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Thread: Dad with MM

  1. #1
    Newbie New User
    Join Date
    Mar 2014
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    Dad with MM

    December 2012, my dad started complaining about a sore back. Countless visits to the family doctor, chiropractor, even the emergency room and nobody came up with an explanation other than "your back is strained" or "you put your back out." So from December 2012 until end of April 2012, he had days of terrible pain and days where he was fine. Then in May 2012, he had some blood work done and was told he needed to be admitted to the hospital because his kidneys were failing.

    So into the hospital he went. He ended up having dialysis every day. Then into June he was down to 2 times a week. His back was still very painful, sometimes so painful I thought he was going to pass out. My dad is super tough and I'd never seen him in such pain. Finally the doctors figured out he had Multiple Myeloma.

    Initially we were given the usually information booklets about MM. Our Cancer doctor didn't really scare us, was actually quite optimistic. In July my dad was released from the hospital. Chemo appointments were made and he still needed dialysis 3 times a week. The MM had cause 2 vertebrae in his spine to break - -the cause of the pain. Pain management was not that great. Some days he was good, some days the pain was brutal. So the drs. would increase the pain meds, but with the kidneys not working properly, he'd get really high and have hallucinations. So then you'd cut back a little on the pain meds, and he couldn't stand the pain.

    By August, by some miracle, his kidneys started working. Still today he does not require dialysis. So this was a real bonus for us.

    So, the rest of the summer was okay, so up and downs, but at least he was able to get a around on his own. September he went back into the hospital again. Drs were having a hard time managing his pain. Again, he wouldn't have any pain for days, then he'd be in terrible pain. Trying to figure out his meds was very tricky.

    In November he underwent a procedure called Khyphoplasty. Turns out that when his spine was xrayed again, he had 3 lower vertebrae that were broken/crushed. The Khyphplasty surgery was to help these 3 vertebrae (the surgery allows doctors to put in bone cement to help build up the broken vertebrae - thus alleviating the spine/bone pain.) It was somewhat successful.

    So from September to November, he was able to get around some days and other days he couldn't move. The muscles in his legs and arms were starting to deteriorate due to the lack of movement.

    In December, still in the hospital, my dad contracted pneumonia. He recovered fairly quickly. By the end of January, he was back to walking (very slowly with a walker) small distances and was able to work with the physiotherapist on a daily basis. By the end of January 2014, medically he was good, physically he required help. He insisted that he wanted to be discharged and try being at home. So he went home on Feb. 4. He was back in the hospital on Feb. 9. Being at home did not work for many reasons.

    So, now he is back in the hospital. We are waiting for a placement elsewhere that should be able to help him more than what he's getting now. Again, on paper, he looks okay -vitals are good, blood work is okay, kidney function ok, MM is under control (Velcade + steroids seem to be effective). He has pneumonia again is is recovering very slowly this time. His leg muscles are pretty much gone - he cannot stand on his own and it's very difficult for his to stand with a walker (he does it because he's so stubborn and refuses to admit defeat).

    Every time there seems to be some kind of good news, he's hit with something else. It's been and up and down ride since May 2013 til January 2014. Since January, his health seems to be getting worse a lot quicker. At times, he's fed up and absolutely exhausted and says he can't take anymore. Other days he's optimistic. Is this was I am to expect from now on - a slow downhill slide until his body falls apart/until nothing works anymore?

    Comments? Words of wisdom? Is this what I have to expect from here on out?

  2. #2
    Hi lola,

    Welcome to the forum. I wanted to reply to you because I see that you haven't gotten a response as of yet. While I unfortunately cannot answer your specific questions, I do want to just say that I'm sorry that your dad is going through all this, and I do understand. My dad had pancreatic cancer and I watched him suffer, a bit differently, but still had to see him go through some terrible, terrible things with cancer. So, I understand and because of that, I'm very sorry.

    I hope someone with experience with MM will be able to give you some insight, and I hope that things look up for your dad. Hang in there.

    Debbie
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  3. #3
    Newbie New User
    Join Date
    Mar 2014
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    Thanks for your kind words Debbie.

    I can't be with my dad every day. I feel very guilty that I am not there all the time (I have to work). I also feel very guilty when I go out with friends because I know my dad isn't well enough to go anywhere and do anything.
    Are there other who feel the same way? How do you cope with that?

  4. #4
    Oh gosh, I'm sure there are many of us that feel this way. I felt it often when my dad was still here. But it comes down to this...what would your dad want? He would want you to get out there and live, but I'm sure he appreciates everything you do for him more than you can imagine. And...you deserve that break every now and then. I know it doesn't seem fair since he doesn't get a break, but in order for you to continue taking care of him, you need to take care of yourself as well!

    Hugs!
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

 

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