Wednesday, April 29, 2009

Pandora's Box

Mom was forever grateful that I had successfully recovered from the surgery and was now on a treatment plan, so that's why she considered me so lucky. I didn't want to disagree with her, but deep down it was impossible to consider myself lucky without setting precise limitations on the definition. At times while being protective of Mom's feelings and her level of stress, I would feel like I should try pretending, and not being honest. It was at these times that I needed to find a safe place to secretly store all my genuine feelings, those feelings that I couldn't openly share with anyone. It was as if I gradually created my own personal Pandora's box, where all my authentic thoughts, feelings and fears could safely be stored. It was the one place where I could be real, open and honest with myself. If this sounds unusual or extreme, remember I was this young girl who was being careful not to be a nuisance or cause any unnecessary trouble for my family or friends.

For several years Mom and I had to regularly head back to New York for me to receive a check-up, TEM and radiation. For me, the trips out to NYC were definitely more difficult than the trips back home because each time we boarded the train, plane or bus, I would be filled with an unnatural fear about the outcome of my check-up. What if the tumor had grown, or if there was a new tumor to worry about? It is difficult for me to explain how I would spend these days begging God to let everything just be okay. During these years, it was important to have meticulously good behavior, while secretly believing this painstaking effort would be the best way for me to show God that I was worthy enough to have my pleas granted.

After returning from New York, I would feel as though I had been given a reprieve or official pardon, and I could live with less fear and more enjoyment. Breathing easier meant that I could have more fun and be less concerned about receiving negative news. I would still need to go for weekly blood work at the UW hospital, but it was much less painful and stressful than my time in NYC. I consistently went to church and Mass as often as possible each week because I believed that God was the whole key to receiving a free pass for a life without cancer. I held onto that belief for several years, until I came face-to-face with the hard reality that I was wrong!! How surprised was I?!

Monday, April 27, 2009

New Relationships

There were many things that confused and worried me during my first months home, but I never discussed them with anyone. Mom had given birth to my sister Mary, who was born with Down's syndrome. This added a new level of anxiety and worry to our family, so I didn't want to add any extra stress to anyone. Again, I was dealing with all these concerns with the emotional development of a seven year old, so much of my processing was askew due to my lack of maturity. I never realized how off center my conclusions were. Now when a child goes through a life-changing surgery, I would hope that counseling would be made available to both the patient and family. But this was over fifty years ago, and things were quite different in terms of mental and emotional health support.

During this perplexing time I turned to three relationships that I could access without the need of an adult. My first connection was with food. One day my mom brought me a huge, spiral-decorated lollipop in the hospital. I can vividly remember the sweetness of it and the amount of sheer pleasure it gave me during an otherwise unpleasant day. My bond with food was set in stone from that day forward, and it would be years before I understood all the dimensions of this relationship. Humor was my second connection . I quickly realized how easily I could get peers and adults to like me if I could just make them laugh. I believed that if people liked me, then they wouldn't be so quick to harshly judge my appearance. You see, it didn't take me long after arriving home before I began to think of myself as a kind of freak. At school we never talked about celebrating differences, and that was fine with me because my goal was simple...stay under the radar. Humor came more naturally to me than constantly trying to be aware of what angle I was facing people. As you might expect, that was too exhausting to maintain. My relationship with God was my third connection, and it was as off kilter as the other two. I spent all my time with God begging, pleading, bartering and promising... whatever it would take to make me feel safe and secure in this big scary world that surrounded me.

With all this insecurity, sadness and fear swirling around inside of me, can you imagine how I felt when my mom would regularly remind me to give thanks for being so lucky?! Oh my, I needed to get a different dictionary, because I did not understand her definition of lucky!

Saturday, April 25, 2009

"What's Wrong With Your Eye?"

I wasn't aware of it at the time, but those weeks in New York took away a large chunk of my childhood as I had known it, and replaced it with a confusing world heavy with a feeling of fear. The experience threw me into to a life filled with intense adult issues. Through all of this, I was dealing with everything at the emotional level of a seven year old. Reflecting back, it's no wonder that I was having such a difficult time processing what was going on inside me and outside. I felt that I couldn't burden my mom with all my questions, thoughts and feelings because she was close to giving birth to a new life and she was already weighed down by her worries about me as well as for my brothers and sister back in Madison.

The night we returned home seemed magical because we were surrounded by family and a joyous celebration. I now appreciated all the details Madison offered, from the size of our city to the absolute quiet that surrounded me when I turned out the lights in my bedroom. Everything about New York had seemed enormous, including the amount of city lights, the never-ending traffic, noise and crowds of people in all directions. Madison seemed safe and comfortably manageable.

I had looked forward to returning to Wisconsin where I could resume the life that had abruptly been taken from me. I had daydreams of spending fun-filled days with all my family and friends, while leaving all the darkness of tests, surgeries and treatments behind me in New York. Oh, such a beautiful dream, but far from the reality that faced Mom and me after we returned. It was as though someone had packed a suitcase with all of my fears, worries and uncertainties and sent the suitcase home with me. All it took was an innocent question from a friend..."What's wrong with your eye?" At that moment I felt like I might throw up. All I could frantically think about was what had I done wrong? I obviously hadn't looked at him from the right angle like Dr. Reese had explained I should do. It was then that I realized my life would look different, I would look different, and my new reality would look different.

Thursday, April 23, 2009

Learning How to Hide a Secret

The six weeks we spent in New York were filled with many trips to the hospital for TEM and for radiation treatments . The TEM was the most difficult for me because I would have to stay in the hospital for a few days after each treatment since it would make me so violently ill. I have a vivid memory of trying so hard to handle the nausea and sickness, but it was the first of many times I had to accept the fact that I had no control over it. The radiation was the scariest due to the fact that each time I would need to climb up on the treatment table and lie very still so that they could sandbag my upper body and head to keep me immobile . When this was completed, everyone would leave the room. I was a motionless little body on top of this high table all alone in an empty room with a big machine slowly coming toward my head. The door to the room had a small rectangular window in it where I could just see partial faces peeking in at me. I felt so tiny and defenseless, almost paralyzed with fear. Each time after treatment, I would take that heavy feeling of powerlessness home with me. Being only seven, that feeling of helplessness was hard for me to fully comprehend, so it would stay with me for days.

Initially it was difficult for me to understand how rare it was to have an eye removed, since I was around so many others just like me in the hospital. One morning in a small neighborhood bakery, the man behind the counter commented on the eye patch I was wearing. He asked, "Oh honey, did you get a little boo boo in your eye?" I quickly answered, "No, they had to take my eye out." I still can picture the horrified look on his face, as he apologized over and over! At that point I did not understand why he was so utterly shocked by my response, and I wondered if I had said something wrong. My mom explained that many people had never met someone who had an eye removed. I processed that for a long time before concluding that maybe I shouldn't be as open and honest when talking about my surgery. I didn't want others to look at me with horror, like the baker.

That summer there were many skills I had to be taught before returning back to Madison. I had to be fitted for a prosthetic eye, and learn how to care for it properly. This took lots of practice on my part, but finally I mastered it. One afternoon after an appointment with Dr. Reese, we took the elevator back to the clinic. During that short ride, he told me something that would literally change me forever! He began by complimenting me on my ability to become skilled with all this new knowledge, and then he said quite seriously, "You know, Laura, if you look at people in just the right way and the right angle, they will never know you have a prosthesis." I quickly understood that people should never be able to tell that I was different in any way! Do I need to tell you what a profound influence those few words had on the rest of my life, from that day forward?!

Wednesday, April 22, 2009

My New Reality

My first recollection after waking up from surgery was the mammoth size of the room. I was in a room with at least eight other beds. I was aware of the amount of bandages covering my head, and the fact that I felt a lot of pain and very sick. There were nurses all around me who were all trying to help me feel more comfortable, but nothing seemed to help. My mom and aunt were near my bed, but unable to get close because of all the activity. I slowly fell back asleep and have no more memories until the next day when I woke up and found Mom sitting by my bed, holding my hand and telling me what a great job I had done. She explained how well the surgery had gone and how the only thing I had to think about now was getting better. I thought Dr. Reese must have taken care of the white dot, and I would be able to go home as soon as I felt stronger. I knew I could do that!

Can you imagine how I felt a few days later when Mom and Dr. Reese put into plain words the fact that my eye had to be removed because of the size of dot? This was followed by the fact that there was also a white dot in my other eye that would need to be treated before it could grow any larger. As I was listening to all this information, I felt like I was floating in outer space while watching a sad movie about some other girl's life. I didn't understand the seriousness of how this was about to impact my life, but I did know that I could run away and go someplace they couldn't find me. Isn't that how any typical seven year old reacts when told something he/she doesn't want to hear? I guess I was experiencing being a typical child for possibly the last time, before entering a very real fight for my life.

After an extended stay in the hospital, I was finally released to go back to the apartment where we would be staying for the remainder of the treatments I would be receiving. Good-bye to the Barbizon with air conditioned comfort and doormen, and hello to what was the predecessor to the Ronald MacDonald House, without any of the amenities. We were on the fifth floor above the hustle, bustle and noise of New York City. There were two bedrooms, one tiny bathroom, a small living room and kitchenette for two families to share. We liked the family that was sharing the space with us. Their infant daughter also had retinablastoma and had undergone surgery, and was also about to undergo treatment. This meant we all had a long stay ahead of us, away from family and friends. We bonded immediately.

The scorching summer heat of New York was our only true discomfort. With no air conditioning or fans and an almost eight month pregnant mom, we did our best to keep her as comfortable as possible. At night we would wrap her neck with a frigid towel, and many of our days were spent at the hospital. I received two types of treatment, one being radiation and the other was called TEM, that being a precursor to chemotherapy. I never could remember what the acronym stood for, but many years later Mom told me that TEM was mustard gas. Finding that out helped explain why I would get so violently ill each time I would receive a treatment.
During these many weeks in New York, I had a chance to begin comprehending my new reality!

Tuesday, April 21, 2009

Forever Changed

Nothing could have prepared me for New York City. Getting off the train, I was confronted with noise, people, smells and frenetic energy that I had never experienced in Madison. I was busily distracted by this heightened level of living when I realized we were getting into a taxi cab. Mom, Aunt Mary and I were squeezed into the back seat of this terribly hot cab, and before I had the time to take a breath, we flew out into traffic at a speed that amazed me. Our driver spent the entire trip screaming at other drivers. He swerved in and out of his lane, everyone seemed to get in his way. He was using some "naughty" words filled with raw emotions. I remember wondering what my mom was thinking about his bad language. I didn't recognize many of his word choices, but I was quite certain that if I used even one of them, I would get my mouth washed out with soap.
We safely arrived at the Barbizon Hotel. Having never been at a hotel, I was impressed with everything about it. There was a doorman, a check-in station, and a bellhop who helped us carry our luggage to our air conditioned room. This adventure was beyond anything I could ever have imagined, until at bedtime when Mom told me she had made an appointment to meet with a doctor who would give us information about the problem I was having with my eye. I told her I was confused because I didn't feel that I was having any problem. Well, that was the perfect opening for her to have a solemn talk with me about the possible seriousness of that white dot in my eye. She explained that we came to New York to meet with this special doctor who knew a lot about how to take care of the white dot.
On the way to the hospital where we were meeting Dr. Reese, I have a vivid memory of looking out the cab window at all the huge buildings that were slicing into the sky. I felt very small and fearfully intimidated by these giants. At that point, all I wanted was to go to the train station and head back to the safety of home. I was ready for this adventure to be over, although in reality the scary adventure was only beginning.
After the appointment I was informed that Dr. Reese wanted me to check into Columbia Presbyterian Hospital the next morning so that he could do the necessary surgery to remove the white dot. I kept thinking, "Then everything will be okay." I kept repeating that until falling asleep in the comfort of the air conditioned hotel room.

Monday, April 20, 2009

Loss of Innocence

I was leading a very uneventful life back in 1954. I had an older brother and sister along with a younger brother. Mom was due to have another baby in September, so that would put me right in the middle of my siblings. During summer vacations, we would spend most of our days outside playing with the rest of the kids from the neighborhood. We lived on a cul de sac which provided us a safe place to ride our bikes and play endless games of kickball. We would have regular trips to the beach which was a block away. There was the Village Store across from the park, so we knew we would have the opportunity to stop in to choose little snacks for just a few pennies. Life was simple, love-filled, and comfortably predictable.

One afternoon in late June Mom called me inside to ask me one question. She gently asked me to cover my left eye and then tell her what I saw in her hand. If I guessed correctly, I would be able to eat it. I remember how excited that made me because we were always expected to share our treats with our siblings. I was motivated to win, so I knew all I'd have to do was look hard and think hard. I could not see what she held, but I did think there must be a piece of that was my guess. I was shocked when I uncovered my left eye and saw a pad of paper.

A neighbor had brought Mom's attention to a white mark on my left eye. She suggested they bring me to an eye doctor to have it examined, but Mom thought she would first do her own test to determine if I had vision in both eyes. The test results were confirming her biggest fear, so within a day I had an appointment with an eye doctor who was able to identify what it was, but informed us that I would have to travel to New York City to have the surgery.

I didn't know anything about these facts, as I was only told that Mom and I would be going on an adventure to a large city with my favorite Aunt Mary. Silly me, I was excited about going on my first train ride and being able to sleep and eat our meals on the train. It was a tremendous new way to spend my vacation. I do remember that many of the adults were looking at me with a sadness in their faces and eyes. My grandma even sobbed when she said good-bye to us at the station. As I hugged her, I reminded her that we would all be safely back home soon. I thought maybe many seemed sad because they had to stay home as we headed east on our adventure. I also received several holy cards with promises of prayers for me, and again I tried to make sense of it by thinking maybe this style of card and prayers were gifted to those going on an extended trip. Wow, going on a summer vacation kept making me feel more and more extraordinary!

I heard my mom and aunt having quiet conversations on the train trip, whispering throughout many of them. The only word I didn't know was cancer. I wondered, "What does that word have to do with our special time together and why was I the lucky one to be chosen to go?"

Sunday, April 19, 2009

It's Called WHAT?!!

When Dr. Schink arrived to share the final diagnosis, my initial response was one of shock and bewilderment because I had never heard of a cancer that sounded even remotely similar to it! Leiomyosarcoma sounded scarily serious. For now it was in my life, so I wanted to be able to at least pronounce and spell it correctly. Maybe then it wouldn't seem as intimidating, complex, or dangerous.

After explaining the basic information he felt we should know, Dr. Schink warned us to not look it up on the Internet. Honestly, hearing that made my mind effortlessly go to a dark place full of frightful images of the unknown possibilities. I forced my attention to return to my hospital room and complete the discussion, after which I felt mentally and physically exhausted, and I needed a nap. I closed my eyes and quietly recited again and again the Serenity Prayer. Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Eventually I fell into a peaceful rest, with my little acorn clenched in my hand.

We were told about the tests being run to determine if the cancer had spread to any lymph nodes or tissues around the site. It would take a few days to receive the results, so Jim, Jessica and I had many hours to fill. I was even watching soap operas and talk shows because it was mindless chatter that didn't require mental effort on my part. At that point I had the attention span of a gnat and I was beyond full in the processing department of my thoughts. Light fluffy material was what worked for me.

My husband and daughter were perfect companions that complemented each other's strengths. It was difficult for Jim to sit and chat for an extended period of time, so he was happy to be the gofer guy who ran errands and took care of all the work at home. Jessica, on the other hand, was able to be in my room day and night. Yes, she was allowed to stay with me each night. She would listen to my fears and joys, panics and plans for my future, deeply serious and abundantly silly thoughts, and all with a trusted understanding of respect.

My friends and entire family showered me with prayers and endless offers of support and encouragement. Everyone understood limiting visitors due to my need to use this time to begin the healing of my body. I was physically exhausted from the surgery and mentally challenged by the fact that my life would be forever different in unknown ways.

The test results showed the cancer had not spread to any lymph nodes or near-by tissue! Tears dripping with joy and relief flowed freely. This news meant that I may possibly be released to go home soon. Before this could happen, there were a few issues that needed to be addressed. I buckled my seat belt, preparing to receive my first transfusion, which would be followed by my first liver biopsy. This visit to UWCCC was filled with all kinds of firsts, but not everything about cancer was a first for me.

Now may be the logical time to share with you the details of my two previous cancer journeys in my life. I believe this will help you understand the cornerstone of my emotional belief system, and how this system had such a profound affect on my life.

Tuesday, April 14, 2009

My Intuitive Feelings

Being in a hospital bed gave me an abundance of time to ponder my future. After a morning visit from my surgeon, I knew that I had at least a day before we would find out what type of tumor they had removed. He explained that he was puzzled because he couldn't readily identify it during surgery, which he was most often able to do. After Dr. Schink left my room, I asked Jessica to contact Francis, my spiritual teacher, and tell her about my surgery and ask if there was an opening for me to come on retreat as soon as I felt strong enough to travel. I knew that flying to California wouldn't be an easy trip, but I trusted my feeling that now was the time to begin making sense of how to best handle what was happening in my life.

There's a degree of irony when considering that before the discovery of the tumor, I felt much too involved in my busyness to go on retreat that summer. I was taking classes toward my Masters, working at Talbots, private tutoring for students in reading and math, and spending time with my first grandchild. Isn't it interesting how quickly my priorities shifted when confronted with cancer? The 11cm tumor was my brick wall...the thing that finally drew my attention away from the plethora of inane commitments that consumed much of my time and energy. Could I have been so engrossed in creating and maintaining my idea of a perfect life that I had lost the sense of what is of true importance in leading an authentically fulfilled life?

I received two treasured gifts for my trip to the hospital, one being a Demdaco Angel of Strength from my daughter, with the inscription "Be strong, and when you can't, let me be strong for you"...Love, Jessica. The other was a hand-knit little acorn from Susie. Having grown up on Oak Court, I had shared with her the strong connection I felt to oak trees for their power and strength, and to the acorn for the new life it represented. As I clutched this hand-knit acorn and read the inscription from Jessica, I was reminded that I already had support close to me, and all that I needed in my uncharted journey ahead would be provided.

Sunday, April 12, 2009

Preparation for Surgery

Within an hour of being admitted, I found out explicitly many of the details I needed to know about my impending bowel prep. After bringing in two huge jugs full of Go Lightly, the nurse gently told me that patients often experienced difficulty keeping the contents in their system long enough to complete both containers. She offered to put a feeding tube down my nose and throat if my body rejected the Go Lightly. That was all I needed to hear before I immediately resolved to welcome each and every drop into my mouth. Jessica pledged to help in whatever way would be helpful...teamwork at its best!

It didn't take long before we both decided the contents needed to be renamed. Go Lightly, Run Quickly seemed so much more appropriate! We spent the afternoon energetically focused on using whatever technique was helpful in keeping me motivated to reach my goal... praying, positive words of encouragement, counting time between sips, laughing, crying, cajoling. The final outcome was finally achieved, just in time for a nurse to arrive with two enemas. By then I felt as though I had a thorough answer to my earlier question about a bowel prep. I learned one missing detail before sunrise the next day when I was awakened to receive an antibiotic enema. By the time I went to surgery, I'm pretty sure that I didn't have many bodily fluids left.

Before leaving for the operating room, I shared a quiet prayer with Jim and Jessica. I continued to experience a deep fear and anxiety, so upon saying my good-byes, I chose to visualize a white healing light of divine energy resting on my shoulder. This visualization filled me with a peaceful feeling that ran throughout my body. Even though I was entering into the unknown, I was at peace. What an incredible gift to receive! After surgery to remove the tumor, I learned they also had to remove a section of my bowel. Now I was thankful that I had entered the procedure with as "clean" a bowel as humanly possible. I felt like I had been prepared both physically and spiritually.

Friday, April 10, 2009

Expanding My Vocabulary

As soon as I was able to compose myself, I called my brother George to ask if he could speak with someone affiliated with the Comprehensive Cancer Center who could get me an appointment asap. George was my logical choice since he was on the board of directors at the UW hospital. When he returned my call, he was able to give me the first glimmer of good news: I had an appointment on July 8th with a gynecological oncologist, a job title that I never thought would enter my vocabulary.

During the Fourth of July holiday my husband, Jim, and I had planned on hosting a birthday party for our granddaughter who was turning one. Setting up for Piper's birthday occupied my mind and body, but lurking behind each moment was the foreboding reality that I was coming face-to-face with the terrifying unknown of cancer. I could only distract myself for a limited amount of time before another unanswerable question would pop into my conscious thought. Most of these questions would begin with a "What if" and end with a sharp shiver of dread running through my body.

During those endless days of waiting, I prayed for strength and a sense of peace as I traveled along this dark and mysterious part of my journey. I was in a state of limbo, feeling like I was walking through Jell-o in slow motion. My days felt like a cocktail of fear, anxiety and Jell-o.

When filling out the paperwork for admission on the morning of the 8th, I was casually informed that I was also scheduled for surgery early the next morning. Initially I wondered who had determined that I would need surgery before being seen by any doctor there, but then I figured that all my test results had already arrived and surgery must have been deemed necessary. I immediately felt in capable hands, even though the only person I had contact with was the admissions clerk. I remember trying to read the form she was filling out. Being a primary teacher has its perks, one being that I was highly skilled at reading upside down print. I read something foreign to me, so I leaned over to Jim and asked, "What's a bowel prep?"

Thursday, April 9, 2009

Harsh Realities

On the first day of the 2001 summer vacation I had an appointment with my Family Practice doctor. During the exam he felt something in my abdomen.He told me not to worry because it was most likely scar tissue from an earlier surgery to remove fibroid tumors, but he wanted me to get it checked out. What followed was a solid month of going from doctor to doctor, test to test, appointment to appointment. Meeting with so many unknown doctors was scary, intimidating, and coldly impersonal. I wanted them to understand the depth of my fear. After each test I would return home to wait for the results, becoming desperate for a sense of direction, something that would lead to a diagnosis and treatment. I was beginning to feel like a piece of meat being passed from inspector to inspector, with none of them able to grade or label me.

The final insult came when a substitute nurse called to give me the long-awaited verdict. The regular nurse was on vacation, taking advantage of the Fourth of July holiday. Our conversation began with her mispronouncing my name, and was followed by her trying to explain why the doctor was not available to speak with me. You see, he was wrapping up all his business so that he, too, could leave for his long holiday weekend. She explained that my case was more involved than "they" felt equipped to handle, so I should contact the UW Comprehensive Cancer Center after the holiday. I hung up feeling like I had been slugged by an all-powerful fist. I could barely breathe much less answer any of the questions my daughter had concerning my diagnosis. She strongly encouraged me to call back, insisting to speak with the physician. After extended minutes of gut-wrenching sobs, I gathered up every atom of courage I had and phoned his office, firmly asking to have a few moments with the busy doctor. When he picked up the call, even I was surprised with what escaped from my mouth! "Is this the way you would want your mother to be treated?" hung in the air for several moments. "I don't care if you're leaving for a long weekend, I deserve more than a call from your nursing substitute." He apologized for his insensitivity and proceeded to explain the complexity of my case. He assured me that he would put in a call to the UW before he left so that they would be expecting me.

This was the day I learned that no matter how vulnerable you feel, you must stand up for your beliefs and rights. If you don't, who will?


Wednesday, April 8, 2009

The Beginning

Have you ever felt a nudge, that little voice inside that encourages you to make a certain choice or go in a certain direction in your life? Well, over the years I have learned to deeply listen and trust the quiet directives I receive. It is through those instincts or intuitions that I feel drawn to share the inner lessons that I've gathered along the way in this unexpected journey of mine. So in the days ahead I will be opening up all the little and big, difficult and easy, long-term and short-term learnings that have come my way during my 61 years on this earth.

It's during my quiet times that I now connect with these invitations. But you should know that this level of trust did not come easily for me. I ignored the little voice for many years because I was too busy living the perfect life. I was so entangled with busyness that I didn't have the time, energy, or space to fit meditation into my schedule.

Looking back, I think of those times as the yoo-hoo moments that I totally ignored. I didn't RSVP to any of the invitations I was receiving to enter into the silence. It wasn't until June 2001, when I heard the words, "You have an 11 centimeter tumor in your abdomen," that now was the time to begin paying attention.