What's Goin' On

I am hoping in the not too distant future to write a blog post that has nothing to do with my health. Won't that be nice? But since there are people asking, and I haven't written in awhile, here we go...

I have officially started radiation treatments. I go to the hospital every day at 2:45. Treatments last only a few minutes. It's a bit like getting an X-ray. They take a few minutes to line me up. The tattoo dots on my skin line up with the fixed lasers in the room so they hit the same spot every time. Then the machine rotates to three different places and emits a little buzz each time. The treatment doesn't hurt.

The field they are radiating is my whole right chest side. It's not a small beam. And for anyone who is curious, the radiation is generated by accelerating electrons around a coil in the machine, and not by any type of radioactive material. Here's a shot of what it looks like.




So far, I haven't had a bad reaction. They do say the over time you experience fatigue and it's very hard on the skin. I can tell that my body is taking a hit and am trying to take very good care of myself by going to bed early.

I have done 11 treatments, and have 22 more to go. The plan is to finish the first week of March.

Right now my biggest challenge is juggling everything that's going on. Adding a daily trip to the hospital into my schedule makes for more chaos than I had bargained for.

I'll keep this short for today, as I need to turn my attention to work and a whole other host of things that are piling up on my desk.

Love,
Susan

The Bad Day Blog

Yesterday a friend gave me a compliment. "Susan, you are a superhero. I don't know how you've dealt with all this, kept on working, and have a family. It's really inspiring." It was a gracious and kind thing to say. But I had to respond with the truth. I don't feel like a hero. And I certainly never set out to be one. And I have a lot of bad days that never make it to this blog.

Usually, when I have a bad day or just need to cry, I turn to Brett or a friend, or write about it in my journal. By the time I post on the blog I've given myself a few days to gain some perspective and pull out of my wallow. The upside to this is that I'm not bleeding all over the internet. The downside is that I can often gloss over the hard parts.

Well, today was a bad day. And my superhero cape was lost at the drycleaners because I wasn't handling any of it with grace or ease. Here's the highlights.

This morning my insurance company called. They have been denying about $6000 in claims for several procedures done at the Seattle Cancer Care Alliance. They tell me that SCCA sent them the wrong code for tissue markers. However, they (the insurance co) are not allowed by law to call SCCA and tell them the correct code. I need to do that. I am given a list of claim numbers, each about a mile long and am told to call SCCA to straighten this out. So now on top of everything I am supposed to be a coding trainer? Brilliant. I am in love with the American health care system and it's staggering genius.

At noon, I head off to the Cancer Support Community for a talk on "Nutrition After Cancer Treatment." There are 4 other people there, all of them are retired gray-haired ladies. I am the only bald person there. I often forget that this is the real face of cancer... the elderly. I feel depressed and isolated being with this group. None of them work or are raising a family. They live in a different world.

One of the ladies is quite overweight, bossy, and loud. She asks me, "What happened to you? You look so young!" I want to tell her that it is none of her business, but I just smile and change the subject. I kick myself for not having a snarky comment at the ready.

Bossy Lady then proceeds to hijack the nutrition talk by stating that even if you eat all organic fruits and vegetables, you still have to wash them with pure filtered water because there are so many pesticides in our tap water. She thinks these pesticides are why so many young people are getting cancer now. She casts a sideways glance at me.

I want to rebut this statement and lay out the facts. I want to talk about water tables and nitrate leaching and how we have very little of that in Montana. I want to talk about how glyphosate (Roundup) binds to the clay particles in soil and that because we have highly calcareous soils here, the CEC (cation exchange capacity) is very high and our water is probably very safe. But I don't. I get out of there as fast as I can.

Later in the afternoon I head to the hospital. Today I had a simulation for the radiation treatments. It's similar to the Spanish Inquisition, only there are no priests involved. I lay with my carved up chest fully exposed to yet more strangers while they poke and prod me. My arms extend over my head and hold on to a bar. I am on The Rack, vulnerable and embarrassed. Then at the last, they tattoo several small dots on my skin so they can line up the machine for each treatment. The tattoos hurt. I say a swear word. They laugh.

During this time, I am biting my tongue so I don't cry. I took my mom to a lot of her radiation treatments before she passed, when they were radiating the tumors that had moved to her spine. I think of her now. This damn machine makes me miss her. In a twisted way I'm glad she isn't here to see me like this.

Before I leave, I talk with the PA about hormone therapy. We are supposed to make a decision soon about what we want to do; standard tamoxifen, or a stronger clinical trial. Brett and I are exhausted from making these decisions. I am at the point where I really could care less. I am tired of wading through research papers to understand complex terminology. And the potential side-effects scare the crap out of me; early menopause, hot flashes, increased risk of uterine cancer, brittle bones, muscle pain, osteoporosis, etc. And, the heartbreaking clause for me, probably no more children. Lovely. By this point, I seriously need a beer.

I head home and call it a day. I didn't accomplish anything for work today, which is frustrating.

There is no food in the house. We head out to dinner and throw caution to the wind. Good food helps. Tonight I forsake my vegan diet and order whatever I want. I get shrimp risotto with a glass of malbec. It's amazing.

Maybe tomorrow will be better.

One Month Out

The Naked Truth - No Makeup and No Hair... but Lots of Joy.

Well, here it is January 9th, exactly one month since my last chemo. It's amazing what a difference 4 weeks can make. I started feeling better right around Christmas, which was the best present I could have asked for. We spent the weekend in Billings with family. It was the first time I had been out of Bozeman in about 6 months, and it was such a feeling of freedom to hit the road and take in some new scenery. For New Years, some friends came over to our house and we rang in 2011 at midnight. So far, I have been able to make it back to the gym for brisk walks on the treadmill. And I've even been out xc skiing and showshoeing with my good friend MJ.

This past week, I attended a 3 day agronomy conference at MSU to maintain my CCA certification. I was very nervous heading into it. I hoped my wig would stay put and that I could make it from 8 am to 5 pm without taking a nap. I did it and had a good time in the process.

It was fantastic to not have to go to the hospital for a few weeks. So it was a bit of a shock to go back this Friday. We were there all morning, meeting with Dr. H to talk about hormone therapy and Dr. K to talk about radiation. Because my cancer tested positive for estrogen receptors, I need to take medicine (tamoxifen) for 5 years that blocks estrogen receptors in the body. We are trying to decide between this standard therapy or joining a research trial with some stronger stuff.

Radiation starts this coming week. Research trials in Holland have shown that radiation of the affected area increases absolute survival by 12%. I will go every day to the hospital, Monday through Friday, for 33 treatments. Once they get me set up, it takes only a few minutes, and the side-effects will be much less than chemo. Fatigue seems to be the main issue. Radiation actually is comforting to me in a strange way. It was a treatment my mom did not get when she was going through breast cancer the first time. So having access to it helps me believe that my outcome will be different than hers.

I'm finally brave enough to post a photo of what I really look like these days. If you look close enough, you can see some hair on my head! At first glance, this doesn't look very pretty. I often shock myself when I look in the mirror. I'm unrecognizable to myself. And I'm too bashful to go out in public without make-up. But for me, this is a great photo, because I'm simply here. I'm tired, but feeling better. My body has taken a lot of abuse, but it has kept on going. My emotions have been all over the place, but I managed to keep it together when it mattered. I always want to remember this picture, because it represents so much. I never want to forget just how hard this fight has been and how precious life is to me.

Little things are miracles. Today I folded laundry. Last night I made pancakes. Grace had the stomach flu this weekend and I was grateful to be strong enough to take care of her. Grateful she didn't have to take care of me. Brett and I painted our sunroom today. I was ecstatic. Look at me! I'm on a ladder!

On Thursday when I saw Dr. H at the hospital I yelled "Jack!" and gave him a huge hug. It was a pure upwelling of emotion. I was as surprised as he was. I seem to be giving out a lot of hugs these days.

On New Years, we asked each other what were the top worst things and the top best things about 2010. I will spare the details on my top worst things. But there was some good in 2010. Here's my list in no particular order.

1. I have an amazing husband who has loved me and supported me through this whole thing. He tells me I'm beautiful even when I look like a POW. (Maybe he needs new glasses?)

2. Even though she has been through a very difficult year and has been asked to handle more than most 9-year olds, Grace is doing very well. It's a relief to see her doing well in school and enjoying her friends and her life.

3. My Aunt Carol. Anyone who knows her will agree. She was our Ace in the Hole when we went to Seattle for surgery. She took care of all three of us and knew just what to do. For example, I didn't know that I would need pajamas with buttons, but she did and had them packed and ready to go.

4. My mother-in-law. She came to our rescue and took great care of us in August. To this day, if I see one of our sock drawers is organized, I silently say "Thank you, Judy."

5. My father-in-law and Patsy. They drove to Montana all the way from New Jersey. Once they got here, I don't think they stopped working. We have a light switch in the basement, thanks to Pete. And pictures on the wall thanks to Patsy. And so much more.

6. Bonnie and Steve. For encouraging us to look into "The China Study" and pursue a plant-based diet. And for all of their kindness.

7. My dad and step-mom Nancy, who told us to go to the Mayo Clinic or Univ Washington when my diagnosis started to get complicated. And for visiting so often and helping out.

8. My brother Jeff. Who shaved his head with me, came over whenever I needed a hug, watched "The Hangover" with me when I needed a laugh, and was thoughtful enough to put a Christmas wreath on our front door.

9. My brother Paul, for shoring me up with Churchill quotes.

10. Janet. For sending me jokes all the way from Uganda.

11. My college friends. For sending hats and scarves. Cheryl, for calling. Elaine, for checking in.

12. Sarah, for all the thoughtful things.

13. My book club and church friends for bringing meals, folding laundry, and lifting me up.

14. Robyn, for understanding.

15. The Foxes, for visits and painting.

16. MJ, for being a shoulder to cry on and a huge support.

17. Aunt Kristen and family for delivering groceries every week. What a huge help.

18. My chemo buddies... everyone who took time to take me to chemo and sit there for hours on end.

And there are so many, many more. The best thing about all of this horrible-ness has been that we have expanded our circle and have grown closer to our family and friends. It's where we should have been all of this time.

Full of gratitude,
Susan