Radiation: Simply Foolish

Alright, alright....I'll admit it....I've been depressed. I've managed to continue living, putting one foot in front of the other, but deep down inside my soul I'm not my happy self. It just happens sometimes. For those who have been around me, I'm sorry. I've been cranky. For example, I said the following during the Super Bowl: "How stupid is this halftime show, Madonna isn't even singing. This is such a freaking joke." Woah, grumpy! Yikes.

Here's a few photos taken over the past week, see if there's anything you recognize:

I am pooped. This protocol is exhausting. Basically, I'm doing natural chemotherapy. It's high doses of artemether twice a day on Monday, Tuesday and Wednesday. Thursdays are the high doses of sulforaphane. On those days I can't even eat because I'm so nauseous. I curl up into a ball and want to die. At least I don't have to lose my hair :) Then, on Friday, Saturday and Sunday I drink my green upland cress drink with daikon radish then in the afternoon I take various mushroom supplements and shark liver oil. On those three days I can finally eat antioxidant rich foods (I can also cheat if I want).

This whole thing takes a lot of work, and a lot of thought. It's wonderful to have this opportunity, but man is it draining.

I can understand why people give up and just listen to their doctors. It's hard to put in the research, the shopping, the preparation, the effort, and the day-in day-out reminder of a horrible cancer that does not have a positive outlook.

Walking home from the retirement center today, I picked up a book that I had on hold at the library and I want to share an excerpt. The author was diagnosed with a glioblastoma in '95, the most aggressive and deadly brain tumor out there:

"In the meantime, conventional medicine has its limits, and cancer patients need to explore treatment options not yet incorporated into conventional medical practice. Patients must be willing to go beyond their physicians' advice, and sometimes follow options contrary to that advice. This is not an easy road to travel. Newly diagnosed patients are confronted with a disease about which they are largely ignorant. For better or for worse, they often are at the mercy of their physicians. Some physicians will actively resist any approach to treatment other than their own, even when they concede that their treatment offers little promise. Therefore, patients need to learn how to acquire medical information on their own while exploiting their physician's knowledge and expertise." - Ben Williams (Surviving "Terminal" Cancer)

This book gives exactly the affirmation that I need. It helps remind me that I'm not crazy to avoid radiation, that I'm not stupid, that maybe I'm I pioneer. Maybe? Maybe I'm a pioneer? I'm not the first to use this treatment and have success, but maybe I fall into the category of pioneer. I like the ring of it. But as I write this I think maybe I should stop fluffing my feathers.

A final quote from the book that also makes me feel better:

"Oncology also ignores the critical distinction between diseases for which effective treatments exist and those for which effective treatments are lacking. In the latter case, the practice of prescribing standard treatments that have a known record of failure is simply foolish. Yet, for many cancer patients, the standard treatments are all that are offered." 

That quote directly speaks to me. That is exactly my journey with my oncologists with regard to radiation. It seems it would be simply foolish to do it. It has a record of failure.

5th Percentile? Ouch.

Yesterday was so much fun! I got the chance to paint the nails of a 100 year old woman, Margaret. She grew up in Cashmere, then in Anacortes, and finished high school in North Bend. Margaret is such a sweetheart. I just adore her. I'll be painting her nails each week. I'll walk up and put the basket of goodies on the table, then I'll go to her apartment and get her. She manages all by herself (except for her rolling walker). Margaret prefers her nails to be tapered, which she mentioned seems to be out of style at the moment, but she considers herself to be old fashioned. She let me know that she always picks the same nail polish called, Mud Slide. It's a shade of light pink/mauve. She likes her nails to have a french tip which makes it a little tricky. I painted her nails, leaving the white area at the tip. I was concerned that her nails weren't looking as good as they should, but as Margaret laughingly confessed, "It doesn't really matter since I can't see that well anyway, dear." How cute is that!

After nails I head over to the memory center. This is a secure area. The residents have memory issues, and if they were to get out of their residential area, they wouldn't know how to get back home. You wouldn't know it working with them though. They are the happiest, most jovial group. I join in the circle group of sitter-cise. It's exercises from a sitting position. We throw balls back and fourth, and play with a parachute. It's a lot of fun. They loved my purple ruffled ballet flats, and gave me a round of applause when I finally on the third go-around, remembered all of their names. Wow. A round of applause!?! I haven't had that happen in I don't even know how long. What an ego boost!

I had to warn Danny that there's a gentleman, Marv, in the memory care that's going to give Danny a run for his money. He's absolutely adorable, and even though he remembered my name, I kept forgetting his. He just smiled and said, "It's okay honey, it's a hard name." But the thing is, it's not a hard name! I've been visualizing all of their faces and one by one memorizing their names. I'm determined to call them by their first names next week. It'll be interesting to see if they remember me. This is such great practice! Seriously.

The other day my mom asked me to get the full file from UW so that we can read everything they've documented about my case. I just finished reviewing a report from my speech therapist, and I'm not going to lie, it hurt to read. I think I'm done looking into my file for a bit. According to my speech therapist's notes, "Reading - Assessed reading speed on Nelson-Denny Reading test for both reading aloud and to herself, her scale score was 175 and reading aloud 171 (both at the 5th percentile for her education level)." Ouch!

Before my brain surgeries, I was a smart girl. I was an A/B student. Especially in English courses in high school and college, I was at the top tier of the class. How ironic that I now have difficulties in the exact areas where I used to excel. The 5th percentile? The speech therapist never said that to me, which is probably good. That would have broken my heart. Now, it's just sad. I'm improving little by little, which is great and I'm so grateful, but my deficits still shock me. I'll bet it shocks those around me as well. I can type pretty well on the blog. I'm good at articulating how I feel, or what's going on around me. At least I have that. I can and do read, but the comprehension is pretty poor. I still enjoy reading though. I don't think you have to retain stuff to enjoy it in the moment :)