My husband has MDS & preparing for stem cell transplant

Hatmaker510 Member Posts: 3

Hi all,

This is my first post here and I'm happy I found this place.  (Is there also a chat room for us caregivers?)  Anyway, my husband Brian was diagnosed with Myelodysplastic Syndrome (MDS) in June.  We just found out this week that one of his sisters is a FULL match for a bone marrow/stem cell transplant. (Which is clearly a GREAT thing!) He's already been undergoing chemo and unfortunately currently he's got a small infection.  I've been staying home with him just making sure his temperature doesn't spike again.  You all know how it is when our loved ones have no immune system.  It can be darn scary!

One of the things I hate the most is not knowing what's happening next and not having any control over things!  He does one more round of chemo starting Monday, then another bone marrow biopsy and if that comes out "good" (whatever that means), then we move forward. 

We have to do all this almost two hours away at Moffitt Cancer Center (the transplant and many of the tests before that) and following the transplant we will have to live within 20 minutes of Moffitt for up to 90 days.  That means paying for our home and a second home in Tampa.  So naturally we set up a GoFundMe page and are hoping for some help from our family and friends.   

I think I'm still going through the anger and sadness - well, more like depression than just sadness.  I don't have time to worry about being depressed!  I have to worry about him! 

How do all of you do it??  And the hard stuff hasn't even begun for me yet!  People have told me to just take it one day at a time.  Is that really the way to do it? 

If you made it all the way through this post, I thank you. 



  • ClaCla
    ClaCla Member Posts: 136
    edited August 2017 #2

    Sorry for what you are going through.  I'm pretty new to this website too, and have found it invaluable.  I am the patient rather than the caregiver, but from what I've seen, the main chatroom is for both patients and caregivers, as are the Cancer Specific Discussion Boards. Whether patient or caregiver, we are all in this together, so be sure to use those tools also.  Frankly I think it's harder for the caregivers for all kinds of reasons.  So wanted to say God bless you, and keep poking around the web site til you find friends who are going to be invaluable to you here. 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited August 2017 #3

    How do we get through this? Sometimes it's one day at a time. Sometimes an hour... Or a breath... At a time.


    Try to remember to take care of yourself, laugh as you can, exercise, eat well, try to sleep enough. If you can connect with friends, do. You'll find many places have caregivers' support groups. Ask where the treatment is, ask where your medical group is. 

    You'll find as you go along that there are indeed some things you can control. There are other things where holding back the tide would be easier. Most of all - as one of the guys in the cancer-specific forum I frequent says - remember we're not dying from cancer, we're living with it. Remember to live. 

    I've been both a caregiver and a patient, fortunately not at the same time. They both have their down sides, as well as their perks, and it's true that some days you've really got to stretch to find even one perk. But they're there. Keep us posted as you're able. Hugs. 

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    Welcome to CSN

    Hi M-Hat,

    Glad you finally joined this great group of supporters and patients.  Having a rare cancer is a tough one so I'm sorry you don't have your own category here to get more feedback from.  The Rare Cancers help but with your husbands diagnosis it will be hard to find a few who know what the disease does exactly.

    You know how to get a hold of me and I truly hope you two can get through this okay.  Being a Caregiver is a lot of times harder than being the patient.  Not with the pain and discomfort but with the mental stress dealing with trying to help him feel better and get him to and from all the appt's.  Plus you dealing with your own physical illness's. Be strong and lean on whover will listen.  Call me anytime.


  • Hatmaker510
    Hatmaker510 Member Posts: 3
    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




  • ClaCla
    ClaCla Member Posts: 136
    Hat -- Don't Apologize for Venting

    Hat, this is a great place to vent.  I'm glad you found it.  A cancer or caregiver support group in your area might be beneficial also.  God bless.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    At the medical center...

    Along with all of the other programs, they have case managers, social workers, and chaplains - all of whom can help you walk with and/or through your anger. 

    As for when will he start taking responsibility for what he says? No telling. Let him get past the chemo brain first (How long - also "No telling"). When I was caregiving, I did my best to let the family member I was looking after take the role of Mr or Ms Crabby-Pants and did my best not to be the understudy, but there were days... It's a tough gig, with or without hurricanes. 

    Hang in there. Keep us posted as you're able. Hugs. 

  • jorola
    jorola Member Posts: 243 Member
    There is the chat room on here

    We are a mix of caregivers and survivors and those in active treatment. It is a great bunch of supportive people and we all work well together. We do serious talk and sometimes just laugh our butts off at the silliest of things. Come visit anytime. The chatroom is busiest between 8 and 10 pm est every night. Hope to see you there.

    Jodie - fellow caregiver