I'm still here!! Update Part 1

Hey all!!  First off, I am so, so sorry that I haven't updated since November.  November!!  That's crazy!  I'll try my best to rewind my mind to December and go on from there... hopefully it'll be somewhat brief.  I had a CT scan done right before Christmas and the results were slightly different than my previous one.  The main mediastinal mass hadn't changed much, but I had two new spots... one on each upper lobe of my lungs.  My doctor wasn't concerned about them, so I decided not to be either.  We also decided to push my scans a little farther apart to reduce my exposure to radiation.  I continued on with the Opdivo with little to no side effects, which was pretty great.  I believe it was in February sometime when I saw my doctor again and he informed me that he was leaving the cancer center, and that it was not his choice.  To say that I was bummed and pissed off would be a pretty big understatement.  He was the one that I started this whole ride with almost five years ago, and I didn't want to transfer care to someone else.  But, of course, I had no choice.  So thanks to whoever made that decision, or whatever hospital politics dictated it, you suck.  I at least got to keep him until April, right before my next scan.  I bought him a card and a few smartass gifts because I knew he was bummed, and I wanted him to know how much I appreciated everything he's done for my family and I.

So, right after he left I had another CT scan.  When I went in for treatment and to have it reviewed with me I got a little more nervous because the spot on the upper lobe of my left lung had increased.  It was considered to be a partial response to treatment at that point.  The radiologist that read it said it didn't look "neoplastic" in nature, so I took that as a good sign and tried to brush it off.  I also read some subsequent articles online about "pseudo-progression" while on Opdivo that made me feel better.  So on we went, continued treatment every two weeks with plans to stop once I hit a year in June, (oh yeah, and no new oncologist until May).  Honestly that wan't too bad, I love all the ladies at the cancer center... I just missed my doctor.  And I'll take this opportunity to mention that I also FINALLY re-certified my EMT license during all this crap!  :)

On to May... and I'm going to try to be nice in my next little section here... I met my new doctor.  Overall he seems like he's a pretty nice guy, seemed happy to be there, very friendly and all that.  But I don't think he was prepared for me, LOL.  He started talking about an allogeneic (from a donor) stem cell transplant and clinical trials right off the bat because I'm "so young".  When I said it was a last resort, I don't think it was the answer he was looking for.  He asked my reasons why, so I told him specifically about the studies I've read and the increased risks for Graft Versus Host Disease when having an allo transplant after being on Opdivo, not to mention that I felt good at the time, so why would I want to subject myself to that hell again for a 30% cure rate?  I asked about switching from Opdivo to Keytruda (another immunotherapy) and he didn't have an answer for me.  He wanted to know what my background was.  HA!!  I wasn't being an asshole either, I was just asking specific questions that I would have asked my previous doctor, and he wasn't ready for me.  He just got more condescending as the appointment went on.  But I digress... I finished treatment on June 27th, and got to ring the little bell and all signifying the end of my treatment and was set up for a CT scan on July 20th.  By that point I had been feeling like complete shit for a while (I'll get into it in the second half of my update).  Went in to have my scan read and the spots on my lungs were gone!  YAY!!  My scan looked stable for the first time in ages.  But by then I knew there was something else wrong.

I'll forewarn anyone that is going to read the second half of my update (which I will hopefully have up in a couple of days, not months! lol) that I'm going to RANT.  I'm not naming any names, I'm not going to acknowledge any comments asking for specifics, if you're that curious you can message me and I'll do my best to answer questions.  And I'm going to swear, possibly a lot.  So... for anyone offended by that, you've been warned!!  This is my therapy, and I need to get it out for my own mental health.  LOL

Thanks again to everyone for all your prayers, positive thoughts and vibes, I really appreciate it!!!  So much for this being breif!  :)  XOXO