Radiating Positivity

Dr. Graber explained to Matt and I that I could have one of two types of radiation: proton or photon. If my radiation doctor said I needed proton therapy, it would have to be at their hospital in Northgate, about 28 miles away. If she decided after looking at my case that photon therapy would be sufficient, I could go to Valley Medical Center, which was only about 4 miles away. 

Needless to say, a roller coaster of emotions followed this news. I wasn't expecting it. I'd hoped that my tumor was going to stay the same size and shape indefinitely. Instead, my brain will be exposed to radiation, almost every day, for six weeks. I will lose hair. I will probably get very tired, and I also might have nausea and headaches. For me, that means migraines. The thought of handling more than I already do (sometimes over 15 a month) was daunting to say the least. 

Dr. Halasz, the radiation doctor I saw at UW, said that photon therapy would be a good fit for me. But when I saw Dr. Rhieu, the radiation doctor she referred me to at Valley Medical, he disagreed. He was a young man of Asian descent, very personable, easy to understand. We talked longer than I usually do with doctors. The way he explained things made complete sense to me.

 He said that although he hadn't actually seen my images yet, he'd read the report, and gave me several reasons proton radiation would be better. This type would shoot into my tumor and then disappear, while photon radiation would go through the other end of my brain, causing an errant spray of radiation and possibly causing another type of tumor/cancer. Proton therapy would cause less hair loss. It would also be better for my age.

But at the end of our appointment, I mentioned Dr. Halasz' opinion again. After confirming with me that she was an actual oncologist, he looked her up to verify that on the computer.

When he realized that she had in fact referred me to him, he said that he was not going to refer me back to her (he had mentioned doing that) because he would likely agree with her after reviewing the images. 

This was very confusing for me, making me feel more afraid than ever to receive treatment.

Matt and I had tried to manifest that photon therapy would be sufficient so that I wouldn't have to drive up to UW every day. Driving downtown or around UW triggers my anxiety. It probably does for a lot of people. Stress/anxiety isn't good for C-word. So it had been good news for us when Dr. Halasz said that photon therapy would work for me.

I scheduled another appointment with Dr. Halasz to discuss my concerns. She was surprised that Dr. Rhieu would even talk to me before looking at my images. She said that the hair loss would be about the same, and that the likelihood was low that the radiation would cause other issues. She could have me come in for a radiation simulation, plan my proton therapy treatment, and then compare the plans if I wanted. 

I didn't even want to drive up there for one appointment. 

I trusted her. I had already done my simulation at Valley Medical, and really liked the staff members I met there because they seemed like very friendly and positive people. Driving ten minutes five days a week would be so much easier than an hour. So we decided on the photon therapy.

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Radiation Simulation (The Mask)

They showed me how to use a little card to scan my bar code when I come in, state my name and birthday, hang up my jacket, and then lay on a table in an open room. They showed me a white mesh plate and told me that it was heat-sensitive plastic, which they would dip in hot water and then mold to my face. They warned me that would feel a little hot at first. I was expecting that hot meant scalding for some reason, but it wasn't. Cory, one of the radiation techs, actually mentioned one of his patients saying that it felt good, like getting a facial. It actually did. They stretched it over my face, and I was able to breathe freely through the holes. It felt fascinating to me. They molded the mask to my face with cool wash cloths as it gradually dried and hardened. It did feel kind of like a facial. 

Each weekday, I parked with my radiation oncology parking pass in the dash of my car, walked over to the radiation building, scanned my card, and waited for a staff member to come out and call my name. The other patients I saw were always much older than me. The first week I was placed with two women named Kathy and Alexis. Kathy was older with white hair, and Alexis was younger, with dark hair accented with blue and purple streaks. They were both nice, but Kathy complimented my shirts and the necklace I wore. 

The first day, I wore a shirt that both Kathy and Alexis got a kick out of. It has an image with the head of Dorothy crossed with the image from the Pink Floyd album Dark Side of the Moon. The "laser" is shooting into one ear, with the rainbow of a prism coming out the other side. It's a reference to the concept that you can watch the Wizard of Oz with the album playing instead of the normal audio, and there are parts that seem to be designed for the movie. I've done this, and although I don't believe the album was written for this movie, it's fun to watch this way if you're a fan. I like to wear shirts that go along with what I'm doing, and this one felt like it had a sense of humor about it. Kathy thought it was the best thing ever!

I also told Kathy about the necklace I was wearing the second day I came in. My sister Allison lives in Utah and sent it as a gift. It made me cry when I opened and looked at it. It's rose gold with a little heart charm and has a glass bead in the middle. If you hold the bead up to your eye against a source of light, you can see the image. It's a picture of the two of us from behind with her arm around me. "Keep me with my arm around you always whenever you are getting treatment... I'm with you. Cheering you on, putting my arm around you, telling you it's going to be ok," said on the card.

Kathy said that was beautiful, that she was a very good sister, and to be sure to tell her that. 

..............

The first week was hard. I'm sensitive, and my body almost immediately reacted to the radiation with nausea. The doctor initially gave me Zofran, but it caused me to be so constipated that I couldn't go number two even if I took Mirilax every day. So we tried Compazine, which I had a very bad reaction to. It made me extremely agitated. I tried laying down but was unable to stop squirming around. I took a walk, hoping that it would get rid of my excess energy, but it didn't work. I finally called Matt and asked him to leave work early because I couldn't take it anymore and needed his help. I threw up. That day was a blur of negativity. Thankfully, Matt saw me through until the end of the day, when it finally started wearing off. It's hard to explain just how bad I felt, and I was sure to report my reaction to the doctor. 

I also developed a cough in that first week. A cough plus nausea is a bad combination. I threw up a couple of times when the phlegm I produced made me gag. It took longer than usual to get over the cough, probably because my body was under the stress of radiation. Although I had initially tried smoking cannabis to combat the nausea (yes, I have experience with it,) I knew that it wasn't good for me to vaporize while I had a cough. So I used a tincture I had used previously, but it had a pretty strong lime flavor that wasn't good for nausea. I found a different kind at a local shop with a milder flavor, but even when you put a tincture that is designed to be absorbed more quickly by your body, there is a significant delay when compared to inhaling it. Anyway, it worked, better than the Zofran because it didn't cause constipation, and being intoxicated didn't matter much since I was spending most of my time at home. I certainly wasn't going to try the Compazine again. 

My cough finally began to subside about 2 weeks after starting treatment. My doctor also put me on a steroid when I started experiencing headaches, which I was told were probably caused by some brain swelling. It sounds so awful, but it's actually not that bad. It just feels sensitive when I lay down, especially on certain parts of my head. The steroid helped with both my nausea and headaches. 

Nights were hardest at first, but for the most part that was when I first started getting the swelling. Sometimes I would wake up in the morning with a bit of a headache, but it would go away after I got up and took my steroid along with a little breakfast. I lost ten pounds fairly quickly at the beginning, but then my appetite was vastly improved by the steroid and I quickly gained it back.

A couple of weeks ago I started to experience what I can only describe as a change in my taste buds. I haven't lost the sense of taste completely, but I began to crave foods that have a lot of flavor or spice... something that I normally avoid entirely. I have done some research on how c-word cells use glucose as energy, so I've tried to avoid sugar, but the other day I went to two stores just to try some strong flavors that my taste buds would enjoy. I got spicy Doritos, mustard and onion pretzels, oreo mint ice cream, black and sour jelly beans, and cinnamon taffy. I know that Doritos aren't healthy and I may have been craving them because of the cannabis. I have always enjoyed the flavor of black licorice, even though I know it's a very divisive topic. But the flavor didn't do it for me. The cinnamon taffy and sour jelly beans did! 

This weekend's been interesting. I started noticing a change in my vision in my right eye. The doctor said this could be the radiation or steroid, but it should dissipate a while after treatment. It comes and goes. Last night, I developed a headache, but I'm glad I went with my intuition and iced it, took a hot bath, had a popsicle, and slept with the head of my adjustable bed up. I didn't take Relpax. I usually do for migraines, but it makes me feel so awful and these headaches are different. This morning the headache was gone, and best of all, no Relpax hangover! 

3/31/13

My dog is slowly losing her eyesight. If she is able to live happily anyway, I know I can. I remember walking a dog that was completely deaf and blind. Even on days when it was raining, he would start to run and frolic. It must have felt so good to him just to feel the wind on his face and smell things in the air, so I try to do those things when I walk.

I've been meaning to make a list of the things I'm grateful for, so here it is.

1. I'm grateful for Matt and everything he does for me. An extreme example of something he's done? Let's just say that things have been coming out of both ends, and he didn't care; he still wanted to come in and help me. He has sat with me, coaching me through hours of pain, nausea, vomiting, etc. 

2. I'm grateful for our home. It took us a while to get one because the market was so competitive. But we both love it. It's comfortable, cute, and has a great yard. 

3. I'm grateful that Matt just got an unexpectedly large raise. It helps even more with the next thing I'm grateful for...

4. Disability. My migraines got to the point that I could no longer work, and I was approved when I combined it with my new condition. I was told that I would definitely be denied the first time and that I would probably need a lawyer to get approved. For me, that wasn't true. 

5. My dog Ruby. As I said in the beginning of the post, she reminds me to live in the moment. She is the sweetest dog I've ever met. She barely barks, is so quiet, and rarely any kind of bother. She's adorable and loves to cuddle in her old age. 

6. That we are fostering or adopting a cat. I'll go into the story of adoption in another post, but we will probably get one after our trip to Arizona since it's coming up and we won't have to figure out a sitter or leave him/her alone. Caring for a new animal will quell my nurturing side for now.

7. Restorative yoga, my teacher Trudy, and the other women who come regularly. They are all older than me, but it doesn't matter. They care about what is happening to me and wish me the best. I feel that they are behind me, cheering me on.

8. I'm so grateful that I don't get seizures. I didn't realize this until recently, but they are usually the thing that prompts doctors to have their patients get scans which eventually lead to these kinds of tumors. Mine was just a visual disturbance... scary, but not as scary as a seizure. Seizures mean that you can't drive for six months to a year, depending on the state you live in. Matt and I hope I will never get one.

I'm thinking about getting a tattoo on my inner forearm that says "Here Comes the Sun," with a sunrise incorporated somehow. It would serve as both a reminder to me and a reference to relentless positivity to others. I've thought about getting one for at least half of my life, but didn't feel I had a profound enough reason. If this isn't one, what is?