multiple myeloma – Couldausedanotherday

It Grows On You

My life continues to overflow with God’s blessings through family, friends, and sometimes just out of the blue. In May, Diane and I drove across the country to Michigan and met our only granddaughter.

She’s a precious cutie, and much of the time seems to have something important she wants to say, but doesn’t yet know how to effectively articulate. It will be fascinating when she does. We saw friends and relatives on the way there and back. I wish we could have stayed longer for each visit.

Our son and daughter-in-law took us on a wonderful Lake Superior cruise to a place called Pictured Rocks. Amazing mineral colors can be seen oozing out of the sandstone cliffs there.

To see more Pictured Rock pictures, click here.

I’ve been looking forward to summer, and June is suddenly circling the drain.

I started playing Volleyball again. I used to have a team, maybe you’ve heard of us, “Ricky Normal and the Jazz Head Cowboys”? That was actually the name of my band in a dream, but since the odds of me leading a music group while conscious are pretty slim, I decided to use the name for my Volleyball team.

The league I play in now doesn’t have organized teams, in fact, it’s not even a league. It’s just a group of local people age 55 or older (frequently) hitting the ball over the net and having a good time .

It is fun, but I’ve been plagued by a random, sporadic shortening of the arms and an intermittent disconnect between the eyes and brain. That’s bad enough when you’re just trying to make contact with the ball, but it’s especially embarrassing when you do hit the ball and then go for the high five your team-mate offered up – and you swish the air completely missing that slap!

My second 3 month appointment and tests weren’t due for two more weeks, but I’ve been revisited by some previous back and leg pain symptoms. Knowing that Multiple Myeloma attacks the bone, I decided to get in to see the Oncologist sooner.

The test results that came back right away don’t indicate cancer activity, but because of what has previously happened in my back (click here for the December 14, 2011 post), and because of the returning symptoms with no known cause, MRI’s and an x-ray have been scheduled.

Back To The Needle

I saw my Pulmonologist again. I asked him about the black spots I saw when he had the camera in my lungs. He said those spots were my bronchial tubes, and that he saw nothing unusual in there.

He said all my tests came back negative, and he suspects the Revlimid was causing the cough and the low blood numbers. He asked for another scan to confirm my improvement.

I saw my Urologist again. It was the three year anniversary of my prostate cancer surgery. The blood test results say PSA is undetectable. Those words are sweet to my ears. I am thankful for my recovery from that cancer and surgery.

I saw my Oncologist again. She agrees the Revlimid was probably causing a negative reaction. I stopped taking it a couple months ago. She strongly recommends that I continue my low dose chemo maintenance with Velcade.

Revlimid was a pill; Velcade is administered as a shot in the stomach. I’ll get one every two weeks. It’s the same shot I was previously getting twice a week.

She reminded me that maintenance medication will give me more time between transplants, and if it buys me a year, it’s well worth it, not just for pushing the next transplant a year farther down the road, but she said with the frequent new developments in the treatment of Multiple Myeloma, one year could make a difference in the future treatments I might receive.

*That’s me having a lot of fun with co-workers Bret and Geo at George’s Retirement Beach House Weekend*

Chipping Away

I’ve had a few doctor appointments since my last post. I always think I’m going to find out something when I see them, but it’s often a visit or so later before I do.

I gave blood to the pulmonary doctor, and saw him again the next week when he put a cable camera through my nose and into my lungs (a Bronchoscopy).

Before inserting the camera, they squirt really terrible tasting Novocain into your nose and down your throat. When you numb up, there is a temptation to panic, because you feel that you can not swallow, but you really can.

I saw the dark spots in my lungs. I didn’t want to look, but I saw them. Balls of cat hair were immediately ruled out. I won’t see the doc again until next week, but the shared tests results that are back are all negative.

That’s good, except the cause of the cough, spots on the lungs, and lack of improvement in my blood counts remains a mystery.

The prime suspect, though, is shaping up to be the daily low dose of Revlimid (chemo) I was taking. My rate of cough has dropped since I quit taking it.

*My latest Project: Power Steering on the ’57 Chevy*

My current project is installing power steering on the ’57. I’m nearly finished. If you know where to look, you can see the new steering box, rag joint, and just a little bit of the new steering column. It feels good to be able to chip away at a project.

Walking Again

I’ve been to the Oncologist for my “three month after the stem cell transplant” visit. The blood tests came back showing my M-Protein is now 0.2. That number has been as high as 1.8 in January, and down to 0.5 after Chemo treatments, before the transplant.

My Oncologist said she wants me to begin taking a daily low dose of Revlimid. She said cancer patients taking this maintenance dosage have longer periods of time between transplants. I asked how many transplants I might look forward to. “Just one more,” she said.

“Bone marrow won’t support more than two. But,” she continued encouragingly, “If you get two or three years from this transplant, and two or three more from the next, there may be new treatments available by that time.”

I found that due to the peripheral neuropathy in my feet, I sleep best with my feet hanging off the bed, toes pointing to the floor. There’s no perceived pressure from the blankets that way, and little discomfort.

I’ve started walking to work again. It hasn’t increased foot pain, so maybe overall it’s good. I’ve added three daily doses of L-Glutamine to my Multi B Complex for the neuropathy.

I’ve been taking it for a week or so, it might be helping a little. I will have a moment here or there when I realize that I have not been aware of pain in my feet for a full minute or more. That’s a (painless) step in the right direction!