survivor

Facing the Wall

Obstacles. Fences. Walls. Roadblocks. Diversions. Challenges.

We maneuver around them daily. Sometimes with great skill and confidence. Sometimes bumbling along, bouncing into the roadblock headfirst a few times before working out a path to the other side.

When going through chemo, I felt fenced. In December 2009, my third month of chemo, I got through one treatment with a Hungry Cow Mentality. Head down, with a few strong kicks.

This week I faced a Wall. Working out with my team at the YMCA, we took on the challenge of climbing the rock wall; it soared to the ceiling of the gym. I have quietly wanted to attempt this since I turned 40; then I thought at 45 I would try it. But I was working on the aforementioned fence around that time. And since then, I have what I affectionately term a chicken arm: The underside of my upper arm has no feeling and the entire arm is slightly swollen. From surgery to remove lymph nodes, the nerves were shuffled around, so that wiggly part that most women hate, I can’t feel. I look at it and see a lifeless chicken wing.

Dressed in our team’s neon yellow shirt, I arrive early with my team mates. This is good, I think to myself. I will hoist this body with this arm at least two feet up the wall, see what it feels like, identify what muscles need to grow to make the climb to the top possible in the future. I did it! I made it two feet up the wall! My grips were strong, so I went a bit farther. I made one stretch with my left arm that was a little too big, but I had three other appendages firmly attached to the wall. I reversed that move and looked for a closer rock for the fingers of my chicken arm to latch onto. Holding that position for a bit, I let the sting of over-extension subside. I adjusted my sights and focused on the rocks that were comfortably within my reach. I saw the top three feet away. I felt a scrambling sensation. I felt my muscles twinge. I felt strong.

I slapped the top of that wall and yelled, “I DID IT! I MADE IT!” With the anchor man holding me in my harness, I clamored down the wall.

My body was shaking when I made it to the bottom. My fingers from the gripping. My legs from the energy they put forth. My biceps, both of them, from exerting power.

Focused on the weakness of my chicken wing and slightly swollen arm, I had not given much thought to the potential power in that arm: the bicep, the forearm, and my fingers.

Hidden strength. Combined strength of the whole was bigger than the weakness of one part.

Staying strong, Linda

Great to Be Alive

I’m still making my way in this “stay-at-home” mom role, not knowing what exactly that job description should entail, but striving nevertheless to be really good at it. That usually means constant movement through each day, normally to fortify the Malcolms and keep them afloat. I needn’t list the tasks, for we all have them. And perhaps like me -- no longer a farm girl who can count bales of hay put up or fields planted at the end of the day -- you have no idea where the day went or what you actually accomplished. Over the last few weeks, I’ve done things a little differently: put an “X” through two days a week to focus on writing; started a 21-day sugar detox; and exercised nearly every day. As a result I see more of what I haven’t done: 8 loads of dirty laundry scattered in the hallway and laundry room; more dishes and pans in the sink than normal; a loaded countertop of mail, packages, and breakfast dishes at 5 p.m.

After a bike ride Monday, I’m more OK with all of that today. With a goal of riding 112 miles over two weeks, I organized a bike ride for the four of us on Sunday. We rode 7 miles. Thinking I could get at least 25 miles done on my own, I drove out to the same bike trail Monday – really looking forward to knocking out a quarter of what was left. After 1 ½ hours, I dragged my pedaled-out legs and sore bum to the van, anxious for the total mileage. TWELVE miles? No. Surely more than that…

Red-faced and sore, I kicked the gravel stirring up some dust. I had parked near the bike trail in a quiet area of Groton, MA. Sunday the gravel lot was empty, but Monday several buses were parked next to a bus garage. They must have been on the road the day before. My quiet brooding over my lackluster accomplishment of 12 miles was snapped to halt when a bus suddenly revved up its diesel engine. I jumped and looked toward the roar. This is what I saw. Sometimes when I'm cussing under my breath while doing laundry, I lift my head up out of the sorting basket too quickly and catch it on the sharp, sharp corner of the cupboard. I take that as a sign: Less complaining. More grace. "GREAT TO BE ALIVE" was like that, only less painful.

I get it. Generally, most of us have been in tougher places than where we stand today. Considering three years ago this week I was focused on recovering from chemo and radiation, I would say 12 miles biked is pretty darn good.

Great to be alive. More bus ticker signs... fewer sharp cupboard corners. Please.

(Need a little inspiration? Try Baggage.)

A few blips from the Avon Walk

At the boys' gymnastics club, there is routinely a bag of frozen veggies lying on a bench. Frozen peas and corn make great ice packs. Today my left foot is warming up a bag of peas and the right is using an ice pack given to Bill after surgery on his arm. The peas feel best. I think my feet are having chemo flashbacks: occasional sharp pains. But really, is it neuropathy pain or 45-year-old-that-just-walked-26-miles pain? Before the details of the weekend fall into the vat of slushy memories, here are a few blips from those two days.

Most people walked in teams and wore team t-shirts: “Save the ta-tas” “Stop the war on my raq” “Hakuna ma ta tas” (worn by a team of 14 women who raised $38,000 this year) “Don’t be a boob. Get a mammogram.” “Save 2nd base”

And then there were the survivors with a sense of humor: “Yes, these are fake… my real ones tried to kill me.”

Signs that walkers pinned to their backs showed who they were "In it to end it" for. Most signs had several names. Occasionally there was only one person's name:

“I’m in it to end it for <- her” ("Her" pointed to her friend, a breast cancer survivor.)

A photo of a woman born in 1967. “RIP… we love you.” That one was haunting.

Youth crews cheered us on at rest stops. A 13-year-old boy with pink hair filled our water bottles while chanting, “Drink and pee, avoid IV’s!”

Yours truly at mile 8 the second day: “Ahhh, there’s a line of porta-potties – we are close to the next rest stop!” At my side, Amy: “That’s a cemetery.” My eyes sent the image of a row of grave stones to my brain as a row of porta-potties.

$4.8M raised for the Avon Walk Boston this year

Out of 2,100 walkers, 242 were breast cancer survivors.

The sign on the back of my shirt:  "In it to end it for all Princess Warriors."

I could name at least 24 Princess Warriors. Way too many...

The Avon Lady is Still Walkin'!

Coming into the home stretch, I’m walking 3 -5 times a week, 4 – 6 miles.  A week ago Sunday I did 8 miles.  This week I did 4 miles of hills in Breakheart in the drizzling rain.  I figured a little rain training would be good… just in case. Thanks much to Marcia at Silver Clay for last Friday’s fundraiser!  We had a great crowd and Marcia donated $120 to my walk.  I have reached the $1,800 needed to walk, and I am nearly at my personal goal of $2,400.  Today I’m at $2,315.  (And... just as I am about to push the "publish" button on this post, I see that I am at $2,401!!! Thanks for the push over the top, Wendy!)

My walking partner, Amy Buckley, is training hard.  She will be walking 39 miles over the two days and is inspiring me as she walks 14 miles or more a few times a week.  Amy’s mom survived breast cancer several years ago.  Our husbands and kids are making plans for which “Cheering Stations” to go to during the walk.  Recently, Amy’s 8-year-old little girl told her, “Mommy, I’m so proud of you.  You are walking to help women you don’t even know.”

Last week, I cleaned out the breast cancer corner tucked away in our bedroom.  I had been putting it off for over two years.  I threw out all the literature on getting through chemo, side effects of treatment, etc.  Held onto the wig receipt and the outline of the study I’m participating in.  Plus, laughed and cried over all the cards and gifts many of you sent.

A couple pictures hit home: ones of my brother in Iowa with his little girl on the 4-wheeler and of my nephew, who also lives in Iowa.  My niece was one when I was diagnosed; I didn’t see her toddling around at two.  She jumped from baby to little girl in the year I went through treatment.  In the other picture, my nephew was bald – he shaved his head when I was going through chemo.

Finally, there was the card that then 6-year-old Will had given me.  It was a musical card and he had overlaid it with his own drawings.  On the inside, he had written, “Good job at chemo, Mom.”

Cool kids.

The Avon Walk - Update

I’m very excited that I have nearly reached my goal of $1,800 for the Avon Walk Boston!  I am hoping that a few more donations will put me over my goal by the end of the weekend.  If I make my goal by midnight Monday, I can participate in “Early Check-in” on-line – rather than going into Boston the Friday night before the walk.  The pink wig, below and to the right, is still ready and able!  Clicking on it will take you to my donations page on the Avon Walk site. My 8-mile walk last Friday was probably closer to 9 miles!  Lake Q is a half-mile longer around than I had thought.  From that long afternoon walk, I know what one of my biggest challenges will be: the heat.  Hopefully, the 19th & 20th will be cool walking mornings.  This morning I did 3.3 miles, picking up the pace a little bit, I finished it in 52 minutes rather than 60 minutes.

My feet are sore for the first mile or so when I walk.  I have a little “flashback” neuropathy going on, plus a little arthritic-like pain that is a side effect of the test drug that I’m taking.  However, with Advil and perseverance through that initial mile, it’s very manageable.  We went to Wingaersheek beach on Tuesday.  It was high tide when we arrived, and as the tide went out the sand bar appeared.  The water was only calf-deep so we trudged across 50 years (LOL… typo too funny to take out!  It was only 50 yards…) or so to make it to the sandbar.  The water was frigid.  First our legs were cold; then they hurt; then they were numb – and felt pretty good!  That pattern made me think of my walking feet, particularly when they’ve stretched out after that first mile.

I’m happy and shocked that I have made a 9-mile walk – and know that I need to kick it up a bit over the next four weeks:  More walks during the week, including back to back long walks in about three weeks.

Easter Sunday

Easter Sunday was a great day. In Iowa, four-plus hours working with Mom & Dad outside trimming 10-foot high bushes, transplanting flowers, and cultivating a 20-acre field. This morning, Monday the 9th, I decided yesterday could most definitely count as cross-training in preparation for the Avon Walk, particularly the trimming and digging: my upper body had a great workout. As for cultivating the cornfield, I convinced Dad to let me do it. The cultivating was much easier than the convincing. Inspiration: a pick-up truck, electric hedge trimmers, long-handled trimmers, and a big International tractor.

Two years ago this week, I finished radiation. The things I did yesterday were impossible then. "Every morning is Easter morning from now on... Every morning is Easter morning, the past is over and gone..." Part of a song I remember singing as a teen leading the 6 a.m. sunrise service at church. I found myself humming it most of the day yesterday. Easter Sunday was a celebration of life... His and, selfishly, mine.

 

MRI Happy Dance

My last radiation treatment was in April of 2010. My follow-up: Alternating every six months, I have a mammogram and an MRI.

Friday, January 13th was my MRI. Driving to the appointment, I thought how crazy it was to schedule an MRI on this day. But, hey, Bill was flying home from China today. What the hell, we live on the edge of superstition.

With my whole being, I try to keep these appointments like a regular dentist cleaning or a physical. And it works – to a certain point. On that Friday it was all calm until the transfer ceremony of the blue Johnny.

Damn. I hate blue Johnnys. They are a transfer of power – away from me.

The same tech has set me up each time I’ve been in for an MRI. And after questions about any metal implants or fake eyeballs in my body, she says, “OK, let’s get your IV set up.”

Damn. I forgot about that needle. But my veins are from a line of women who hand-milked cows and carried 5-gallon pails of feed. “Wow, look at that vein! That’s a nice one.” My veins always excite phlebotomists.

A tiny, tiny prick and we are set. I don’t watch the needle entry or the taping or anything. I strike up conversation, reverting to that good old safe Iowa topic: the weather. Unfortunately, while protecting the visionary sense, another one kicks into high gear.

“Damn! I forgot my gum! I can taste the saline.” And the tech says, “Yeah, that happens to some people.” I thought she should understand a bit more. “That sends me right back to the infusion suite, hooked up to a chemo IV.” “Oh…”

We move from the IV center to the MRI chamber. “What radio station do you want in your headphones?” Country. It would be nice to hear bits and pieces of a story in between the jack-hammering magnetics.

“I imagine you remember the drill: Put the girls in the two holes.” We get “the girls” placed; then I get a panic buzzer in my left hand and hold the IV string in the right hand. Looking down, I should be able to see the wall with the magic mirror. But I’ve already decided I’m going to close my eyes because I don’t want to see a red curl flung over the mirror. For my very first MRI, the curl and I talked quite a bit about its impending travels away from my head.

The techs leave the room and turn on the music. “…I went sky-diving; I went Rocky Mountain climbing; I went 2.7 seconds on a bull named Fu Man Chu; And I loved deeper; And I spoke sweeter…” Are you fucking kidding me? “Live Like You Are Dying” crooning in my ear as I roll on into the cancer-seeking chamber?

“OK, are you ready, Linda?” Sure. “The first test will run for 3 minutes.”
BANG, BANG, BANG.

“You are doing great!” I’m not afraid of tight places. I’ve dove down to 100 feet in the Caribbean and communed with turtles and Rock Beauties. My body lies there, but my mind goes for a scuba dive. One of the most tranquil places on earth.

Three more… four more sets of BANG, BANG, BANG tests, then, “We are going to start the IV now.” Another quick hit of saline in my mouth. And I don’t think it’s my imagination that the tracer liquid has been kept at -32 degrees prior to running cool through my arm.

Finally, “OK, Linda you are all set. We’ll bring you out, but remember you are up high, and we need to lower you before you stand up. And move slowly, you might be light-headed.”

Farm girls, you know the scene of the cow being corralled into a livestock trailer? And the ambitiousness of her attempted escape? My feet flew to the ground and my horns popped up ready to gore anything in my path, with a smile on my face. The techs just looked at me. “I’m fine,” I assured them. I focused on the table with my glasses and moved to it. I thanked the techs, but one walked with me to the dressing room.

“Are you OK?” “Yup, I’m fine.” “OK, good luck!”

What the hell does THAT mean? Is that the kind of thing you say to someone after an MRI on Friday the 13th? After an IV to the ear of “Live Like You Are Dying?”

I stuck the Johnny in the bin, stood up straight, got to the car, and called my sister. I recapped the morning’s events. “Linda, she says ‘good luck’ to everyone.” We laughed.

I still think the tech needs a better sending off line. And I couldn’t think of one. “Good bye.” No good. “Have a great day!” It may be one of your last. “See you next time!” Bad omen.

“Good luck” it is.

And it was.

On Monday I got the message on my cell phone. “Linda, I’m just calling with good news about your MRI…” And this time I was in a public place, I held it together.

I rarely collapse to my knees in tears on the kitchen floor. That's an over-acted scene in a bad movie. I don’t think I ever did that in the middle of the cancer year.

But those calls that say, “You’re OK”… Boom, down. They take my breath away. They open flood gates.

They give me six more months of living cancer-free.

The Red-Toed Crab

April 16th, 2010 marked my first year away from breast cancer treatment. The day passed rather unceremoniously. Then another date appeared on the horizon. May 25th, the date of my second mammogram since “all that.” Despite my attempts to just keep it as an appointment on the calendar, it burrowed right under my skin and sat at the base of any rational thought I attempted to maintain. And it fed those ridiculous irrational thoughts as well.

I had chemo to kill any tiny cancer cell circulating. I had radiation to kill those that might be lingering in my breast. I’m on the 5-year aromatase inhibitor plan; the test drug that eats the estrogen that fed my kind of breast cancer. But the other breast… could another type spring up on the other side?

A mammogram won’t pick up anything; it’s a formality because I’m an MRI girl. Before an MRI is when I should shake and spin. Not now.

Have I done all that I can for Will, Liam, and Bill? If I’m gone, I want some sort of stability in their daily lives. For the boys to move through the days confidently. At school. At swimming and gymnastics. To love reading more than playing Wii. To get dirty playing outside. What more can I do?

Tuesday, the day before the mammogram, I had a quick pedicure with a friend. Red hot toes are ready for summer. But when I put them up on a chair and looked at them – they were the same toes I remember from June 2009. Sitting in my friend’s hammock waiting for her to return from a walk with the boys. I had my doctor’s appointment and she took care of the boys for me. Leaving that appointment, I knew. And, in that hammock looking upward beyond my toes, it was my first pissy conversation with God. “So this is it, huh? You are putting THIS in my path?” I left the hammock with a strangely confident, pissed-off attitude. It matched my red toes. Perhaps matching the crab shell I was born into, like a suit of armor. I saw the boys coming up the sidewalk, and I left the hammock hissing, “Try it. Just try to pierce this.”

Last Wednesday, tempting fate, my red toes marched me into the compression chamber. Although a tight squeeze, it wasn’t painful. However, the tech said if I got a call to come back it wouldn’t be for lack of compression! I looked in the mirror after I took off the dreaded blue Johnny to see the skin on my chest was a lighter shade of the color on my toes.

Friday afternoon I got the all-clear call while waiting in the hallway at gymnastics. “When does this get easier?” I asked the bearer of good news; the same person I had talked to the day before to say, “This is working on me. I can’t wait for the letter; please call me when you get the results.” She said it would get better with time.

Since in public, the crab didn’t crumble at the news. Although I wanted to share it with my new gymnastic-mom friends, I held back because the bigness of an OK mammogram… well, verbalizing probably would make me cry. Took a deep breath and blew out those daunting thoughts that had been rumbling since the turning of the April page on my calendar, since I had an inescapable dream two weeks ago that I had to have chemo again; since a “hot” spot was found on a friend’s lung a week ago. All that sat more thinly veiled than I realized through every meeting at school this month; behind every laugh with friends; next to me every night while reading books to my boys.

Ack… Yuck… Enough.

Onward as a red-toed crab dressed for summer. Keeping the uncertainty at bay – at least until the flip of the October calendar page, revealing a November MRI.

(The unedited journal of the breast cancer year begins here: Staying Strong.)

BC Survivor: Bumbling at the Y in the Road

(Written November 2010)

Last Thursday I had my first MRI as part of the surveillance plan after surgery, chemo, and radiation. The words I fed myself – “routine” “cancer-free” – while waiting for the results, humored me a bit. But I was in a bit of purgatory: which way will it go?

Preparing myself for the call, I remember that I’ve had a surgery since the last MRI. The pot has been stirred since the last picture was taken. I caution myself that it’s very likely to show something. That I might need another biopsy. But it will probably be a false positive. Because I’ve done everything I could’ve and should’ve to kill every last little cell.

I’m working on a marketing campaign for Liam’s school: a direct mail campaign to 10,000 households, plus supporting print ads. A skill from grad school that I’m putting into practice! It’s fun. But will this stay on the front burner when the results come back?

Volunteering at Will’s school and moving through the first year hiccups occupies another 20 hours a week – mind, body, and soul. It’s a rollercoaster. But will I bail off the coaster when that phone rings?

Waiting, I’m moving through the days, not fully being in any given moment. Bumbling at the Y in the road, like a cow with rabies, circling and looking for a way through the invisible fence. Stunned and foaming at the mouth.

A friend is finishing chemo with crazy numbness throughout her body. Could I do chemo again?

My call comes four days later: “Good news, Linda. Everything looks stable.” The false pressure keeping me afloat the last four days drains. My impulse is to sob as I push the rewind button on the answering machine to hear the message again. But a kick-it-in-the pants Murphy voice interrupts: “Get on with it, Linda!”

Back to volunteering full-time… preparing for Christmas… washing clothes – as if nothing had happened.

Six more months until the next check: a spring mammogram in May 2011.