Impatient and Smoldering

Mountains and molehills

I understand that these  entry might not be up everyone alley so you may chose not to read it, this entry is peppered with LOTS of medical terminology, so for more of the lesser known ones I have include a link in case you want to know exactly what Multiple Myeloma is.

The other day I was sitting in the car and I thought to myself I have been ill more years that I have been “healthy” I guess on some level I was aware of that, but it really, really took me for a loop, and it got me to thinking, “Do I even remember what it is to be really healthy”.  I think being a two time transplant recipient you really learn about being patient with your body and learning that gratitude comes in all forms. But I admit there are times when I’m not all that grateful, there are times when I’m down right sullen and frankly pissed off that I got totally screwed in the genetic lottery. I often wonder what the hell I did I do in a pats life to make me honestly “the sickest person” I know.

There was a specific reason that I set up this section in my blog, I wanted a venue where I could vent and maybe educate and possibly connect with other who are dealing with the same thing that I was. The reason why this section is called Mountains an Molehills is simple, there are days that are really difficult and it feels like I’m climbing mountains just to get through the day, and others are a lot easier and I simply have to climb over molehills.

Well initially I was diagnosed with MGUS and at the time I simply thought, okay what else is new? I have some weird thing floating around my body… no one knows how I got it… this is totally you Tyra… you always end up with the weird stuff, after a lot more test they moved me up to smouldering; and I was like okay, I an totally deal with smouldering, considering the fact that I was laying up in ICU getting having my TPA to address the blood clot that chilling out underneath my heart and my angioplasties to address the narrowings that caused the blood clot that were nearly the  size of my palm (guess that’s why I gained over 100+ pounds…) so you can imagine all dealing with all of these issues, something in my body that was just there and not really doing anything that was not on the front burner… so my team instituted the “Watch and See Method” since my PET Scan, Bone Survey came back normal and showed no bone lesions, just my protein was elevated, and my renal levels were not good (to the point where I am now classified as having chronic renal impairment) and I wasn’t showing any outward symptoms of myeloma…. that was August.

Fast Forward to April ….renal functions have greatly improved to the point where they are normal (although I am still listed as having the CRI), same with hepatic functions.. organs are fine, I’m on very small dosages of anti-rejection medications, on a small dose of warfarin, no occurrence of blood clots… everything is great… so naturally it was seem to be the perfect time for the myeloma to start coming out protein levels have increased, there is a slight change in my bone density scan an have become severely anemic over in the past month (even though I take prescription grade iron supplement twice a day), I’m starting to become so fatigued and tired that there are days when getting up to go to the bathroom really just wipes me out, for the past two weeks, I have been limited my activity to one day because I seriously use the other six to sleep and store enough energy so that I can have at least one day to act like a normal human being. My hair has fallen out and recently I’ve been having low grade fevers every night…. in short I’m a mess

One of the major things that I’m dealing with is the fact that although the information is there, it’s very difficult for me to apply it to myself… 99% of what I read talks about the effects and the life expectancy of people much older than me, it’s hard to apply it to a person who’s 35-36 year old… you know the 1% of patients who get it… Another thing that is really bothering me is this wait and see method… it’s clear I’m progressing, my doctors know it… but I think this issue is when to start treatment, if it was up to me it would have started the day I was diagnosed. I’m not used to having something wrong with me and not being able to do something about it. I’m afraid that we may wait too long and whatever damage the myeloma causes will be irreversible

Joseph Mikhael, Mayo Clinic Arizona Myeloma Group, offered an analogy in a video which really resonated with me. He described the MM spectrum as having 3 buckets…1 for MGUS, 1 for SMM and 1 for MM.. once the MGUS bucket is full, it starts spilling into the SMM bucket, but the SMM bucket needs to fill completely before it starts spilling into the MM bucket. SMM is the Goldilocks of the MM spectrum. It is not quite MGUS (too cold/too small), and not quite MM (too hot/too big), but SMM is “just” smoldering.

Being patient is not a strong suit of mine, but right now I am learning to be patient and I continue to wait and see, today I felt like I had to climb a mountain… tomorrow let’s hope it’s just a tiny molehill…

Until Next Time

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