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Shannon Rinaldo - Journal

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Posted 2017-10-22T18:12:26Z

Another week, a little better, and Croatian Comedy Aspirations

I continue to feel a little better each day. I guess since I'm on a new chemo and I'm in a holding pattern, I have my illness ever present in the front of my mind. Physically I feel pretty good, I just wish I could stop expecting myself to be where I was before the surgery. I mean, come on. The surgery was September 20 for crying out loud! Here we are a month later and I'm constantly second guessing my energy levels, sleeping patterns, incision discomfort, and food consumption. I've got to stop it. Someone tell me to stop it![...]

Posted 2017-10-20T00:42:03Z

New chemo, minimal side effects, and meditation

I took the new chemo on Tuesday and it was uneventful. It's a lot like the temazolomide that I took for a year in that I take the zofran and then the chemo pill 30 minutes later. I didn't feel nauseous, even though the zofran bottle says I may need it every 8 hours. I felt well enough to go to work all day on Wednesday. I did take off today, however, because I have a pretty full day tomorrow and I don't want to overdo it. As far as side effects, already everything tastes blah and no food sounds good. Smells are also an issue already. I accidentally skipped lunch today, thinking I wasn't hungry and could get by with a snack. Jason (again) treated me like a little kid, fussing at me for skipping a meal. He's using negative reinforcement to get me to change my behavior. For those who weren't psychology majors and those who haven't taken my course, that means that when I start engaging in the behavior he wants (i.e., eating more), he will stop nagging me and treating me like I'm a toddler. That's negative reinforcement- removing an aversive stimulus to increase a desired behavior. I guess that's what I get for marrying a psychologist. [...]

Posted 2017-10-17T01:57:00Z

Blood draw hiccup, impending chemo, and freedom to speak

Today I was sitting in my office around 4 PM, looking through some papers, and realized that I was supposed to get a blood draw and start the chemo today. There was some kind of hiccup when they printed out my remote blood draw paperwork and the first form was dated for next Monday instead of today. If I hadn't pulled out the form that gives dates for the actual chemo, I wouldn't have known. I called the nurse in Houston and she said to get the blood draw as soon as possible and that I could start the chemo tomorrow if need be. So now I have to decide quickly if I'm going to do this or not. I'm leaning toward yes because let's face it- if my immune system crashes they will discontinue it anyway and then we will try something else. If there's any chance it might help, I feel like I need to do whatever I can. I had to track down Jason to drive me to the local lab (being dependent is such a pain in the ass) and I got there 30 minutes before they closed. The woman who took my blood looked at my head (I still have a few stitches) and we discussed the brain surgery being just a few weeks ago. She said that she'd never seen a brain surgery patient so bright eyed, with no facial paralysis, walking with no issues, and with such a great looking scar. She said, "Usually there is an indention where they didn't put the skull back together right and sometimes one or both eyes just don't look right." All I could think about was how happy I am that we ran away from Lubbock to get my surgery, that we have decent health insurance, that we have resources to travel, that we have such great doctors at MD Anderson, and that we have so many supporters who help us maintain. I guess if you have brain cancer you maybe shouldn't be worried about a skull indention, however, that's kind of a big deal. What kind of surgeon leaves you with a dent in your skull? That's scary. The woman was so surprised to see me doing well that she wrote down the name of my surgeon and asked me how she would get in if she ever needed brain surgery. I hope she doesn't, but I gave her the information anyway. I've seen people not doing great at MD Anderson, but never anyone like she described. Again, why can't everyone have access to the best care? Or at least high quality care? People travel to MD Anderson from all over the world and people in Texas, even though they get priority, don't have resources to get there. It's just so morally wrong.[...]

Posted 2017-10-15T03:05:36Z

Establishing my routine, happy to be home, and exogenous ketones.

It's been only 3 1/2 weeks since my surgery and it feels like so much longer than that. Of course, I've been back and forth between Houston and Lubbock a few times, I've been working more than I should be at this stage in the game, and it's just been generally business as usual with a little added stress. I had some tests last Monday to check my lungs out for the impending chemo. I guess my lungs are in excellent shape, if you believe the pulmonary technician. He seemed pretty good so I'm taking his word for it. I also had a breathing treatment to ward off pneumonia since my lymphocytes are perpetually low. My docs shake their heads when I say things like, "That's just who I am. I have low lymphocytes." That's me accepting the new normal. Why fight these things when you can just embrace it? I flew back to Lubbock Tuesday morning. I found my way around the airport and managed to get where I need to even with limited vision. I get to stay in Lubbock until the week of Thanksgiving! Yay for a few weeks at home![...]

Posted 2017-10-04T22:59:10Z

Craniotomy Practice! Getting Good!

As most of you know, I had my second craniotomy on September 20, 2017. To recap what led up to it, I had over a year of stable MRIs and a "relatively stable" MRI in the summer. This essentially means that there was something in there growing extremely slowly. We tried a clinical trial of chemo that we were all super excited about and it knocked out my immune system. I had to be taken off the trial and then we had to make some tough decisions. Ultimately, we chose a second surgery to see if we could get this small nodule out of there, analyze it, and hope for a more targeted treatment. Ten days later I was back under the care of the most amazing surgeon and human being I've ever met. [...]