Sunday, January 30, 2011

This is the way it's going to be.......

It has been 48 hours since Bob's first injection on Friday morning, and he is experiencing very little discomfort. I've only had to pull out the "break-through" drugs once or twice! He has no steroids
in his body, other than the ones injected into his spine, so we know we're on the verge of success!

It would be unreasonable to think he would have no pain. At our age, these old bones are just going to hurt! Add the effects of Multiple Myeloma on the bones, plus the side effects of Chemo and other medications, and it becomes like the never-ending pain from an abscessed tooth.

I can now vehemently disagree with the "on-call" oncologist. The one that told us "He has Multiple Myeloma - this is the way it's going to be." I'm seeing that it doesn't have to be "this way".  This is the very reason that patients, and caregivers, have to be aware of what's available and manage their own care. As was pointed out by Dr. H., a Myeloma Specialist in Ohio, there are too many options available. Admittedly, we had tried several that weren't working, and I have leftover drugs to prove it! Finally, after many drugs had been tried without success, I requested a Pain Management Specialist. Had we done that sooner, rather than later, we might have avoided many nights of pain and anguish, and trips to the ER!

How happy I am that we won't be having to make those late night trips again anytime soon. It seems that unrelenting, uncontrollable pain has a built-in clock and knows when night time arrives. I'm tired of having ER doctors, unaware of the pains of Multiple Myeloma, treating us as if we were just there for another "fix". Amazing that medical schools don't have a course on empathy or bedside manner! 

Just the fact that he has cancer is nerve-wracking without having the added stress of dealing with excruciating pain and the complications. We work at staying positive and having a "mind over matter" attitude, and it becomes much easier when we only need to focus on the cancer and nothing else.

Injection number two will occur on Wednesday, and he could be pain-free for as much as twelve to eighteen months. Hopefully, "this is the way it's going to be"!!



  1. Sarah, you are SO RIGHT about patients (or their loving caregivers like you) having to manage their own care. You have to be your OWN "project" manager, you absolutely cannot rely on any one doctor to fill that role for you. Even the best-intentioned doctor, doesn't know YOUR body or really relate to what YOU need. Boy, how we learned that with my Dad's cancer, and again with my Mom and her 'simple' blood pressure & heart issues. She has really learned to speak up on her own behalf, although sometimes I have to stand behind and be her 'cheerleader' to give her the confidence to look these doctors in the face and say, "That's not good enough!"

    Don't ever be afraid to speak up and be your own body's advocate (or Bob's), because you are the most qualified, period. Bless you for being the devoted and loving wife that you are to your "honey". You're both so lucky to have each other.

    Love, Suzanne

  2. Suz: We're so lucky to have a great Oncologist, but we've really had to "butt heads" with some of the others we've met.

    Thanks for your vote of confidence!