SCT Day 95 – wow – day 95!

When life gets pseudo-normal, my blogging falls into a dark hole.  I’ve not had good experience with other blogs.  When I first got diagnosed it was my primary reference point to answer some initial questions.  Of course then I ran into that blog that stopped publishing…not because life went back to normal.  That’s the bitch of this disease…as good as I feel there are others that are not feeling good.

But I don’t want this to be a depressing post (guess I already started that!)  I’m at Day 95 and I go in for my bone marrow biopsy next Wednesday (along with a Zometa treatment and an MRI).  I returned to work two weeks ago and that was rather anti-climactic.  Between the return to work and my son’s baseball season kicking into gear we’ve been fairly busy, hence the lack of updates.  I joined twitter to promote my “Global Hair Loss” (and the markets aren’t closed on that front – if you want to donate you still can!)  I’ve developed a small number of followers but they are asking where I am and what’s up!  Thank you to my twitter verse!

Getting back to work is interesting.  I’m away from the bulk of our group but when I go to the pantry (you have to see our office to understand “the pantry”), which IS the front entrance of the building, it can be difficult to get back out!  First, I don’t get recognized much (massive change in hair style will do that) but when you do get recognized you have, in I Love Lucy terms, “some shplainin to do.”  You can spend 20 minutes talking about what’s been going on when someone else walks up, which means another 20 minutes.  I don’t want to sound angry about this – that’s not the case at all, I just have been out for 3 months and if I spend all my time in the pantry I feel like someone will be mad!

But I feel worst for the people that don’t know and can’t figure out a way to ask and then realize what’s going on and can’t figure out a way to stop talking!  I was asked if I was “doing a lot of swimming” and I replied, “no, but everything’s ok and the hair is coming back” – it just went downhill from there.  I had someone else say, “I didn’t recognize you” and I replied, “shorter hair cut” (in my mind jokingly) and their response was, “me too” – I don’t think they got that.

On a technical stance – I’m good – all numbers (CBC, etc.) are good.  My Immunofixation numbers are actually low (below normal low) and there’s no m-spike or trace of the disease.  The biopsy will give me a deep-dive and really confirm how good I’m doing from that perspective.  Regarding the “internals”, at my 17 April visit with the doc I explained that it’s not all back to “normal” it’s working but if I’m outside somewhere and need to go I really NEED TO GO!  His response was simply, oh, take a pro-biotic.  Not the one with yeast but the one with (and this took me awhile to pronounce correctly) acidophilopholous.  Could I have known about that 30 days ago???

Sleep is still drug-induced (Halcion) but working.  I tried last Friday to do without and woke up at 4a.  Granted, I was up today at 530 but it sill feels different.  I think I need to do “without” for a few days to really confirm it’s not working.  I’m waiting till after the BMB before I decide when to try this again.  I’m also still doing the acupuncture to work on the P/N.  My biggest concern right now is the inability to do a rushed walk.  If I try my left leg (on side, about calf down) cramps up and hurts.  The doc is working on this to see how we can needle and electrify this thing out of there.  I’m also trying to do massage when I can but I just don’t have time! :)

I’ll leave everyone with my “hair status”!

(my twitter verse already saw this one! :)