Happy Cancerversary

It would be one year since her diagnosis of cancer and frankly, it had been a pretty rotten year. After the first two months of diagnosis, an eight-hour surgery, complications resulting in a horrendous week, another “repair the complication” surgery, and a radioactive iodine treatment, the year continued with more heartache. On July 3 while home alone in our apartment, she was told that her cancer was metastatic—there were spots in her lungs—and she was referred to Memorial Sloan Kettering Hospital where some of the best thyroid cancer specialists do research and treatment. The monthly blood work (which, of course, could only be done during her work hours) still could not regulate her medication well. Even living at home where her meals were taken care of, she was exhausted all the time, and the lack of a thyroid played havoc with her emotions. On top of it all, the long scar from the middle of her throat across her neck and up towards her ear developed keloids. What began as a fine line turned into a nasty scar requiring regular steroid injections and laser treatments.

Of course, the year brought positives as well. Two days after finding her cancer had metastasized; Melanie began training to become a Montessori teacher. Studying all summer while getting CAT scans, blood work, and a trip to Sloan Kettering, she managed to land a job as a teaching assistant in a Duxbury, Ma. school. The only down side was that Duxbury is a forty-five minute commute on a good day. (If you drive the Southeast Expressway in Boston, you know there are not many good days.) She had to leave at 6:30 a.m. and often was not home before 5:30—a long day even if you have a great metabolism. Melanie did not.

As the year wore on she was increasingly exhausted, discouraged with being isolation from peers, and trying to hard not to see her life shrinking.  It was so hard to watch her struggle with things that in the past had been routine. In August, I became the interim priest at a church in Framingham with a clergy assistant. But after only a few months it became clear that the finances of the church could not continue to support two priests; the congregation moved to a single clergy person—me.  Since they had come to expect heavy clergy involvement in all aspects of their life, it was a difficult adjustment for all concerned. Dealing with disillusionment at home and work took its toll on me. Worried about Melanie and the congregation, it became increasingly hard to keep my equilibrium—i.e., not show anyone what I was a feeling. Melanie and the congregation needed me strong—the last thing I was feeling.

There were many Sunday nights after a workday for me when Melanie was in tears, not sure she could make it through another week. Chris and I both tried to assure Melanie that if it was too much, she could quit her job. Hmmm...Did I just use the words “quit” and “Melanie” in the same sentence? Foolish me! Melanie does not quit. Never has. As a five year old she would keep up with the adults for full day of skiing; would get back up on a balance beam countless times until she could do a back walkover, and run her heart out on a soccer field. “Quit” was not part of her vocabulary.

So when that first April 27 came around, her cancer diagnosis was simply not something I felt was warranted a celebration. It was not until June that her medications were adjusted (again) and she was able to lead twelve kids backpacking on the Olympic Peninsula and in the Cascades in Washington State--a huge step in making her feel normal again.

It took some years, but gradually I have come to celebrate Melanie’s Cancerversary. Her A.C. (after cancer) life has been full and rich. (Even as I know that is not so for many who live with cancer) Here is a little of what A.C. can look like.  Two years teaching; one year as AmeriCorps volunteer, doing environmental work; becoming certified as a Wilderness First Responder; leading countless Outward Bound trips and pilgrimages in Maine and WA; sailing with a crew of eight on 32 foot open scow boats from the Florida Keys to Rhode Island; becoming an aunt—twice; falling in love; earning a Masters degree in Education; helping get a non-profit, True North Treks, up and running; leading other young adult cancer survivors into the wilderness; having two more tumors removed; hiking; camping; climbing; snowboarding, writing letters that make her parents cry; starting a new life in Seattle; soon getting married.

While Melanie's doctor at Sloan Kettering has told her that it is her job is to live her life, it is his job is to tell her when she needs to take a break. Both do their jobs well. So Melanie, here’s to you!! This mother could never be more proud!! Melanie, happy seventh Cancerversary to You!! 

Always, 

Mom 

Just a year ago…

I seem to want to write this blog as a chronology, but sometimes thoughts or people or the weather nags an entry into being. In this case, the trigger came with Holy Week.  It was last year during Holy Week (2010) that Melanie was scheduled for surgery to take out two tumors on the right side of her neck. It had been six years since her last surgery and this time it took place in New York City at Sloan Kettering Hospital. Living in Seattle, Melanie would fly back Wed. before surgery for pre-op work; it would be a ten-day trip. Fabulous boyfriend, Ben, would come for the surgery staying four days before returning to work. 

Chris and I would go for the whole time, meaning we would be away from the support of friends and the familiarity of home and church in a city that I find intimidating under ideal conditions. (Surgery for my twenty-nine year old daughter constituted less than ideal.) I was convinced it would be a lonely and difficult time—as lonely as the surgeries years before. That was not to be.

First off, it turned out that the daughter of some of our oldest friends was living only a couple of blocks from where we would be staying in NY.  She and her brother had grown up with Justin and Melanie—four tow heads playing together in a sandbox. Now she was an accomplished adult who had made NYC home for years. For two days of the pre-surgery week, Alicia, along with her boyfriend, Jeff, introduced us to all the neighborhood restaurants and breakfast places for the week ahead. Agreeing to serve as a general post office box for friends wanting to send cards or presents, they even recruited their doorman who turned out to serve as go-between while they were at work. We were not alone.

While the surgery would be early Saturday morning, my birthday was two days later. Since she would be recovering in the hospital that day, Melanie insisted that I have a birthday party on Friday evening, the night before her surgery. (While I LOVE my birthday, this was one year I would have skipped it entirely, but my daughter can be very persuasive—especially when she is facing surgery. I will agree to almost anything if it makes her happy.)  Given the task of pulling a small dinner together, Chris found a perfect small Italian restaurant for dinner;  soon what began as a small dinner with Alicia, Jeff and the four of us (Ben arrived Friday) gradually began to grow; dinner for six--perfect.

In the previous week, we learned that Ben’s parents wanted to come for Melanie’s surgery-- a lovely and generous gesture on their part. Don and Marfy were added to the list and we were thrilled. They would stay for three days, waiting with us during surgery. Don helped Chris move to a hotel when a water pipe broke into the rental apartment (don’t even ask about that escapade). Marfy kept me company while waiting for Melanie to get assigned a room after surgery. They added so many blessings they can never know.

(Eight for dinner)

Then it turned out that Justin had to be in Boston for a conference on Saturday, but wanting see her before surgery, he decided to surprise Melanie. He would fly from LA to NY, spend the day with her, have dinner, and then take a bus to Boston. We set ourselves to keeping the secret from Melanie until Friday morning. (Dinner now at nine.)

When close friends from Boston heard about the party, they decided to join in, celebrate with us, and support Melanie. Mark, Ellen and Jacki. (Uhh… let’s see that would be 12 for dinner.)

As Friday morning dawned, Justin crept into the apartment, waiting until seven o’clock before tumbling into Melanie and Ben’s room, jumping in their bed as he might have done when they were little.  On seeing him, Melanie’s first words giggle out, “Justin, I love you so much!” They were laughing too hard to notice my tears.

Friday night, as we assembled for dinner, we discovered that Ben’s brother, Roy, happened to be in NY.  A place setting was hastily and joyfully added to the table. (13)

It was the night before a five a.m. wake-up call for surgery for Melanie, and yet the evening was filled with laughter and tears as Ben presented Melanie and each one of us with Tee shirts that read, “I climbed the Tetons, the Whites, the Olympics, Cancer, and the Sawtooths and all I got was this lousy t-shirt.” On the back the vivid blue mountain range was topped by the words, We Love You Mel!!

As Justin was leaving to catch a bus to Boston, Alicia’s dad, Dave crashed the party—right in time for cake and coffee. Joy, surprise, laughter, love filled the room. As the party broke up, there was the creeping foreboding of the day to come, but this time would be different. As the sun rose we walked the eight blocks to the hospital—an army of brown and blue shirts. This time there would be no complications, Melanie would come through with flying colors and smiling face. Ben would be there to crawl in bed and love her into recovery. This time, more than anything, we knew we were not alone. Holy week, indeed.

Part 6 Surgery Number 2 and the Long Wait

By 9:30 a.m. May 4, 2004, Melanie was swept away from Chris and me to face the scalpel and so much more that, thankfully, I simply could not imagine. Pulling ourselves together we dutifully reported to the cave waiting room to leave our cell numbers. While Doctor A told us the surgery would likely last six hours, his fabulous nurse/assistant, Rose (more about her later) warned that it would likely take longer stressing his meticulous work. Apparently, he was often slower than he told patient families.

Unlike the last surgery, this time we had a plan of sorts.  In one of our meetings, Dr. A told Melanie that she would have a scar from the middle of her throat and going across the left side of her neck, AND said that if Melanie had to go through such nasty surgery, the least her parents could do was supply some bling to decorate her scar! So by 9:30 we were on our way to find bling and kill has much time as we could manage. The sprawling suburban shopping mall about half mile down the road seemed the ideal place for bling hunting. Debating whether to take the car “just in case”, we decided instead to walk—anything to kill a few extra minutes.

It was blue sky spring day as we made our way to the mammoth mall. To any driver passing by we were just a middle-aged couple holding hands enjoying a morning stroll on a beautiful day. While we had a plan, I was the only flaw in it; I hate to shop. Hate it.  In the very best of circumstances, even when I know exactly what I am looking for, malls overwhelm and over-stimulate me; this was so not the best of circumstances. Looking for bling seemed like such a good idea until we set foot through the revolving doors, and were instantly enveloped by the endless line of stores and people. If it were not for our promise to Melanie of bling and my husband, the inveterate shopper, I would have fled right back to the misery of the cave.

The first store we passed was Crate and Barrel—not a bling shop, for sure, but in the window was draped a golden colored throw; I had to buy it. I could picture Melanie home on the couch wrapped in softness as she healed. Feeling emboldened, we browsed through several jewelry stores until we found one displaying a pendant we thought she would like-- adding matching earrings just because. Mission accomplished. It was 10:45. Five and a half hours until we could even hope to hear anything. Remembering that we needed a part to the vacuum cleaner (ahh… a woman’s mind) we headed to Sears; purchased the part—11:00. Now what? My cell phone rang and our collective hearts skipped a beat until we saw that it was Number One Son checking in from California-it is hard to be the big brother far away.

11:15 wandering aimlessly, saying little, we were nomads looking for a place to rest.  Mall benches held no appeal. In solidarity with Melanie, we had not eaten anything that morning and even with no appetite, food seemed in order for the long afternoon ahead. A sign pointed to the Jungle Café.  We had never been there but it had just opened for the day and looked peaceful enough. (I can hear the chuckles now from those readers familiar with the place.)

Oblivious to our surroundings, we barely noticed navigating the gift shop packed with stuffed monkeys and rubber snakes or dodging lush fake vegetation to reach our table towards the back of the restaurant. Sitting down I took a deep breath trying to let out tension when the giant stuffed elephant behind our table raised his trunk and began to trumpet.  Mist rose around us. Within minutes, seemingly out of nowhere, we were surrounded with screaming monkeys, chirping birds, and pre-school children shrieking in delight as they blew off post nursery school energy.  As our food was brought out, the elephant trumpeted again. For the first time in weeks, Chris and I began a chuckle, which turned into fits of laughter. We both knew Melanie would love the absurdity of the story. Still, we could not get out of there fast enough.

Weighted down with packages, we walked to the hospital making a Starbucks stop on the way. A little caffeine was called for to get Chris through the afternoon.  1:00, back to the dimly lit room with the clock that never seemed to move. Two and a half hours to go. It would be another hour and a half before a resident would call from the operating room. All was going well; still, it would be a while. By hour six, I was on pins and needles—truly understanding the origin of the term. 3:30 came and went. 4:30. The waiting room gradually emptied as doctors came in to meet friends and families and then allowed to see loved ones. By 5:00, we were the only family in the room. As the attendant left for the day, she said that the doctor would find us when he was through. Past conjecture, we sat silently.

Around 5:15 Dr. A appeared; the surgery was almost over. Wanting to give us an update personally, he had left his residents for a few moments to begin closing Melanie up. (A decision he later came to regret.) All had gone well, the thyroid and numerous lymph nodes from the left side of her neck going deeply around the back of her neck were gone. We could see her soon in recovery when she woke. Just sit tight. We sat some more. Waiting…

Next Part 7 Recovery room reunion

Midnight Musings

Last night, I could not sleep. I guess everyone has those nights when spinning thoughts squeeze into what should be peaceful slumber; I am no exception.  But what bothers me now is that I am noticing a pattern to my nocturnal musings. It seems that every time I post a blog about Melanie’s cancer, I find the next night to be a restless one. “I could have said that differently” or  “How could I have forgotten…” seem to be the recurring theme.

Take last night. After posting Tuesday’s entry about preparing for her big surgery, I startled awake in the wee hours with an image-- Melanie’s world possessions piled in the back hall waiting to be packed into her car. The week before the surgery was to take place, she was to have been on her way to work on an organic farm in Burlington, Vermont. It had taken months for her to find this direction in life—attending conferences and interviewing farmers all around MA.  Exuberant in her enthusiasm, her duffle was jammed with the tools of her new trade—hats, bug spray, sunscreen, and brand new heavy- duty pants and gloves. Wall hangings and a comforter were crammed beside the sleeping bag, all cushioning the dishes and utensils.  Sitting on top was a CD player. For weeks, the pile had grown in anticipation of the new life ahead.

During the days leading up to her biopsy, Melanie had been in touch regularly with the young couple that had hired her; they were willing to wait—at least for a while. But after the cancer diagnosis, it was clear that even if everything went smoothly, Melanie was not going to be up for the heavy lifting and long hours that farming required, and they had a crop to plant. So with heartfelt best wishes, they said goodbye.  The duffle was relegated to the closet; none of it would be needed anytime soon. The CD player returned to the bedside table and gradually drawers were filled again—pictures returned to the walls. Returning to her room in the farthest reaches of our apartment, her new task, only to prepare for surgery.

In a few short days, her world had turned upside down and backwards.  Thoughts of cancer had replaced dreams of fresh air and abundant fertile growing life, but shattered dreams had no time to be mourned. That would have to wait. It was on to the pressing matter at hand, getting rid of the cancer before it could spread.

As Melanie let go of her dreams, Chris and I shifted our vision to accommodate what was to come. There was no discussion about whether she would stay with us; it was a necessity of the heart. I don’t think any of us could imagine any other scenario. We wanted her near so that we could take care of her as she healed. And in that moment, she needed home. While Boston had never really been her home base, it would have to do for the time being; we were her home and were glad of it.

But it was not just Melanie’s dream that kept me awake last night, it was mine, too.  Perhaps more than anything, I dreamed of joy and happiness, wonder and love, and a sense of purpose for my children. I certainly would have added health to the list, but until confronted with the enormity of the way sickness compromises all of the above, I never appreciated just how much health influences everything else. While Melanie had had more than her share of illness, it was never the kind that could rob her of so much.

Often you hear people say that goodness came out of an illness, and we certainly found that to be true.  Our family became stronger; our gratitude for each other deepened. And yes, over the years, new dreams have been formed and even come to pass. Joy, and wonder, and love, and purpose are abundant. But in 2004, dreams were shattered—dreams that come back to haunt sleepless nights.

Part 5... Preparing for Surgery

The decisions were made-- where the surgery would take place and who would do it, but now there was a week of waiting—waiting, wondering, and worrying. Since the biopsy surgery turned out to be more extensive than any of us had anticipated, recovery was the first priority. Melanie wanted to be in the best shape she could before undergoing the knife, again, so she did what Melanie does when undertaking anything. She threw herself into preparing for the physical and psychological impact of what was to come. A friend suggested the book Prepare for Surgery Heal Faster ~A Guide of Mind-Body Technique by Peggy Huddleston. It came with a set of tapes with guided meditations to help prepare patients for surgery through the use of relaxation techniques and visualizing healing going into surgery. Emphasizing the important role a patient can play in their own healing, it seemed to give Melanie courage and focus.

I, on the other hand, skimmed the book and came away thinking it would be great for her, but it did not occur to me that I, too, might benefit from the use of some of the very same techniques she was cramming to learn before surgery. Instead, I stayed in busy mode, making sure insurance approvals were in place and putting together an e-mail list so that we could keep people informed after the surgery. Starting with just a few of our closest friends and family, the list took on a life of it’s own as Melanie’s friends from high school and college asked to be included. In the weeks to come, it also became a lifeline of support.

And I was very busy worrying. In fact, worrying was my major activity, particularly draining since I was trying to hide my anxiety from Melanie. I guess I also prayed, but fear had so wrapped itself around my heart it was almost paralyzed.  When so filled with fear and anxiety, it was hard to pray. Instead, I had to rely on others to do what I could not; Melanie was on prayer lists and prayer chains across the country. One of my friends from Albuquerque, NM e-mailed to say he heard Melanie prayed for at a church in California where he was visiting the weekend before her surgery. 

The surgery would consist of taking out her thyroid and opening her neck  (called a neck dissection (an awful sounding term!!) to clean out lymph nodes on the left side of her neck. Surgery would take six or seven hours.  The thought of spending that much time in the waiting room cave at the hospital completely undid me as did the alternative. Could we bring ourselves to actually leave the building while she was in surgery? We would wait and see. 

Surgery was scheduled for first thing in the morning. It was déjà vu. The early morning sun waking up Boston Harbor went unnoticed as we left the house on that May morning, the car ride through Boston rush hour traffic doing nothing to calm our frazzled nerves. At the hospital we proceeded through the mazes, only this time we were beginning to learn our way. Hall after all.  Reception, to waiting room, to changing room, to pre-op.

This time, when the anesthesiologist appeared, Melanie was prepared with questions.  “Did he ever say things to people as they were going under?” Her book had suggested asking to have positive things said as she went under and came out of anesthesia, but the doctor laughed her off saying that she couldn’t hear anything because she would be out so quickly. It was a total dismissal of all she had worked so hard to do. I was furious, but what could I say? After all, her dismissive doctor was one of the very people who would hold Melanie’s life in his hands for the next few hours.  So I held her hand saying the phrases that she wanted to hear.

That is all I wanted to keep doing and if they had let me, I would have stayed at her side and watched the gruesome ordeal that was to come the same way I held her hand when she had four teeth yanked out as a child.  When the time came, Chris and I hugged her and watched as she was wheeled into the room of masked nameless faces who would spend hours taking her apart and putting her back together. As the gurney went out of sight, I sobbed the way I had sobbed when she went in for hernia surgery as a three year old. She was a strong, and bright, and determined young woman, but in that moment, more than anything, she was my little girl.

Next~ The Long –and I mean LONG - wait…