breast cancer

The Annual Autumn Dance

Head-banging November 1st, started with my hair dryer shorting out. There was a back-up dryer in the basement that our guests from England and Paris had used in October. With me, there is no direct route from A to B in my house. I stopped to wash dishes in the kitchen on my way to the basement when it happened: a long curl fell over my left eye. I gave my head a bounce and more followed. Earlier, while getting Liam ready for school, it was only 32 degrees. I knew we had a freeze the night before because Bill fell down our deck stairs on the way out the door at 6:30 a.m. I heard a rumbling and crashing noises then silence. I flew outside bare-footed and pranced as the bottoms of my feet hit a thin, cold layer of ice. Bill was standing, stretching his back, and wiggling his wrists. A taxi was in our drive waiting for him to start his bag drag to China. “I’m fine… really, I’m fine.” Afraid of missing his plane, he walked away with a cup of hot coffee all over his shirt and suit coat. Silly string from Halloween antics stuck to his butt and his bag. Yes, it had dipped to 32.

“Why do I have to wear this creepy equipment?” Liam complained as I re-introduced him to said equipment. Winter gloves. With one step outside, he knew. “Whoa! It is cold!” and he snuggled the hood of his winter coat around his ears. The rainbow of silly string all over the drive reminded him of Halloween night. “Last night was so much fun, but I hardly remember any of it!” Often, I take this boy’s statements and superimpose them upon a 17-year-old. And my eyes grow wide at that thought. Liam’s preschool teacher six years ago called him “spicy.” That still applies, plus he has a very funny, twisted command of his vocabulary. In particular, I love his “rainbow auras.” Translation: sunsets.

Back to my hair. It’s about the length of Steven Tyler’s from Aerosmith. And with it bouncing around, I start singing the chorus from “Sweet Child of Mine.” I fall into that lyric after a dose of the spice. I screech it like Tyler but discover that morning that it’s actually a Guns’n’Roses song. This kid has no ballad associated with him. It’s all “Oh, oh, oh, oh sweet child of mine…” screaming and racing up the staff then losing intensity and dropping back down with another “Oh, oh, oh, oh sweet child of mine…” And in my rendition, “nah-nah-nah” makes up all other words in the song.

That morning, I stepped away from my standards – away from country, away from Sinatra – one of Will’s favorite artists, away from the female swooner Adele. I fill up the feed with hard rock. The dishes get done to screeches, confident guitar licks, and songs for which I only know the choruses. I could be singing lyrics about any number of socially unacceptable events, but they are turned innocent with my “nah-nah-nahs.”

I’m letting it all loose dancing around my kitchen when I realize where I am in the year. November 1st. Life in October held an incredible, bursting intensity with good friends visiting from Paris and England, Will’s 13th birthday, our 24th wedding anniversary, a big kick-off event for scouts, yet another 50th birthday celebration for me with gymnastics moms, a weekend away with my quilting friend, and a decked out Halloween. October. I rode it like a roller-coaster, knowing it had a wild start and would come to a calm end. And although I’m a day late, I realize this is a very personal annual celebration for me.

In the shower seven years ago, I washed away stubs of hair from my buzz-cut head. And the intensity of life every October since then reminds me how lucky I am. And every year, I dance… with wildly happy hair.

P.S. Some days, like today, a beautiful liquid muse is most effective.

Do you remember "Dancing on Halloween Morn?"

Me First!

Having been away from the keyboard for a while, it’s tough to decide where to start. I’m picking up at the beginning of our vacation to England, a kind of prequel to the story about our canal navigation. We were flying to England via an overnight flight that originated in Boston then connected to a trans-Atlantic flight out of D.C. We had left just enough time to get to the airport for the 7:00 p.m. flight. I remember thinking how well the packing of a six bags came together. The bags were in the van, and I opened the refrigerator one last time to see if anything really needed attention. Generally, I use this cold box as a preserver of rotting things while we are away, so the garbage in the garage doesn’t reek. My intent of this last look was to identify anything that would need to go into the deep-freeze until our return.

I saw a strange plastic bag laying on top of the egg carton. I was stunned by the contents: my monthly injection of Lupron. An important ingredient in my post-breast cancer 10-year plan. I had picked it up from the pharmacy the day before, and as I left the pharmacy, I had called my doctor’s office to make a morning appointment for the day we flew. The appointment was set – but not written in my calendar. Nearly hysterical, I looked at Bill. “I made sure everyone else was taken care of – except me! ME!”

Bill looked at me, waiting for a plan. I looked at him, trying to think of a plan. “I could do it,” he suggested. I declined. This was an inter-muscular injection. The jab of the 1 ½” needle needed to be done with a bit of gusto, but not too much gusto.

“Let’s go to the ER,” I suggested. This was a pretty straight forward emergency. My flight left in two hours. I wasn’t confident that I could take the injection with me in my carry-on then find a jabber in the UK. I definitely didn’t want to pack it in the cargo. The replacement value was too great. Over $2,000.

In a kind of keep-the-car-running state of mind, I hopped out at the ER. The receptionist looked at me. Clearly not believing I could’ve forgotten this errand. “I’ll see what I can do,” ended with a, “I would need to check you into a room and there is a huge wait. Linda, I think you should try an urgent care.” The airport was directly south of the ER. The closest urgent care was southwest of the ER. While I was in the ER, a gift arrived: a text came saying our flight had been delayed by an hour.

I plugged the urgent care address into the GPS as Bill drove. I called the urgent care office and explained the situation. Again, I could hear confused disbelief that I could have forgotten this task. I lost the call as we pulled into the parking lot. Bill dropped me off at the same door I had walked through for the lumpectomy in August 2009. Surgery and urgent care shared the same entrance at the hospital.

I carried the Lupron kit with me ready to hand it off like a baton in a relay. Two nurses greeted me and said they would try to get the attending to sign off on it, but normally, they administered only injections from their own pharmacy. “Could we see that?” Thank goodness, the hand-off had been made! Fifteen minutes later, one of them returned. “Linda, I’m so sorry but we can’t do it. You could try this organization called Doctor’s Express – here’s the number, or there are step-by-step directions in the package so you could have someone do it for you.” I wanted her to step out of her profession and be my friend. It didn’t happen.

Then and there the moment hit. It wasn’t so much a line in the sand but rather a line drawn with a wide permanent marker across the threshold of the hospital door. I wasn’t leaving the hospital without having the injection. “Could you tell me where the bathroom is?”

A running pep talk started in my head. “God helps them who help themselves.” “You got this, Linda!” “You’ve seen this done hundreds of times!” “This is nothing!” Thank goodness for the little voices in my head.

In the dimly lit public bathroom, I popped open the packaging. The Lupron syringe was in a flat plastic case, measuring about seven inches long and four inches wide. With shaking hands, I pulled out the neatly folded instruction sheet and started to unfold it. And unfolded. And unfolded. Until I had the poster-sized instruction sheet laying across the sink. I did a quick scan to find the main instructions. In one column, there were pictures included. It reminded of me when you bought a new printer and just needed the quick start directions, never mind the manual.

I folded the poster in half and held it closer to my eyes to read it. Then farther away. The writing was so small my contact ensconced eyes couldn’t bring it into focus. I stared at myself in the mirror. I scooped one contact out and threw it into the garbage followed by the second. Now, with the poster pulled close to my nose, I could see the instructions.

I followed them step-by-step. There was only a pushing of saline up the syringe to mix with the medicine. Easy. Then I exposed my right hip, reached back, and jabbed it in. No pain. With seven years of this, the area was probably calloused. I gave the plunger a push all the way and stopped when I heard a bubbling sound. That wasn’t normal. I had emptied the syringe. I picked up all the pieces to this bizarre science experiment and tucked them back into the bag. Including the unopened alcohol wipes. Those would have been a good idea given the public nature of the room.

Blurry-eyed, I floated out of the hospital and to the car. “It’s done,” I told Bill. I handed him the poster of instructions. “You better take this with you in case I start acting funny.” I hadn’t checked to see if I had hit a blood vessel before administering the drug. My body was a limp rag on the passenger seat. And the flight had been delayed another hour; we had plenty of time to get to the airport.

Once at the airport, we found the delay was due to storms up and down the eastern seaboard. If we made it out of Logan, chances were good the flight out of DC wouldn’t get out that evening. The airline had already tentatively booked us on a 6 a.m. flight the next morning. We ditched the plan to fly that night.

Adrenaline surge. Adrenaline drain. Adrenaline surge. Adrenaline drain. My own bed felt good that night.

Now, back into the autumn routine, when I work on our family’s schedule and calendar, I mumble words of a 2-year-old: “Me first!”

Life Under a Microscope

Denial. It has its place.  It calms.  It centers.

I finished treatment for breast cancer five years ago.  My follow-up plan is to have alternating MRIs and mammograms every six months.  Two weeks ago after my MRI, I recognized my breast surgeon’s voice on the answering machine.  Call me; it’s just something very small.  An MRI showed a tiny change in a nodule in the other breast.

My doctor sent me for an ultrasound and, if necessary, a biopsy.  The first ultrasound was canceled by the blizzard.  A week later, the ultrasound showed nothing.  Nothing to biopsy by ultrasound.  My doctor strongly encouraged me to have an MRI-guided biopsy.  Or, I could wait six months.  And wonder.  I waited four days for an appointment. Last Friday I had the biopsy.

Over that two-week period, most of me was calm.  Strangely calm.  I’m watched under a microscope.  Unlike most of the female population, there are many, many internal images on film of my breasts.  I had three thoughts:

First, if it is something, this is the first time it has been picked up, so I’m going to assume it’s small.  I’m going to assume at the worst it’s a surgery and maybe radiation.

My second thought was false positive.  I’m alive; I’m aging; I see changes on the outside – and the complex parts are all on the inside!  Surely internal cells and nodules will change as well.

Finally, I thought about the system of observation.  It’s working.  Something changed and now we investigate.

I denied the possibility of an all-out big lump of cancer.  Of statistics guiding my future.  I had passed the five-year mark.  I quietly celebrate at the beginning of every season opener of American Idol.  Every mid-January I’m as delighted with the show’s theme music as I was in 2010 when I had had my last round of chemo.

Denial.

Because my kids aren’t ready to live without me.

Because Bill isn’t ready to parent without me.

Because there are many more words to come out of my fingertips.

And I move to denial via statistics.  Statistically speaking, I have more of a chance dying today by getting hit by a bus while being distracted by the thought of cancer than I do from dying of cancer.  This statistic has been with me since I was diagnosed in 2009.  Today, I’m more likely to get hit by a bus than die of cancer.  I convince myself that there could ever only be one day when those statistics could swing the other way.

Yesterday, snow day Tuesday, I’m full of denial and making lists of ways to better our lives.  And, again I’m soaking in this once in a lifetime Northeastern snow event.

The phone rings and caller ID says it’s my doctor’s office.  I carry the ringing receiver to the toy room doorway and lean heavily against the door frame before pushing “Talk.”  This time, the voice on the other end – to my relief – is not my doctor.  And I know before she says the word.

Benign.

(More life under a microscope... The Eye of the Storm.)

Failure to Thrive on Social Media

My attempts at maintaining a presence on social media – Facebook, Twitter, and Pinterest – ebb and flow.  I’m not yet sure how I am supposed to keep up with the 815 people I am “Following” on Twitter.  I only have a sprinkling of people following me on Pinterest, and I seldom go on that site as I’m focusing on Twitter, then Facebook, then Twitter, then Facebook. Last week I decided to put a little money toward building my Facebook “Likes” for Linda Malcolm.  I boosted individual posts: I paid Facebook to let my writing go farther than immediate people who like me.

For one particular post, I shared “The Red-Toed Crab.”  It was a very late night, and I couldn’t sleep.  So thought I would get some work done.  I chose which countries to promote the post.  Normally, I choose the United States and England, for I have readers in both countries.  I remembered I had another reader in Brazil, so for a change, I also selected that country.

Here’s what I posted:

“I'm five years out from the breast cancer diagnosis. MRI's and mammograms are clean. The uncertainty before each result phone call still ebbs and flows. But now, three years beyond the writing of the Red-Toed Crab, the crab is intact.” With a link to The Red-Toed Crab and this picture:

I’m naïve.  Perhaps I thought my words would be translated to Portuguese when that post flew the wires to Brazil.  In the end, approximately 19,000 people in Brazil saw the post; over 250 “liked” the picture.  Six comments were left in Portuguese.  After clicking "translate," I found that five Brazilian women love my sandals and one Brazilian man loves my red toes.

Honest to Pete, my writing self would’ve fit so much better into the 1900’s hard copy style.  Last week, Linda Malcolm failed to thrive on social media.

Today, I find hard copy mighty alluring.

Riding the Strands of Fireworks

A single fuse is lit. A gust of gun powder soars into the sky as one and pops into a sprinkling of sparkling, bright fireworks. It’s not a vision of the 4th of July. It’s the explosion of everyone’s spring activities. Post spring break. Well choreographed are the questions. “Where are you supposed to be tonight?” “Who should you send these pictures to?” “Is this a practice or a game?” “What day does your flight leave?” “Where is your uniform?” “Which baseball shoes are mine?” “Do you have a white shirt and black pants for me?” “What time do you need to be there?” “What you do you want to do for Mother’s Day?” “How many more days are left of school?” And it’s me asking that last question. 21.

Families who have kids in elementary school are riding on the same combustive fuselage.

After a few crazy splintered mornings, I try to get up early enough to have a cup of coffee alone. I play some calm music in the morning. Or, I sit down at the piano for 10 minutes, letting my right hand lead the melody while my left hand struggles for the harmonious chord. I need 6 beats to a measure for a song in 4/4 time – finding the chord always take me a couple extra beats.

Will and Liam have their own morning routines, usually looking something like this. Although Liam can’t play Minecraft every morning, he can read about it.

On this particular morning, Will put down his Ranger’s Apprentice series and read my “story spinner” – what Liam so aptly named my spiral-bound manuscript… gulp… of the Staying Strong stories I wrote some five years ago.  The breast cancer year.

As we leave for school, the rocks call Will and Liam’s names.  And I do not, do not, do not want to herd them into the van.  I want to let them sit there and read, and read, and read.

Yes, we are ready for summer.  When mornings can start with the bean bags being dragged to the fort by the boys.  With a book tucked under each of their arms.

Dancing on Halloween Morn

Some stories take a while to write themselves: days, months, even years. This is Dancing on Halloween Morn.

Breathless.  It’s Halloween morning.  I haven’t been climbing stairs or jogging.  The music’s loud.  And I’m dancing in the kitchen.

October was a success.  Each day, for a second or an afternoon, I peeled back the heavy translucent rubber windshield comprised of problem-solving, decision-making, chauffeuring, worrying.  And I absorbed the colors and crispness of fall.  Colors burned impressions that will take me through to the next season of cold, through the seasons of warmth, until I stand again at October 1st.  Where I will prepare for that change which is now 47 years familiar.  With Halloween here and the month of thankfulness beginning tomorrow, I’m full.  Content.  Like I just ate a big Thanksgiving dinner that was blessed with my granddad’s words.

I cook.  I dance.  And tonight I will be a witch.  This morning, four years ago, I was GI Jane.  My hair had started to fall out with the chemo, so I had it buzzed off at 7:30 a.m. in the salon, before the days’ clients, the regulars, opened the salon door.  I was an irregular that morning.

This morning, I skipped the 3-product process to straighten, glossen, smoothen my bobbed, wavy hair.  It dried naturally.  Strings of velvet danced in the wind as I drove, windows down, that familiar route home from school drop-off.  My fingers felt it and remembered.  The short spikes of four years ago.  Soft chicken fuzz.  Tight, tight spiral curls.  Loose curls.  And now the luxury of these soft, wild, living waves.

So… we celebrate.  Me and my hair.  Loud music.  A steady, heavy drum beat.  We dance in the kitchen on Halloween morn.

September 11, 2013

The TV in the YMCA lobby was running the complete footage from September 11, 2001. The fifteen minutes I watched was the turning point: The first plane may have been an accident. Then the second plane hit. And somewhere in that city on business was Bill. And somewhere else was my girlfriend since kindergarten. And somewhere else were our fish friends, a couple we met diving. Long hours after the attack, Bill was finally able to call me. He was fine, but how should he get home? He said there was availability to fly – what did I think? We agreed. Never would there be a safer time to fly. I emailed our friends. They were all OK. Yesterday afternoon I met with my oncologist – my 48-month check-up. All was good! However, I was concerned about my blood pressure. My doctor chuckled and explained that they didn’t really look at that, after I was coming to see my oncologist! I signed my name on the dotted line for another breast cancer study. This one is looking for other possible genes that may contribute to the disease. Mine was not genetic, but since I had been tested, I qualified to be part of the study. This one was pretty easy: they just needed three tubes of blood and my signature giving them permission to rip cells apart, perhaps create a cell line if the researchers find anything interesting while looking at my cells.

From the oncologist’s office, I dropped down one floor to the Infusion Suite. Where I go every month for an injection as part of another study. One shot usually takes 2 – 4 hours. The test drug is expensive and cannot be ordered from the pharmacy until I’m present and accounted for. This gives me time to wait and people watch. And some days it’s an easy day. And some days I can feel my blood pressure rise as my body wants to flee. I see Infusion nurses and techs more consistently than I see many of my local friends. My regular nurse was out on her honeymoon, but my fill-in showed me a picture of my nurse in her wedding gown with her husband. She couldn’t have been a more beautiful bride. I should expect no less. She is a beautiful person who slugged through every round of chemo with me, and now apologizes for the poke of every monthly injection.

While I wait for the medicine, next to me is another patient waiting for his chemo. He’s probably in his 60’s, bald, and has a backwards-C scar on his head that’s a bigger C than what I can make with my fingers and thumb. His speech is slurred, but he’s still insistent on telling his nurse his identifiers without his wife’s help. It takes seconds for him to get his last name off his tongue, but his birth date flies out clearly. After my injection, I open the curtains and he is still waiting for his chemo to arrive from pharmacy. I smile at him. He gives me the thumbs-up, and I leave.

My 4-hour’s at MGH puts me in rush hour traffic out of Boston. Moving at a snail’s pace, I see several enormous half-mast flags. Stars and stripes at half-mast look like they are crying.

At 8 p.m., I have picked Liam up from our friends’ house and Bill has picked up Will from gymnastics. All Malcolms are safely tucked inside our house where Tuesday night’s dinner dishes are still on the counter. Bill and I make swoops through the kitchen before moving the boys toward the bedtime routine. Picking up the shambles of 24 hours seemed like a gift. And not as important as reading in bed with Liam and talking about the school day with Will.

Random Summer Thoughts

Hump Day isn’t always on Wednesday, particularly in the summertime. Headline: The picture of me on this website is outdated. (Click here for a look.) For the last six months, my hair has been straight. Only two obstinate curls remain on humid days. One in the middle of my forehead and one at my right temple. As long as I have these two curls, I’m keeping my website title “From cornfields to Korea through chemo to curls.”

Today I had a visit with my breast surgeon: I’m over 4 years out from diagnosis. That’s good. And my doctor is great. She’s a lovely person with skills far exceeding her surgical abilities. She too struggles with time limits on electronics in her house. She too gets exhausted from the negotiation. Today, I needed to hear that. Today, I would’ve paid a $100 co-pay to have someone be on my team with that one. I didn’t need her skills in the OR today. I needed another human to be on the same page with my crazy-ass summertime restrictions on electronics. Between my doctor and her nurse, today, my surgeon’s office was the place to be for hugs and thoughtful conversation.

My birthday was nearly three weeks ago, and my birthday cake woke up a sweet tooth. In turn, that brought this little motto about: “Life’s too short not to eat ice cream during New England summers.” I’m taste-testing every “birthday cake” flavored ice cream I come upon in little side-of-the-road ice cream stands.

I climbed up and down a local high school’s bleachers 26 times today. I want strong knees, flexible hips, and a healthy heart... and no birthday cake ice cream accumulation.

“Hey, Mom,” said Harrison apologetically at the beach during an unexpected evening stop for swimming in clothes and sand castle building. “I’m so sorry… I forgot to wear underwear today!!” And you are just noticing this at 9 p.m., dear child?

“Olivia, please change out of your pj’s so we can go out.” And with that, Olivia peeled off her pj’s revealing a full set of yesterday’s clothes underneath. A look, a shrug, and she was ready to go.

Happy Summer.

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.)

The Eye of the Storm

I am over three years out from breast cancer diagnosis, cancer-free, and well into the swing of alternating MRI's and mammograms every six months.  These don't seem to get any easier as time goes on. After my mammograms in July, all is good.  The Eye of the Storm reflects on that day.  Please forward this to a woman you know who is living with or beyond breast cancer.  And please, let her know she's not alone.

...

One of the loneliest places on earth is the mammogram room on a call-back “just to check some calcification that wasn’t on the last mammogram.  We’ll book time for an ultrasound, just in case.”

That’s where I stood July 19th, six days after my Friday the 13th birthday mammogram.

First trip into the chamber.  “If the calcification appears scattered then we check again in 6 months.  If it appears to be bunched together, then we would want to look at it more closely.”

After four initial compressions, the radiologist wanted to take a few more.

Second trip into the chamber.  “OK, hold your breath.”  I can’t hold any breath.  I can’t work out why.  Four or five more tight squeezes.

“Just have a seat and I’ll be back in a few minutes after the radiologist reads these.”

This is a new breast care center, so I get to wear a light salmon pink johnny.  The blue johnnies are still in the dressing rooms but under the salmon johnnies.  Should all of the salmon ones get worn, well, thank goodness for the blue ones.  Fucking things.  I must get a Hug Wrap for myself.  “Don’t forget!”  I scream to my subconscious.

“OK, Linda.  We need to take a couple more.”

Third trip into the chamber.  “This time we need to take the images while remaining compressed for 10 minutes.”  “Are you kidding me?” my cancerous snarkiness raises its protective head.  “More like five actually.  We need to work out where the calcification is.  This is the calcification.”

Bunched together... shit.  “The mammogram shows it but doesn’t clearly identify where it is within the breast.”

I realize why I can’t hold my breath.  I can’t breathe in to fill my lungs.  The compression keeps my breathing shallow.  I’m holding my breath on the exhale with no air in my lungs.  I pick a spot on the wall; hyperfocus on it; tell my brain more oxygen will come soon.  So that it doesn’t panic.

“Let me look at these before you go back to the waiting room.”

I stood in the middle of the quiet, dimly-lit room with the whole world spiraling around me.  Which path do I walk on out of here?  The room is calm.  Peaceful.  In the eye of the storm.  A storm of normal life and responsibilities is what I walked in with.  Will I walk out with the same or in the middle of another storm that makes the first one look like an April shower?

“Looks good.  You can wait outside.”  Minutes pass.  Have I done everything I should?  What are my priorities?  Do I need to focus more on family, less on volunteering?  Liam’s life book isn’t done.  Do I even pray any more?  Do I over react to things that I really shouldn’t?

“Sorry, Linda.  We need to take a few more.”

Fourth trip into the chamber.  “So the radiologist thinks the calcification may actually be on your skin.  In that case it is 110% NOT cancerous.”  Well, that’s good news.  Perhaps my blood pressure dips a few points.  More exhaled breath-holding.  More compressions.  “That should do it.  Go ahead and get dressed and just sit in the waiting area until he reads these.”  Ahh… the power returns as the salmon johnny is dispensed into the dirty laundry.

“Linda, come on back.” Oh, for fuck’s sake, I need a “Linda-go-home.”

Fifth trip into the chamber.  “Don’t worry about changing into a johnny again.  Let’s just take this.  He wants me to roll you so we get a horizontal shot proving the calcification is on your skin.  He just wants to be very careful given your history.”

Back to the waiting room.  Ten minutes later, I’m sweating.  I sent a message via a passing nurse saying, “I’ve got to go get my kids.  I can’t stay any longer.”  My kids are at a short play date that should have ended a half hour ago.

After checking in with the technician or radiologist, the nurse came back with a smiling reply, “We’ll see you in a year.”  I’m pretty sure the technician forgot about me as I sat wanting to crawl out of my skin in the waiting room.  After nearly two hours, five visits to the mammogram room, and 20 compressions, I flee to pick up my boys.

What doesn’t kill you makes you stronger.  And tired.  And teary.  Next time I’ll stand in the middle of that room with a Tuscan red and yellow Hugwrap about me.  I’ll arrange for a friend to meet me afterwards for a class of wine.  Then perhaps dinner with Bill.  Could I give myself the day rather than a tight two hours to sail through the next one?

That eerie calm standing in the eye of a storm.  Exhausting.

Liquid Farming

Six years ago when Will and I made the 16-hour drive from Chicago to Boston to join Bill, who had already started his new job, I wondered how or if people in Mass. made a living off the land. There were acres and acres of trees in western Mass. Forestry? As the trees dispersed, cities built up. Commerce on paper. After finding our house and trying to dig a new flower garden, I was soon convinced there was no money coming from the dirt. The land is full of ledge that I have so often bemoaned. Moving from the Midwest to Northeast, I fought hard trying to think what I glued to the map in 4th grade when we were studying states and main resources.  I’m sure I found corn for Iowa, and I remember using cotton for the South.  However, I have no recollection of the Northeast.

But now, I’m sitting on the north-eastern edge of the U.S. -- on a liquid farm called the Atlantic.

 

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.

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.