My husband has MDS & preparing for stem cell transplant

Getting closer and closer

Thank you all for reaching out to me. It means more than you know.  This week we spent two full days at the cancer center 90 min or so away from home.  Tomorrow morning we check out and return home - thankfully.  These two days were exhausting.  It's 5:31 pm and we're just waiting on dinner now (first meal of the day).  I would have replied sooner, but I expected to recieve emails when a reply came in, but I never got any.  

Since I first posted, my husband has had two separate transfusions - they are getting closer and closer together.  Next week we come back again for two more days of testing.  Oh and we lived through hurricane Irma!  But let me tell you, living with this AND through that effing hurricane simultaneously was not fun, to say the least!!! (But we did make it with little damage).  The following week we go in one last time for his central line placement (OP surgery) and then he's admitted on Saturday, the 30th.  I plan to stay with him in the hospital the entire month.  They have a sofa bed there for me and they are completely fine with that.

After he's discharged, we're required to live in nearby housing for about 2+ months before we get to go home.  Last night I made a firm committment to quit smoking for him.  After being a smoker - and I do mean a very dedicated smoker, since I was 17 and I'm 52 now.  Just the thought of it feels like someone wants to cut off my right arm.  That said, I'm more than willing to do it considering my smoking around him could literally destroy his fragile lungs and kill him.  I'll do anything to save him.  Not that it will be easy - I know it won't - but I'll do it.  And lucky for me the hospital as a cessation program, accupuncture, meditation, yoga, and even more.  Every bit of which I'll take advantage of.  Oh and when he loses his hair from the 4-day "conditioning" (such a nice word to use when they nuke the crap out of him), I plan to shave my head as well, as a sign of solidarity.  Honestly though, I always wanted to! LOL

Now comes something that's frustrating me and making me pretty angry.  He's not himself, partially due to his general reaction to having cancer, and partially due to that lovely term called "chemo brain".  To me that means his words and actions can't be totally blamed on him - he can't control it totally.  At least that's what's been told or explained to me.   There are times when he gets very angry and yes, takes it out on me.  And most of the time I can remain calm, lay down, and take it (even though that's never been a part of my nature).  It feels like it's getting more frequent and that I'm simply just "not allowed" to get angry back or "defend" myself.  Usually I can manage that, but seriously, when will he begin to take responsibility for his words and actions again?  When will he be held accountable for his treatment of me?  When am I allowed to stand up for myself again?  Like I said, being treated shabbily is very much not in my nature, it never has been, but I'm managing it for him, because I love him that much and I know he needs that right now.  So where do I put my own anger?  Right here on this page, I guess as well as the rest of my support system, such as it is. It just feels so very lonely.  He is/was my best friend and I feel that I can no longer share things - or everything - with him.  When times come and I get pessimistic or grumpy, I must fake it - he simply cannot see that from me.

This situation and cancer just both suck! 

Thanks to each and every one of you for reading through this entire (very, very long) post.  I think most of it is just boring and me venting.  But even that, knowing people are out there with compassion and understanding in a situation such as this helps so much.  I feel better just for having gotten some of this off my chest, so to speak. 

Thanks again....Until next time ~ Hatmaker