Friday, March 25, 2011

Danny Can You Hear Me?

Finally, I bit the bullet, or is it the wallet?, and got hearing aids. I've been messing with this hearing loss since returning from Houston and hoping that my hearing would eventually return or at least improve. No such luck. As mentioned in an earlier post, although the hearing improved somewhat in the left ear, the right ear has gotten very bad. So I now have hearing aids on both ears. What a difference. If I had any doubts about needing them, this has erased those misgivings. I'm not sure what I was hearing before, but it couldn't have been much, given what I can hear now. You've all been warned: no more talking behind my back--I can hear you.

The technology on these devices is amazing. This set has 5 separate programs for such differing environments as loud background noise, music listening, close conversation and talking behind my back. Nah, just kidding on that last one. The devices sense the noise level and move to the appropriate program, which then adjusts the device so I have maximum hearing. I don't have to do a thing to cause these adjustments--all done through the chip in the device, which was programmed with a computer at the doctor's office. Installation of these feels like I just took the mufflers off my ears.

Next week is test week. I've got extensive lab tests, bone marrow biopsy and few others to undergo as part of the vaccine trial I completed. They are allowing me to have these done in Denver. I'll also be talking with Rifkin about the next treatment since the revlimid has hammered my blood counts and isn't consistently holding down my myeloma. My M protein has stayed relatively stable, around 2.7, but the IGGs have jumped from 2800 to 4800 to 3800. The bone marrow biopsy will hopefully provide a better gauge based on the degree of plasma cells detected. Regardless, we'll have to find a different drug(s) to bring the myeloma back in submission. I'm not sure what Rifkin has in mind and I haven't even arrived at my own opinion on the matter. He'll probably go into shock when he hears I don't have an opinion.

Although spring is here, it's still a bit cold for me. I'm waiting for temps consistently in the 70s before I get into a regular bicycling routine. What a wuss I've become. And to think I used to winter camp in Minnesota at minus 30 degree temperatures.

March 23rd was the 6th anniversary of my MM diagnosis. Unbelievable. This has been such an extraordinary journey that I can hardly remember what my life was like before cancer. "But that was in another country, and besides the wench is dead." (from "The Jews of Malta" by Christopher Marlowe). March 24 was brother Mike's birthday--let's just say he's not eligible for Social Security but it's not far away. And March 26 marks the 34th year since Susan and I met on our 2000 mile blind date. Lots to celebrate.

Best to all,

Tuesday, March 15, 2011

Kickin' My Butt

If you want to be physically challenged, try exercising with someone 35 years younger than you are. Susan exercises regularly with Julia and manages to stay right with her through a variety of exercise classes, weight lifting, or anything else they might try at the club. I, on the other hand, am prohibited from going to the club because of my chronically low white count. So, Julia and her "friend" Bob asked me to go for a bike ride on Sunday. My first real ride in 2 years. Yes, I rode last year after getting back from Houston, but always in a leisurely manner. Sunday was different. Twenty miles and I was ready to puke. Huffin' and puffin' but I made it. Julia and Bob actually went further while I took a break at the 1o miles mark. But, they got me out and now it's just a matter of doing it regularly.

I had my counts checked on Friday and I am officially neutropenic. My white count is 1.9 and my neutrofils are .9. Nonetheless, Rifkin kept me on revlimid. He said he wants to "push" it to try to reduce my myeloma. I'm all for that. He just warned me to be careful and stay away from crowds. That's fine for now, but once baseball season starts, I've got to be able to get to the ballpark. I continue to reduce my neurontin for my neuropathies. I'm now at 50% dosage of where I was a month ago. The pain and numbness are more noticeable but the clarity of mind is worth it. Neuropathies caused by chemo, such as mine, can resolve over time and I'm hoping some of that is going on as well. Maybe getting feeling back in my feet will help my bike riding.

I also saw my ear doctor on Friday. While the sinus infection has apparently resolved, the hearing has not improved. I will be getting hearing aids for both ears in the next week. The nerves have been damaged from the chemo and my doctor does not believe it will resolve. I've seen as much improvement as he thinks I'm likely to get. While the chemo has obviously kept me alive, the side effects of these toxins have taken their toll. So be it.

Happy St. Patrick's Day, especially to my Irish friend Mari, who has kept me in cards, jokes, sock puppets and many other items to keep me in good humor through these past six years. May the Lord keep you in his hand and not close His fist too tight.

Wednesday, March 02, 2011

Vaccine Trial Is Over

No, I've not shut down the blog, although from time to time I think about doing so. I just think you are all tired of hearing about "the scoop on Dan." This has gone on for six years now (on March 23rd). But John Sadwith threatened me with physical harm when I mentioned shutting this down, so on we go.

I just returned from MDAnderson. I have now completed the vaccine trial, having received my third vaccine shot on Monday. They will do the full battery of tests in a month to determine its success. I'm not optimistic about those results, because my IGGs and M protein started rising dramatically about 6 weeks ago, resulting in my going back on maintenance revlimid. That seems to have put a hold on the rising numbers--actually bringing the M protein down from 3.1 to 2.6. My doctor at MDA tells me they will be looking at much more than just the M protein and IGGs to determine the success of the vaccine in a month.

But always being a few steps ahead of my docs, I've already started pressing them for their thoughts on the "long term plan." As always there is no long term plan because it's impossible to predict what condition I will be in down the road. But there are many options available now, including the vaccine made from my M protein, another infusion of Mike's cells, and at least two new drugs that are well on their way to FDA approval (pomalidomide and carfilzomib). The most positive aspect of these discussions is that they always seem to find a drug that I respond to.

With ailments we seem to develop a mindset that generally they can be fixed, we will recover and go on with our lives. That often happens even with some cancers. Then there is this nastiness called myeloma, which gets knocked down but then pops back up--just like me. Hmmmm. Is this a coincidence? For now it doesn't feel like crisis management and that is a relief not to have that hanging over us. Those periods elevate the family's stress level, particularly Susan's. As I think back a year ago, we had just arrived in Houston for the transplant from my brother. That was crisis mode, as my counts were still battered from the Arkansas treatment and a donor transplant (allogeneic) brings many risks. When forced to decide whether to go through with the allo transplant, it really wasn't a choice, as I don't know how to give up. Fortunately, we've navigated those waters for now.

Right now we're dealing with an abysmally low white count (1.7) and a similarly depressed neutrofil count (.9)--these are the really really good white cells that fight disease. So no revlimid for the time being as that is what caused the low counts in the first place. I'll see Rifkin tomorrow and we'll make some decisions about the path forward.

I'm anxious for spring as I don't handle the cold very well. This is the first time in three years we've been in Denver for the winter, although our last two winter vacations to Little Rock and Houston left a lot to be desired.

Best wishes to everyone and thanks for hanging in there with us. We continue to be very grateful for all our family and friends. We love you.