Saturday, June 25, 2011

A Roller Coaster of Emotions.....

Yesterday, a renowned and well-respected MM Specialist posted that most of his patients have tremendous anxiety about relapse; after the treatment ends (while in remission). He questioned how patients deal with their anxiety during this "new normal" period of their lives. He suggested exercise, meditation, massage, acupuncture, etc. rather than some type of anti-anxiety medication.

Bob tried the "anti-anxiety" medication early on, when it was decided that he was depressed. The medication that was prescribed was also supposed to help with the bone pain he was experiencing. If it helped with the pain, it wasn't enough to notice - and it seemed to do a great job of making him depressed! (Not what we were going for!!)

We are thankful that he is experiencing Near CR (Complete Response or Complete Remission) - some MM patients never do. I've thought about what will happen when the inevitable occurs.....and yes, it probably will, at some point. There is no cure, so Bob's Myeloma can come back. I've read that it's often as if one is hearing the diagnosis, again, for the first time. All those raw emotions return and must be dealt with and handled.

We've just returned home from a long (over 3,300 miles) road trip, and I think all the travelling might have taken its toll on him. He hasn't felt really well, so I rushed him off to the good Doctor H. when we got back on home territory. He's nauseous when he eats, and generally hasn't felt good. But, just like a car that's making a terrible noise - take it to the garage and the darn thing purrs like a cat! Don't you know, when Doctor H. asked him "How are you?" He perked right up, and said "I'm doing great!" And, when Doctor H asked him to get up on the examining table, he looked like he was spring-loaded!  About this time, I'm thinking this doctor is beginning to wonder what's wrong with me! (Since I was the one that made the call stating that he really needed to see the doctor ahead of his normal scheduled appointment!) His blood work looked good, so he really was doing great. The results of the M-Spike take longer, but there's no reason to believe that won't also be good.

I suggested to Doctor H. that maybe I needed to relax a little. I apologized for taking up his time, when Bob was obviously doing so well. (Couldn't he, at least, have acted like he felt bad!!) Of course, the good doctor assured me I'd done the right thing. (What else could he say?)   This "new normal" that we're now living is really hard on both of us. If he's nauseous, or tired, or feels bad - it MUST be the cancer returning. If he hurts, is it back? Is it the cancer returning? I know I've become a little (or a lot) like an old Mother Hen trying to protect her nest. And, I've learned that I need to lighten up and let go - because, when I get concerned, I make him concerned about himself. He asks "Is there something you aren't telling me?"

Late yesterday afternoon, as he was getting ready to fix our dinner (yes, he's doing some of the cooking again!), he suddenly let out a sound that I knew meant pain. I rushed to the kitchen to check on him, and he asked for his "white pill" (Dilaudid). He was in a great deal of pain, in his back, and I was concerned. The "white pill" finally did what it was supposed to do, and the pain subsided. This was the first back pain that he had experienced, since the nerve dennervation (burning).

Today, after a few trips in and out of the house, he was winded and needed to rest, and there was pain;  again, the "white pill" was required.  After awhile the pain subsided, and he felt better. (And, so did I!)

Along with Near CR comes a respite from treatments, but I think I anticipated that it would also mean a respite from pain, feeling bad, and being tired. It would mean that life would be back to normal.....but I quickly learned that it only means we live a different kind of normal.  Our "new normal" is nothing like the "old normal". Life, as we once knew it, has changed considerably.

The renowned MM Specialist is correct - there is anxiety about relapse. It's there the back of our minds, and it hangs over us like dark clouds on a rainy day. It isn't as if we dwell on relapse - actually, we try to forget ......we try to forget that MM has invaded our lives and is now a part of our everyday life. We try to live "normally" - or as normal as possible. Many have lived with this disease, for years, and have been in Near CR, CR, VGPR, etc., so no one knows how long this will last.

Call it anxiety, call it fear, call it reality - or call it a miracle that he is in Near CR ............because many never are. We will enjoy this time of "new normal" or maybe it should be "near normal".


  1. Oh boy, I do understand, Sarah. You know what you need to do but it isn't easy. I hope as the days turn into weeks and then into months and years that both you and Bob are able to fully enjoy the gift of Near CR. And don't fret about using those 'white pills' whenever they're needed. That's what they're there for.

  2. Diann: It's such a hard balancing act knowing when to help and when to back away. I've got to get thru what I call the "cautionary phase", where I have the tendency to tell him to "be careful", "don't fall", etc. I'm working to let him be normal!!

    Hugs to you!


  3. Sarah,
    I understand the anxiety completely. I just passed the six month anniversary of my transplant. For 3 months post transplant, my bloodwork was still showing a faint M-spike. Then, I started maintenance therapy with Revlimid. Miraculously, after 2 months of Revlimid, the M-spike disappeared. I had reached CR. However, the Revlimid is wreaking havoc on my blood counts. Despite a lowered dose, my platelets dropped to 42 last week. Needless to say, the Revlimid is on hold until we recheck the counts this week. My anxiety level has doubled in the past few days. I'm convinced that it was the Revlimid that got me to CR and now that it is on hold, I am so afraid I will lose that status. I have 3 children and a full time job that keep my mind occupied, but that feeling of "what if" is always present.

    Congratulations on Bob's good reports. May they continue indefinately.


  4. B tells me to be careful doing stuff - unless of course that stuff is getting his breakfast, dinner or tea! :D