The Old Gray Mare, She Ain't What She Used To Be!

There are milestones in life that have a profound affect on your body, times and events that make you have to relearn how your body works. Everyone has their life events, some develop bad joints, some hurt their backs, some develop autoimmune disorders. For me there have been few of these milestones. When I got close to 30 I had to start stretching before I could go on a run. After I gave birth to Aidan it took three years to feel my stomach again from the c-section and I have yet to understand my abdominal muscles and why I can't have a six pack, no matter how many sit ups I do. After all, Kelly Ripa has a six pack and she has how many kids? After moving to Lubbock I had to relearn how to treat my skin because I'd never been so dry in my life. After 40 I had to relearn the relationship between eating and working out, as my metabolism changed profoundly. Although annoying things we all complain about in passing, these are all relatively normal changes that occur and require us to shift our understanding of our bodies.

A little over 2 months ago I was diagnosed, I had major surgery, and then started on the strangest adventure of my life. Many of you have been on that journey with me either by physically being here or through this blog. One thing I have not blogged about is the daily struggle of understanding my own body as it is today. I thought a blog post on this might be interesting and hopefully a little entertaining. If you get to something that's TMI, please just move to the next paragraph.

1. Bowel Movements

During our first week here and before the surgery, Claudia, Jason, and I were in some information services area of MDA. We looked at many pamphlets about cancer, GBM, etc., and Claudia noticed that on every piece of literature "Bowel Movements" was listed first. Eventually we settled on the idea that the categories were in alphabetical order but now I'm wondering if they must have known. Seriously. I thought then that this only pertained to people with colon cancer, but bowel movements might be the single biggest issue in the MDA Disney world of wonder. First they wouldn't let me leave the hospital without one, even though I was told that for six weeks after surgery I wasn't allowed to strain for any reason, even to use the bathroom. So for six weeks I had to just nonchalantly wait around and hope for my body to just do what comes natural. For someone with very little patience, this is virtually impossible. There were impatient friends and relatives waiting outside of bathrooms, there were cheers in restaurants when I arose with news of success...it became the single biggest event in our lives for a while. Then enter chemotherapy. Side effect? Constipation. You've got to be kidding me! So, of course, they won't let you take just anything, they have to tell you what to take. Enter the stool softener, something I've never taken in my life. I don't even know what these things are supposed to do. Are they supposed to make something softer? What a ripoff! And don't even get me started on what happens when you are eating hardly any calories. These days I just hope something happens-- anything!

2. Fatigue

Fatigue is like a stealth bomber. You have no idea it's hovering, you can't detect it. You know that you could get fatigued so you choose 2-3 major things you want to do in any given day. But the truth is that you might get all of it done or none of it done. You just cannot know what might happen because fatigue will come along and hit you like a ton of bricks. So many things affect it that you don't even know how to predict it anymore. Did I get enough sleep? Did I sleep well? Did I eat enough protein/carbs (which has it's own issues since I'm limited on both)? Did I get enough vs. too much exercise? Currently I am in a state of "whose body is this and how to I get it to operate predictably?" Last night I got a solid night's sleep (except for my now normal 2:30 AM trip to pee), ate a fair amount of calories with my now low protein/carb amounts. I'm feeling great this morning after proton & seeing the doctor. I've had several days off from the gym. So, basically, I'm feeling full of energy. I get to the gym, start working with my trainer, and after just 30 minutes of what used to be moderate exercise, I hit a wall. It was the first time ever that I have not been able to push myself physically to do it anyway. I looked at my trainer and she looked at me and we both knew. We just decided that 30 minutes is enough and we will try again tomorrow. I've never been super athletic but I've always been in decent physical shape. I believe that is what got me through the surgery and on my feet so quickly the following day. I am hoping that this new level of fatigue is a combined effect of daily routine and just being late in the treatment process. I was told that I would feel fatigued more and more as the chemo and proton treatment went on, but this wasn't really what I thought would happen. I think someone needs to work on how they communicate that warning. Let's hope I will have more energy in 2 weeks when this round of treatment is over. I can just see me randomly falling asleep in my office now- my colleagues would think I was dead and they'd call 911 and it would just be a huge fiasco. Hey, you know what? I wonder if the department would spring for one of those napping pods. Hmm....

3. Head Position, Head Pressure, and All Things Head

When I had my tumor and I thought it was a sinus infection (I am so not an MD and shouldn't try to play one in my daily life), I had so much pressure in my head and ears. It turns out that pressure feeling was my brain swelling and my cortex, amygdala, and brain stem being crushed from the pressure of the tumor. That's what caused all of the sleepiness and vomiting, but I digress. These days I sometimes feel a similar sensation and it ALWAYS scares me but I've finally learned what causes these feelings of "fullness" as I called it before we knew it was actually brain swelling. Today's head pressure is most commonly associated with head position. If my head is at or below my heart for any reason (i.e., bending over, lying down) I get a little dizzy and sometimes I feel pressure in my ears and/or head. Sometimes when I move from outside to inside or vice versa, the environmental pressure changes have a similar effect. It's interesting for me to observe. The doctor says that this is normal and that if it comes with a headache or gets severe, we have a contingency plan for how to handle it. My flight to Lubbock this weekend ought to be very interesting and I'm equipped with my contingency plan medicine just in case. However, imagine how this can affect your life on a daily basis. First, I have to carry around yet another bottle of pills just in case i need them. Second, I have to plan ahead if I need to bend over for any reason. This planning might involve what is nearby to hold onto in case I get dizzy or whether I want to argue with Jason when I ask him to pick something up for me and he says, "The doctor says you can bend over and you probably need to get as much exercise as possible." Third, I now am partially propping myself up again to sleep. When I was first home from the hospital, I was required to keep my head up and sleep at a 40 degree angle. Claudia found a wedge for me that was extremely comfortable but I got pretty tired of it and after about 2 weeks I sent it packing. These days I'm just sleeping with multiple pillows, but it's still sort of a pain to get yourself comfortable with your head propped up. I'm sure Jason feels like I'm hovering over him at night.

The last head related issue is the hair loss. As I've stated before, I'm not at all worried about the hair loss, however, it comes with it's own set of problems. The most annoying issue is the hair itself. There is hair EVERYWHERE. Most people I've talked to told me to shave my head when I start losing hair and Kim and Jane offered to do it for me. The doctors, on the other hand, are measuring hair loss as part of a clinical trial so they have strictly prohibited changing of the hair. When I wake up in the morning there is hair on my pillow. When I wash it, there is hair stuck to my hands, all over the shower, it's everywhere (Lois and Bob I will pay for the plumber). When I comb, brush, and blow dry there is always a ton of hair that ends up in the trashcan from the comb and brush but TONS falls on the floor behind me, on the counter, and in the sink (again, I'm good for the plumber). I don't know how I even still have hair but I totally do. Turns out I'm only losing hair in a couple of spots, mostly on top of the head where the proton beam enters the scalp/skull/brain. I'm not losing hair in any other spot. I am in disbelief that this much hair is coming from such small areas, however, if you look at the top of my head I have male pattern baldness going on and so now I need a hat anytime I'm in the sun so that my scalp doesn't burn.

Seriously. I'm an old man now. I have an old man disease (typical GBM patients are men above 60), I have no legitimate control over my own bowel movements, I take afternoon naps, fatigue hits me out of nowhere, and I have male pattern baldness. It's the definition of old man, the only things I'm missing are prostate cancer and tube socks with shorts!