As I've been following my nephew Spencer's blog, The Journey of a Superhero http://www.mysuperspence.blogspot.com/, and my niece Becky's blog, Don't Panic Roger I have A Plan http://www.takinglumps.blogspot.com/, I've noticed several things that we all have had in common with our hugely different types of cancers. Some of the drugs/chemos that we've been given haven't affected us too badly (which I'll refer to as "good" drugs), and others which have kicked our hineys all around (which I'll call "bad" drugs.) The term good or bad has nothing to do with their effectiveness in our treatment, just what it does to us. For instance, Becky talks about how the neupogen shots she's getting aren't doing the trick for her and her white counts are still very low. Whereas I took neupogen shots and it boosted my white counts so much that it was again deemed another miracle. For Becky, neupogen is "bad", as it has side affects and isn't doing what it's supposed to do, and for me it was "good".
With my new maintenance chemo drug, Revlimid, it's been 2 weeks since I started taking it. The first few days were not bad, and I thought, "This is going to be great." But after those few days, it got bad. Pounding headaches that would not quit no matter what I tried. Lightheadedness and dizziness. Painful body aches. Painful muscle aches. And then there's always the nausea. As of today I've lost 6 of the pounds I gained back. I'm back to 161 from 167! Apparently I'm going through "chemopause" a well, as I've been having night sweats the last week or so.
The symptoms were getting so bad that I went to the doctor last Thursday. I was able to meet with Tim Souchek, the PA for the oncology office. He was very thorough. Asked a lot of questions, then basically said that all of the symptoms were to be expected from the chemo. Then he made a very profound statement: "In a week or two, the symptoms are going to get better, or they're going to get worse. We'll have to wait and see." He told me to take it very easy for the next few days because he was worried about blood clots in my system. He ordered blood work to be done, and I found out it's "normal" for my circumstances. I was getting worse by the day. Saturday I could barely move ON the couch, let alone from the couch.
In March I started the process to try and qualify for Social Security disability until I can get back to work. I was told that everyone gets denied the first time. One client was denied 4 times before they approved him. Here's how it works, they said, they deny everyone. No one I talked to, including attorneys that deal with this stuff, said that they had EVER known anybody to be approved with the first application. You may be guessing now where this is going. On June 9th I turned in all of the medical reports that I had received from UCSF, to finish my part of the application process. On the 15th I got a call from my Social Security adviser letting me know that they still had to get the records from the local doctor and hospital and that the process would take up to 6 months to complete. Then the doctors had to review all of the information and make their determination. Then they'd let me know. Since the 9th I had gotten several computer generated form letters from the SSA, all of them a waste of paper. On Sat. Dale threw another one to me. I set it aside at first. I wasn't up to any garbage now. I was feeling horrible. After a few of minutes, though, I felt like maybe I should open it, and did. It was the SSAs notification that my application had been approved and that my benefits would start on July 28th. Talk about another miracle! Heavenly Father, despite the whole Revlimid thing, was truly blessing us and looking out for us.
Because I was feeling so lousy I told my family that I wouldn't be going to church Sunday. "But you have to. It's father's day." "Just go for sacrament meeting... etc". It went on for some time, so I knew something was up. Sure enough, Darrell was the concluding speaker. He did a great job talking about fathers in general and our Heavenly Father. My family knows how much I do not like "person-a-monies", and he did a great job avoiding that. He did throw in a few things about his father, most of them complimentary. We were all very proud of him and the talk he gave.
So now it's Tuesday. I haven't gotten worse, and I may have even gotten a little better. I'll let you know. But I'll tell you one thing. If I have to do this for 2 more years to stay alive, I'm up for it. I'd miss you all too much. Thanks again for your prayers and good thoughts on our behalf.