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Posted 2018-01-09T04:57:00Z

Jan 8, 2018 --- Day + 33: A Third of the Way through the first 100 days.

Today Linton's a third of the way through the immediate 100-day recovery period after his SCT. 

He's been home for 17 days and is steadily gaining strength. 

When he first arrived home, he was quite disheartened at how de-conditioned he'd become during the almost three weeks in hospital. He battled to walk up the three flights of stairs to our bedroom. However, slowly and steadily he's finding it easier. 

Initially, he felt nauseous every day and his stomach and intestines were churning and cramping unrelentingly. In the past day or so, the nausea has lessened so that it's now more fleeting than persistent. And, the cramping in his gut has also decreased. 

He still feels very fatigued.  And the frustrating thing for him is that because it's chemo-induced fatigue it isn't relieved by rest or sleep. Linton spends a fair amount of the day sleeping and napping, yet he continues to feel exhausted and heavy-limbed.  However, I can see that gradually he's able to spend more time resting, rather than fully asleep. After each activity, be it a meal, a shower, washing the dishes, Linton needs to rest.  One activity he's been managing well though – is driving his car!  He has been taking it out for short spins – e.g. he'll drive the short trip to the Cancer Center, or he'll drive me to the nearby supermarket where he stays put in the car, and I run out to buy the groceries.  Being able to manage driving has been rewarding for him.

Showering, however, has been a bit of a challenge: for his first two weeks back home, showering left him depleted. It made him very light-headed, dizzy and short of breath, and he had to sit down immediately after stepping out of the shower to avoid fainting. Then, he'd need to lie down for a while to regain his equilibrium. 

Today though, after his shower, he felt steady. I am sure he'll  be pleased to soon not have me anxiously hovering around the bathroom while he showers.

However, the most bothersome and persistent side effect is the chemo-induced peripheral neuropathy (PN) in his feet.  He has had some level of PN for months now, a side effect of the Velcade (bortezomib). (Velcade is one of the trio of chemo drugs that was part of his induction chemotherapy regimen).

However, now the intensity of the PN seems to have worsened and feels fiercer: it's a continuous burning, tingling, and numbness in his feet that often makes walking challenging. I have tried to rub his feet to try to soothe it, but Linton says it's too painful. It seems worse at night, too, and often wakes him up. 

We're hoping that it will subside with time.  His hem-onc did say Linton could try a daily dose of Vitamin B6 (100 mg) as there is some evidence that it could help with PN. Also, he said Linton could try gabapentin (300 mg at night) but he has been reluctant to continue with it as it made him very woozy when he first tried it. 

Since his discharge from the Stem Cell Transplant Unit on December 22, 2017, his blood cell counts have been regularly monitored and they've all been moving in the right direction.

It shows that his new stem cell graft has engrafted well in his bone marrow and is consistently producing the full tri-lineage array of blood cells (RBCs, WBCs, platelets) all on its own. No more Neupogen (G-CSF) shots needed to boost production. 

His WBC counts (4.7) and his absolute neutrophil counts (2.8) are within normal limits and his platelets (187) have increased steadily to normal levels, too. He hasn't needed any more platelet transfusion since the day of his release. His red blood cells are lagging behind a bit, but even so, they are slowly increasing, too, and are not of concern. (His hemoglobin is 11.4; the low normal value for a male is 12.9.)

 The graft is still very young and not yet fully stable, so he is still vulnerable to infections. Hence he's still under all the precautions regarding what foods he can eat (no restaurants; no unpasteurized milk cheeses, etc), avoiding crowds, no contact with plants and soil, don't go into potentially moldy areas (e.g. our basement!), no air travel, wear a mask when leaving the house, etc.  We also learned that until the 100-day point, Linton should avoid all wood fires and wood burning stoves. The burning wood could potentially release bacteria and mold that could be inhaled.  

Linton saw his hematologist-oncologist for his first post SCT follow up visit on January 3, 2018. He was pleased with how well Linton had tolerated the procedure.

We've been experiencing quite a severe cold spell here over the weeks since Linton returned home. However, when the weather warms up to a more comfortable level, and the sidewalks are clear of snow and ice, the hem-onc encouraged Linton to bundle up, wear a mask, and slowly start walking up and down our street. Linton was delighted to hear this, as the discharge instructions had said he was not to venture out at all during cold weather. Linton was beginning to feel quite despondent at the thought of staying inside until March 16, 2018 (the100 day mark)! 

The doc said that it will help Linton tremendously, both physically and psychologically to get outside: to see the daylight, breath in the fresh air and to get more exercise than he is currently managing cooped up inside the house. And getting the blood flowing to his extremities could also potentially help with the PN. 

Linton's cheeks, chin and neck are still so smooth from the hair loss. It looks like he's had his face waxed!  He hasn't lost his thick eyebrows, but they have thinned out.  The funny thing is that there is just a patch of moustache and a patch below his lower lip where the hair still grows. We think those two patches must have also gotten chilled during that marathon two-day ice-eating sessions he did to prevent mouth sores.

To pass the time, we've been binge-watching some British detective series, such as "Hinterland" (love those lilting Welsh accents!), "Broadchurch" (those striking cliffs in Dorset) and "The Fall".  As a welcome change from all the brooding detectives, we started watching "The Marvelous Mrs. Maisel" – which is delightful and has great music. (Thanks to Amy and David for the recommendation!)

Also, Linton spent a number of HOURS figuring out a Magic Eye 3D Illusion Fish puzzle from Gwen – I had given up in frustration after two minutes, but Linton stuck with it. Every time I peeped into the bedroom, there he was, moving small squares of plastic with fish around.  He got it in the end!

P.S. The two sweet dogs in their tartan gear are Leela and Jade -- they're Linton's nephew's and niece's doggies. 

 

 

 

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Comments (8)

  • David Korman
    David Korman

    Thanks so much for the update. Both Amy and I have been hit with the flu. She is handling it much better than I. I missed a few days of work, and still feel pretty lousy. Definitely not the type of persons Linton should be around right now! Although there have been challenges, it appears that things are going well for Linton, and we are thrilled. If we can do anything (without exposing him to our bugs!), please advise. Love and prayers- always. David

    one year ago · Reply
  • monise neumann
    monise neumann

    so happy for the update. Sorry for the side effects of the neuropathy, I am sure it is very uncomfortable. Glad that things are moving in the right direction overall. We will do all we can to send some sunshine from California. Take good care- Monise

    one year ago · Reply
  • Nancy Levine
    Nancy Levine

    I think the obvious conclusion is that Linton likes driving better than showering! A shower chair might help. Perhaps one with a steering wheel.

    one year ago · Reply
    • David Korman
      David Korman

      A brilliant idea .... here's a prototype ... Linton, should I start building? https://drive.google.com/file/d/1TC5BEH28EK1Dls0SUc1ss1ZvFS9uv1YI/view?usp=sharing

      one year ago · Reply
  • misty baker
    misty baker

    So glad to hear that overall things are going well. Hopefully this break in the weather will allow you both to get outside and enjoy some sunshine. Best wishes for continued progress - misty

    one year ago · Reply
  • Warren & Cherrise Levitan
    Warren & Cherrise Levitan

    What an great update Jill, so delighted things are tracking well. So pleased u are able to be together on this journey & it’s fantastic how you are sharing & educating us all at the same time. We look forward to seeing you both on your walks in the fresh air soon. Sending love always 😍😍 ps Warren definitely doesn’t do dishes!!

    one year ago · Reply
  • Muffy Koch
    Muffy Koch

    Wonderful to get this update. You are managing so well and Linton is fighting on. The best news was: " his new stem cell graft has engrafted well in his bone marrow and is consistently producing the full tri-lineage array of blood cells ". Yay! Also happy to hear that Linton is able to drive and a walk outside will be possible soon. 16 March will arrive before you know it.

    one year ago · Reply
  • Sandra Lee
    Sandra Lee

    Our beloved children we are so sorry for your discomfort. You are an amazing team and you will beat this wicked desease with a plumb our love andcaring Is intense because you are vital to us all Your devoted family I

    one year ago · Reply