Part 3 How NOT to tell your daughter she has cancer…

It was less than an hour after hearing that Melanie had cancer and there we were, trying to make our way back through the maze of hallways to find the recovery room. Forty-five minutes to not only absorbed the shock, but also figure out how to tell her the news.  Actually, the doctor had told us he would come in and tell her while we were with her. But he would leave and then what would we say?  

First though, maybe it would be good to hear Melanie’s version about how the next few minutes went. She recorded this a couple of years ago as Part of a 5 part series on “YouTube” called “Stories of Survivorship.”

 

Yep, that is the way it happened. Every time I watch that video clip, my heart breaks a little bit more. Coming into her curtained off cubbyhole in the recovery room, I was desperately trying to control my tears. As would be expected, Melanie looked dazed, exhausted, and a bit disoriented, but still greeted us with a smile. We chatted made small jokes, held her hand, found her glasses, and babbled some kind of nonsense. I can’t say that way of coping has changed much over the years. (Melanie has since told me that even in her groggy state she could tell by our faces that something was wrong.) It was not long before the doctor appeared and began to talk. As I watched, her face went from a smile to confusion until a spark comprehension dawned. The doctor was upbeat and direct, repeating the “good kind of cancer” comment; it could be treated easily with surgery. She could leave the hospital as soon as she felt like it. Then he was gone.

At that moment, my only desire was to take Melanie home. I’m not sure what I thought that would accomplish, but I wanted her in her own bed in our house. Unfortunately, nausea had set in so we had to wait for that to subside. It was in that first recovery room that she discovered an endless supply of graham crackers to curb her nausea. They would become a staple in our house for months.

After a couple of hours, we wheeled her out into fresh air and fading daylight gently transferring her into our car and heading home. Fortunately, the residual anesthesia in her system protected her from turns and bumps in the road and soon we settled her into her stripped down room. (Most her belongings still packed in the hallway.) Exhausted, she wanted sleep, but could not leave her side. I sat just watching her breathe. In a matter of hours she had become much younger in my eyes—the little girl I sat up with at night through asthma attacks and earaches. She woke was for pain medication, but I don’t I remember much conversation about her new diagnosis that night. (It amazes me how much I find myself writing those words—“I don’t remember.” How could I forget anything of those first hours?)

What I do remember is that in the living room Chris was beginning to make phone calls to our closest family and friends to tell them what was going on, and then the phone ringing. He talked, I simply couldn’t, an unusual state for me. I am a talker—it is the way I process the world and the way I make my living—but for days, the only people I could bear to talk to were Melanie, Chris and Justin. I hid and let Chris do all the talking for me.

So I said I would tell you the ways NOT to tell a child they have cancer. Looking back and talking to Melanie, there are things I wish we had done differently. The first was hitting Melanie with the news when she was in such a vulnerable state. She could barely comprehend being out of surgery much less having medical terminology thrown at her. What harm would it have done, to wait at least a few hours? While perhaps not practical, but it might have made it not so incomprehensible in the moment. The second was taking Melanie’s news spreading it so quickly. It was her news to tell and she has told us just how much she wishes she could have made the decision when that news got disseminated. While used to her being an adult in so many ways, when she got sick, we threw ourselves into being her parents. Perhaps this was the beginning of the dilemma of having an young adult child with cancer, because I also believe that as much as it was Melanie’s news, it was ours as well. As parents we were lost in new territory and needed support, too. It was perhaps first, but certainly not the last, of many balancing acts that we continue to learn to negotiate over the years.

Next…Where do we go from here?

Just a little biopsy...

It is funny how hazy my memory is around the ten days after Melanie was told she needed a lymph node biopsy. Of course, we all wanted it done quickly, Melanie most of all. After all, the back hall was jammed with her stuff, her job was expecting her in days, and she did not want to disappoint her new employers.  Her plan was to celebrate her twenty-fourth birthday on Saturday, April 24, and be on the road first thing Monday morning, but the doctor could not fit her in until Tuesday. Melanie cleared the delay with her new employers, confident that once this annoyance was out of the way, she would be on her way by the end of the week.

Even though I tried to hold a spark of hope that Melanie was right, the "node thing" would be managed easily, foreboding weighed me down. My imagination ran wild, mostly focusing the worst things I knew about lymph nodes-- lymphoma, Hodgkin’s, leukemia. After a few terrifying forays dipping into the maze of medical websites, I stopped. Her symptoms just didn’t quite fit, I was overwhelmed, and mostly I was afraid Melanie would catch me.

On the 24^th we celebrated Melanie’s birthday with her close friends, Sus and Doug. Melanie now tells me we went out to dinner, but the only thing I remember is Doug presenting Melanie with a dense, rich chocolate cake using no cream since she has milk allergies. It was a labor of love and friendship—a friendship that never wavered over the coming months and years. (In fact, Sus will be standing by Melanie when she gets married this spring.)

Chris and I told only a few friends and family what was going on—there would be a biopsy requiring general anesthesia; we would let them know the results. At night, in our room in the dark, Chris and I slept fitfully, and surprisingly for us, we talked little, keeping a quiet vigil—touching each other for comfort but silent.

On Tuesday, April 27 the three of us arrived at the hospital whose surgical floors are underground. Navigating the windowless florescent basement of endless twists and turns creeping deeper into an endless tunnel we might never find our way out of.  Directed from waiting rooms to progressively smaller waiting areas, Melanie moved--parents in tow.  Steered into a changing room, she and I giggled about the attractive gowns and socks as Chris waited outside.

An hour or so after arriving, she was taken to the pre-op area and met by surgical nurses, an anesthesiologist, and eventually, her doctor.  Over and over she answered the same questions, “Name?” “Date of Birth?” “Doctor?” Each time smiling her Melanie smile. It was not an act, that is just who she is. It was the same smile she had when undergoing hernia surgery at age three. And like then, I managed my “this is all so normal” face--until she was wheeled away when I could no longer hold back the tears”.

Told to go to the surgery waiting room, Chris and I navigated our way down hallways only to be met with another dim, windowless, crowded room. My heart sank at the thought of spending time there. Most people read or slept. Virtually no one talked. Tattered “National Geographic’s”, “Car and Driver” magazines, and old newspapers littered tabletops. Chris read his book as I paged unseeing through magazines. Sporadically, a doctor would appear to give a family encouraging news. “Everything went fine, you can see him in bit” or else take them into a side room for further conversation. As one hour dragged into the next, I realized I wanted to be the one they walked talked to without entering that room. That was not to be.

When Melanie’s doctor walked in after a longer than expected time, he immediately directed us to the side room—another windowless cell. He told us surgery went fine but he had bad news. Melanie had papillary thyroid carcinoma, admitting even he was shocked by the findings since there was no visible tumor on her thyroid. Although the doctor acknowledged that no cancer diagnosis was “good” he did say that if you had to have cancer this one had an excellent prognosis. When the thyroid and all the effected lymph nodes, are removed the cancer does not return.

In tears, with hands shaking I was glad that Chris could ask questions. Melanie had cancer; that was all I could take in. Saying we could see her in a bit, the doctor left us to absorb the news, but I needed to get outside.  I wanted to call Justin in CA. It would not be an easy conversation to have with a big brother who under normal circumstances worried enough for the whole family put together. In typical Justin fashion, by the time I talked to him again an hour later he had researched papillary thyroid cancer and had decided that the odds were all in her favor. A ninety five percent cure rate sounded good to him. His emphatic words were that his sister was going to be fine. (Little did I know that his wife was picking up pieces in California.)? 

With little time to think or process the news, Chris and I deferred to the doctor's expertise in telling Melanie. We had always tried so hard to protect our kids from hurt or pain, but now what? We had to tell our daughter she had cancer. There was no way to protect her from that. 

P.S.Melanie said...

Mom, thanks for writing this. One clarification:

I was smiling in the pre-op room because the anesthesiologist had an incredibly thick Eastern European accent, and I had NO idea what he was saying :)

love you

Mels

(Next --How not to tell your daughter she has cancer. Written by a pro.)

Sending Hugs

While Valentine’s is a day for lovers, I think it is also a day to celebrate love wherever it strikes.  Certainly, when the health of the child we love is threatened, no matter what their age, love kicks into high gear. But sometimes there is a ferocity to that love that can be intimidating to others—even to the one we are trying to help. Especially in the early days of Melanie’s diagnosis, I often wondered whether my actions were going to be considered too intrusive or too passive. I remember wanting to push for a second opinion when she wasn’t sure it was necessary. Or the time Chris and I were ready to sit on top of the desk at the hospital nurse's station to get Melanie her long over due meds.  At times raging inside, I was not sure whether I was helpful or downright embarrassing to her. (Probably some of both.)

It is kind of staggering to know that love can be the source of such anger.  A well-meaning person tells me that at least my daughter had the “good” kind of cancer. (REALLY?!? I don't seeing much good in this situation at all, thank you very much.) Do not even get me started on some of the God talk--"God must have wanted you out of work now so that you could take care of Melanie." Seemed to me that God would be with me (and with Melanie) whether I was working or not. Now Melanie and I can laugh about some of the but well intentioned but careless things people said and did, but then it felt surreal and out of control.

Mom (and Dad) love can be fierce and angry, but it is that same intensity that lets us vividly recall those people who held our hands and supported us with prayers and cards and hugs. It helps us celebrate another year together and reminds us that every day holds meaning. To moms, dad, lovers, partners, friends, to those who are tired, and angry, loving fiercely as you negotiate the cancer cycle with a young adult cancer survivor, I send you hugs.

What ever happened to normal?

Have you ever had one of those times when your life has been disrupted for a while? Then a shift happens and you realize you’re over the hump; life will settle down. I had just begun feeling that way in the spring of 2004 after a topsy-turvy fall and winter.  After years of an empty nest (a transition I found challenging –to put it mildly) ”normal” was Chris and I and our 4 year old black lab, living in a condo overlooking Boston Harbor. We had been pretty much on our own for five years since our youngest went to college. But in the fall of 2003 that changed. The first to return to the nest was Melanie. After four years at Colorado College, a semester circumnavigating the world with Semester at Sea, summers hiking and backpacking, and a year in California teaching Orange County kids science in the Southern California mountains, she came home to re-group and figure out what she might want to do next in her life.  A few months later came our son and daughter-in-law. A recent graduate of Vancouver Film School, Justin and Farracy needed a place to live while job hunting.  In October, I had finished working as an interim priest in a church and was waiting for an assignment to a new church; Chris was beginning consulting work from home.

Our spacious for-two condo became a sea of shoes, jackets, soda cans, suitcases, books, and computers, strewn about.  Not knowing we were going to have quite such a full house, Chris and I had recently adopted a second black lab puppy. “Normal” became hectic, crowded, full of laughter, and sprinkled with anxiety as we each dealt with the question, What’s next in my life? 

Mid-January, Justin was the first to land a job in San Francisco, working as an animator in a video game studio.  (Too far away for my way of thinking, but it was a great job).  February 1, they were off driving across the country. By spring, Melanie had decided to blend her passions for the mountains and the environment by working on an organic farm in Burlington, VT.  

The six months had been full and rich, if a little exhausting, but honestly, Chris and I were ready to go back to our old normal. By early April, energized, excited, packed and ready go, Melanie had only one more item to check off her “to do” list before leaving.  She had a large swollen lymph node in her neck. (In typical Melanie fashion she had named it Poncho.)  Melanie assumed, and we agreed, that the node was a residual effect of what had been a long bout with an unnamed illness that had her lying on the couch for weeks, returning again and again to the doctor.  She was tested for mono, pneumonia, sinus infections as well as STD’s AIDS and a host of other diseases including a thyroid function test. Nothing came back positive and gradually she got better. We chalked up to some strange virus.  By April, I was not worried, simply relieved that she felt so much better and was ready to get on with her new venture.

Yep, it seemed that life was returning to normal until the call from the parking lot of the doctor’s office.  Melanie’s primary care doctor wanted her to meet with a “head and neck” doctor to have an ultrasound the next day. Concerned and a bit worried but certainly not panicked, (I did not know enough to be) I went with her to meet with an Otolaryngologist (who even knew there was such a specialty?)

The next morning, Melanie had an ultrasound and we waited—a harbinger of waits to come-- until called back in to view the results with the doctor. It did not take an expert eye to see that her neck was riddled with outsized lymph nodes. The doctor was upbeat but vague—even cryptic—as he talked us through the results pointing out one node after another. When Melanie asked it this could be the result of whatever she had in the winter, the doctor replied, “Well, that’s possible, but let’s do a biopsy to check it out.”

As we left, Melanie was most intent on getting the biopsy done so she could get on the road to VT. She was sure it was nothing; I was sure it was cancer.  But I did everything not to act like it. It was an acting job I would try to perfect for months to come, often with little success.  For the next few days, I tried worrying out of sight from Melanie.  Chris and I whispered in the night and laughed during the days with Melanie even as I felt “normal” slipping away.  (To be continued)

Life is Good

I love that expression—even if it is now plastered on tee shirts, dog collars, soccer balls and some of the cutest socks you’ve ever seen. Perhaps I love it so much because it so describes the way I want to view life. Every day it feels a bit like being bombarded with all that is happening in the world—Egypt, Afghanistan, the homeless folks living under the Zakim Bridge in one of our worst winters on record. And there are friends dealing with illness—their own or loved ones.

Still, I do believe that life is good.  Maybe that phrase so resonates in my heart right now because of having faced into some dark times of my own in the past few years and now I look around and see how the landscape has changed. There is a breath of newness in the air.  Strange that in retirement—a word I am only beginning to utter—there could seem to be so much to feed my soul.

As a priest in the Episcopal Church who focused on interim ministry in the Northeast I moved from church to church usually staying for eighteen months to two years while the congregation took on the challenges of reconsidering their life together in a time of transition. It was work I loved. Used to changing communities of faith frequently, I was not sure that I would find a place to hang my hat in retirement, until I stumbled on a retreat center and convent not to far from my home. It is a place of laughter and poetry and deep silences—a place to pay attention and to listen for God. And then there is a recently discovered passion for  the rhythms of African drums. Weekly ten, or twelve, or twenty of us gather to learn to make joyous sounds in community.  Becoming a grandmother, brought out a desire to make something by hand to pass on, which lead to another group that meets together to take needlework classes with a gifted teacher and artist.  And in the spring, summer, and fall there are our boating friends to laugh and share adventures with.  Gradually over the past few years, the mosaic of my daily life seems to have taken shape.

Of course, at the heart of it all, there is my family. Married thirty-eight years to a man who still makes me laugh and shares a love of exploring the world. We are blessed with two children. Our firstborn, Justin, the creative and incredibly intuitive soul who is a video game designer living in southern California with his fabulous wife, Farracy and their two children, Jackson and Cooper, reminding me daily of the goodness of new life. Our second born, Melanie-- the adventurer with a huge heart and who’s smile lights up the world, lives with her fiancé, Ben in the Pacific Northwest where they share a life filled with the wilderness, deep friendships, and backpacks ready to go at any time. They met as Outward Bound Instructors two years ago will be married this spring. You’ll see our family in this picture Dec. 26 in California where we spent Christmas together.

All said, my life is good—very good---and rich with blessings, and on most days, I remember to be filled with gratitude for the life we have been given as a family even as I wish my kids were a bit closer.   But, as idyllic as this all may sound, we too have faced challenges as a family and that is where this blog comes in.

In 2004, Melanie was diagnosed with metastatic thyroid cancer.  One minute she was packing up to work on an organic farm, and the next she was moving back into her old bedroom where she would live for eighteen months. Hearing the words, “Your daughter has cancer, ” life changed—hers and mine.  Instantly, I was thrown into a chaotic state-- stunned, shocked, afraid, deeply sad, confused, lost, vulnerable---with no clue where to turn. Together, as a family, we began a journey of faith, hope and cancer. This blog will be my story, but of course, it is not mine alone. More than anything Melanie’s owns her story, because no matter how I might have wished it, and prayed for it, cancer was not something I could protect her from. And because she is my daughter, our daughter, I have a story too. Always a parent—always a mom. This blog will tell a bit of our journey and how we navigated.