Friday, April 15, 2011

Until it ends.....

"When the deep purple falls over sleepy garden walls
And the stars begin to twinkle in the sky—
In the mist of a memory you wander back to me
Breathing my name with a sigh..."

For some reason, everytime I walk around to the side of our house, when the purple Iris are blooming; this old song pops into my head. And, since this became popular in the late 1930s, I'm really aging myself. Not that I was around in the 1930s, but it certainly isn't the music being played today!

I hate yard work, but I do love these flowers. I'm just so sad that they bloom for such a short time. When we would visit Bob's mom, she'd always take us into the yard to "see my Iris". It took years, but I finally understand!!

Bob is getting better, and better. He's still going through  Cycle Two, Round One of his Chemo. Dr. H. will have him complete this round to ensure that the MM has been chased away, for awhile. Folks ask, "If he's in remission, why is he still taking Chemo?" And, that's why make sure that the Myeloma cells are eradicated.

No one knows how long remission will last - what we do know is that the cancer will, one day again, rear its ugly head. We're just so happy that remission has been accomplished, in only six months! Bob continues to ask "Why did it happen so quickly?" I think there are several reasons: great doctors, the correct protocol, and many, many prayers. (And, I worried a lot!! That must count for something in the scheme of things.)

When I look back, at the memory book in my mind and at the notes I kept, I'm amazed at how much he/we went through in just six months. Surgeries, infections, pain, pain, and more pain ...but there are other MM patients  that experienced so much much worse....than Bob. (Like the old proverb, "I cried because I had no shoes, until I met a man who had no feet"). How grateful we are that those days, for the most part, are behind us. And, how grateful we are that, whatever happened to him ....wasn't as bad as what others have had to experience.

Immediately feeling better does not, automatically, accompany the word "Remission". He didn't get this way overnight, and he's not going to feel better overnight. He's still trying to get over the feeling of fatigue and weakness. And, there are days (and will be days) when he "just doesn't feel good". He's still not great about admitting he feels bad - I just know it when he moves to the sofa, lies down, and begins to snooze.

There is still pain in his left hip, legs and feet. Neuropathy must be a terrible thing. When I touch his feet, he flinches. I've purchased several different types of lotion, but there seems to be nothing that will ease the sting - pain. Even with the MM in remission, and a respite from Chemo, the Neuropathy is probably here to stay.

He's beginning to walk better than he did for awhile. There were months when he "shuffled" around the house - and he reminded me of his mother, as she aged. How could this be my husband? My energizer bunny? What had happened to cause him not to be able to walk, briskly, through the house? He still doesn't have that jaunty step, but he no longer shuffles. That's one of those things you never talk about never just hope that one day, he'll be able to pick those feet he once did. I knew what had happened - I knew that, every step, caused great pain. I knew that Multiple Myeloma had happened ....I just hoped that it would not leave permanent damage. I prayed that my energizer bunny would, one day, return.

It's hard for him to get up and move around - he's "stiff". And, he doesn't like to be told "you really need to get up and walk". It's so much easier to give advice than it is to take advice!

The pain, in his back, is under control. I cringe when I recall how many "experiments" we went through trying to find the answer. Vertebroplasty didn't work, Fentanyl Pain Patches didn't work, Lidoderm Patches didn't work. Finally a wonderful Pain Management Specialist, with injections and nerve burning, enabled us to end our trips to the ER. I was about to ask for a "Frequent Visitor Card"!!

The stomach is better, and so is the appetite. I joked, if he didn't start eating better, I was going to lose all my cooking skills. It's so much easier to cook meals than it is to try and figure out appetizing food for someone with no desire for food, or with a stomach that hurts when anything touches it. This was a man who loved food - loved to eat - and now, he wanted nothing, or could eat nothing. The Velcade causes everything to have a Metallic taste, but his real problem was the damage (to his stomach) caused by one of his drugs. A week in the hospital, and more drugs, helped to rectify the damage.....and the appetite.

Multiple Myeloma....the cancer with so many tentacles an Octopus.....reaching into different parts of the body. It begins in the Plasma Cells, but can cause damage to the bones, the kidneys, and so many other parts of the body ..... if not directly, then because of the treatment.

Remission. I never knew one word could have such a magical sound, and mean so much.

How long will it last?   Until it ends (relapse).

As the old song says "In the mist of a memory you wander back to me"......I feel like my honey is slowly "wandering back to me".......for awhile, anyway.


  1. I LOVE the lyrics to this song! They are quite poignant Sarah. And just so you know, so Bob feels OK about his quick remission. Dave got a VGPR within a couple of months on Thaid/Dex. It was largely due to his particular presentation of Myeloma, in that he was Low Risk. Our diagnosing oncologist told us that he had another patient on the same dose and was getting no response and he had chromosome issues. Dave attained CR from his first transplant. So it was very quick for him as well. Sadly it is one of things that is most perplexing to the researchers, although they understand it is often about how the Myeloma is presenting in their bodies which is why a researching facility seems to have much more luck with getting harder patients into remission. They have seen it before and they know that these drugs will or will not make things happen.

    Also, my response on why still taking chemo is that it is the trend in ALL cancers now. I have many friends with certain types of Breast Cancer that are on "maintenance" chemotherapy. It is a theory, it makes some sense, but physicians are debating it, and whether it actually extends survival for many and in that extension their quality of life, which can be quite subjective.

    Another great post Sarah. Hugs to your man Bob! He is very lucky to have you in his corner, but I suspect he knows that. Sometimes it is worth reminding these boys of ours how special we are! haha

  2. Wonderful post, Sarah. Treasure the moments ... hope there are years "until it ends".

    I used a mint foot scrub and cream from Mary Kay on Vern. Couldn't do much scrubbing, but it helped to get the blood flowing. Just did the scrub weekly, but used the cream each night. Also used a lavender cream. Don't know whether the cream itself was helpful or if it was just the nightly foot massages that helped with his neuropathy pain, tingling, numbness.

  3. Tanner and I are back in Little Rock this weekend and went to dinner tonight with some friends we made while we were here all those months for treatment.

    During that time, we never were able to socialize since Tanner and Shirley were always so sick.

    Shirley is having a hard time walking,also, and told me it was neuropathy. She and I were talking about how when we were here a year ago, they were dealing with chemo to kill the cancer - and now are dealing with side effects caused by the chemo meds...

    This whole journey is one long process to reach and remain in remission for as long as possible...

    I love your posts.

  4. Ladies.....I love hearing from all of you with your comments, info, and advice. I'm walking the "Myeloma Trail" behind you...and learning from you.

    Thanks for sharing!!

  5. And we will keep going....and going....and going. Great article Sarah!!!!