Something Old, Something New, Something Borrowed…

Last night while on Facebook, I came across a post from Melanie and thought I would share it. It speaks directly to her particular kind of cancer and the toll it has taken over the years. While living hard and well with thyroid cancer, this is a reminder of a bit of what life is like for her and thousands of others living with thyroid cancer.

“Just came across this article from almost a year ago. I was 4 years younger than the writer when I was diagnosed, but her story is extremely similar to mine (down to the variant of the cancer I have- metastatic papillary thyroid carcinoma with a follicular variant) and everything she writes rings true for me. Coming up on 10 years living with cancer and it's still a constant influence in my life.”

Thyroid Cancer: Five Things You Really Need to Know

By Amy Greaber

Thyroid cancer is very much on the rise. But while it's one of the fastest growing cancers -- up 274 percent since 1997 -- it's still a rare disease. According to the American Cancer Society, 60,220 people in the U.S. will be diagnosed with thyroid cancer this year, and 1,850 won't survive. Young women in their childbearing years are most at risk, though it can affect men, women and children of all ages. However, because thyroid cancer is rare, it's not in the spotlight like other cancers. And the exposure it does get often overlooks some of the real issues that go along with this cancer.

I was diagnosed with metastatic papillary thyroid cancer with a follicular variant when I was 28 years old and it was quite a journey to that point (read my story here). Here are some things that I've learned, and what I feel patients and survivors need to hear:

1) It's not the 'good cancer' -- You've just been diagnosed with thyroid cancer. Your doctor tells you it's the 'good cancer.' That if you're going to get cancer, this is the one to get. This is what the majority of us hear, and it's one of the most derogatory and misleading statements that can be made to someone who has just received a life-changing diagnosis. The reason why we're often deemed 'lucky' to have thyroid cancer is because of the high survival rate. If caught early, the most common types have a five-year survival rate of nearly 100 percent. There are much rarer types and later stages that drop that survival rate down to as low as 7 percent. But no matter which type you have, or when it's caught, no one is lucky to have any kind of cancer. Check out this videoby 'Bite Me Cancer' to hear from other survivors about their challenges. We all need to stand up to this ignorance.

2) It's usually not as easy as 'just taking a pill every day' -- Another ignorant statement made by too many doctors. Patients hear about their 'good' cancer and how removing the thyroid is no big deal. You just take a pill and you'll be fine. But the majority of the time, that's not the case. The thyroid is a vital organ, and the body needs thyroid hormones to function properly (Clickhere to learn about the thyroid and what it does). It often takes a lot of tweaking to get those levels where they need to be, not only to function well but to help prevent recurrence. And sometimes where you need to be to prevent recurrence can bring unwanted symptoms. It can be very complex... for most there is nothing 'easy' about it. Which leads me to...

3) You will have a new normal -- More than likely, you will not go back to feeling exactly the same as you did before your thyroidectomy. It can often take up to a year after surgery and radiation before our bodies fully recover. This study concluded that patients had significantly decreased quality of life, with scores only improving 12-20 years after treatment. You will probably feel like you're all over the place as you get used to hormone replacement, and to the blood levels your doctor will keep you at. Furthermore, getting the necessary hormones through medicines is far different than your body producing them itself. With a thyroid your body can make adjustments when needed, on demand. We no longer have that luxury. Be patient. Don't expect that you'll be back on your feet and feeling good as new right away. Even if your cancer never comes back (which you'll probably worry about every day from now on), you've been left with permanent hypothyroidism from your treatment. Accepting that you now have a lifelong, chronic illness can oftentimes be the hardest part.

4) Embrace your scar -- Yes, I'm vain. When I found out I had cancer, my main worry was the big scar right on the front of my neck. All I could think about was how I'd cover it up after surgery. But then, once it was all over and the bandages came off, I realized that I didn't want to cover it up. People will stare. Even with it almost completely faded away, I still catch people looking at my scar instead of my face when I'm talking to them (Hey buddy! My eyes are up here!). In the beginning when it was more noticeable, I'd sometimes have fun when people stared, telling them I got into a knife fight (and they should see the other b*tch). But mostly when I see someone looking, I just point to my neck and say 'thyroid cancer.'

Your scar tells a story. It's proof of how strong you are. And it can be used as a tool for awareness. Embrace it. And spread the word.

5) You are not alone -- I'm the only person in my family with thyroid cancer. Before I was diagnosed, I never knew anyone who had it. And while my friends and family are an amazing support system for me, they don't understand completely. And I don't expect them to. Unless you've walked this path, there is no way you could possibly know what it's like. But there are other patients and survivors out there who have been down your path. Who understand, and can help you. Check out these amazing resources for more information and support:

ThyCa -- ThyCa has been created and is maintained by thyroid cancer survivors. Since October 1995, they have been developing a network of services that link thyroid cancer survivors and health care professionals around the world.

Light of Life Foundation -- The Light of Life Foundation was established in the spring of 1997 by Joan Shey, a patient herself. The mission of the foundation (a 501(c)(3) non-profit organization) is to improve the quality of life of thyroid cancer patients through continual education of the lay public and the medical community, and by promoting research and development to improve thyroid cancer care.

Being diagnosed with cancer is completely life-changing, and thyroid cancer is no exception. I've learned that it's key to educate yourself about your condition. Do your research, and don't be afraid to ask questions or to stand up for yourself. Ultimately, it's up to you to take charge of your own health and the care you receive.

I'd love to hear about your experience with thyroid cancer. Were you told it was the 'good cancer'? What else do you feel other patients and survivors need to know?

http://www.huffingtonpost.com/amy-graeber/thyroid-cancer-things-to-know_b_3319897.htm

Special Friends

During Melanie's 10 years as a cancer survivor, so many people have made gestures that I will long remember. But sometimes a friend just takes you by surprise and does something so wonderful it is hard to talk about. And when that friend does something for your child, well it brings tears to your eyes. Melanie has a friend from her college days at Colorado College named Kristin Bohl. Just as Kristin was bringing new life into the world in the form of baby, Ellwood, she was also trying to make the world a better place for cancer survivors.Check this out  and take a look at what Kristin is doing.

Join the Battle with Kristin Bohl. Beat Rare Cancers.

I am proud to say that 2014 will be my fifth year participating in Memorial Sloan-Kettering's Cycle for Survival. This year is extra special, because I am honored to dedicate my ride to my dear friend Melanie Richmond Hodgman - mountain climber, world trekker, woman extraordinaire, and cancer fighter/survivor.  Here's her story:

My name is Melanie Hodgman, and I'm honored that Kristin is dedicating her Cycle for Survival  ride in my name this year. Kristin and I met in the first week of our freshman year at Colorado College and became instant friends. Over the years at CC with Kristin, I ate my first bratwurst "up North" in Wisconsin with her family, sunbathed with Nana and Papa in Arizona during a college break, danced the night away before our graduation, and shared many adventures. While we've moved on from those days, Kristin's same level of dedication to helping others I saw 10 years ago continues through events like the Cycle for Survival.

The Cycle for Survival is a cause that directly impacts me and my life with cancer. Three days after my birthday in 2004, at the ripe old age of 24, I was diagnosed with metastatic Papillary Thyroid Carcinoma- thyroid cancer. I had no known exposure to radiation and no family history of the disease. Within 10 days of being diagnosed at a local hospital outside of Boston, I underwent a nine hour surgery to remove my entire thyroid and all the lymph nodes on the left side of my neck. Within eight weeks post-diagnosis, I had undergone another corrective surgery and received my first round of I-131 radiation to blast remaining cancer cells. A scan post-radiation showed that the cancer had possibly spread distally to my lungs. 

While thyroid cancer is a "good" cancer, as all the docs will tell you as a patient, cancer metastases away from the original site makes things a bit more complex. My amazing parents asked my local doc in Boston where the best thyroid cancer doctors and treatments were being done in the country and they were told Memorial Sloan Kettering in New York, and MD Anderson in Texas. Many phone calls later, my parents were able to get me in to seen at Sloan Kettering. 

The positive aspects of being a patient at Sloan (as we call it in my family) were apparent from the start. The doctors and nurses are friendly, professional, incredibly knowledgeable, and the thyroid cancer docs are engaged in cutting-edge clinical trials to improve not only survival outcomes, but also in treatment procedures that improve the quality of life for patients. Although it was not quite FDA approved at the time (but has been since), for my second round of radiation treatment in 2006 I was able to stay on my thyroid medication and get a shot for three days pre-treatment, instead of having to go off my meds for 4-6 weeks as was done in the past. The impacts of stopping thyroid medication include extreme fatigue, weight gain, fuzzy thinking, impaired reaction time, feeling cold all the time, depression, and more. Getting the shots meant I was able to keep up my normal work and daily life, enabling me to get back on my feet post-radiation much more quickly and easily. This was a big deal to me as a 26 year old starting a new job and hoping for the least amount of residual impacts of the cancer treatments as possible.

I've been living with thyroid cancer for 9 1/2 years and continue as a patient at Sloan Kettering even though I've been living with my husband in Seattle for the past four years. I still have active disease being monitored by my amazing doctor, Dr. Tuttle, who I continue flying back to see once a year because I trust him completely for my long-term treatment and I know I'll get the best care around. While the cancer I have remaining seems to be resistant to radiation and so will need to be dealt with surgically if/when the time comes, a drug in current clinical trials that Dr. Tuttle is working on may make my cancer cells once again receptive to radiation. This will be a game-changer for people who have tumors in places that are difficult to reach surgically, and could be used to treat my cancer as well. It is yet another example of the improvements in treatment that are made possible through research at MSK, and all that research costs money...lots of it.

Cancer is an ongoing part of my life and may be for a long time. Knowing that I will continue to receive the care I need at Sloan Kettering makes living with a chronic disease so much easier to deal with mentally and allows me to focus on living rather than living with cancer.

Thank you so much for your support of Kristin and Memorial Sloan Kettering. Your donation will add to research funds that are leading to major breakthroughs in rare cancer diagnosis, treatment, and survival rates. They may even fund research that impacts my treatment some day.

Amazing, right?  So I am riding for Melanie - to honor her courage, her passion, and her fight.  Please support my ride, and the amazing work done by MSK to beat rare cancers.

Much love,

Kristin

So this sends a big shootout to Kristin and all those supporting the cause.
If you want to read more you can check out her efforts at:

Join the Battle. Help us beat rare cancers by riding at a @Cycle4Survival event: 

http://mskcc.convio.net/site/TR?px=1536783&pg=personal&fr_id=2090

You go girlfriend, you go!

Writer's Remorse

         The moment I hit the “POST” button on my blog yesterday, I began to feel a deep sense of regret and guilt.  (And yes, I do know that I could have instantly taken it down, and I chose not to.) After working on the piece for a couple of days, satisfied enough—or at least as satisfied as I was going to be for a while-- I took that writer’s leap of faith and posted it. Instantly, that faith failed me replaced by the haunting feeling that my words were totally inadequate, self-centered and indulgent.  All I had told is my little story of some months with my mom when there are so very many others living with more dramatic, painful, loving stories. While theirs are reminiscent of being sucked up in a tornado and spinning for days, mine was like being caught in a thunderstorm on a steamy summer afternoon.

         After all, for years others have lived with situations far more heroically and harrowing than anything I have known. There is my friend Bonnie, and her husband, Dave year after year faithfully attending the needs of their respective parents who suffered with dementia. Merianne spending week after week away from home, finally moving her mother closer to attend to her more fully. Ruth Anne, flying monthly from Pittsburg to Muscle Shoals, Alabama, taking two flights and a long car ride to visit her mom. Marty’s parents dying only a few months apart. Sam, taking countless trips to Kentucky to be with her mom when things got tough. And the men, dad’s in their own right, like my husband, Chris, who for years flew to D.C., picked up his mom to fly her to Boston for visits, accompanied her back to D.C. before returning home. As the list grew, so did my discomfort.

         Feeling miserable and self-centered, faces rolled around in my head all day.  My only solace came in reminding myself that I cannot tell their stories, any more than they can tell mine. Yet I wish I had. I wish I had the talent and tenacity to do that. I have felt this before and ultimately my only consolation has been in discovering that by writing a bit of my life, I feel more connected. I see the world and those I encounter differently; maybe even once in a while have an inkling of what it is like to walk in someone else’s shoes. While helping me figure out my own life, writing also makes me more open and vulnerable and receptive to others .

         So today I did the only thing I could think to do. Letting go of remorse, I prayed.  Letting faces float around me, giving thanks that we are all joined in some strange illusive way that means connection—moms, dads, sisters, brothers, friends--I lingered with the little bit I know of the ache of our collective lives. And it helped. It helped me see how our stories are our own and yet, they blend, yours and mine, and somehow that helps. It just helps.

Always a Mom--Part 2

      For the last thirty-five years, being a mom has been just part of my identity.Unlike some, I did not feel that miraculously at the birth of my first child. Actually, it took some getting used to, but now motherhood is in my blood as surely as some bit of my DNA is in Justin and Melanie. The awareness of their happiness, or lack of it, is always there—as surely as the nagging feeling that somehow I am “responsible” for fixing things that have gone awry in their lives--things far beyond my control. (Hello cancer—why can I not wish, pray, or exorcise you from my daughter’s body?)

         Yet over the years, as they married making families of their own, it has gotten easier. Maybe it is their physical distance from me, or simply because I no longer know the details of their day in, day out lives. I have come to assume all is well unless told otherwise. While sometimes I miss the intimate involvement, even though my extremely grown-up evolved self (as opposed to my clingy immature mom self) realizes this is the way it is supposed to be and I am glad.

         Relaxing some of my mom vigilance that I probably held onto far longer than necessary, has become more my norm and probably one of the reasons I have written less on this blog recently. But suddenly this spring, all those old feelings came crashing back—a crisis that required protective thoughtful hands-on mom care. Only this time, I found myself needing to mom my own mom.

         I suppose I should not have been quite so shocked since over the past few years these parental emergencies have cropped up more and more frequently with so many of my friends. While checking in about the respective well being of each other’s children and grandchildren has been part of our conversations, now, my friends and I compare notes on aging parents as well. The news of falls, breaks, joint replacements, and the need for more help in their homes is a constant refrain. Will their money last or will we need to pitch in and help?  Several years ago, we went through it all with my mother-in-law, but then it was my husband who bore the brunt of the worry.  With my widowed mother living a fairly independent life in a retirement community surrounded by friends from childhood and a special gentleman friend downstairs, for the most part, I have sympathized from the sideline.  

         Last April though, the nightmares I had heard so much about became mine. My mom got sick and my life changed course--again.  She was wasn’t feeling well for a few weeks and seeing a new doctor (hers on vacation) who took her at her word that her congestion and cough were simply seasonal allergies.  With no change in her symptoms, a week later, he was still not concerned simply changing her over the counter antihistamine. It wasn’t until she said admitted that she was not “really” getting out of bed, that I packed my bags for a few day’s visit to N.C. to see for myself what was going. Before I got there, she was already hospitalized.

         Thus began a saga far too long, scary, and complicated to recount.  I will not bore you with details except to say that she ended up in 2 different hospitals, with 9 room changes, a week at a rehab hospital before being moved to nursing care in her own retirement community. Along with ever-changing diagnoses, and misdiagnoses and doctors unable to agree on the cause of her symptoms and best course of action, she was passed between specialists like a hot potato. As days blended into nights doctors came and went at erratic hours, and my brother flew in for four days to help make decisions. Finally a last ditch referral brought in Fabulous Surgeon who, while resisting surgery because of the many complications, took charge suggesting a less invasive procedure probably saving her life.

         Having packed for fours days, there I was stuck in hospital hell for three weeks, the sixty-four year old daughter (and health care proxy) forced to make decisions that parents usually make for their children.

While dealing with doctors proved exasperating, managing my mom became even more of a challenge to my frayed nerves. .” In her weakened, often frightened state, she became resistant to any suggestion from me.   “Mother, you MUST eat something or you will never get out of here.” Only to hear, “But nothing tastes good.” Just as when I had failed to provide good nutrition thirty years earlier when vegetables were an anathema around the dinner table, I resorted to cranky nag mom. (With basically the same non-results.) “The doctor says it is important for you to get up, let’s go down the hall.” “Justin, we are on a walk NOT a carry.”

         Fears and anxieties, echoing one particularly awful hospitalization for Melanie pulsed through my veins, “I am going to stand here right by this nurses station until someone gets my mom (my daughter) her meds.” There were days I thought I would crumble, but that was not an option any more than it was when both the kids and I had particularly awful stomach flu while Chris was out of town. Some days you just get through. Period.

         And if you are lucky, and I was, it gets better. Slowly my mom began to improve; after a month, I was able to come home. Today, she is back to her retirement community, only now in in assisted living. As an avid walker before all this happened, her physical health bounced back remarkably quickly, but the long hospitalization has left her mind less resilient. They call is diminished cognitive functioning. She is getting along fine, happy to be back with her friends, her sense of humor coming out, but has moments of confusion. Life feels more complicated to her. We talk every day and now my visits are more frequent. From a distance, I run interference with doctors, staff, and insurance companies, pay bills and fall at the knees of my cousin who picks up the loose ends regularly.

          Life seems to be reversing itself. Daily conversations revolve around gossip about the other ladies at her meal table, the latest musical offering down the hall, the failing health of her gentleman friend. Like my friends, I wake wondering if my mom is ok.  Is she is afraid in the night? Is life too hard?  It is care taking at a distance, not perfect but the best I can do.

         It all feels so familiar. I know how to do this and yet, part of me rebels, not wanting to go back in time. But, like so many others, back I go, because she is my mom. It is what we do. It is part of who I am--always will be. Always.

        

        

         

It Is All The Dogs' Fault

It has been weeks—no change that to months, since I have been able to settle down to write or do much of anything that requires quiet reflection. Keeping busy has been the order of most days. Since returning from two weeks in Israel on May 10th, we have done a kitchen renovation as well as painting the majority of the living area of our home. Then there was the ten day trip to CA—six of which Chris and I spent taking care of the four and 18 month old grandkids so Justin and Farr could celebrate their tenth anniversary—with Melanie and Ben joining us for the last three days of family time.

With the hot beautiful weather our boat has served as a virtual bed and breakfast -- friends and family aboard cruising to destinations far and near. It has been a full time and yet I have been unsettled, edgy and, I have to admit, not easy to live with. Pinpointing the source of my malaise is not a problem. All I can say is that it is all the dogs’ fault.

If you have known me in the last fourteen years, then you probably know that Chris and I have been dog owners for that time. In 1998 we adopted our first Black Lab, Farland, from Guiding Eyes for the Blind. We called him our “flunky” although the official status was  “released”.  An eighteen-month-old feisty guy, Farland was always his own person. An incredibly handsome strong-willed soul, he became our early boating companion, earning the title “best boat dog ever.” From the very beginning, he went to work with me every day, settling down under my desk, surprising parishioners as they came into my office. Gentle with children, he became the office mascot and always knew to remind me to take a break once in a while.

Then in 2003, Chris and I completely lost our minds as we adopted a second eighteen-month-old release dog named Opal. While also a Black Lab, in many ways she was the opposite of her brother.  More delicate in stature and constitution, she was a love bug wanting to cuddle and be close while her brother kept his own space. Right away, Opal joined forces at work and it was Opal who would cuddle with Melanie when she came home from her hospitalizations. While never comfortable on the boat the way Farland was, she loved to dive off swim platform—preferably on top of Chris when he surfaced. Underway, she was happiest shadowing me as I put our fenders and lines before settling down under my feet on her pillow.

Most weekends, summer and winter, Chris and I would walk with our two pups in tow. Covering miles no matter the season, we hiked through the woods and along the harbor, often riding home on the ferry.  They boated with us everywhere, and since we only travel by foot once we hit the shore, they tagged along, swimming out to retrieve a stick or sitting on a patio as we grabbed food. And everywhere we went they introduced us people.

Farland and Opal
Waiting for dinner on the boat

Last summer, at age fourteen, Farland began to slow down, neurological problems causing him to stumble. Gradually over the fall he declined and could no longer take our long walks. Watching Farland slowly failing, we were not surprised when he died late last November, just shy of his fifteenth birthday. He was an old guy and ready to go and while Chris and I prepared ourselves for months for the inevitable, for days afterwards we walked around wondering at the shocking realization that a life could be so very present one moment and gone the next.

After Farland died, everyone asked if Opal was sad; we could honestly say that she did not seem to be. While together all the time, the two pups had never cuddled with each other, choosing instead to bond with us. In fact, if anything, she seemed to perk up. After having to slow down with her brother for so long, at nine, she became positively puppyish, prancing around with her toys that that we normally kept put away since Farland had a tendency to just chew them up. Every morning all I had to say is, “Opie, where’s your toy?!” and off she would go to find one charging back, willing me to chase her. We walked, every morning for miles, and she became my shadow. If I went into my room to meditate, I knew that within moments, she would jump up on the bed settling in for a half hour nap. When I was sitting down, she was at my feet and when Chris and I went out, she slept on the carpet beside my computer chair.

I won’t go into the details of her demise except to say that while her vet was beginning to get worried about her kidney function, on the day we left for Israel, she and I walked three mile and she seemed energetic and happy.  But four days into our trip we began to receive worried messages from Heidi, who with her husband Mark and their two boys, watched over our dogs for years. Opal was refusing to eat; as the week progressed it was clear she was getting sicker. After ten days, many emails, and phone calls with her Heidi and her vets, she had to be admitted to the hospital; Opal was dying.

Chris and I made the decision to leave our trip three days early and return home. Heidi and Mark (saints throughout this whole ordeal) brought her to their house to give her more loving until we could get home. After almost twenty excruciating travel hours, we rushed from the airport to find her curled up on their couch. Barely lifting her head, Opal gave us only the smallest of tail-wags. Carrying her home we arranged her in her usual place in our bed right next to my head the three of us sleeping fitfully through the night.  With pain overtaking her, we took her back to the animal hospital that had treated her since she was a pup. We put out the word; staff members were welcome to stop by where she lay on the floor flanked by Chris and me. Lab techs, vets and even the front office ladies drifted in to give her hugs and say goodbye. Opal died on May 11 only five months after her brother.

Now for the first time in thirteen years, we no longer hear the jingle of collars and patter of feet when we open the door. Since Opal died, a part of myself has been shut off. For weeks in the middle of the night, I would put out a hand to pet her head waking only to feel emptiness. I filled my walks with phone calls so that I would not have to think about who is missing. When the two Black Dog flags on the front of our boat shredded on a recent trip, I could hardly breathe. Even with all the hubbub of the last two months, life feels dulled and sadder.

Of course there have been so many moments of grace as friends dropped notes or just listened to us talk. Our kids sent flowers as did our animal hospital. A friend slipped me a tiny metal token with a paw print on one side and the words, “Always With You” on the other. A wise vet offered words that helped explain the deep nature of the sadness I feel saying that the death of a pet is different from so many other deaths, because the nature of our relationship with our animals is one based on dependency. Unlike other human relationships, animals are never supposed to grow up and move away. The relationship is predicated on constancy and presence; separation is not really part of the equation. But of course, ultimately separation comes with the finality of death.

It is gradually getting a bit easier now, just please do not tell me to get another dog to make me feel better or get over it. We may, or we may not, eventually do that, but right now, I just need some more time to heal. Writing this is a step. Walking quietly is another. Maybe this week I will even be able to pray again.