Sunday, June 24, 2012

It's our life.....

I read a post on another caregiver's blog.....she's taking a break and stepping away from blogging, for a bit, and I guess that's what I've done. We care 24/7 for someone with cancer. We don't know, exactly, how our patient feels.....but we can see by the grimace on their face, or hear the heavy breathing, and know the pain is there. We feel the pain of being unable to do anything, except offer the medications they've been given .....and hope that they find relief, if only for a short while.

In early April, my honey had his 2nd Spinal Lumbar Radio Frequency Dennervation (nerve burning) or RFD for short. The first one in February, 2011 worked wonders and helped to assuage some of the pain, in his back.  The RFD can be effective for 12 - 18 months, and can only be done once per year. By the end of this past January, we knew that the procedure was going to be necessary a 2nd time, and we held out great hopes that it would be as effective as the first one. Unfortunately, it seems that it isn't working as well this time. Thankfully, he has his "little blue pills and little white pills" that make the pain a little more manageable.

He also has ostopenia/osteoporosis which has been made worse by the MM. Standing too long, or walking too much, causes great pain. He's now on CO-Q-10 and a nasal spray, which are both supposed to be helpful in treating far, no luck.

He has been on steroids for many months, and Dr. H. decided to give him a break. The oral dosage, plus the steroid injections in his back, have played havoc not only with his blood glucose but also with his emotions, and just his feelings in general. I had begun to assume that was the culprit so was very happy when the decision was made to suspend them, for awhile. Unlike most MM patients, the Dex never seemed to affect his ability to sleep!  LOL

He's been in remission (or Complete Response, as it's called) since the fall of 2011, but has continued to be on a maintenance dose of Revlimid. Because he constantly feels bad (like someone with the flu), Dr. H. gave permission to stop his Chemo for awhile....or until his M-Spike begins to edge back up. (It would be great if that never happened and miracles do occur, but it's highly unlikely). Dr. H. thought it unlikely that the Revlimid was the reason for his never feeling good, and I'm sure he's probably right since my honey felt bad way before Revlimid became a part of his life. He's had tests, of all sorts, and everything seems to be fine.....other than the fact......he has cancer,  feels bad, and of course...the pain.

It's frustrating. It's often depressing. It can be debilitating. It's Multiple Myeloma.

He tries, extremely hard, to "continue with life"......but he spends lots of time, in his recliner resting and/or sleeping. This is the "new normal" that MM patients, and their caregivers, learn to live with. 

Tuesday, he sees Dr. H at the Cancer Center and he will have been off Revlimid for one month and Dex for over two months. Hoping and praying that his M-Spike is still zero so his vacation from treatment can continue.

It's frustrating. It's often depressing. It can be debilitating. It's Multiple Myeloma. It's our life, and we're still thankful for each and every day.


  1. Well said Sarah, heartfelt words for sure. Hugs-

  2. :-( Sounds awful.And heartbreaking that he tries to live life as normal but the silly cancer doesn't really allow it.I pray the M-Spike shows no progression so the break can continue.If nothing else, even if the discomfort he's feeling doesn't dissipate,I'm sure his body will welcome the break from the meds.Hoping for good results.

  3. Thandi:'s really frustrating. How we had hoped that remission came with some normalcy....but not so.

    I'm still very thankful for each and every day.

  4. Rene: I'm thankful for each day that I still have many are not as lucky.


  5. It seems that once you have MM the fatigue never goes away, even if you are in CR. I blamed my husband's fatigue on the fact that he was not responding to the chemo treatments. Yet now I hear other patients complain about the same thing even though they are responding to treatments.

    I feel your pain, Sarah.

    1. Shelley: Even though Bob responded to both the Velcade/Dex and now the Rev/Dex, the fatigue has always been present.

      It's just a fact of life.


  6. sarah,

    i do so hope that the break from the chemo will allow bob to feel better; as a CG, i know how heartbreaking it is to witness your honey having pain each and every day. the longs periods needed to rest and sleep are also very difficult - one feels so lonely at times. i try to have a list of things to occupy myself with, and sometimes it does me good, but other times i feel unmotivated - i just want to be with hugh, and feel we are together. i will be BELIEVING for you both that the M-spike will stay stable, and that bob can gain ground in his level of comfort. please just know that you are not alone, and that your words, written so honestly and so heartfelt helps others who are going through the same thing. warm hugs, karen

    1. Karen: First things first....Bob's M-Spike stayed put! I'll be doing another post, later today.

      There are times, as a caregiver that it gets so frustrating, because our lives have undergone such a change. I've certainly learned that we aren't alone.

      I understand, too, your comment about wanting to be with Hugh....just as I want to be with Bob. Often, as he sits...I sit and find myself spending lots of laptop time.

      Hugs to you....

  7. Similar story here except that we know the Rev / Dex regime is to maintain a plateau rather than because he is in complete remission. I really wish he (we!)could have a break from Rev and Dex because of the rollercoaster effect, but that doesn't seem to be an option. We were just discussing our "new normal" yesterday, and it's not what we expected but at least he's still here, against the odds! It's OK. He's OK. We're OK. And that's as good as it gets!
    Thanks for posting - good to know there are others just getting on with it!

    1. Roo: Not what we expected, either...but like you...just thankful that he's still here (like your FL).

      Thankful for everyday.....even though I'd rather it just be "normal" instead of "new normal".

      Hugs from ATP (Across the Pond).....

  8. Hi Sarah,

    I came across your blog while researching treatment for relapsed myeloma, and i just wanted to tell you how much i can relate to your story. So many times i come across other peoples success stories, which just makes me worry so much more abut my father, you could be writing about him-its exactly how it is for those unfortunate enough to go through this type of cancer, and how spot on your description of being in remission is really like for them.
    I wish you and your husband all the best in this difficult life changing event...


  9. Debbie: Remission certainly wasn't what we expected. We both imagined that everything would be okay, and back to "normal" - instead of this "new normal".

    I hope your dad is okay. Sounds as if he has a wonderful daughter who loves him, dearly.

    Things change daily with this terrible disease - so I never know from one day to the next how Bob will be when he awakens. We can only hang in there and be thankful for every day we have with them.