My Story of Hope

 CHAPTER 1

I remember that fateful day in the spring of 2000.  I was at a health booth at our local Community Center, going through the motions to get points for my husband=s insurance plan.  After all, I was forty three and the picture of good health.  When the nice lady behind the counter quizzed me about stress in my life, I honestly answered Athe only stress that I could think of was that my oldest son was going away to college in the fall and that I was basically a happy go-lucky girl.  No need to worry about me@ Wow!  That memory sure comes back to haunt me.

One night in July, I wondered why my stomach kept growing larger.  After dinner with some friends, I laid down on my back and pointed out that my abdominal area looked like I was four months pregnant.  Every person gains weight in a specific location but mine is typically not in my stomach (my butt region is an entirely different story). Concerned enough to call my doctor the next day, I was able to get an appointment right away and was told that I had an ovarian cyst.  ADoes it need to come out?@ I asked nervously.  AYes, as it is the size of a beach ball!@ he replied.  First, an ultrasound of my abdomen was needed.  At that time, we lived in a small Wisconsin town of three thousand and they were able to fit me in about an hour later.  The technician gasped as he performed the procedure.  I must have asked him what was wrong, as he caught himself and said that my stomach was really full from all the water they had me drink for the ultra sound.  Naively, I believed him but later learned that was just the beginning.

My husband John and I met with the local surgeon, a few hours later.  AWhen do I need to have surgery?@ I asked.  His reply was AYesterday!@  That shocked the daylights out of us, so we agreed to have it two days later at our local hospital. He did not think it was cancer and if it was, it would be a low grade form.  I felt like he was speaking a foreign language but his cool demeanor and great reputation were comfort enough.  Small town hospitals do not have the specialists that metropolitan clinics have.  In hindsight, we should have asked for a second opinion in the Twin Cities, which was only two hours away. 

The day before surgery, I had a pre-op appointment.  The nurse asked me if I realized that I was having a complete hysterectomy and I nodded my head yes.  She also said under her breath that the surgeon must be suspecting cancer.  I felt like someone kicked me in the stomach but would worry about that when the results came in. 

Our oldest son had a two day college orientation scheduled on the same day as the surgery.  UW- Madison was four hours away, so I told John if the results were good, that the two of them should take off anyway.  I wanted to make sure that Dan could get into the classes that he wanted and assured John that there was a myriad of people to take care of me.  After surgery, John came in to tell me that everything looked good, so I groggily told him to take off.  When I woke up later that day, my younger son Tim was sitting in a chair next to my bed.  There is truly nothing like family and my heart was overflowing with happiness and pride.  That evening a friend of mine came to check on me.  We visited for a little while and I asked her to please turn on Survivor, which was in its inaugural season, before she left.  I remember falling asleep in mid sentence and when I awoke a few hours later, my friend was gone but Survivor was on the television.  There is not much I remember about that episode, except that Gretchen was voted off.  The power of reality TV!

I was in the hospital about five days and had visitors coming and going.  Every summer my husband=s bridge group had a golf outing and seeing as though I had never golfed before, the excuses were mounting on why we would miss it. When I called a friend to tell her that we would miss the outing for the fifth year in a row, she asked what my excuse was this time.  ADoes major surgery qualify?@ I asked.  She was shocked, but five minutes later my friend and her husband showed up in my hospital room.  The power of a small town!

A few days after returning home, I received the news that I had ovarian cancer.  It was not a big surprise but when you are told to make an appointment with an oncologist that shakes you to the proverbial core.  We decided that it was time to see a doctor in the Twin Cities but while waiting for an opening, we met with a local oncologist in a nearby town for the first opinion.  It was hot and I swear the air conditioning did not work in the clinic.  Because my abdomen was still sore from surgery, I was tired and cranky waiting for the doctor to arrive.  After he came in, I shut my eyes and listened while he talked about the Aprotocol@ for chemotherapy. He mentioned that even though they did not know what stage it was in, he would still treat it with chemo drugs.  At that remark, my eyes shot open and I questioned why they did not know what stage it was in.  Apparently someone at a different, larger, hospital mixed up one of my tests with another patients=.  The only way to repeat the test was to open me up again.  I was livid, and the hospital would not even acknowledge that someone made a mistake.  Seeing as additional surgery was the farthest thing from my mind, we met with a caring gynecologic oncologist the next week at Abbott Northwestern in Minneapolis. She agreed to take me on as her patient and for the first time in two weeks, I felt that everything was under control.  The power of a big city!

The following Friday, we left in the wee hours of the morning for the drive to Minneapolis.  Our appointment was early because it took about eight hours from the time we saw my doctor until the time we were released. To start things off my blood was tested to see if the levels were high enough to receive chemotherapy. After meeting with the doctor, the chemo nurses inserted an IV into the top part of my hand. Oncology nurses are one of God=s gifts to cancer patients, as they are patient, kind and understanding.  I have horrible veins, so one of the nurses wrapped my hand in warm towels to get the veins to pop out.  Next, the nurse gave me a bag of Benadryl in my IV, just in case I had an allergic reaction to the chemotherapy.  It also made me sleepy which, as one can imagine, was an added bonus. After that, the fun really began - just kidding!  They hooked up the chemo drugs to my IV and right away I started to feel a little off kilter.  Let=s just say that the best part of the entire day was the warm towels and food they brought around in a little cart.  My favorite treat was animal crackers.  To this day, I still eat them but have switched to the yummy chocolate flavor. Because we had a two hour ride home, our doctor suggested that we ask one of the nurses to give me another bag of Benadryl to make me sleepy during that stretch. To me, that was a miracle drug!  It was hard to believe that this would be my life every three weeks for a total of six treatments.  Everything was happening so quickly.  How did I get to this point?

I felt pretty good for a few days but decided to take the anti nausea drug Compasine to ward off any side affects that were headed my way.  That was a huge mistake!  After taking them for a day, the side affects made me crazy.  I have never used illegal drugs but now know what taking Aspeed@ feels like.  John and I ended up in the emergency room. I was told to stop taking the drugs and that I would feel better after they left my system.  The doctor was right and I felt pretty good until my next appointment three weeks later.  Unfortunately for me, I seemed to get most of the side affects from the chemo and it soon looked and felt like my hair would be a thing of the past.  I was determined to keep it until we dropped Dan off at Madison two days before my second appointment as I did not want his last memory of his mom to be sickly and bald.  Hey, even I was freaked out looking at myself in the mirror! Before we took Dan to Madison, I discovered a letter that was left lying around his bedroom that he wrote to himself.  The only thing that stuck out in my memory was that he talked about my cancer and that he was not ready to lose me.  Apparently, I taught him such things as, “to have a good friend, you have to be a good friend;” and,” when in doubt, go to Disney World!”    

On the day that we drove Dan south to Mad town, with my Badger red bandana covering my head, the entire family delivered him to college.  It was a bittersweet moment for me but my son was a trooper. Before we left, he gave me a hug, looked at me with his big, scared eyes and went off to meet new kids.  By that time my head was itchy and the bandana was turned almost sideways.  In other words, I looked a mess on what was probably the hottest day of the summer. We stopped at a McDonalds half way home but before we got out of the car, my husband chuckled and said, AI hate to say it but your hair looks awful@ It was pretty funny, and when we got home that night I asked AWho wants to help me pull the rest of the hair out of my head?@ John thought I should pull it out while in the shower but that seemed like too much to clean up.  So under the stars and moon, I quickly tugged on the hair and it easily came out.  That was the most liberating feeling as my head finally cooled off. It felt so good that I thought John and Tim were going to have to get used to my baldness.  Definitely comfort before beauty!

Before I had my surgery, my sister Jody (who lived in Texas at the time) persuaded me to get a CA125 test. She had just heard about it that morning and learned that it showed the possibility of ovarian cancer.   The normal range is thirty-five or below.  Mine registered at sixty-five. That is one of the tests that they do before each chemo treatment.  While, receiving the second round of chemo, I learned that my CA125 count dropped to five.  What a relief, the drugs were working! The side affects from each round of chemo were becoming more and more prevalent.  I never got sick to my stomach but one nurse likened it to Afeeling like you were run over by a Mack truck@.  Each second of the day seemed like a minute, each minute like an hour and each hour like a day.  Only time (as in days) made me feel a little better. One of the side affects for me was constant constipation.  Luckily, just hearing my friend Sue=s voice on the phone did wonders for that problem.  Go figure! Before one of my treatments, I caught a cold and my white blood count was too low to receive the chemo.  It made me nervous to delay it a week, thinking that it might disrupt the progress.  I thought how odd it was that I wanted so badly to be healthy enough to receive the chemo, so that more pain and suffering could be inflicted upon my already ravaged body.

Jody came to stay with me for a week in September.  During that time a friend stopped by to cut off the little wisps of hair that I was unable to pull out on that August summer night. Jody sighed at the tragedy of the situation.  I persuaded her not to worry as it was saving us money to keep the air conditioner off during the hot, Indian summer days.  I was a big fan of president movies so we watched them all from Murder at 1600 to Dave to The American President. To this day they are still some of my favorites.  Just having Jody around lifted my spirits and I was ready to continue the fight.

In early October, my friend Carol came over from New Hampshire to help out for a week.  I felt pretty good because it was the week of my treatment and that is when I felt the strongest and best.  She decided that we were going to make my ten batches of Christmas cookies which is always a huge undertaking for me.  For all of my friends and family, don=t worry if you received them that year as they were safely stored in the deep freezer!  Carol has endless energy so we also cleaned, cooked and walked until we dropped.  Toward the end of the week she accompanied John and me to my third treatment.  That  proved to be a blessing, as she took my mind off of the pain and worry and gave John a much needed break from the whole process.  Also, by the third treatment, my CA125 level dropped to about one.  My doctor was thrilled and wondered if I really had needed chemotherapy drugs.  I cheerfully asked her if we were done and she replied that we had to finish the regimen of six rounds.  With such good numbers, it was a small price to pay for a clean bill of health.

Before John and I were married, we decided that Northern Wisconsin or Minnesota would be a great place to raise a family. We got our wish with John working for two great companies in those states.  When you live in Wisconsin, you almost always become a Green Bay Packer, Milwaukee Brewers and Wisconsin Badger fan.  Our friends Billie and Jerry gave us three tickets to a Monday night Packer/Vikings rivalry football game in early November at Lambeau Field.  The weather forecast called for rain which made me crazy worried about going and catching a cold, as I did not want to delay another treatment.  John convinced me that this was a chance of a lifetime, so we drove the five hours to Green Bay and watched the Packers win with a miracle shoe string catch by Antonio Freeman in overtime!  John, Tim and I happily listened to the post game show the entire ride home.  It was an unforgettable night mixed in amongst the gloom and pain that I will forever cherish.

My son Tim was a junior in high school during all this turmoil.  He patiently understood what was going on and helped out whenever possible.  Except for school, he rarely left our home.  Tim and several of his friends took AP History and they spent almost every school night at our house studying.  We had a walk out basement with a refrigerator and oven in the laundry room.  They entered through the downstairs door and ate pizzas throughout the evening.  Their constant chatter helped ease my mind, although I felt more than a little guilty that pizza was Tim=s staple food in his diet. The girls always came upstairs to check up on my health which made me feel special.  In a weird way, I look back at those days with fond memories.

As the weather got colder, we cranked up our fire place.  Sometimes, it got so warm down in the basement that I could hardly breathe and felt like it was actually my body that was on fire.  I learned that at those strange times I was experiencing hot flashes.  Nobody explained that when I had the hysterectomy in July my body went into instant menopause.  Although, I had heard of menopause and hot flashes, unless you have been through them both, you cannot possibly understand how women feel.  I almost felt like I was dying, because the hot flashes were so peculiar.

During the months of treatments I was afraid to go out to a public place, for fear of getting sick. Carol and her husband Mark came back to Minnesota for Thanksgiving and wanted to visit for a night. We decided that I should venture out and headed over to my favorite AUp North@ restaurant called The Five O=clock Club for dinner.  One of Carol=s friends sent some beautiful scarves for me to borrow for my bald head.  Up to that point, I had just been wearing red and blue bandanas or nothing at all.  So, it was a treat to have her wind one of them into a beautiful Aturban@ and away we went.  Halfway through supper, I could feel the scarf coming loose and it completely fell apart.  Horrified, I held it on with both hands and then all four of us laughed at the humorous situation. 

One of my favorite memories of this traumatic experience happened around the same time.  Dan asked me if he could bring a friend home from his dorm for Thanksgiving.  It was fine with me but I told him that there would not be much homemade food around.  Ben is from Oregon and he quickly became a member of our family and is like a third son to me.  Dan swears that they are twins that were separated at birth.  Every Thanksgiving no matter where everyone is located, we always have a football pool for the two holiday games.  The only people that are in it are Dan, Tim, John and Ben.  After drawing names for the order of selection, they pick their teams.  For the last several years we have needed a conference call, as the boys have all gone their separate ways.  One year, Dan was on his honeymoon in Thailand but managed to find time for that all important call.  There is now a traveling bobble head turkey trophy for the victor.  Dan=s wife Sarah was happy to give it up to the next winner (Tim) as I am pretty sure that it did not match their home decor!

My last treatment was in December.  The days that I felt good between treatments were almost non-existent.  The side affects on my body were cumulative but I was buoyed by the fact that the misery would soon end.  We were very thankful for my doctor and all the nurses who patiently took good care of me.  Because my husband works for a turkey company, we brought in a deli- tray for all to share.  It is funny how safe I felt as long as the chemicals were going into my body and were killing off any cancer cells.  Once the treatments stopped, I started to feel a little vulnerable that the cancer was not completely gone and the cells would start multiplying again.  After a follow up CAT scan, a spot was discovered on my liver.  A month later, the scan was repeated.  Although the spot was still there it was determined to be benign.  Yahoo, I was officially cleared!  It was time to thank my family and friends.

I decided to host a ASurvivor@ party to let everyone know how much their help was appreciated during this trying period of my life.  But first I had to compile a list of people to invite.  When looking back, I was overwhelmed by the amount of family, friends and acquaintances that came to my aid.  One friend brought me chicken dumpling soup every three weeks to coincide with my treatments.  It was one of the few healthy foods that tasted good to me.  Another friend and her mom did the same thing with homemade cinnamon rolls.  A multitude of people from our town knew that my first love was chocolate so there was never a shortage of sweets in the house.  It was no wonder that I gained six pounds from one treatment to the next.  I complained to the nurse on that one saying AWho gains six pounds in three weeks?@  All she did was smile and assured me that was a good thing!  One day, A Sunday school class from our church came over to rake leaves.  One of my friends called every week to see what my family needed from Wal-Mart.  As it was getting close to Christmas, I gave her a list of DVDs that my boys wanted.  I never paid attention to their Aratings@ so when they opened them up on Christmas day, in front of my in-laws no less, I was horrified to notice that some of them were rated R.  Oh well, what were the chances that they would watch them while Grandma and Grandpa were still visiting?  Besides, Grandma never stayed awake during a movie anyway.  You can imagine my beet red face when I kept looking over to John=s mom during the movie noticing that she never slept a wink!

The theme for my ASurvivor@ party was from the reality show that gave me so much to look forward to one night a week during my treatments.  Dan put together a C.D. with the shows= music as well as Beach Boys and other summer songs.  I ordered decorations, paper goods and really cool looking key chains from Oriental Trading Company.  The key chains were used as thank you gifts for all of my guests and there were other door prizes as well.  At the appointed hour, forty Aangels@ arrived to help me celebrate my good health.  I only wished that my family and friends from out of state could be there as they had done so much for me.  By the time everyone left, my heart was overflowing with the realization of how many lives I had touched over the years. That warm, fuzzy feeling will stay with me forever.

CHAPTER 2

With each three month checkup, I eagerly awaited the results of the CA125 test.  The number continued to stay low, so it seemed that I had beaten Ovarian Cancer.  Weight watchers helped me lose the thirteen pounds I gained and to relearn how to eat healthy foods, at least most of the time.  Chocolate snacks continued to be my food of choice for the weekend!

At the time of my cancer treatments, the company that John worked for was in the process of being sold to a larger one located in Minnesota. Because John was an accountant, he was involved in this process.  Although he could not fill me in on the specifics, we discussed the possibility and ramifications if the deal Acame down@.  It made the two hour rides pass quickly and we wondered what else could possibly happen during this unsettled period in our lives. Well, it did happen and that is why we presently live in Minnesota.  John was given a great job with the combination of the two turkey companies but he lived between two states for a year.  It worked out well for us as Tim finished his senior year of high school and we did not have to move him away from his wonderful group of friends.  One January day while John was in Minnesota, I read an article in the U.S.A. Today newspaper.  It was about ovarian cancer patients who have the BRCA gene mutation and their chances of getting breast cancer, which was somewhere in the 80% range.  One of the groups of people that have this particular gene mutation was those of Ashkenazi Jewish descent, affecting Eastern European Jews.  Yikes!  My parents= families descended from Germany, Russia and Spain.  John came home from Minnesota that night and I quickly announced my need for a double mastectomy.  His comments were something like ABack the train up, what are you talking about?!@  After showing him the article, he agreed that we should bring it with us to my upcoming Doctor=s visit.  When my doctor entered her office, we quickly showed her the article and without hesitation she asked if I was Jewish.  AYes@ I replied and then she told us to speak with a genetic counselor and if I tested positive for the gene, she advised me to get the surgery.

With the sale of the company, our insurance changed and we had to switch doctors.  It was difficult to say good-bye to my oncologist at Abbott Northwestern but felt that Mayo Clinic was a great alternative.  We began our foray into the incredibly complex clinic in Rochester, Minnesota with an appointment to see a genetic counselor.  A few weeks later, we sat in her office and discussed gene mutations.  Because of the young age of my ovarian cancer diagnosis, she explained that there was a good chance the test result would be positive for the BRCA gene mutation.  She also asked if I had any sisters or cousins with ovarian or breast cancer.  That question brought me back to one of my yearly checkups in Wisconsin.  When my family physician asked if there were any changes to my family history, I mentioned that a first cousin died from ovarian cancer and another survived breast cancer.  He explained that those relationships were not close enough to warrant any concern.  In all fairness to that doctor, it never entered my mind that any gene mutations were running rampant in my family and that subject was just now making front page news. It took all of five minutes for me to tell the genetic counselor that I believed that my test would be positive and that I was prepared to have a double mastectomy.  She seemed surprised at my tenacity for this surgery but I never wanted to go through chemo again, so that was that! Also, my first cousin Bette did indeed have the BRCA I gene mutation, as did our cousin who died from ovarian cancer.  In case you think that only females can pass this along, my father, aunt and uncle all passed it down to one child within their family nucleus. And the cycle continues, as I have passed it down to both of my boys.  Knowledge is power but also very scary.

Upon hearing that I had the gene mutation, I kept my word and scheduled the double mastectomy for August, between student council camp (where I was a counselor for a week each year) and our trip to take Tim down to UW Madison, where he would be following in his brother=s footsteps.  That gave me two weeks to recover, plenty of time to recuperate before the empty nesters= trip.  John was a little worried that I elected to have the TRAM flap reconstruction surgery at the same time as the removal.  The whole process was expected to take ten to twelve hours with the reconstruction taking the bulk of the time.  The abdominal muscles and fat were to be tunneled up to the breast area, where the plastic surgeon would mold them into new breasts.  I liked the idea that he would use my own tissue but playfully argued that there was more fat in my rear end and he could actually make them bigger than my present day 34 B=s!  That idea got shot down as it must be a more difficult surgery and extremely painful.  

The day before surgery at Mayo Clinic, I met with the plastic surgeon.  He marked up my breasts so much that they looked like cattle going to slaughter.  It was embarrassing when we went out to dinner that night, as my skimpy summer shirt did not cover some of the marker.  It was beginning to look like my body was no longer my own.  The next morning came all too quickly.  John and I were passed from nurse to nurse and it seemed that this show would never get on the road.  Every nurse asked my date of birth, age, etc.  I remember getting a little short with some of them and pointed to my wrist band.  John laughed and said that this was all necessary.  He was right of course, but I was nervous and frustrated.  After a twelve hour surgery and recovery, I was taken to my hospital room at Methodist Hospital.  The only thing I remember from that week was that the tornado siren went off one night which made me feel very frightened.  I was pretty sure that my room was not in the basement; which is the only room in the house that I ever feel safe in that situation.  Also, my plastic surgeon got a big kick out of John using my empty hospital room during surgery to spread his papers out on the floor.  It did not surprise me that he squeezed in a days work while I was on the operating table, as the transition from the sale of the company was taking up much of his time. 

When we finally got home, John had to turn around and head back to Minnesota.  Fortunately, I knew a few nurses who helped empty the drains coming out of my new breasts.  This surgery was so much more painful than the first one and it was clear that I would not be able to accompany Tim to his move in day at Madison.  That is one of the biggest regrets in my life: I wish I would have scheduled the surgery earlier in the summer. When I told this to my plastic surgeon, he replied that I just had four major surgeries and my body would take a much longer time to heal.  It did not make me feel any better. 

After a few months, I was back on the operating table getting my nipples formed from the skin transferred up during the original surgery.  My doctor said it would be a piece of cake but I have since learned there is never a Apiece of cake@ surgery.  Being awake and hearing him call for a scalpel and other such instruments was almost as terrifying as being put under. Several weeks later, I noticed that the healing nipples had scabbed over and fallen off.  At my next appointment, my doctor was extremely disappointed, as that had never happened to him before.  We tried to console him by saying it was alright as they were not important anyway.  He told me to come back in three months to which I replied, AI am good.@  He then said ACome back in six months.@  And we bantered back and forth with me telling him that AThis is bothering you more than it is me.@ We then realized that a plastic surgeon is like an artist, and that he probably felt like he failed to complete his piece of work. I am very satisfied with the results and am happy not having nipples that always stick out. In fact, the only time I wear a bra is usually to exercise or work out.

There were advantages and disadvantages from the reconstruction surgery.  Because muscle and fat were used from my abdomen, my stomach stays pretty flat, which is every postmenopausal woman=s dream.  Before you all rush out for the surgery, remember that all good junk food has to land somewhere and I now have Alove handles@ where they had never been.   The biggest disadvantage is that to keep me from getting a hernia, a mesh was put in the abdominal area.  To this day, when it gets irritated from over exercising, lifting, standing in one place too long or sitting in hard, straight back chairs, my stomach tries to push out of the mesh and becomes very uncomfortable. This will follow me forever but again, is a small price to pay for the security that I have done everything possible to keep the cancer away. It took a long time for me to walk straight up and down and without pain.  My friend Billie saw me out and about one day and thought I was a little old lady walking so hunched over. We had a good chuckle over that one. When I decided to do the ten hour long Tram flap surgery, John questioned this decision.  My reasoning was that at forty-five, I felt like I was given a new lease on life and wanted to wake up each day in literally my own skin.  Would I do it again?  You betcha, as they say up North!  After showing them off to numerous friends, they are always amazed at the outcome.  I hardly notice the difference anymore and am very thankful.  Life was good, until....

 

CHAPTER 3

We had been living in Minnesota for almost two years when it was time for my four and a half year check up at Mayo in January, 2005.  My doctor walked into the room and started asking me several, what I considered strange questions.  How do you feel?  Can you eat a whole sandwich?  Do you get full easily?  I felt great but was frightened nonetheless.  She then informed me that my CA125 number went up to fifty-five.  My doctor did not seem too concerned and decided to repeat the CA125 test in a month or two and to schedule a CAT scan if the levels were still high.  Because the worry gene was passed down to me from my grandmother, I could not sleep or eat for several days.  While talking to my friend Carol about my predicament, she told me I should demand to have a CAT scan test right away.  My doctor set up an appointment, so we drove the three plus hours to Rochester, came home and waited for the results.  When she called to tell me about the three spots by my liver and diaphragm, I was in disbelief.  Remembering that there was always a spot on the liver from all of my previous scans, I held out hope that it was simply a routine showing.  My husband and I were scheduled to go to a work conference in Long Beach, California the next week until Wednesday, so we made an appointment for the following Thursday.  We literally landed at the airport in Minneapolis and drove straight to Rochester.

After a restless night, we met with my doctor.  She showed us the CAT scan results and I was completely devastated.  A compassionate gynecologic surgeon came into my exam room to make the arrangements.  AWhen did we want to have the surgery?@ she asked.  ATomorrow@ I replied.  She was free but needed a liver specialist to assist.  As she scrolled through the names of those particular doctors, I overheard her mention a familiar sounding one.  AWasn=t that the doctor that did my breast surgery?@ I asked out loud to John.  He thought so, too and my doctor confirmed it.  He was also available and agreed to do it the next day.  My surgeon kept asking me if I needed anything and I kept replying with the same words ASurgery tomorrow!@  I think she got a kick out of my persistence to have it Ayesterday@! I just felt the need to get the cancer out of my body as soon as possible.

That same night was the longest and toughest of my life. The motel room was dreary and foreboding.  John could not bring himself to tell his parents so I was given that job.  I also called my sister Jody, who had moved to Arizona and was still at work because of the west coast time difference.  We talked for a few minutes and an hour later she called me back, in tears.  AHow did this happen?@ she questioned.  I could not give her any answers.

Early the next morning, I was unbelievably back on the operating table.  It seemed like I was on the every- other-year-plan for major surgeries and wondered if and when the cycle would stop.  Once again, we really trusted these surgeons and felt like we were in good hands.  When I awoke, John gave me the thumbs up sign.  He said that the tumors were barely attached to the organs and slid right off.  My surgeon did have to cut through the mesh (from the reconstruction surgery) so there was a much bigger scar.  She also carefully turned over the surrounding organs to check for cancer.  I felt good about her diligence.  We decided to have a port implanted above my right breast, which could be used for future chemotherapy. A few days after surgery I was back on the table for another one.  Luckily, I was still drugged up from the main surgery and have no recollection of the port implementation.  If you have had the pleasure of being cut open, you know that the nurses get you out of bed as soon as possible.  A few days later, while I was walking around the corridor, my doctor showed up with one of her students.  We called them Adocklings@.  When she asked him to check my scar or port, he started to look under my gown.  She immediately scolded him saying ANot here! In her room!@  Although, I had long felt that my body was no longer my own (three major surgeries will do that to you,) I was still gratified that my doctor was trying to preserve my dignity.  It made me feel good that she cared.

Dan and Tim came to visit from Madison, Wisconsin for the weekend while I was in the hospital.  When the nurses came into my room and saw them sleeping on what amounted to fancy folding chairs, they laughed.  Only college students can sleep like that!  Whenever I got out of my bed to walk, it seemed that my flimsy robe and gown would pop open.  Although it was the farthest thing on my mind to cover up immediately, I thought that my kids have definitely seen more of their mother than any children should ever see!  At night, they stayed in the motel room with John, and I missed them desperately when they left. I was elated to hear that Jody wanted to come up to Minnesota to help and Carol would fly over the following week.

After I was released from Methodist Hospital, we swung by the Minneapolis airport to collect Jody.  She spent the time taking care of me while John was at work and while he slept at night.  She cooked, massaged my feet and stayed up with me when I had an adverse reaction to a medication and almost lost my cookies!  She also cajoled me into walking around our downstairs family room.  It was February, so our walks outside were limited. I cried the day a friend drove her back to the airport.  Luckily, Carol followed right behind.  She picked up where Jody left off, cooking, cleaning, sitting me on a chair in our freezing garage wrapped in blankets while she cleaned and defrosted my deep freezer.  My job was to tell her what to keep and what to throw away.  Seems like a crazy thing to do after surgery, but it worked for us!    We also walked and giggled the week away. It helped having her with me to ease the gravity of the situation.  One night when we were laughing, John came downstairs to find out what was so funny.  I told him that we were planning my funeral with all the trimmings. To get into the service, my guests would have to wear bright clothing!  Otherwise, they would not be allowed in the building. Everyone would receive a goodie bag complete with Spaghettios, Hot Tamales and lots of chocolate!  There would be tons of fun beach music and decorations to match.  John=s reply was that we truly were Asick!”  It was the kind of thing that kept my spirits up.  Humor was never as important as it was during that stressful time.

A good friend of mine moved to Austin, Minnesota six months before my cancer returned.  When I mentioned how scared I was to stay at Rochester, she suggested that we stay with her the night before my appointments.  What a blessing!  Austin is only forty-five minutes away from Mayo, so in a strange sort of way I actually looked forward to those times.  The distraction of three teens and a seven year old running around was just what I needed to feel a part of the normal world.  LeeAnn would also show up during my chemo treatments and blood transfusions, which was tremendous food for the soul for both John and me.

It was decided that I would receive the same combination of chemo drugs that were used the first go around.  I thought that was kind of strange because that regimen did not kill all of the cancer cells the first time.  Apparently, when you are in shock, some things are left unsaid.  At Abbott Northwestern, the chemo room was one big space with multiple chairs set up for patients. It was similar to a hair salon with IVs instead of hair dryers lying around.  Mayo had a similar set up but there were many private rooms available as well.  My first treatment was in a private room.  I felt claustrophobic and missed the faces of those who were in the same boat as me. One sympathetic nurse told me that I was way too young for this to happen again.  Although she meant well, it did not make me feel any better. My subsequent treatments were in the large rooms and I felt more comfortable from that standpoint. Because it is a three hour drive from Mayo to our hometown, John asked if they would give me another bag of Benadryl in the IV before we went home.  They agreed but I got the notion that was not a normal request.  During one of my treatments, I became extremely tired and woozy (not in a bad way) before the chemo drugs were even started.  We figured out that the nurse thought the two bags of Benadryl were to be given back to back.  When my doctor came in asking me a few questions, I explained that it was difficult to focus and concentrate on what she wanted.  She left in a huff and said that she would come back later.  I am not sure she ever did return!

 We never felt comfortable with my doctor from Mayo.  She had an assistant who saw me before the treatments so it seemed like being her patient was not a priority.  I have a quirky sense of humor that did not mesh with her serious nature.  My CA125 number skyrocketed to two hundred twenty-five after the surgery and I was never given a reason why.  After three treatments, the number barely went down to the 160's and it seemed to me my life was almost over.  My body could no longer tolerate these chemo drugs and I had to be given several units of blood. The serious side affects left off from my previous regimen and I was always nauseous and frightened.

In May, Dan was to graduate with his Masters degree at Madison. After a particularly difficult doctor appointment, John thought we should attend the graduation ceremony that upcoming weekend.  He also suggested we head back to Austin from Rochester to see if LeeAnn would help me pick out a wig, thinking that would make me feel more anonymous  in a crowd.  I agreed, so around 5:00 LeeAnn, her daughter and I drove to the only open salon in Austin that had any available to purchase.  There were two choices.  Time was of the essence so I quickly picked out what we called the ACarol Brady@ wig.  It was not my hair color or style but it was acceptable and  we all had a good laugh over the selection. John went back to work (up north) while I stayed with my friend for two days.  Being alone at night made me nervous as I had not been without John since this nightmare began, which might have explained why I had the weirdest dream each night.  I groggily woke up to the feeling that the gap between the bedroom curtains was closing.  And if they closed completely, I would be dead!  Obviously, it was just a dream, but it will never be forgotten.  Two days later, John drove back to Austin, picked me up and we headed to Madison. I wore the wig all weekend and it is presently in a Rubbermaid tub somewhere in my closet.  Later, I ordered one from a salon in my area that matched my hair color and style.  The only problem with that one was that the bangs got singed from all the campfires I went to during the summer!

One stressful night, while lying in bed, I told John that I did not think I could go through this process anymore.  Upon hearing him softly cry, I leaned over and said AYou know that I will do everything I possibly can@ and he replied AI know you will@.  It was absolutely the lowest point of my life. We decided to try a different type of chemo that might be easier on my body.  The pamphlet that my doctor gave us to read, that incidentally she wrote, gave a warning that the CA125 number might go up after the first treatment.  This chemo was given over a two hour time period and had very few side affects on me.  Food still had a metallic taste but there was little nausea and my hair even started to grow back.  The CA125 number did indeed go up a little and my doctor was concerned.  After we pointed out the pamphlet warning, I continued with two more sessions.  At one August appointment I asked my doctor if we could go on trips in September, October and November.  According to her, it would not be a problem, as she would work the treatments around our schedule.  When I mentioned how great that would be because I thought I would be dead by then, she said that she would give me two years.  Most of my friends thought that was a heartless answer, when told the story.  But it was exactly what I wanted to hear, from the very beginning of this second process- the truth.  In addition, two years seemed like a lifetime to me!

Sometime in the summer, John and I were getting more disillusioned with our doctor.  I left one appointment in tears after she gave us information about two trial studies that we should think about participating in.  AAm I that bad?@ I asked.  Her answer was vague, something about participating in them for other reasons. My husband discovered that his insurance allowed for a second opinion and that our original doctor from Abbott Northwestern was once again on the list of physicians that we could see.  With a copy of our latest CAT scan in tow, we headed to the Twin Cities.  She looked at the scan and commented that with a Aclean@ one (meaning no tumors) she would not recommend the studies.  There are only so many types of chemo available for ovarian cancer patients and she thought I should wait until they were really needed. ASo there is hope!@ I replied.  She somehow did not commit to that but my spirits were lifted and I felt much better.

After that appointment, John suggested that I call our latest surgeon from Mayo, who we really trusted and asked if she knew of any other gynecologic oncologists available at the clinic.  She asked what I was looking for and I remember my reply as if it was yesterday.  ASomeone who will fight for me.@  She said that she had the perfect person in mind and I felt like my life had changed forever.  My new doctor at the Mayo clinic would become my new best friend!

CHAPTER 4

    

From the moment we met my newest doctor to the present day, I have felt as though she has been heaven sent.  I told her why we switched doctors and her reply was that she had kept a patient alive for twelve years.  That was all I needed to know.  We got right to work, any test she wanted me to go through, I happily agreed.  Some were not pleasant, but it was worth the time and effort to see if there was any sign the cancer was still there.  She decided to put me on tamoxifen, as it is a drug that is sometimes used for breast cancer patients. Because breast and ovarian cancer are related to BRCA gene mutations, we could definitely see the connection.  Besides keeping a recurrence away, it is also good for your bones which has that extra added benefit. Although the CAT scans continued to be Aclean@ the all important CA125 number barely budged.  One day, seemingly out of nowhere, the number dropped significantly into the safe zone.  We have come up with an unofficial theory which I call the Amesh theory@.  Remember that last surgery I had in February, where they cut the mesh in my abdomen?  Could all that messing around in there cause the mesh to be irritated and the number to skyrocket?  Did the irritation finally settle down after all of those months, causing the number to fall?  All valid questions, no particular answer. 

Even though we had been in Minnesota for only two years, I had many friends help with my recovery from surgery and during my chemo treatments.  My friend Kris drove fifteen miles from a nearby town just to bring me two cans of Spaghettios, my number one comfort food. Another friend brought over a lasagna dinner every three weeks.  Others brought salads, helped me clean and toted me to the lab for my blood tests.  By August, it was time to thank all of my new helpful friends.  My sister happened to come up for another visit so she helped plan a luncheon at a local castle for all of my new angels.  About fifteen of us ate, laughed and told stories for two hours.  When the bill came, my friends wanted to pay their fair shares.  I insisted that this was John=s treat so the playful arguing ceased.  Unbeknownst to me, Jody confided in Kris that she had been worried about me being up here to fend for myself, since we had only lived here a few years.  After the luncheon, she felt a lot better about my situation.  It was hard to believe how much I had touched those friends= lives in such a short period of time.  Even though my prognosis was not good, I was still grateful and wanted to celebrate their kindness toward John and myself.  I came home with the same fuzzy, warm feeling and realized that there is goodness everywhere! 

                                                           CHAPTER 5

 

Because my CA125 number seems stable, my doctor visits per year have decreased from every three months to every five months.  The week before each appointment I find myself imagining that little twinges, aches and pains mean that the cancer is back.  That feeling will probably never go away.  So, this section of my story is dedicated to my coping mechanisms since that fateful day in 2000.  Also, included are some goals that I set for myself for the future and changes in my appreciation for family and friends.

The biggest way for me to cope with the never ending, rotten feeling days during my treatments was to watch T.V.  In 2000, I discovered The Tour de France with Lance Armstrong.  Each stage of the bicycle race was filled with anticipation as I watched him grind and race through the mountains and flats.  The Summer Olympics also took place that year.  Although I don=t remember much about the different sports or athletes, it was a great distraction for two and a half weeks.  During my chemo treatments in the year 2005, Pope Jean Paul II passed away and I watched almost every minute of the process to select his successor.  I was probably the only one who was happy to see it drag on so long!  Live with Regis and Kelly was a show I looked forward to during the day.  They both made me laugh but I particularly loved Kelly=s sense of humor on motherhood and just being a woman.  The fact that she is a huge ovarian cancer supporter wins big brownie points with me.  You go girl!

The year LeeAnn=s daughter sold magazines for a school fund-raiser, I jumped at the chance to help out and ordered a three month subscription to People Magazine.  Before cancer, I used to buy an issue to get me through an airplane flight since I am a white knuckle flier.  One day while   Dan was visiting, I commented to him and John that my subscription was running out and wondered if renewing it for a year would be a good idea.  It was hilarious how they both answered in loud unison, AYES!!@  It must have kept me from moaning and groaning for a few hours and was well worth the price.

When first diagnosed with ovarian cancer in 2000, one goal I set for myself was to see my son Tim graduate from high school.  When the cancer returned in 2005, I had no particular long range goals.  Just keeping my head above water was all I could focus on.  Dan moved to the Minneapolis area to start his full time job at an accounting firm.  It was a great comfort having him just two short hours away.   That same summer Tim came home for six weeks to help out and to keep my spirits up.  He also volunteered at our local newspaper to resuscitate the sports section as sports journalism was his chosen vocation.  The two ladies who worked there were happy to have him as they had just discussed how neither of them knew much about that topic. We had a running cribbage game going on (it was pretty much one-sided and I am sure you can guess who was the big victor) and swam together daily.  At the same time, Tim had begun dating Caitlin, a wonderful girl he met at Madison.  John and I decided to take him down there for a weekend during this summer stretch.  At dinner one night I asked Caitlin if she was a sports fan.  Her reply was Anot really@ and I thought- this relationship will never last.  It did last as Caitlin and Tim have been married over three years!  She is also a very good athlete participating in triathlons and plays soccer every week.

My next goal was to attend Dan=s wedding.  But that would require him meeting that special person before the dream could become a reality.  The first time I met Sarah I thought that she was wearing a much nicer and trendier outfit than I could ever put together, complete with pointy shoes.  Since Dan never seemed to care about his attire, I again thought this relationship would probably go nowhere.  And once again, I was wrong. Dan and Sarah have been married over two years and my own personal wardrobe has improved greatly! A few months after their wedding, John and I prepared for my next five month check up.  Once I reached that long term goal, I was more nervous than usual to get the results of my CA125 blood test.  Were my sons= marriages the reason that the good Lord was keeping me around? Now that my all important goals were met, would the cancer appear yet again? To me, these were all valid spiritual questions and I realized more than ever that there was a reason that I continued to live.

Although I was raised in the Jewish faith, John was raised a Methodist. We attended the local Methodist church in Wisconsin because I wanted our boys to grow up believing in God. Our town of three thousand had a multitude of churches but no temples, so we had them baptized and confirmed into the Christian faith.  We celebrated both of the holidays giving them a chance to understand each religion.  Their friends were jealous during the Christmas and Chanukah seasons as they received presents during most of December.  While they were in elementary school, I went into their classrooms to put on Chanukah parties and Passover Seders. After the second cancer diagnosis, I felt that John would need a church Afamily@ to help him should my health deteriorate.  It took a few years before John was ready but we now attend a local Lutheran church. We enjoy the services and being in a house of worship gives me a much needed sense of inner peace.

In June of 2010 we asked my developmentally disabled brother, Scott, to move to Minnesota from Arizona.   Although my sisters and mother lived down there, it was time for a change and we thought our small town would be the perfect place.  The downstairs of a house was for rent across the street from us which turned out to be a warm and inviting bachelor pad for my brother.  What can I say about Scottie?!  His disability is borderline and he is a wonderful, endearing man.  Scott drove up to Minnesota in three and a half days by himself.  He had been fiercely independent for the past twenty years but it was clear that he needed help and guidance.  I am not sure he would agree with that statement!  We love having him so close.  He comes over for dinner on Sunday and has lunch with me at least once a week.  I introduced him to the local Y.M.C.A and he uses it frequently, often bumming a ride with me.  He also delivers pizza about three days a week.  Our friends have been wonderful, including him in several social functions and holiday dinners.  We have our frustrating moments and days but for the most part things work out and we are super glad to have him Aback in our lives.@  When I mentioned that to him one day he looked at me without batting an eye and said AI never left!@  That is Scott in a nutshell and an entirely different story!

One thing that I will always appreciate is the wonderful friends that keep entering my life.  About four years ago Deb and Herb moved into our townhouse complex and they have been taking care of me ever since, mostly mentally! Maria is my Y.M.C.A. friend and walking partner who with her compassion toward her own developmentally disabled sister in law convinced me that it was a good thing to have Scott move up to Minnesota. We have spent many hours solving not only my problems but the worlds=, too. I am reminded of the lyrics to a Girl Scout song AMake new friends but keep the old, one is silver and the other gold@ How true! Dan and Tim were an incredible support system.  They called every Sunday night from college and continue that tradition today.  I recently found engaging e-mails that were sent during my latest surgery detailing their day to day lives in Madison.  I was so concerned about my health at the time that I did not realize how terrifying it must have been for them. There is not enough time or space to thank everyone.  But the one person who I am truly grateful for is my dear husband John.  Because of the timing of my health problems, he has never been able to experience his own Amid life crisis@ and has stuck by me through thick and thin.  I would not be here today without him!

It has been seven plus years since my recurrence was diagnosed.  My CA125 number hovers between ten and twenty. I have no idea why it has not come back yet but I never want to be blind sided again.  Therefore, I prepare myself mentally for recurrent news every five months.  That is when my CA125 number is checked at my doctor visit.  My number one philosophy in life is Athat there is always someone better off than you and always someone worse off, in every way, shape and form@.  I feel great and run or walk about eight miles a day.  I follow a pretty strict diet during the week but anything goes on the weekend or vacations; remember that I love my chocolate!  Friends have asked me to speak to other recurrent ovarian cancer patients.  I am happy to share my story as I realize that I have been given a tremendous gift.  Life is unpredictable and I, like other survivors thrive on hope.  Hope that there will someday be a cure and that it will be soon enough to rid all cancer patients of the albatross that is strangling us out of our hopes and dreams.