for the unrelenting peripheral neuropathy in his feet. The burning pain was driving Linton dilly, and it interfered with his sleep. All night long he’d be rubbing his feet together to try to relieve the pain – it sounded like there was a carpenter lying next to me, never-endingly sanding a piece of wood. Listening to that rasping sound throughout the night was enough to drive me to distraction!

The gabapentin has worked well. After one nightly dose, it took the edge off the pain just enough that we both slept peacefully through the night.

With Linton feeling stronger we‘ve also welcomed back our little kitty, Eartha, to the bed. Eartha always used to snuggle up right next to Linton, wedged up by his side. But, while we wait to reach the first 100 days, with restrictions still in place, we’ve coaxed Eartha into spending time alongside me. I put a long scarf on my side of the bed, and now she knows to stay right there, on her own personal runway.

Speaking of noteworthy days in this journey to reach the end of the first 100 days (at which time most of the restrictions will be lifted) -- Linton has also just passed the mark where he has only 40-days remaining until the end (that would have been Feb 4, 2018). It reminded us of our days growing up in South Africa in the 1970s and 1980 when military conscription was compulsory for young (white) men. As the much-anticipated end to their two years of military service approached, the young military conscripts always held a “40-Days Party” to celebrate a mere forty days remaining until they were “kla-ed out” (demobilized.) The 40-Days tradition was based on the Cliff Richard song of the same name. Had we remembered in time, I’d have woken Linton up on Feb 4th with it blasting forth, as happened on the morning of my own "40 Days" in the South African Army Women’s College that I'd volunteered in during the late 70s!

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