can you say "REMISSION"?!!
Two years ago, doubled over, searing, knife-life pain pierced my body’s mid-section. I could ignore it no longer. Bill knew ‘something’ was wrong as early as Spring 2009. I ‘felt’ (“literally” felt something wrong (aka: a lump) beginning in July. Going physician to physcian we tried to feter out the problem……sure I had been anemic since spring, but maybe it was just the schedule I was keeping. Maybe the iron I was on was making me sluggish. Maybe it was the hardware that was interferring with inner working of my body. “Could doctors not feel or see what I was feeling? Was I not making myself clear that SOMEthing was going terribly wrong?”
Deciding to make sure that my Bionic Woman’s titanium parts weren’t the problem I headed to Seattle. Of course, Care being Care, things weren’t simple; to make matters worse, I caught the H1N1 flu virus. Drs. wouldn’t allow me to fly home to Alaska until the respiratory virus was clear.
During the recouperating two weeks, I kept repeating: “Look for the sliver lining, Care. Look for the silver lining.” What was the silver lining? It was to humble myself, to learn to be vulnerable and learn to ask for help. It meant I had to ask good friends if they would be willing to expose themselves to the virus, and let me stay with them as I fought the virus.
While one of the families DID get the flu, the other two didn’t. Each family knew, that over the years, when times got tough for me, assaulting the very inner core of my being, that “going to the sea to breathe” helped me to put things in perspective. The
Gifts from the Sea (reference/read Anne Morrow Lindberg’s book!) whether it be the salt-laced wind blowing in my face filling my soul as I gulped the cool air in, or the tidewater waves wildly crashing in towards shore with rocks tumbling in with them, then as the water receeded, it left a clean slate and waiting for new impressions to be made; each would help me to find the silver lingings to the ominous, storm-filled clouds that were engulfing me. The sun would begin to warm the depths of my chilled soul.
Being at the ocean was a time I would allow myself to freely breathe in; To calmly listen; To be still; To let myself to dream of possibilities. My eyes could look outward while being inwardly inspired; I would and could let go and let the tidewaters wash the jumble of mixed rocks and tangled life seaweeds and dissary, and let them be left high and dry; I would let what was in the past to be washed away, and prepare for new impressions and memories yet unwritten, waiting to be made.
The Godcidences that September 2009 walk on the beach would reflect silver linings that would forever change my life. “Family” connections were rekindled, the next generation would be asked to accept the responsility to carry a newly rekindled torch. Loosescrews and Skinned Knees was ‘officially’ launched.
Then, upon my return to Alaska, an received an unexpected answer. I was given the diagnosis of stage 3c+ (treated as stage 4) colon cancer – it would be the same cancer that had taken my mother’s life 40 years earlier, when I was only sixteen.
My lungs took in a long deep breath of newly filled salt-filtered air. How would we do it, especially since I had just passed the torch that was burning bright and headed down paths I’d never dared go down before?
How? Just as we had the previous 35 years: head held high, strong, firm, one day at a time, with Sourdough Alaskan resolve. Faith, Family, Friends, Flexibility, Fortitude, Forgiveness, LOTS of Fun and of course, chocolate (I mean Fudge: aka Double Fudge Brownie Ice Cream everynight before bedtime!)
The book, the opportunity to add Kula to our family (see previous blog), suffering through the atrocities and debiliating aspects of cancer, brought people in my life and to places that I never imagined. Friends would step in and up, yet my compromised immune system would keep those same people and interactions at bay. Each day was a ‘new normal”; no two days were alike, most filled with unlrelenting pain, spawning the phrase: “the one thing you can count on with me is I can never fully be counted on!” As I said – I never knew what each day would bring and what body I would wake up to. I would often look in the mirrow and ask “Whose “normal” is THIS?!”
I was riding a roller coaster I didn’t want to be on. I was in the midst of a ‘sentence of silence’ that would stretch me tighter than ever thought possible. I winced with each setback and blow – the heat of the refiner’s fire was more than I thought I could endure. I wanted out. I wanted my family’s suffering to end as well. Life was not fair. (But then again, who said it would be?!)
I wanted to give up. I wanted to give in. The doctors and medical consulting team from around the country shrugged their shoulders and shook their heads. Chemo was literally killing me. I was only walf way through the planned chemo regime. I was not responding. I was baffling the medical team.
The ultimate question would once again become: “How do you want to handle this?” Our answer was the same as the first day they asked: “Head held high, one day at a a time.” Yet this time we added, “but with quality of days and NOT quantity.” No more chemo.
When would the physicians (and politicians) understand that for me, GOD holds the number of my days, NOT the medical field? Besides, it’s called a medical “PRACTICE” not medical “PERFECTION”. We would keep up the good fight, surround ourselves with our Heroes of Hope, we would keep looking ‘at the end of our hand” knowing our ‘call’ had not changed – just the place. We were still on the “medical mission field! We would keep Matthew 6-ing it. One day at a time. Sometimes one hour. Sometimes one minute. Sometimes……
So when ‘one day’ this week came, two years from the diagnosis of number 11 cancer, stage 3c+/4 colon cancer and surgery number 97 of the surgerieis, during a set of the the 3 month to 3 month/yearly scans, scopes of all manner, tumor markers, blood test and a bazillion appointements, I was expecting more of the same news….you know the: “You are still battling the cancer. You are not in remission ” answer.
Then today, I heard the unexpected words spille from the doctor’s mouth: “Against all odds, and against ANYthing the medical field can expalin, Care, YOU are in REMISSON.” I whispered a prayer of thanks for the thousands who have stood in the gap, who have held our very weary arms up, against ALL the odds.
I let a heavy sigh slip out of my pursed lips. I allowed the tears of gratitude that had begun to well up from deep within, slide down my cheek. Suddenly, I lay my head on the exam table and sobbed. Forty years ago, my diagnosis was a death sentence. Today, because of research, beacause of the vision of several people like Gordy Klatt and Pat Flynn, because of countless numbers of people around the world – people who don’t even know me, people who unselfishly VOLUNTEER hundreds of thousands of their hours to encourage and teach others about awareness and prevention against this ugly disase of cancer, I can be told I am in remission for now.
Because of volunteers, people who selflessly give of their hard earned finances, even in a waning economy, giving whatever they can – maybe only a little or maybe a bit more; day in and day out, in so many ways. Throughout the years, these are Americans who count the COST, who make a literal differece ‘at the end of their hands”; combined with others, they bring HOPE for LIFE.
They REMEMER those who have gone on before them, who have lost their fight with cancer. They CELEBRATE each person, who from day one of diagnosis are SURVIVIORS. And they don’t give up – THEY FIGHT BACK: FOR ME!! They bring a HOPE for a CURE. Because of them, I am alive. Forty years ago, I would have died. Today because of their effort, because of research, because they tout early detection awareness and prevention, even thought I live in a State (Alaska) with the fewest resources and funding, I can be one of less that 5% who survive stage 3+ 4 colon cancer.
Thousands upon thousands of people become a volunteer army who walk; they commit and take time to write or call their legislators, trying to keep them informed; they make meals, they pray, they give rides to those in need to get to/from chemo or octor appointments; these people take time out of their BUSY and demanding days to help others “Look Good and Feel Better”; they are volunteers who ‘reign supreme’ in my book.
Why is it that THEY (the volunteers, the constituents, “get” the message, when too often, too many politicians in DC or State capitols who allow themsevles to be too busy to literally pause and look ‘the end of their hand” where their REAL sphere of influence is for their constituents is? (or they don’t read the bill(s) for themselves, or they THINK they are invincible and the statistics don’t apply to them as they have good insurance coverage and are in places of power/prestige). When will THEY ‘get’ it like the people back home? When will THEY look and SEE that somone to their left or someone to their right will be affected by this ugly and costly disease, if it hasn’t already? These are the very people who hold the purse strings and in many ways, life/death decisions to help find and FUND the CURE for cancer. We are so very close……..yet so very, very far away.
Remission. No, not a cure (YET!!) – but yes, I AM IN REMISSION!! I will receive another PET Scan in January, with more tumor markers, and go through the scopes/scans yearly. But I AM in REMISSON for now!! (And!! The bone in my new plate/10 screw arm is healing!!)
Thank you seems so hollow, but means so much this night. I promise to keep taking it by Matthew-6ing in. Having cleaned the sludge out of the bottom of the well, I fully embrace the fresh well water, acknowledging that yes, I have significant limiations and ‘own’ living within those boundaries with those limitations. I know I am not out of the woods, and being “Complex Care” I’m sure the “Care Chain” may from time to time continue to be activated!!
But I had do ask: Can YOU say REMISSION?! (and get excited and celebrate like I am?!!)
Just thought I’d ask!!
walk with me-fall at care's corner
Fall doesn’t last for long up here in the ‘upper One’/Alaska, so we take each day we have as a treasure. So come along as we wander around Care’s Corner this Sunday, marvelling in the colors and sights! Enjoy!
hand to hand hero: rebekah
’d like to introduce my new “Hand-to-Hand” Hero featurethat I will share with you from time to time. It seemed fitting that Rebekah is the first Hand to Hand Hero. I met Rebekah at So. Oregon Joni and Friend’s Family Retreat – Twin Rocks, Rockaway Beach, OR. Her gentle giant ways, her contagious smile and the way she is able to share her giftedness of wisdom and encouragement, even in the midst of physical and medical challenges she encountered when at camp, extended far beyond her years. I know MY life will never be the same because of how she touched my life forever: “at the end of her hands”.
Well done, Rebekah!!
I’m not sure how summer could get any better than to give you an update on 4 of “My Guys”. You know them, too, as you have prayed long and hard for them as they have each dealt with health crisises.
Matt and Lance, my “blueberry buds” just a short year ago were fighting for their little lives with the often deadly e-coli bacterial infection running amuck through their systems What a joy it is to see them, picking black and blueberries and having their first sleeping-bag sleepover with me in their toy room a couple weeks ago! Their mom and dad are both teachers in the LaCenter School District – and what a district it is. I had the pleasure to be a guest speaker at the high school and a community event. In all of my 35 years in the schools have I have never had a more respectful and engaging student audience! I have much confidence in the future with mom/dads like Matt and Lynn, with sons who are as respectful and honoring for all of their 3 and 5 years of age! (Not to mention characters!)
My other guys I sadly had to say goodbye to as they moved to Mukilteo, WA so that Connor can be closer to Children’s Hospital and Medical Center in Seattle. Connor, 7, has been battling cancer since he was 2. He and his brother Carson, 5, have been my Relay For Life sidekicks, emcees and community speaking helpers the last couple years. Siblings are often forgotten when a brother or sister is sick, so we honored and included Carson every bit as Connor – because cancer doesn’t just hit the person, it hits the whole family and in Connor’s case, the whole community. Wasilla’s loss is King/Snohomish County’s gain. Mom Alicia and Dad, Steve (who will commute from the oil fields in Alaska every 3-4 weeks, which adds even more of a challenge) are rising to the adventure, even while on the roller coaster of treatment. Connor celebrated his 5th year transplant mark this summer and when in Seattle we celebrated by feeding the sea gulls at Ivar’s (in between them shuffling me to appointments!!)
Thanks for keeping “my guys” and their folks in your thoughts and prayers….they are our future, and I have every confidence that they will be doing GREAT things!! I’ll keep you posted!
how to fill a well: 101
As I mentioned in my last entry, I was headed off to ‘fill my well’. And that my friends, is exactly what happened. But I found that before you can fill a well that is empty (aka: a body that was a bit ragged, had given and over-driven, and run somewhat ‘dry’) that you have to get rid of the sludge at the bottom of the well before you can fill the well with fresh water.
For me, it was coming to the end of myself. On the trip to WA/OR/CA, I found myself surrounded in places and with people who were pouring into me – from the folks who have helped launch the book, to family friends, college buddies, church friends, new and old friends at Joni and Friends in Agoura, CA International Disabilty Center, and even former babysitters. I was flabbergasted at the Relay For Life in Battle Ground, WA when the Hero of Hope for Great Northwest Region 2009-10, Marilyn Hash, who is MY Hero of Hope and adopted ‘mom’ for over 36 years and her daughter Shelly (also a former babysitter for us!) had driven 4 hours in over 90 degree weather just to surprise me as I spoke at the Survivor’s Luncheon. Jenne Henderson, (you read about her and her family on pg 47 in my book!) spent an AWESOME (but HOT) day with me at Relay. We hadn’t seen each other in 30 years. I will NEVER complain about pitching a tent for Relay For Life in 20-30 degree weather again! Battle Ground: 97 degrees (110 on the track) is one HOT Relay For Life…guess I’m just a true Alaskan, eh?! Then there was the day Joni Eareckson Tada and I went to record a radio spot – the sound board blew for the first time in 15 years! Did someone say Care was in the house?! So we did it the ‘old-fashioned way – Joni’s wheelchair facing one way, my wheeling chair facing the other and a hand held recorder in between us!
Everywhere I went the sun followed, (Northwesterners thanking me for bringing it with me – it rained in Alaska every day I was gone!!) It was sunny and warm – even at Tillamook and Rockaway Beach Joni and Friends Twin Rock/So. Oregon Family Retreat. And THAT’s where the ‘sludge’ removal began. For the first 3 days I was ‘leadership’ – helping to train and be a support to the short term missionaries who would serve the families affected by disability coming to camp. These volunteers would literally be the hands and feet for families who needed respite, who needed a break, who needed to be loved. Hmmm….wonder why I got to teach the Intellectual/Developmentally Delayed Section? By the third group I WAS a total example of someone who was intellectually impaired as my neurological flavors kicked in and Yoda Speak took over with all the noise and overstimulation. Call it hands on training? After my last session of training, I OFFICIALLY became a camper. Me….who had been to the very first Family Retreat on the Oregon Coast in 1991. Me… who had ended my career at Joni and Friends staff as Asst. Director of Family Retreats. What a different perspective.
The transition from leadership to camper was harder than I thought. But there was no mistake that this life lesson was taking place right near where our family had vacationed when I was little….around the age my dad gave me my life verse of Matthew 6:33-34. (See pg 124 of the book!). Once more I could hear my dad’s voice as I sat alone on the warm sand looking out to Twin Rocks you see at the top of the page. “Care: Seek FIRST and FOREMOST, ALL that God has for you, and be OBEDIENT to do them..and things will always work out. Just take it one day at a time.”
My “one day’s at a time” have changed. My life has changed. It is time to truly ‘rest’ and relinquish, and get my grimey hands off the one thing I had been clinging on to: my overly independent spirit and my “I can do it MYSELF, thank you kindly!” As I humbly unclinched my fist, I accepted, truly, that I can’t and won’t be able to do many of the things I could before, and am willing to accept (and ask for!) a helping hand.
As I became a camper – someone who is affected by a disabilty, God paired me with a short term missionary, Vicky, who didn’t put on her application that she had worked as a teacher in the Bush in Alaska and her hubby was a commercial fisherman at one time out of Ketchican….(do I hear anyone say “Godcidence”?!)
Vicky was patient and let me ‘toxic dump’ as I transitioned from leadership of sorts, to lead differently – adaptively …one day at a time. No two days in my physical life are the same. I never know ‘who’ or ‘what’ I will wake up to. Sure, I may not “look” disabled – and I sure don’t ACT disabled, but I am neurologically, orthopedically and medically impaired and I’m finally ‘owning’ it. I know…don’t all faint at once!! SOME of us are slow learners (or hard headed!!)
So the sludge is removed, and it’s good to be home with my dear hubby. He surprised me with magnetic car signs of “Care’s Corner” and PAINTING (YES!! for the first time in 35 years I don’t have white walls!). It is called “Stolen Kiss” and adds just the right accent to the rest of the white walls. And he canned away – salsa, salmon, beets, corn, spinich, potoatos and more, getting us ready for winter. I’ve delighting in returning to photos of camp and Relay, amazing gardens at Beth/Mike’s and Francie’s (and floating in Francie’s pool in 100 degree sun for 2 1/2 hours (how do YOU spell “this side of Heaven!!) and a BBQ and s’moring (no…no ‘human s’mores!) with dear friends new and old from Joni and Friends.
Thanks for taking time to share this journey with me – you all mean more than you can possibly know. As I celebrate the joy of another birthday this week, I owe it to each and every one of you as you have loved me, helped me and most of all, put up with me…one day at a time.
Care Tuk is a nationally known speaker, educator, and retreat/workshop leader. She has been a school, hospital, and home health occupational therapist for more than 30 years. She has been named as a Top Business Woman in America and recognized for her work with youth, disability outreach and awareness, and the American Cancer Society.