With the fall leaves all coming down and the beautiful colors, I thought that I needed to post an update to my blog. I have been meaning to write this now for 2-3 months, so I am glad that I am finally getting to it.
In October, we went past my 3 year anniversary of my full diagnosis. We had already been told earlier in the summer that I likely had myeloma, but it was uncertain how serious it was. Only in October 2014 after lots of testing and scanning and other things, was I diagnosed with full myeloma. Of course, you all know what happened after that. So, three years -- and I'm still kicking! Wahoo!
Am I still grouchy about this? You bet. Is every day wonderful? Ummm.......no. With more cold, my neuropathy is acting up, and I am chilled and have more trouble with my hands and feet. However, I was able to travel to Montreal for a conference a couple of weeks ago, and although I got tired, my presentation went well, and I had some great fun networking with colleagues, learning new things, and playing some board games!
Photo credit to Derek Bruff (takes great pictures!)
So what is the update? Steady as she goes.....in my last meeting with my clinician, the blood work looked about the same. My M-spike is still at 0.7, my white and red counts were a bit lower than normal although one of the specialized white counts was up. I wonder if that might be due to my system trying to fight this low-grade sinus infection I cannot get rid of and that sometimes makes it hard for me to breathe at night. My kidneys are looking OK. My weight is about the same. It has gone up slightly; in some ways this is good, right? If it was going in the other direction, my anxiety would be going up.
I also decided to start back on a regular exercise program to see if I could increase my energy and stamina, so I put my Wii exercise program to start up at the easiest level. The program builds in 4 days of exercise every week for 9 weeks. I didn't make it two weeks! I told the doctor that I cannot exercise two days in a row; it wipes me out for 3-4 days afterwards. She looked at me and said evenly, "Well, don't work out two days in a row". Yeah, OK. It is not the end of the world, but it is annoying. So I'm trying to see if I can do 3 days a week; it is better, but still difficult.
So Where's the New Leaf????
I have been doing some soul-searching with the helpful input of my lovely wife for the past several months. I got up in testimony meeting several months ago and said that I was grateful for the fact that I was stable. I said, It wasn't the miracle I asked for, but it was the miracle I got. That is still true, but I realized that my thoughts and my statement was kind of like a slap in God's face -- a backhanded compliment. I have decided I need to repent, turn over a.....you know. I am working to accept what I have and to be truly, grateful for it. Because it is a miracle; no one knows why I am stable, but I have had 2 1/2 years without chemotherapy; I am able to work, to go to a conference, to walk with my wife and dogs. And even though what I used to be able to do is gone and probably will never come back, I am breathing and walking in the fall colors and enjoying the change in the seasons.
The only other new thing to report is that we have an appointment to go up to Huntsman Cancer Institute on Monday the 13th to meet with their Myeloma specialist. We had a physician friend tell us that it never hurts to get a 2nd opinion, a 2nd look at how things are going. I still have nagging worries that because I did not go on maintenance therapy, that I may have shortened my life, and I'd like to discuss that with another doctor. Because he is at Huntsman, I am also going to ask about clinical trials and thoughts about whether it is worth it to consider doing one to see if I could feel better. I hope that doesn't sound ungrateful after what I said above. I think they are separate things in my mind. If there is a strong chance to achieve remission, it may be worth it, but if not, I'll stay where I am and deal with it day to day, with gratitude for every day I am given.
Have a great fall and holiday season! Thank you all for your support.
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