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…

Part 4 Where do we go from here?

I guess no one knows how he or she will react when finding out their twenty-four year old daughter has cancer. For me, the numbness that set in was counteracted with my mind being thrown into hyper-drive. It was a strange combination. Finding it hard to sit down even for a minute—feeling I should be doing something, anything-- I had the concentration span of a gnat.  I felt driven to hover over Melanie every minute, bringing her soup or juice with her favorite bendy straws, delivering flowers to her room, rubbing her back as she drifted off to sleep, leaving only because I understood that she needed rest to heal from the biopsy surgery.  Reading a book, or newspaper, or even some mindless magazine was impossible. For days, I still did not want to talk to anyone.

During this same time, Chris was just beginning work with the consulting practice where he still works, but he could be home much of the time. It was a blessing in so many ways as he was willing to take the calls from friends and family and run to the drug store for medications or bandages when I did not want to talk or leave the house. His presence also allowed me to walk the dogs and get a bit of fresh air. While I knew that Melanie was mostly in a drug induced peaceful state, I wanted someone in the house all the time—just in case…. What the “just in case” scenario I was worried about, I don’t know.  At night, Chris was the one person I could, and would, talk to and literally cling to in the dark. Our nights were restless but we were in this together.

Still in shock the day after Melanie had come home from her biopsy surgery, we both also felt an urgency to gather information to make the hard decisions to come. Chris was the perfect person to begin to research Melanie’s medical situation. Turning to the internet, he took notes, and began to have some sense of what the next steps would be. During her testing and biopsy, she was being treated at a good hospital, but not one of the big name cancer centers located in Boston. While we liked the doctor who had diagnosed her, and Melanie particularly felt comfortable with him, we did what came naturally to us. Before Melanie’s post-surgery follow-up appointment, Chris sought out other medical opinions from our friends (and their friends) about next steps and began to look for the “best”—the best surgeon, the best oncologist, the best thyroid specialist.

Spreading the net wide, we heard repeatedly that the hospital we were using had a very good reputation for thyroid treatment, and everyone told us that a second opinion was not really necessary. There is one initial treatment for thyroid cancer; the thyroid must be removed, period. So it came down to who would do the surgery and the choices were myriad. There were otolaryngologists, general surgeons, head and neck specialists. All routinely do thyroidectomies.  We then asked about reputations, and while one person’s name came up repeatedly as a fine surgeon, everyone we talked to said he had the worst possible communication skills with patients-- often bringing them to tears with his unsympathetic and abrupt manner. (Later, when Melanie and I went to a thyroid cancer support group, we repeatedly heard the same stories.)

So there it was. Should she go with the surgeon who had a great reputation in cutting, but an awful reputation with patients?  Should she stay at the hospital that had given her fine treatment in her biopsy, or move to a bigger name hospital? Should she stay with the doctor Melanie had come to admire and trust or start over with a new medical team? Oh yes, and who makes the decision--Mom and Dad, or the smart, extremely competent twenty-four year old patient who was our daughter? Delicate discussion ensued between the three of us about what might be the best way to move forward as we tried hard not keep a balance of support and vigilance about the best care.

Accompanying Melanie to follow-up appointments with her surgeon, we sat together with our daughter, the patient, as she asked questions, trying to hold back until she was through. Ultimately it was Melanie’s decision to stay with her surgeon and we were as comfortable with it as we could be with any plan that included slitting her throat (that is the way I thought of it—an image that took forever to shake) to take out the thyroid and the numerous lymph nodes in her neck.

After much talk together, it was decided that Melanie would return to the same hospital and surgery was scheduled for a week later—enough time for the enormity of her situation to begin to sink in for her.

Next—Preparing for surgery…

Part 1 of People who helped get us through and probably never knew it….

Monday’s post got me thinking about one particular person who helped Melanie and me get through some of the hardest times in this life journey with cancer. There were lots of others and I’ve mentioned a few already—like Sus and Doug who not only walked with Melanie through those early days but also stayed supportive these past seven years. I’ve been thinking I’ll just make this an ongoing topic, because so many gave of themselves in some way.  I continue to cherish each one of them.

The person I’ve been thinking of since writing my last entry has helped me as much as she helped Melanie and I am sure she has no clue. During the early stages of Melanie’s diagnosis and for several months after that, I was out of work as a priest. It is the nature of the ministry as an interim priest. In the best scenario, I would work in a church that was in transition while a parish entered into a search process for a new priest. When assigned by the bishop, with the blessing of the parish, I would work for as short as a year and as long as three years and then move on to the next parish. Ideally, there would be a break of a few weeks between churches, but that did not always happen. Sometimes, the bishop would ask me to move to a new parish before the new rector actually started, other times I would leave a parish one Sunday and start a new assignment the following week (definitely NOT recommended) Then there were the times when it would take a while to be asked to go to a new church. I never knew how long I would be out of work or how quickly I would need to be available. Those of us in interim work understood that the diocese had to constantly juggle to cover the needs of all the parishes in the diocese. But it was unpredictable and out of our control—two of my least favorite scenarios.

In 2003, I finished a church in the early fall and assumed I would be working within a month. Having had no Sundays off between the last two churches, I was tired and needed a break, but when the break stretched into months, frustration set in. All I could do was wait. It probably could have been a good spiritual exercise of letting go, but instead, I was just discouraged and feeling ignored.

About the same time, just before Melanie’s diagnosis, she had been sick for weeks on end, barely having the energy to get off the couch. One day when she was feeling down and I was bemoaning my situation to her, she told me that her friend Sus’s mom always told her that when things seemed rotten to drink a glass of water and take a walk. When you came inside things won’t look quite as bad. Hmmmm… sound familiar? Sounds a lot like that Annie Lamott quote from the last post, “Faith also means reaching deep within, for the sense one was born with, the sense for example to take a walk.” That day we drank a glass of water, threw on jackets, leashed up the dogs, and took a walk.

It was something we would do often in the months to come. After each surgery—and there were three in one month-- recovery came slower and slower. But we drank water and we walked. Even if we were barely moving, Melanie delicately shuffling forward, trying to protect her neck muscles from sudden movement, it helped to breathe fresh air. There were delights to be found—breezes off the ocean, a daffodil or crocus bloom, sea gulls laughing at us, a dog romping off leash. Getting outside even for a few moments took us outside ourselves. And yes, eventually Melanie began to heal and I was called to a parish, but in the mean time,  the water and walking took us a long way.

So today, I raise a glass of water to Sidney Kistin—wise woman, wife, mother and grandmother extraordinaire--unsung hero of the Richmond ladies!

Note, if you would like to get e-mail notification when I post, please add your e-mail to above and it will automatically be sent. Also, to those who re-post, thanks for spreading the word  S

A good life but messy...

So we are back--ten days away that included beautiful beaches, spectacular sunsets, lazy conversations, and deep rest. It was easy to fall into vacation mode when the first resort where we stayed had no television and a "no cell phone talking in public places” policy. In fact, they suggested that people lock their phones in the safe; let’s just say they were into serious relaxation. And while there was cell reception on the island in public places, there was no reception in rooms. As a result, you could see people sneaking off to a deserted pier or dock to talk,  quickly hanging up if anyone ventured near. 

It was simply heavenly not to hear a single phone ringtone or have to overhear a detailed conversation about the shipment that should have gone out or a boyfriend’s despicable behavior. But bowing to our digital age, there was no rule about texting or using an I Pad around the pool. There was plenty of that going on, including yours truly, who just could not resist checking e-mail and messages a couple of times a day.  Even so, it did not take long to get into island rhythm--going to bed early and reading late, sleeping until my body said it was time to get up, eating beside the ocean watching the blue heron that had claimed the tidal beach for himself. Our biggest concern was stopping Key Deer from snatching bread from the basket at the table’s edge.  After twenty-four hours, deep calm and relaxation spread to my core.

And yes, every night as I crawled into bed, my family kept watch on the bedside table in the midst of a little altar that grew with seashells and shiny red leaves of the tree whose name I cannot recall.  While glad I had brought those pictures, too soon, they became reminders of just how complicated life really is. We were only there for thirty-six hours when I noticed a missed call from our son in CA followed by a text message asking us to call. It could not be good news.

So in the glare of tropical sun, I walked to the end of the dock. Hearing first that the boys were fine and so were he and his wife—AKA-the best daughter-in-law in the world. But my DIL’s mom had received a scary diagnosis—the kind that stops you in your tracks. They still needed to do more tests, but her trip to CA that week had to be canceled and DIL and the grandson’s were instead headed to Texas. My heart was aching for their family and for my grandchildren’s other grandmother. After a few days we moved further south and then west in FL, keeping in touch with them and with Grandmother in Texas and fortunately as the week went on, her diagnosis began to improve. (She is still waiting for more definitive diagnosis but certainly things are looking much more hopeful.)

All this to say, I got to thinking about those pictures at my bedside. The ones that show only the smiling faces of a day when all was right in the world for my kids and their loves. Having them with me made it easier to be away. (After all, we don’t tend to take pictures of the really rotten days in our lives.) But at the same time, if I look carefully, I can still see the surgery scars on my daughter’s neck. After the calls, I was reminded again on a deep level of something that I hate. I cannot protect the people that I love from hurt, and pain, and yes, cancer. I do hate that, and I have spent countless hours trying to make it different.  Seeing those pictures every morning, all I could think is that they are smiling and happy in that moment AND that life is messy, complicated, and hard at times. Their life is messy, and so is mine. And so is yours, if you let anyone else get into your heart. It is part of the human condition and if you are going to deal with all that without going crazy or running away, it seems to me that it helps to have faith in something outside yourself.

I am ordained by the church to remind people of precisely that. The reminding others comes naturally and easily, but believing it and living it in my own life seems to be another ball game. As author Annie Lamott says,  “Faith includes noticing the mess, the emptiness, and discomfort and letting it be there until some light returns. Faith also means reaching deeply within for the sense one was born with, the sense for example, to go for a walk." And that is precisely what I did. Every day, I walked.  I walked and I prayed for my family and friends and for those they love and hold dear. I prayed for Grandmother and DIL. I kept in touch and yes, I worried, but wrestling with this whole helpless thing while soaking up the sun was overall a good thing—a good thing for me to recall when a crisis hits again.

Taking a break--already

So I am posting this earlier than I normally do because tomorrow, I am leaviing the wicked Boston winter for 10 days of sunshine, swimming, and walking on the beach. While I am sure there will be quiet time to continue to write about our journey with Melanie’s cancer diagnosis, I have discovered something while composing these first four parts of the story. Writing about this is hard.  It is hard and sometimes painful. After completing the account of Melanie’s first biopsy surgery, my heart was pounding; anxiety coursed through me as I pictured her lying vulnerable in a hospital bed, and it did not go away. It has stayed with me.

The heart palpitations were familiar. About a year into Melanie’s cancer journey, I began to feel my heart pounding and then sometimes skipping a beat. Several doctor’s visits and an EKG, I was asked if I was experiencing any stress in my life. Ummmm –yep. That’s the thing about experiencing major stresses like losing your job, or a spouse dying, or maybe having a daughter diagnosed with cancer. Some stresses build and then linger—often for years—even when the crisis has passed. When I first experienced them, I had begun working full time in a new church, and Melanie was still living with us.  Having a particularly hard time getting her Thyroid meds at a level that allowed her to have enough energy to work, she was struggling. Teaching every day took all her energy -- nothing left over for exercise that has always been so important to her, or any kind of social life. Everyday was a challenge of will to override what her body was saying. Watching her struggle to just get through the day was heartbreaking. There were times when I wondered if this was to be the story of the rest of her life.

About that time, people began to tell me that I was looking tired. Maybe I needed a vacation.  “Just get away from the stress of the past year for a few days.” Really?? And just how was that supposed to happen? With a new congregation in the throws of a transition and a struggling adult child at home, a vacation was not in the cards and the suggestion irked me. Friends wanted to help, but a vacation from daily life was not the answer then, or now. Carrying stress and hiding it while at home is not healthy, but sometimes that is what life looks like. Not only was “getting away” the last thing I felt I could at that point, I did not want to. Work and home both required my attention; what I needed was to find other ways to cope. That did happen eventually, but it took time and ingenuity. (It will be the subject of a later blog entry.)

Yesterday talking to Melanie about this post, she told me she was not at all surprised that I was reacting to digging up such dark times. (I am still trying to protect her from some of these feeling but since I knew she would read this, I also had to tell her first.)  Once again, I realized just how much we have grown on this path and how traveling this journey together we have learned to support each other in such remarkable ways. She was wise, understanding and shared some of her own feelings about when she gets sick today.

So, tomorrow, Chris and I head for the Florida Keys for several days. From there we will take in a Red Sox Game and then spend time with my “Friend Extraordinaire and Best Walking Buddy in the World” and her husband. AND every morning and every night I will put two pictures beside my bed and think of the joy they bring into my life.

That’s Melanie and Ben on the night before they got engaged, and Justin, Farracy, Jackson, and Cooper. I will think of them with joy reveling in the goodness of having them in my life. I will breathe in new life and soak up the healing warmth and I will know that I am—we are—blessed to have each other.

So see you in ten days or so. Blessing to you all.