Letter to the Editor:

Dear Editor,

I would like to talk about an issue that affects many Americans every single day. I would like to talk about cancer treatment.

As someone going through cancer treatment, I would encourage those in positions of power to continue funding for research and development of various cancer treatments. Particularly with an emphasis on treatments that do not burn, make sick or generally debilitate their patients. I realize that curing cancer is not something you can get for nothing. But I’ve been dealing with the “nothing” (aka, side effects of cancer “treatment”) for many months now, and I’m getting pretty tired, and way beyond sick, of never ever feeling good.

I finished radiation nearly one week ago, and I was kind of hoping that I would be feeling better by now. But my stomach still hurts, and thanks to the lingering effects of radiation, my burn continues to get worse. I know that this will pass, but I do wish that curing cancer wasn’t so detrimental to good health.

In my opinion, all cancer patients should be fully supported by the government during treatment. Especially since, let’s face it, it’s governmental policies over the last 50 years that have led to such a dramatic increase in cancer cases in our country (way to lobby, Monsanto). Better yet – all those companies that make products (pesticides, toxic chemicals, cigarettes, etc) directly linked to cancer should be forced to support cancer patients during treatment! Ha HA!

But since the government and those companies don’t support cancer patients, and in fact prop up a health care system that provides more hurdles than help when it comes to getting health care, I will just lay on the couch till this passes and hope that I feel well enough when the time comes to go back to work next week. Thank goodness I at least enjoy my job.

Sincerely,

Aubrey Bean

Thin-Skinned

I think that once I can get this radiation burn healed, and my intestinal tract to stop giving me problems, I’m going to be in tip-top shape!

What seems to be happening is that the top layer of skin on the burn is starting to turn grey and fall off, and there’s this red, raw layer underneath that TOTALLY HURTS when ANYTHING touches it. I showed my radiation nurses my burn this morning. They were completely sympathetic and sweet, although all my doctor said is that he’d rather burn the heck out of my skin than my bowels, so he’s fine with this. Huh. (I kind of make him sound like a jerk, but truth is – I really like him. He’s a great doc.) So I got a prescription for this gel that has lidocain (sp?) in it and is used on burn victims. Time to numb my behind!

My nurse said that in a week I’ll feel like a new woman, with my new layer of skin. She also said that it’d probably stay tanned and could be a weird ice breaker for parties. I’m wondering who she thinks I’m going to show a tanned square on my behind to. What kind of parties does she go to?

What I Didn’t Do Yesterday

I didn’t get out of bed till almost noon. I didn’t shower till about 5pm. I didn’t call our landlady about the radiator leak. I didn’t call Ben about fixing Chris’ computer (actually, I feel bad about that one). I didn’t listen to my voicemails. I didn’t open up my mail. I didn’t balance my checkbook. I didn’t do my physical therapy exercises. And – oh yeah – I didn’t go to radiation or chemo.  (Still aglow over the fact that radiation is done!)

What I did do was: read in bed till almost noon, watch movies on the couch, AND . . . my big accomplishment for the day . . . clean the kitchen. Then Chris and I went for a walk and saw a SIFF movie last night.

So yesterday was a pretty nice day.

I’ve got a lot to do today, though.

I’M DONE!!!!!!!!!!!!!!!!!!!!!!!

Ha HA!!!!!!!!!!!  I’m DONE! I’m done I’m done I’m done I’m done I’m done!!!!!!!!!!!!!!!!!!!!!!!!!!!

I’m sitting in chemo right now celebrating the fact that radiation is over. My head’s woozy, but it blends right in with the general sense of elation. I DON’T have to come in tomorrow morning. I get to stop taking the horrid pills. I’m on a high.

We had a little party in radiation this morning. I took a cake. Hopefully I’ll be able to post some pics later on, but I’ll have to wait for my team to email them to me. Lots of hugs. Lots of good wishes.  Probably not tonight, because Bobblehead is back – but some champagne will be busting out this weekend. Chris and I have been through a LOT these last few months . . . and we’re going to celebrate the fact that it’s OVER!

The Last Week

This is it. The final stretch. I finish chemo/radiation on Wednesday.

And about time. I’ve got a huge radiation burn on my bum that is starting to make clothes uncomfortable, I’m totally exhausted, and the gastro-intestinal problems are back full force. This could not be ending any too soon for me.

I can’t believe that its almost over. I’ve been doing this for three months now. It’s my routine. I’m trying to feel nostalgic about it ending, but at the moment, with my burn hurting me, I couldn’t be more excited for the finish.

I feel like I should have done more with my time during treatment. I had all these grand plans about picking back up my French, practicing my fiddle every day, going to the gym several times a week. And really, it was a good day if I got the kitchen cleaned. It was a GREAT day if I got out for a walk on top of that. C’est la vie. Can’t go back and redo it now (thank goodness).

Chris is excited for this to end, too. Every time he sees my burn, he winces. And we’re both tired of me being tired all the time. I’ve powered through “being tired” plenty in my life, but this is an exhaustion like I’ve never experienced. Way beyond “stayed up every night during finals week.” This exhaustion . . . I have to sit down and rest after taking a shower. Walking from the bedroom or the couch to the kitchen takes a pep talk (internal monologue – “it’s not that far, Aubrey. One foot after the other – you can do it!”). But it’s slowly getting easier. I never use my cane around the apartment now, and half the time I forget to use it when I go out! Baby steps.

I am definitely going to miss my radiation team. I’m already trading email addresses with a couple of them so we can stay in touch. It’s a strange little you’re-graduating-now-go-out-and-live-your-life vibe. My pleasure, guys. I will do what I can.

If you’re wondering what’s next for me: well, treatment is not over. I’ll start doing intensive chemo every two weeks, beginning of April through, oh, mid-June probably. It’s the same chemo treatment I was on in December and January. Go in to SCCA on infusion day, get infused, they hook  me up to a chemo pump that I’ll carry with me for the next 48 hours, go back and get the pump taken off, take a break for 11 days, and do it all again. After mid-June, I’ll be going on “maintenance chemo.” They’ll be putting me back on the chemo pills. For a year. Sigh (mantra – still better than having cancer, still better than having cancer . . .).

In the meantime, I get to have a whole lot of scans done to see how things are going. My radiation doctor wants to do another MRI (I found out that he’s never done one. Which is why he pitilessly continues to make me do them). And my regular oncologist wants to do a PETscan (even worse than an MRI, if possible). So . . . we’ll just wait and see how things are going! Fingers crossed.

More Adventures With Bobblehead

Bobblehead got her bed assignment for chemo within two minutes of her appointment time, setting an SCCA Infusion record! Bobblehead wanted to get a trophy, but settled for smiling really big at the front desk girl.

But then . . . doom struck. Bobblehead’s patient chart was lost! Fortunately, the savvy nurses found it within an hour, and chemo could progress.

Bobblehead enjoyed a four-course chemo treatment today. She started off with an infusion of delicious saline, flavored with just a touch of potassium. She then was treated to Irenotecan, a blend of noxious chemicals guaranteed to contimate anything it touches, but perfectly safe for ingestion! Yum yum. This was followed by a fine course of Avastin, and wrapped up quickly with Zometa, Bobblehead’s admitted favorite, designed to strengthen and possibly help re-grow your bones! Nobody whips it up like the SCCA Infusion Team!

Today was the full-meal deal, and Bobblehead is stuffed. She hopes they’ll go easy on her system for the next few days as she tries to take in all the wonderful goodies they had in store for her.

Adventures of Bobblehead (cont)

Bobblehead is back at the hospital with her mom today. She got here at 9am (yawn) for blood draw, then had radiation right afterwards. Bobblehead has developed a lovely red radiation burn on her bum, which can make sitting (and laying down and wearing clothes) a little uncomfortable. But she has aloe! Bobblehead is grateful for whoever discovered the wonderful and varied uses of aloe.

Right now Bobblehead is waiting till an appointment with her doctor before she goes to chemo. Bobblehead hopes that she’ll get a bed in chemo close to her appointment time (1pm), but she’s not holding her breath. Time to settle in for another long day.

(To be continued . . .)

One Delicious Day

Yesterday was absolutely delectable.

It was my last day before I start this final week of chemo/radiation treatment (I’m counting down right now – 15 minutes till I have to take my chemo pills again). And a friend took me to get a massage. Oh heavenly bliss! I’ve been in knots since last June, and to have someone working that tension out was . . . words fail me. The table was even heated. I’m not sure I’ve ever been more cozy or at ease wearing no clothes in a stranger’s house.

Then Amy and I went for yummy burgers (hers real, mine fake) at W Seattle EasyStreet’s cafe. And then . . . we went to Group Health to visit Amy’s newborn baby! He’s literally 2 lbs bigger than he was the last time I saw him – he’s practically doubled in size. I was hanging out in a rocking chair while Amy did her thing, and it was so soothing to just chill and be quiet in the little baby care unit. Tiny little lives all around working hard to breathe and make their hearts beat at the same time. Every time a small one cried, someone would start the “oooooooohh, shhhhhhh, oooooooh” noises. These must be universal noises for soothing. They soothed me, at least, and the babies never cried for long. I was there enjoying the peaceful ambience far longer than I meant to be.

Then I took the bus home, and got home just in time for my friend Kelly from work to come over bearing gifts of food. Probably one of the things that has kept me sanest throughout this whole process has been the fact that I have time to spend with friends and family. Sometimes we’ve had to put a cap on it when I get super tired, but overall, it’s been just as important to my emotional well-being to have these face-to-face connections as the treatment has been to my physical well-being.

Then Chris and I went out to drop off movies, and I talked him into going out to dinner for St. Paddy’s day. (His last name being Thompson, he was joking that St. Paddy’s just reminds him to collect the rent.) We went up to Olive You in Greenwood, one of our favorite restaurants, but one we don’t get to very often because its so far north and it can take forever to get your meal. But it was so delicious and the perfect way to cap off what had been an extremely pleasant day.

Now I have to go take my chemo pills. (Mr. Yuck face)

Savoring the Moment (and the Pastry)

I forced myself to get up off the duff and go for a walk today. Luckily for me, the sun appeared shortly after I set out, making the umbrella in my hand completely (and fortunately!) useless.

I made a circuit of lower QA from our apartment, and stopped about half-way through to rest in a little cafe called Nielsen’s Pastries.

Let me pause for a moment to dwell on Nielsen’s Pastries.

I’ve meant to stop in there for at least a couple of years, and just never have, even though it’s ridiculously close to our apartment (2nd/Mercer). It’s been recommended to me by friends, and today seemed like a good day for a trial. The first impression on walking in is spacious second-handedness. Despite a couple scarily-large wedding cake molds in the windows, there are neatly stacked piles of old books and magazines throughout the space, old chairs, old tables, and a couple of old recliners – the comfy, broken-in (or broken-down, depending on your definition) kind.

And then there is the pastry counter.

Let me just say that it was probably the best pastry and latte I’ve ever had. I’m sure the exercise and the cold factors into that statement, but my pastry was just perfectly crisp and buttery, with enough, but not too much, cinnamon.

But what really made my stop in there so enjoyable was watching the customers – everyone from the old couple grandly announcing from the doorway their plan to order a custom cake to the two young businesswomen guiltily buying themselves a couple cookies each in the middle of the afternoon. Every single face, without exception, lit up with delight as they looked at the selection in the display and tried to decide which one was calling their name. It was made sweeter by the fact that just moments before, that same expression was on my face.

They were also playing Fleet Foxes overhead, as if to prove their good taste.

The sun was shining in the windows, I had a good book in my hands – and the moment could not have been more peaceful or pleasant.

Wedding Planning and Side Effects

Do we care if the weather is rainy, windy and cold? No, we don’t! We’re going to go out in it and plan our wedding anyway!

Chris and I had a super busy weekend, including a fun trip to the U-District farmers market. And we think we’ve found a place to have our wedding party! I’m not spilling the secret here, though, so don’t ask.

Side effects from chemo started coming back on Thursday (ironically, the day I stopped taking chemo again) and continued to worsen through Saturday. (Do the side effects always keep getting worse unless you take the pills to control it? I thought that since I was on a chemo break, it’d clear up right away – but it didn’t and I had to be totally on top of the pills.) I finally started to get them under control on Sunday, but I was feeling pretty low on energy by then. I got up and baked bread anyway, though. I don’t think there is a more comforting or fulfilling activity you can do than bake your own bread. It’s just good for the soul.

It was nice to keep busy this weekend even though I was feeling a little sick. Just to know that I could power through, and have a fun time doing it, was good for my mental state. I finally felt like I, and not the drugs, were in control.

On my docket today:

1. Eat bread.
2. Go for a walk.
3. Do my PT exercises (sigh – I’ve been abysmal at keeping up with this).
4. Clean our apartment (yikes).