Wednesday, October 28, 2009

I made the mistake, when I went to my appointment at the Cancer Center today, of sitting in direct line-of-vision to the treatment room. And then I made the mistake of not moving when I noticed that I could see where I used to sit in a blue vinyl recliner with an IV stand next to me and the icy colorless cocktail dripping into my chest.

Moment of panic--they're going to come get me and say, "Sorry! We were wrong! Your cancer is back. Let's hook you up, girl!"

The guy in scrubs came to fetch me and neither he nor Shirley the nurse practitioner said those words. I asked Shirley about calling the surgeon to get Penelope removed, and she said I could do it; their office doesn't make those calls.

So guess what I did when I got home? Yep. My appointment with the surgeon is Nov. 19.

Tuesday, October 20, 2009

It is now officially one year and 20 days since I began chemotherapy. It seems so foreign to me, so far away from my current reality. I still know that I went through it, but I am very happy to forego that experience this October. When I hear myself griping about something, I think, "But I'm here! Why am I complaining?"

Paradoxically, now that I have hair, I am irritated by it. One Saturday a few weeks ago, I couldn't take the pressure any more and I called every hair salon in Provo until I found one with an appointment immediately so I could get my hair cut. I assume that I will slowly grow used to it, and I always have hats to use on Bad Hair Days!

I am taking organ lessons, and emailed my teacher a couple of weeks ago to say that I had been sick and so could not have a lesson. I didn't explain that I had had a horrible cold, which I now think was actually Swine Flu, and that it had taken me nearly two weeks to feel better. She panicked, because her daughter died from the effects of cancer a year or so ago, and she and her husband had just returned from a memorial service held in her daughter's honor in Colorado [the daughter was a firefighter and had her name on the memorial stone for the year]. She pictured all of that happening to me, apparently. I am so happy that it hasn't!

Reuben is having his stuffed dogs snuggle on my shoulder. I am wearing my fuzzy purple robe and pink slippers, and I'm ignoring the chickens. After I'm done here I will go sew and ignore the dishes! More and more cousins keep appearing, as this is the Week Of Wedding [only three more days, James and Nicole!]

I love chaos and noise. I love ignoring housework. I love having my phone fixed because Otto came yesterday to analyze wires and accidentally broke a toy bin by attempting to stand on it. I love braiding Sariah's clean wet hair. I love hearing Jane's voice on the answering machine saying that Ian is in Reuben withdrawal and needs a fix. I love opening a gray velvet box from Frank and finding a Damascus steel pendant he made. I love impending dart gun wars. I love hearing Jazon gripe about reports for work. I love running into Marianne and Julia and Jared at concerts. I love reading my book in the car as Nathaniel and I wait for the bus to come. I love kissing my husband before he is late to work because he forgot he had a meeting at 7 a.m. and we snuggled in bed instead.

Tuesday, September 1, 2009

Had a follow-up with the radiation people yesterday. They agree with me that I am amazing. I don't really mean that the way it sounds. The good facts:

1) I have no pain in my bones.
2) I have no lumps.
3) I do not have headaches or fuzzy vision.
4) My radiation scars are healing.
5) I do not have big bruises that don't go away.
6) I have energy.
7) I am able to eat normally.
8) I am not bleeding unaccountably.

We also discussed hair. And Penelope. And the possibility of removing Penelope. And children in preschool. And thyroid gland removal [hers]. I weigh 150-something.

I also snuck back to see Gary and Brooke in the tech room. The picture of Brooke and me in an outrageous hat on my graduation day is still up. They were just coming back from lunch, but at least I got to say hi and make small talk for a minute. I miss them. But I don't really want to go see them every day for radiation therapy.

My hair is getting long enough to be annoying. I trimmed the bits in front of my ears by myself a couple of Sundays ago because I couldn't stand the sticking-out business. And now I'm bothered by the bushiness on top. Ironic that I'm irritated by hair so soon after being so excited that it was growing again.

Sunday, August 23, 2009

I played the organ for Ken's funeral yesterday morning. My tribute to him is that all during my cancer treatments and surgeries and doctor's visits and feeling yucky, people would tell me how wonderfully courageous I was being, and I would think, "This is nothing compared to what Ken is doing and has done for the last 20 years." My goal was to face it all like Ken and Leslie did. And now Ken is free from MS! Congratulations to Leslie! I hope I get to know Ken better in heaven.

Friday, August 21, 2009

I can't remember how I used to do it. How did I get all the kids off to school before I had cancer? How did I think up dinner menus? How did I get everyone to do their chores before I had cancer? How did I ever get all this laundry done? I have a yawning space in my chronological memory, and I'm standing on this side with my toes at the edge, squinting over to the other side trying to see what that Me is doing, but I can't quite make it out.

I'm not even good at buying groceries anymore. Reuben and I went to the store this morning (or was it yesterday?). The list was minimal and basic -- milk, yogurt, bread, shredded cheese, tortillas, etc. Reuben rode in a car cart, and when we got to the check-out stand, the checker gave him a balloon because he was helping put the items on the conveyor belt. He chose green. As I was attaching it to his wrist, the gray-haired lady bagger said, "What happened to your long hair?"

I must have stared blankly at her, because she said, "Didn't you used to have long black hair, really long?" So I explained that I had had cancer treatments and my hair had all fallen out, and this was how it had grown back. "Oh," she said, "it wasn't curly before, so I wondered. What kind of cancer?" So I told her, and she said that her mother had died from pancreatic cancer, and could she help me take my groceries out to the car? "No," I said, "I'm fine, thanks."

On the way to the car, it seemed amazing that the bagger had recognized the current Me as the same body as the previous Me with long hair. She knew who I was. And she hadn't apologized, the way some people do when I tell them, as though they were suddenly ashamed of having asked a question that prompted such an answer. Or as though they wished I hadn't answered it at all, but used some euphemism instead.

I'm not a euphemistic person. I have cancer, and so I will tell people when a small-talk question unexpectedly reveals deeper issues. I am not embarrassed about it; it isn't some secret that I have to hide, but I'm not going to run ads in prominent newspapers either. I've discovered that cancer is ubiquitous; it pops up everywhere I go, everywhere I look, in whatever I read or whomever I talk to. Did I just never notice before?

When I got home and was throwing the grocery list away, I noticed that I had forgotten to buy laundry soap and bread, even though they were right there on the page. And later when I was on my marathon 7-hour taxi driver back-and-forth-with-different-kids-each-time stint, I caught myself thinking, "How on earth did I used to schedule things so I could be home to make dinner?"

Friday, August 14, 2009

I know, I know. I should have warned you that I was taking a hiatus. It was unintentional, however, and I have only fleetingly realized I was neglecting to write, because summer is not the calm time I remember as a child. I was very busy. So, here is a condensed version:

End of May: I feel good enough to go to Haruka's graduation (5/29) and I cheer loudly for everyone I remotely know. I am so thrilled when Marianne's son Paul walks that I almost cry. We sign up for the summer reading program (5/30) and Bethany and I attend the first pottery lesson. Fun, and harder than it looks.

June: Steve leaves for Philmont at 5 (6/1), Sariah starts swim team at 6 and Chris has to be at work in Heber by 7. Thanks to Dad and Nanika for being me in other cars taking them places. Welcome to summer! I become a taxi driver: swim team, cello lessons, pottery class, play practice, clarinet lessons, music rehearsals, doctor's appointments, Irish dancing, trombone lessons, swim lessons. I also become the Master Scheduler: piano lessons, baseball, tennis, work, parent meetings, cousins playing, scouts, Steve's summer job teaching workshops. I start practicing the organ while Sariah is at swimming because I have just enough time to do all my exercises before I have to go pick her up.

Compared to cancer treatments, this is a whirlwind! But I feel good, I have energy, and my hair is starting to look nice. Reuben has double hernia surgery (6/16), Bethany and I make shirts for her fellow castmembers of Much Ado About Nothing (6/23), which is very funny and involves several people falling in a kiddie pool disguised as a fountain. I ignore all invitations to cancer-survivor-activities. It becomes pottery summer: Monday, Tuesday, Wednesday, Thursday, Saturday - somebody has a class. We make whistles, bowls, elephants, turtle bowls, butter dishes, mushrooms. Monique lends me a pottery wheel for the summer and gives me some pointers. I'm supposed to practice 2 hours every day. HA! We take Chris to Stake Youth Conference late (6/19) and decide that Heber Valley Camp would be a great venue for our next family reunion. Nathaniel has Day Camp (6/25). We spend a day at IKEA with the Alice Anne and her daughters (6/26) and attend Nicole's first temple session. We head to SLC for the Coleman Reunion (6/27), where we see Steve's uncle who is also dealing with cancer. I feel guilty because I look like I'm doing better than he is right now. I see Dr. Wallentine's post-treatment nurse practitioner [I think her name is Shirley] and she says the blood work looks good (6/29). I ask what to watch for and she says pain that doesn't go away and doesn't move around. I ask what "good" blood work means, and she says it doesn't predict anything, but lets them see that nothing squirrelly is going on. Not very comforting, but then I'm pretending that I'm well, so it doesn't matter. Girls leave for camp (6/30) and we play games with the Robinsons at Snowbird.

July: Joe heads to Day Camp (7/1), Reuben has a post-op. We celebrate Steve's parents' 50th wedding (7/3) and the Robinsons bring "Something strange is afoot at the Circle K" t-shirts for everyone. Blais takes a million pictures. I have my first after-cancer mammogram (7/6), and it is clean! We go to Logan (7/8) to play while Steve teaches; we find a small zoo at a park [entry fee 50 cents per child, dollar per adult] and the favorite thing is feeding the ducks and watching the turtles; I find a great dress at the sidewalk sale and Sariah is shocked at the cost, but Steve insists that since it's the first dress I have purchased in about 15 years, I should buy it; we swim; we try to go to the temple but it's closed for construction. We extract honey (7/11) and end up with at least 10 gallons!
We go to the Jacobson reunion (7/13) and Steve's ice cream and sorbet are hits [thanks to Pat for the sorbet recipe]. Nathaniel informs me that he can't eat that for dinner because he is a vegetarian; I wonder how he can eat regularly last night and then suddenly be vegetarian today (7/14).

I decide that since I'm so over the cancer thing, I'm going to take organ lessons and pass off the requirements for Level I and start on Level II before the organ workshop in August. Steve and I start walking up the Big Hill in the mornings and I am amazed to find that I am in better shape now than I was the spring before cancer! I can make it up the hill without dying.

Su & co. arrive and we miss the quilt show but make it up by doing sealings for my father's great-grandfather, after getting somewhat lost taking Nathaniel to his first orthodontist appointment (7/15). I have my first organ lesson and pass off nearly everything for Level I assignment 1 (7/24). We see Steve's Uncle David and family for July 24th picnic. The dentist costs so much that we only do Steve and Nathaniel. We discover that if you get to the Veteran's Pool 45 minutes before closing, they let you in free. I drive Haruka to USU to turn in proof of residency and see a dorm room and measure it (7/30). We see a Cafe Rio for lunch and celebrate. On the way home, I crash into the back of a car which then crashes into the car in front of it. I am cited for improper lookout and we make it to Harmon's in Orem in time to notice that oil is dripping from the engine. Nanika rescues us and I confess all to Dad. My first ticket in six years. I cancel my second organ lesson because of lack of practice time.

August: The organ workshop is fantastic, of course (8/4-7). Bonnie Goodliffe, tabernacle organist, is the keynote speaker. She cites the Dear Abby article in which a man inquired whether Abby thought he should enroll in medical school even though it would take seven years and he'd be 42 when he got done. Abby's answer: How old will you be in seven years if you don't go to medical school? Bonnie also talks about learning poco a poco, and how much we can get done if we just plug away at it. Do I sense a theme here?

I have a great time seeing my organ friends, most of whom ask about the new hairdo, so I tell them why and they join me in being glad that I'm still around. I find out that I remember a lot more music theory than I thought, and I have fun trying out the interesting organs in the practice rooms. I have a private lesson and play for a master class. I get answers to some mysteries about the organ in my church. I remember why I love learning so much! I feel energized and excited!

While I'm learning and growing, the kids are seeing the eye doctor. Chris is the only one who needs new lenses, and since he broke his glasses earlier this week, we don't mind so much. We help clean the church (8/8). Kaylie and I meet at the DI to chat while Anna buys dishes etc. for school (8/10). I love how you can see a friend once in four years and it feels like you saw her just last month--everything flows. Nathaniel gets his upper braces on (8/12) and I spend my first evening since cancer volunteering at the music/dance library, cataloging. I've forgotten some things but not so much that I panic. I have fun! Got Penelope flushed with saline solution, and helped Su & co. move stuff from the shed to the garage (8/13) in preparation for their next move, to Kim's town! Since the church is off-limits because the carpets are being cleaned, I call several people to try to get keys to use another organ to practice. I finally get keys, after getting lost three times trying to find the address. I unlock the church, but the chapel is locked. I locate a chapel key, but the organ is locked. I find a key in the bench! to unlock to organ, but can't find the power switch. Finally see that the power is turned on with a key, which is luckily in the lock already! After that, the practice session was a breeze.

Today: I thought it would be a calm day. I'd better stop thinking that, because it never is. Overseeing practicing, paying bills, getting chicken eggs, and talking to Kim on the phone [at last after a week of phone tag] took most of the morning. Then I took Nathaniel to cello, and went grocery shopping with my mother. When we were done, I had only 15 minutes before I had to leave for my organ lesson, at which I passed off the rest of Level I assignment 1 and most of Level I assignment 2. Unfortunately, I wasn't watching the clock, so I had to call Nanika to take Sariah to her dance class and then I drove and met her there to bring her home. Her class went 15 minutes over, so I had to rush home, draw a map for Chris and Bethany, and get Chris to drive me to meet Steve and his parents for dinner. Whew!

It's been a fun summer, and I'm ready for school to start, except for the shopping for clothes part. That's tomorrow.

And, for all of you who are wondering, I'm not planning to grow my hair out again. Having short hair is too much fun and too easy. Besides, it makes my dangly earrings look even better :)

Friday, May 22, 2009

Sometimes I can feel the unwillingness inside me, just like a big lump in my stomach. In Finnish, it's "jaksaa"--officially described in the dictionary as "to have the intestinal fortitude to...." [pronounce it yahk-sah]

En jaksaa. I realized today that having children is helping me, in one specific way. Probably lots of ways, but one important way right now. They make me get out of bed and do things I don't want to do.

If I didn't have children, I would have stayed in bed all day today. Slept, or read escapist fiction sans people dying of cancer, or stared up at the ceiling and reminisced. I would not have had Reuben sit on my lap while eating breakfast, as he does daily, because I didn't jaksaa to actually eat anything. I would not have gotten dressed. I would most definitely not have gone to the school for the second grade Hawaiian fest and watched Joe clunking painted dowels on the floor and then on his partner's dowels while singing incomprehensible Hawaiian words and wearing Nathaniel's Hawaiian shirt, looking very much as though he belonged on a beach and a surfboard.

Is this depression? Feeling like everything is too hard, requires too much effort, is overwhelming, is not tasty, or interesting, or worth expending energy? I know that Dr. Clark and his nurse mentioned depression as normal during radiation, and I know other cancer survivors have said that it took six months, eight months, a year before they felt better. My body feels better, but my jaksaa doesn't.

Maybe my children are saving me from sinking deeper. I enjoy interacting with them, and with my husband and my mom and my friends. I know I sound cheerful when I talk to people, because that makes me feel cheerful. And I do manage to do things. Some things. So hurrah for children!