It's Thursday night. Started a new cycle of maintenance chemo today. Leslie informed me it's cycle 9 of maintenance. That's means I've been holding steady and feeling good for nine months. Tomorrow is Friday. March 1. The start of myeloma awareness month. I never knew this existed until about one week ago. I guess when you pay attention, you can learn new stuff. Note to self....pay attention.
With my chemo, as I have mentioned before, I get a huge dose of steroids. Steroids that don't build muscle but do fight myeloma, damage bone marrow and give you a puffy face and neck. Risk reward dictates that taking the steroids and beating down myeloma is the preferred choice. I've been hearing the phrase risk reward quite a bit lately at work. Basically it means you analyze an option or options based on potenisl risk versue potential reward. If rewards outweigh risks when making a decision, then choose the option with less risk. For some of our projects at work, the term is used to compare two lousy options. Which offers more rewards if successful? Which offers greater risk if the choice fails? My point is that the reward for taking the steroid outweighs the risk.
This steroid also gives me insomnia and leaves me feeling like I am on crack. As I said before, I warn people to tread lightly around me the day after chemo.
We talked with Dr Phan for a while and that is what makes him such a great and unique doctor. He will spend whatever time is necessary answering questions and just chatting, Leslie had a bunch of questions about my immune system and what we can do to bring it up through diet. The chemo drugs (and steroid) damage my bone marrow and inhibit its ability to make white bood cells, the key to a good immune system. After talking with Phan for a while, the result of the conversation was to simply keep doing what I am doing with exercise and diet. I'm doing great and when the good is good, don't change anything. And I'm lucky because I'm not feeling any real adverse side effects from the drugs. So no reason to quit.
Also at Phans, I spent most of my treatment talking to a couple of other patients, One was an older man, spoke only a little bit of English. What I got from him was that he had lung cancer. Had. Today was his last treatment. He latest scans showed everything all clear. So today was his final chemo and he'll come back and see Phan in 6 weeks as a followup.
I spoke a lot wth a young woman who a couple of months ago I thought was a young boy. Remember the story? A couple of months ago, there a was young patient getting his first treatment at Phan's office. His mom left had him alone while she went to pick up meds at the pharmacy. I finished up my chemo and when I left, the youngster was by himself. As I drove home, I started to feel like an ass for leaving him all alone. A couple of days later I called Phans office and told Krystal, my nurse, about what happened and how I felt. She told me the kid's mom returned shortly after I left. And she informed me that he is a she. Oops. I guess the bald head threw me off.
Anyhow, the young woman and I struck up a conversation today. I told her that had seen her before and that I felt bad for her being byself. While talking, I began to realize that she was older than I thought. No problem. But then she told me how when she moved here 9 months ago from Pennsylvania, she tried to download the dmv manual and it was a pain in the ass. Dr Phan's new office has wifi, which the other office doesn't, so we were talking about his wifi speed when she mentioned the dmv. The more we talked, the dumber I began to feel. Turns out she graduated from college. Somewhere in Northern California. How the heck could I have thought she was a young boy? What an idiot I am. And it turns out she is very cool. Loves soup and german chocolate cake. Was diagnosed with lymphoma 4 months ago. She had been misdiagnosed as having strep throat. Wow, that doctor was way off. I told her about Katella Deli, just a half mile away from the office. I told her about the matzo ball soup and the amazing bakery. She was fired up. Her mom asked me some questions about my cancer. They both asked me questions. We all talked with the older man, It really was the chattiest chemo session I've had. Very pleasant. Her name is Juanita. The man's name is Lam. I didn't get Juanita's mom's name.
I feel the insomnia sneaking up on me. Well, it's not really sneaking up on me. The steroid effect has hit me with a wallop. No sleep for me. I try to counter balance it, which is helping some what, but not terribly much.
Tomorrow is my long awaited ride to work. The first complete round trip on bike in over 22 months, Saturday is the 22nd month anniversary of my diagnosis. It had been a few weeks before then that I had to stop riding to work. I had been riding to work every single day. But I wasn't able to breath and could hardly pedal. So that put a stop to that. Riding tomorrow is pretty momentous. I am trying to temper my excitement and nervousness. Stay calm, hop on the bike in the morning and it'll feel like it was just yesterday that I rode to work. But, in reality, it was over 22 months ago.
I am creature of habit. When a new Chili's restaurant opened up several years ago near my office, I had to eat lunch there every day for an entire week. 5 days in a row. I had to do it. I think when I used to run, I ran a lot. If I was going to run, I wanted to run, I like routine and I am sort of all or nothing. That's a bad thing and a good thing. It's bad, because if something doesn't click for me right away, I am doomed to quit without really giving it a chance. Thus, when I decided I would be a bike commuter, it wasn't a thing where a couple of days a week I'd ride to work. I had to ride every day. Rain or shine, I was riding my bike go work. This myeloma messed up that routine. In fact the myeloma has forced to me to change many of routine centric, all or nothing ways. I now need to be patient, less anxious, flexible, and work through challenges, No more turning my back on challenges. Anyhow, I ride to work tomorrow and it is a pretty big deal.
Anyone else listen to spotify? I know it has been around for a fair bit, but I just discovered it a few months ago and it's awesome. You don't download songs, but you can listen to just about anything or anyone, for free,. Right now, I have it on an Alabama Shakes radio stations. The perfect music for me at this moment.
Our lesson for today. Pay attention.
We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409. Fresh off the pr...