Tuesday, September 27, 2016

Arthritis, neuropathy or what

My doctors are great. I have an amzing team. Berenson comes up with the chemo regimen that keeps me going. Phan is my go to hemotologist for having longer conversations about what I've got going on. They don't ever talk to each other. Berenson is keeping me on the same maintenance I've been doing for two years. He doesn't discuss change. Phan on the other hand has been prepping me for a change. It's inevitable, really.  And with some of my recent lab results changes, a new regimen may be closer than it once was. That's fine.  But we want to squeeze every last successful bit of the current treatment. In fact over the past two months my kidneys have been better than ever. Which is why Dr B says there is no need to even talk change. 

I've been fortunate. I haven't had neuropathy issues in the five plus years since diagnosis. With treanda (bendamustine) I did experience minor neuropathy. I simply had a loss of sensation in my fingers. No pain and feeling came back as soon as I stopped the drug.

Over the past few months I been getting more aches and pains in my joints and legs and hands.  It hasn't been bad and I chalked it up to age, Kilimanjaro training, and a side effect from dex. Lately though the pain has intesified, usually at night and when I wake up.  I mentioned this to Berenson last week and he quickly chalked it up to arthritis, and not at all related to the myeloma.  Today I saw Phan and I talked more about the aches. He ruled out arthritis immediately and said it is obviously is neuropathy. He said I am too young to have arthritis all over my body.

I thought neuropathy was mostly tingling, numbness and pain in hands and feet. "Nope" says Phan. Can also be joint and muscle pain caused by nerve damage.  I have been getting velcade through my port.  It's typically now given sub q...a shot in the belly.  The sub q is supposed to lessen the velcade induced neuropathy. Up until today I have passed on sub q. The infusion has been working fine.  But today we switched to sub q, assuming my pain is neuropathy.  We shall see.

I also have the mystery bruise and soreness in my right arm.  Both docs say my bones are fine and not to worry.  Phan today suggested we do a bone survey to be sure they're good. It's been well over a year since the most recent survey.  Phan also said we'd do some kind of liver enzyme test to determine if my muscles are breaking down. I know Pat K would discuss how dex impacted muscles.

We'll do the tests, continue with sub q velcade, throw yoga into the mix and keep working to take control of the aches.

Monday, September 26, 2016

Mystery bruise

Low platelets, blood thinners and being a klutz leads to bruising. Most aren't that bad and most I have no idea how I got.  This one?  Don't know what happened. But kind of nasty looking. Wtf

And on it goes..

Saw Berenson Friday. He's happy. My kidney function is improving every month. That's a great thing. My myeloma numbers are not as good as they were several months ago, but not to worry says the doctor. Maintenance continues. Tuesday is day 1 of a new cycle. Velcade, dex, revlimid.

I'm still training for Kilimanjaro. I can unequivocally state that it is the hardest thing I have ever trained for. It's not the mountain's fault. It's my body. There's the myeloma, anemia, fatigue and sore joints. I asked Dr B about my achy joints. I haven't had any bone issues from myeloma. He's thinking it could be arthritis that's impacting me. From the bottom moving up...feet, ankles, knees,, hips, hands, elbows and shoulder all ache, almost daily. If you remember the movie North Dallas Forty, Nick Nolte was a an aging football player who struggled with pain every day getting out of pain. That is me. It makes training super difficult. But I'm up for the challenge. No turning back now. Also note that I'm at $9,500 in fund raising. It's not too late to give! Any amount helps.

I will be following up with other doctors, including Phan, on what is up with the aches and pains. Popping pain pills is hopefully not in my future.

I've said it before, myeloma has fast forwarded me into being an 80 year old man. I grunt. I struggle getting in and out of cars that sit too low. I need frequent bathroom breaks. My memory sucks.

But!!  I'll be 55 soon and I'm feeling pretty darn good.

Tuesday, September 20, 2016

I Won't Apologize for Having Fun While Chronically Ill

As I prepare to wind down on my career so I can enjoy life and take care of my health the way I should be, I find this story to be quite appropriate and accurate.


Saturday, September 3, 2016


3.01 is my latest creatinine number. It's a measure of kidney health and function. The lower the number the better the kidneys are, meaning the myeloma is under control. 3.01 is easily the lowest my creatinine has been since I was diagnosed. This trounces the previous best by 8%. So the myeloma is calm. My stress over recent changes could be pointless.  Good news and a reminder to stay calm and listen to Berenson.  

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