Monday, September 26, 2011

Waking up in a New Place in a New Year

(This blog pertains to a series of events that took place in January 2004.)
“I am so depressed and it is just the beginning of this newest chapter in my life.” I wrote those words on January 3, 2004, just after Adrienne and I had moved in with my Mother and two brothers.  
Edward stopped by to visit me just after midnight on January 1. He and Brian had gone to see a movie down at Pleasure Island. Then, Brian had gone off to visit a friend. Ed drove by to wish me a Happy New Year and to check in on me. For some reason, I actually slept well for two nights in a row. That made me extremely happy since sleep often eluded me. I could not quite figure out “why” I was sleeping well, but obviously I was pleased. And yet, I had adjustments to make and those were causing great anxiety. 
Adrienne and I were still working out our space -- we were now roommates, sharing the back *guest” bedroom at my Mom’s house. I was busy figuring out where to put all my clothes and “my stuff.” My computer was still not hooked up and fitting a desk into the room would prove challenging, although not impossible. We were all working together to empty out the apartment as well. There was so much “junk” to dispose of and we only had so much time to clear everything out. Between dealing with the “eviction” from our apartment and moving so quickly into another location, I was a physical and emotional “wreck.” 
At this time, Edward and Brian were still at the apartment - although they needed to clean it out and move before week’s end. They were both sleeping on the floor, using a couple of old sleeping bags. Edward was also attempting to plan our “next move. While staying at my Mom’s place initially made sense and seemed quite logical, there were problems with this arrangement. Obviously, the four of us wanted our own place as soon as possible. I knew that staying with my family was only a short-term solution. Yet, for now, I needed to get settled. 
I continued to deal with health insurance issues. My company was not paying out claims, and that stress continued to build up inside me like a volcano about to explode. “I’m worth $200,000, but not alive,” I told Edward. (He quickly reminded me that even bringing this us was NOT an option.) 
On January 5, we turned in the keys to our “luxury” apartment and became “homeless,” especially Ed and Brian. There was no room for them at my Mom’s and so, they were going to spend their nights at an office in Orlando where Ed was working. There was a sofa in the space where Edward did his design work and, the building had a bathroom complete with a shower. So, they were able to make a “temporary” home there. Not the perfect solution but at least, a fix for the time being. 
It became more obvious to me that this “aspect of the cancer journey was not something I was totally prepared for -- being “homeless” and feeling so “poor” was not going to help me “get better and stronger.” If anything, it could hinder my progress. 
Everyone was stressing -- and the tension was so strong that it affected all of us in different ways. Adrienne was in college and needed to remain focused on her studies. Fortunately, she did continue to do well. However, this “situation” took its toll. Even tiny little things were blown out of proportion. Dealing with my Mom’s dementia on a full-time basis was extremely difficult for us. She had moments when “anger” would replace her usual calm disposition. Although she did not mean to “hurt” us with her words or comments -- there were times when she made us “feel unwelcome” or as if we were “imposing” upon her. There were also those times when she enjoyed having us around .. we even had a fun celebration for her 76th birthday. 
I found myself asking questions, not to anyone in particular, but just because I needed to “vent. I realized I was still “sick” and very much in need of physical and emotional healing. Now, I had to watch my family being dragged down by all that had happened. Feeling like a “real loser” was not exactly something to be proud of. Should I become an alcoholic? Seriously, I do not really drink. Should I OD on my drugs? I realized I could not do that either. All I wanted was “normalcy” -- to feel “normal.”  Another question: Would that ever happen?

Friday, September 23, 2011

I Love Surprises! At Least, Most of the Time

(This story is about events that took place in Dec. 2003.)
It was Sunday, Dec. 21, 2003. Brian and Adrienne were about to pull off the most incredible surprise ever. That evening, Brian insisted on driving us to our destination. Edward and I were told we would be heading down to Mercado to see the giant menorah lighting sponsored by Chabad. We figured we would be spending this night of Chanukah in the I-Drive area. I took off  my dirty clothes and put on something a bit more appropriate. Off we went!
However, we passed the cut off on I-4 for the Mercado, so Ed immediately said that we were probably heading to Disney. Brian kept driving. Adrienne remained quiet. And, I was told to call some friends in PA. So, I gave a couple of good friends a call to say hello. Brian apparently wanted to keep me busy so that I would not notice we would ultimately pass right by the Disney exit as well.
Actually, it turns out we were heading to Tampa. And, when we arrived in the downtown area, Brian parked at the Ice Palace. The sign read something about a hockey game, so Ed and I thought we would be watching an ice hockey game, something we enjoyed doing as a family. Then, as we made our way into the elevator to get to our location, Ed tapped me on the shoulder to ask if I had looked at the tickets. “It made no sense,” he said. I asked the woman next to me, “What was she here for?” She said, “A concert!”  I gave out a real shocked response: “I was told it was a hockey game!” The entire elevator was filled and they all began cheering and laughing. I then realized it was “a huge surprise!” Brian and Adrienne were taking us to a live concert performance of Simon & Garfunkel. “I was in shock!” 
“Oh my God!” I shouted! I could not believe it. We had great seats, right off to the side at stage level. We were very, very shocked and happy. Brian and Adrienne were thrilled too, as they saw the happiness and surprise on our faces. The hit song “Bridge Over Troubled Waters” was sang at my high school graduation. In fact, Edward was in the school chorus and had been there singing at my ceremony. (We graduated high school in different years.) I was overwhelmed by the entire evening -- my kids had pulled one amazing surprise! 
The fun continued beyond that night. That same week, we went to an advanced screening of the film "Cold Mountain” and then out to dinner for my brother Michael’s birthday. Brian also took us to see a Disney movie, “Brother Bear.” Chanukah was special that year -- we spent plenty of time as a family doing fun things together. There were plenty of latkes to eat and we even watched the DVD of “Fiddler on the Roof” while dining upon our latkes, donuts and other Chanukah goodies. 
Keep in mind, our financial situation had not changed. We were still struggling on a daily basis. But, for now, I felt “rich” and “I was so happy to have my family all together.” We were sharing the rough times while adding in some surprises. 
“I love Brian and Adrienne so much.” I could not get over how they had surprised me and had shown me how much they cared. They had helped create some special memories. 
We drove around the neighborhood to see the Christmas lights as well. This one house was famous for its decorating. The owners had spent more than $10,000 over the years accumulating their decorations and it costs between $500 - $600 a month for electricity during the holiday season. (Imagine that, I thought. Wish I had that money in my pocket.)
Since it was Christmas Day --- and Chanukah was being celebrated during the same period of time, we did our usual family trip to Amira’s, a popular kosher restaurant. (One of only a few places open that day for business.) I had a corned beef sandwich on challah along with a cup of matzoh ball soup. My “tummy” was satisfied. 
For a short moment in time, I was feeling good. Trust me when I say, this “moment” was fleeting although memorable.  Operation Move was underway. We would soon be living in a completely different location -- actually, we would find ourselves separated from one another. Adrienne and I in one location; Ed and Brian in different places. We would be the “divided” Feldman Dynamic. The year 2004 would be a real “roller coaster” ride for all. 

Monday, September 19, 2011

T-Minus “Too Many” Months & Holding

(This entry pertains to events that occurred in late 2003.) 
My Mom had an appointment with a locally renowned neurologist in early November 2003. She was diagnosed with “acute dementia. Trust me, it was anything but “cute.” Although she was fully tested and we were assured that she was doing well, I sometimes had my personal doubts. As time went on, I honestly wasn’t sure how “mild” her condition was despite test results. There were moments that my concern for her “mental well being” were intense. Was she really only suffering from a very mild form of dementia? I trusted her physician and knew she would be okay, and yet, my endless worrying left me mentally exhausted. I began to think it was me who was “losing it.” Obviously, I only wanted the best for her.
The month of November was filled with doctor visits and tests, lots of tests. I underwent CT scans, a bone scan and MUGA. Fortunately, all tests results were good. No indication of cancer; no problems with my heart. My batting average was 100 percent. I also had a visit with my surgeon, Dr. Michael Kahky, MD and since things were progressing so well, I would not have to return for another year. The same night I saw the doctor, I returned to MD Anderson for a group session, bringing along my friend Nancy and a friend of hers. The three of us enjoyed sharing our stories with the group. 
Thanksgiving came and went -- the four of us visited family in South Florida and celebrated our nephew’s 15th birthday. As usual, I enjoyed getting on the road and having a chance to “get away” from home. 
I found solitude at night as I sat in bed reading my favorite author, Robin Cook. For three nights, I avidly “digested” his novel “Seizure.” I have always been a fan of his novels and “secretly” wished I could write like him. His style of writing has always captivated me. I never felt comfortable with fiction writing”and whenever I have attempted to do any creative pieces I have found it extremely difficult. My brain shuts down. The journalist in me writes in a factual manner and non-fiction writing is within my comfort zone. However, that has never stopped me from reading a good fiction book filled with suspense, intense action and plenty of interesting dialogue. 
I visited my psychiatrist. He feels” that the Paxil along with “my coping skills” is working. When asked about my “greatest concern” I tell him “it’s financial.” There are the creditors constantly calling .. and other money issues. He is pleased, however, to hear that the cancer is under control. He will see me, again, in three months. This is my life. I see various physicians in intervals. Some are now two to three months; others have extended the visits as far out as a year. But, my calendar is still filled with doctor visits and tests. These continue to be my routine. I accept it but that does not mean I am happy about it. I hate the idea that at my age, I am resigned to a schedule that more resembles that of a person 20 plus years my senior. It sucks to be me right now!
Keep in mind the psychiatrist says my “coping skills” are good. Seriously? I’m still depressed. Maybe it’s the drug? Maybe I’m a better actor than I thought? No, he never said I was “better” and that I did not need his help. He merely said that things are “improving” slowly and for the better. I need to remember this when I am feeling like crap and I want to scream and cry!
There are times when I feel that “life is really strange.I wrote in a diary: “I keep moving in the wrong direction -- instead of gaining success and being able to afford nice things and travel, I keep getting further into debt.We are getting food from both a local church and the Jewish Family Service. I am having trouble paying for my occupational therapy as well as my medications. I continue to hurt physically and mentally. 
The state of my life is now affecting everyone around me. I can see the “pain” in my children’s faces. I can hear the “pain” in Ed’s words. My pain is now their pain.  And that, is the most hurtful aspect of this whole “cancer thing.” It destroys everyone in its path! 

Friday, September 16, 2011

Life as a Cancer Survivor -- The Good, The Bad & The In Between

[Reality has hit hard again this week. I lost another friend to cancer. This time, It is Lila who lost her hard fought battle with ovarian cancer on Monday, Sept. 12. My deepest condolences to her family and to all her friends who share in this loss. In her memory, I will continue to fight cancer by raising money for patient services, education, advocacy and research. Lila and her son, Christian, attended the reading of my play “Chemonologues” in March 2010 at Theatre Downtown. I believe that is the last time I saw her. However, she was aware of my various projects and this blog. Her strong passion to “find the cure” was a trait I greatly admired. She will continue to live on through her children and their efforts to make cancer “history.” Lila -- you will be missed but not forgotten.] 

(This blog pertains to events that occurred in the fall of 2003.)
I was undergoing occupational therapy   (Go to:   because of my “trigger finger” and other problems with my hands and fingers, all due to the increasing invasion of arthritis throughout my body. Needless to say, there were times of excruciating pain. I would experience moments where my fingers locked up and I could not bend nor move them at all. As a writer, this was terrifying. Getting them “unlocked” was not an easy task. My fingers did not want to bend correctly and trying to move them in any direction shot fire-like pain through my hands, arms and well into my shoulders. The OT sessions were essential if I was to maintain any normal movement of these joints. 
I learned that a good friend and neighbor, Nancy, was dealing with a recurrence of her breast cancer. After five years, the cancer had returned with a vengeance. The breast cancer had now spread to her colon, lymph nodes and bones. She was placed on both Zometa and Herceptin, the two drugs I was already taking. So, we got together at a local Panera Bread to discuss our treatments and how we felt. Nancy was an extremely strong woman -- she had gone off to college after raising her family and earned a degree in elementary education. She loved teaching kindergarten. Her students were “her babies” and she adored them. The classroom was her haven for reaching these young minds. Nancy was the perfect educator -- dedicated, passionate and willing to deal with all the “bureaucracy” in order to reach out and teach “her children. We enjoyed our get together and agreed we needed more of these moments. 
We received a call from the Roth family telling us they were planning to visit Walt Disney World. So, we made arrangements to meet up with them at a local kosher restaurant where we could meet and spend time together. Both sets of children were happy to see one another. The hours went quickly, but the visit with our cousins was delightful. It was nice to know we had established a relationship that was lasting. 
On October 18, 2003 Edward joined me for Making Strides Against Breast Cancer. The 5K walk began at Lake Eola in downtown Orlando. Brian and Adrienne, who had set off to visit Tampa that weekend, also did the MSABC walk except they did so, in the Tampa area. The walk was difficult for me, but Ed and several others encouraged me to continue. I arrived home exhausted and took a well earned nap.  Go to: 

My typical day, when not visiting a doctor or having a treatment, was usually spent at home. I watched a lot of TV, and had my favorite sitcoms and dramas that I liked to watch. I read and I slept. Exhaustion remained a part of my life, so I dealt with it my allowing my body to sleep whenever I felt the need. I gave in to the fatigue. It was easier than fighting it. 
Brian notified us that The Feldman Dynamic was going to be a part of the 2004 Orlando International Fringe Festival. We would be “back on stage” but this time, in our own home town. That would be in late May 2004, so it left me with plenty of time to deal with any “stage fright” issues that remained unresolved. I wasn’t sure if it would be easier this time -- since (1) I had already done the show in NYC and (2) I would probably know some of the audience members attending. 
I love to “party.”  On November 1, 2003 I attended the 30th birthday bash for my good friend and fellow cancer survivor, Dan O’Leary. His wife, Jennifer, had planned a huge get together in his honor at their lovely Oviedo home. It was great celebrating this milestone with him along with family and friends. You could “feel the lovethroughout the household and it was so wonderfully invigorating. It was moments like this that made “surviving” so special. 

Monday, September 12, 2011

Overcoming a Personal Fear ... I’m Live Onstage in The Feldman Dynamic

(This blog pertains to events that happened during the month of August 2003.)
We are on the road. Our destination: New York City and the NYC Fridge Festival. It is August 7, 2003 and the four of us (AKA: The Feldman Dynamic) are driving north from FL to our home away from home for the next three weeks. We will be staying in Passaic, NJ,   (Visit:     just outside of NYC at the home of Edward’s cousins. We have never meant these relatives before, but their “warm” generosity has already captured our hearts. They have agreed to let us stay at their home for the entire three week run of the Fringe. So, we not only have accommodations in the area but we get to meet new family members and build new relationships. We are all very excited, yet there is also a slight pause for concern. Although we are Jewish, our cousins are Orthodox and maintain an extremely religious home. While there, we will attempt to “follow” as many of the Orthodox rituals as possible -- plus of course, we will be in a strictly kosher home. So, we cannot bring in any food that is not 100 percent kosher per their approval.  Visit: 
Our “new” home away from home is a three story house with a full basement. The Roth family consists of the two parents and eight children, (since then, they have had another child) so having us on the premises was not really “a big concern.” We are shown to our bedrooms -- all on the third floor where we will also have our own bathroom. Each bedroom has two twin beds. I am told that since I have medical issues, I can “break if necessary, some of the rules during the Sabbath. That is, if necessary, I can turn on the light inside my bedroom (with the door closed) if I should need to reach for medications or need to turn on my oxygen concentrator. We are told what areas of the kitchen we can use -- which utensils, plates, etc. We are told we should not cook anything on our own. Actually, while we are there, we are provided with wonderful meals -- so having plenty to eat was never a problem during our visit. And, they did all the clean up - although Adrienne and I did try to assist whenever possible. We were also shown the laundry room, located in the basement. While there, Brian and Adrienne noticed the game area. So, they quickly began playing with all the kids -- building a happy rapport with their younger cousins. 
Since we were there to do our show, we were often heading out the door during unusual hours. Fringe productions are done at different times, evenings and weekends. So we needed to go off to our shows even during times when they would be observing the Sabbath.w (Friday sundown to Saturday sundown.) Again, they were extremely understanding. 
We also spent a quiet Sabbath weekend with them during our stay- - Edward and Brian going off to synagogue with the husband and “older boys” several times during that time period and Adrienne and I remaining home with the “girls” and “younger boys.” (I personally learned a great deal during this time and I often reflect back upon those hours spent reading quietly or talking amongst ourselves while also setting up the table for a meal when they returned from “shul.”    Go to:         While my “usual” life is very different, I think the four of us will agree that we all “learned” a lot over those three weeks and we certainly came to “admire” and “love” our family who -- while different -- were so accommodating and opened their home so graciously. For those three weeks of hospitality, we remain forever grateful to the Roth family.) 
Our first performance at the Kraine Theater in NYC   (Go to:            was on August 9. I would celebrate my 51st birthday on stage - live before an audience. I would also spend my first few moments behind stage feeling “sick to my stomach.I had a “bad case” of stage fright. I could not stop running to the bathroom and my hands were shaking. The fear I felt was overwhelming. I thought I would either have a stroke or heart attack. That’s how scared I was. And yet, I had agreed to do the show. Brian had tried, unsuccessfully, for years to get me to agree to do The Feldman Dynamic. I understood the premise of the show, but my fear of “being on stage” kept me from saying “yes.” Yet now, I was a cancer survivor. I had faced up to a bigger fear and was “winning the battle.” How could “stage fright” be more frightening than dealing with cancer? That was the issue at hand. That was the “reason” I had finally said “yes” to doing this project with the family. I realized that, even though I might be scared, it “would not kill me” to go on stage and perform. I would “live.” Thus, it took a cancer diagnosis for me to overcome my “fear” of being on stage. Weird? Perhaps? But I stand by my story.
We did perform our first show. I survived. Of course, I was so nervous I never ate anything we had brought onstage for dinner that night. I sipped a cup of tea. So, after the show -- after we took our bows and I realized I had “not had a heart attack” I was suddenly “famished.” Adrienne took me across the street from the theater to a small Italian restaurant where we had a delicious meal. Edward and Brian cleared off the stage and took a short walk while the two of use dined. Brian was happy I had done the show -- and wanted me to enjoy my birthday. And, it was a great birthday! 
I was alive... I had overcome a major fear that had gripped my life for a long time... and I was out on the town in NYC with my family - The Feldman Dynamic. Our show would not become a “huge hit” at the Fringe, (although the audiences who joined us, gave us great reviews)  but because it was so “unique” we were interviewed for TV and a brief segment of our show was seen on a Sunday edition of “The Today Show.”  We were also joined by some friends from the Philadelphia/South Jersey area during an early afternoon performance. Leslie and Jeff along with their sons, David and Jason as well as Barbara and Sonny and Rita and Ellis all came to see our show and afterwards, we  grabbed a bite at a nearby Jewish deli. That was a great afternoon, seeing friends and having a chance to catch up with “friendly gossip.” It was certainly a highlight for me. 
We did our shows and attended other Fringe performances during our visit to NYC. We also managed to pack in a few Broadway productions over our three week stay. We not only traveled everyday together for three weeks, The Feldman Dynamic became a much stronger entity. Edward, Brian, Adrienne and I all bonded in a way I never thought possible. As a cancer survivor, this “bond” was precious and life affirming.

Friday, September 9, 2011

Living Life Day to Day

[This is a special dedication in memory of Donielle’s friend, Shelli. After years of fighting, Shelli recently lost her battle with breast cancer. I had the pleasure of meeting Shelli when she joined us several years ago at the Sanford Relay for Life. Donielle always told us that “Shelli was her reason for doing Relay.” Well, now she has a bigger reason to continue. In Shelli’s memory, I know we will light a Luminaria at our next Relay. Plus, I know she will continue to “live on” in Donielle’s commitment to the American Cancer Society’s Relay for Life and Making Strides Against Breast Cancer. Donations can be made in Shelli’s memory to ACS. In fact, making a contribution in memory of a loved one or friend is a wonderful way to make a difference. I am a team member of “Ellen’s Angels” -- I’m participating in the 2011 MSABC event on Saturday, Oct. 29 at Lake Eola in downtown Orlando. You can make a secure online donation by going to:
Thanks for your kindness. And thanks for remembering all those who have lost their battles to breast cancer and all other cancers.]
(This blog pertains to events that took place late May to late June 2003.) 
Living life and doing things in small increments is the only way I can handle anything at this point. It’s the only way anything makes sense to me. 
My Mom underwent a surgical procedure on May 31, 2003 to have a feeding tube inserted. Her thyroid cancer required intense radiation treatments that were now causing problems with her ability to swallow solid food. So, she had the surgery done and we (my brothers and I) learned how to care for her and how to do the tube feedings. I remained exhausted; it seemed that no matter how much sleep I got, I was still tired all the time. In early June, MD Anderson Cancer Center Orlando celebrated Cancer Survivor’s Week. I attended a lovely high tea held on the 5th floor, also known as the chemo floor.  A simple activity like this was the highlight of my week. 
Edward and I celebrated our 27th wedding anniversary on June 6 by going out to dinner at one of our favorite local restaurants. The steak dinner I ate made me happy, too. Going out to eat has always been something we all enjoyed doing as a family. This particular week, we also ventured out to a Chinese restaurant we all liked. Even when I had difficulties eating (whether it was treatment related or not) I still enjoyed going out to a restaurant -- ordering a meal, being served and then, having someone else clean up afterwards. From the time our children were very young, we had introduced them to a wide variety of foods and fine dining. They were comfortable in any restaurant and were never afraid to try new foods. Now that Brian and Adrienne were young adults, we could head out to any restaurant for a wonderful meal. A family event!
I received terrible news from one of my former Disney reservation center cast members.  My friend, Terry Ouelette, had lost her battle to lung cancer on June 11. I cried as I recalled how our friendship had grown, especially since Terry was there to help me through my first chemotherapy session. (See Blog #10 - Life Saving Chemo Treatments Begin, June 24, 2011) I immediately thought of her husband, Don, and other family members. I knew how much she would be missed by everyone who knew her. The loss I felt was deep and painful .. I had now lost a fellow cancer survivor. I began looking for answers, yet I also understood that “sometimes” there are “no answers.” Through my tears I continued to search for the “why.There is a wonderful book I recommend at times such as this -- When Bad Things Happen to Good People” by Harold S. Kushner. I reached for my copy and began reading. Although I remained “upset” and “depressed” over the next several days -- and since her funeral would be held out of state, I held my own personal remembrance of Terry. I vowed she would “never be forgotten.” Every year since her death, I have lit a Luminaria in her memory at Relay for Life. With every candle, I say a quiet prayer that someday, soon -- there will be a cure for lung cancer. A cure for every cancer. And I continue to remember her and all she did to make my life as a cancer survivor easier.
Besides the loss of my friend, I had to deal with other issues including our upcoming trip to New York City for the Fringe Festival. In mid-June, Brian arranged a photo session with a professional photographer. The four of us gathered at his home studio for a morning shoot. We were there for about an hour, posing for the photo that would be our official Fringe poster. Trust me -- it was both frustrating and hilarious. Getting the four of us to look good for a single photo was a challenge, but eventually, we accomplished the goal. Edward would take the finished photo and create the poster, a project directed by Brian. These posters would be used to promote our show, so once we arrived in NYC, we would “plaster” these posters in every location possible. The “big event” was quickly approaching. Anticipation was running high throughout the household. The Feldman Dynamic would soon make its debut.

Monday, September 5, 2011

Packing Up & Leaving the Job - Another Loss From Cancer

(This segment is about events that took place in May 2003.)
I received a call on May 1, 2003 from a woman who said she was the manager of the Disney Reservation Center’s Guest Services department. I did not recognize the name. She said I would be done working as of May 9. I was to stop by the reservation center that day and hand in any Disney property I still had. This was, she told me, the rule established by the federal Medical Leave of Absence program. (FMLA) I had already been given a year to return and since I had not, it was time to terminate my employment.  Visit
I realized I would not have the final say as to when I was leaving, and even though I knew I was not ready to return, this call did take me my surprise. I would now face issues I was not prepared to deal with, such as insurance. I had company issued health insurance during the past year, but now, I would have to go with COBRA or some other option. I would need to find alternatives -- and since my brain was not functioning right, this would not be easy. Edward immediately “freaked out” when he heard the news. Actually, we were “both freaked outby it, but I did need him to be strong enough to get us through. This affected my entire family, so a feeling of insecurity was normal. 
At this time, my Mom was undergoing treatments for thyroid cancer. I knew she would be fine, but it was going to be a tough month. My brothers and I had to learn how to help her with a feeding tube, since at some point, she would be unable to eat due to the radiation treatments. So, on top of my own personal situation, I was also dealing with my Mom’s needs. My “frantic” search for “normal” was quickly vanishing. 
On top of everything we were already dealing with, Brian received a letter that would change our summer and our lives. He had applied to the New York City Fringe Festival and our show, The Feldman Dynamic, had been accepted. The performance was a “dream” project created by Brian and was about to become reality. I had been the “hold out” for many years, not wanting to do the project due to my fear of being on stage and performing before a live audience. Adrienne was thrilled by the news; not only did she love being on stage but she would now be going to NYC. Edward, who did not have a problem performing (he did a high school musical), was more concerned by the financial aspects of going on the trip and losing time at work. Brian was ecstatic! The Feldman Dynamic would have its world premiere in NYC in late August. Brian immediately got to work on all the details. There was a lot to do and little time to get it all done. For me, it was just another “item” on my “To Do” list. In some ways, I was very excited. I could not wait to “travel” and “get out of Florida.” I was definitely looking forward to seeing something different and a change of scenery was “just what the doctor ordered.” The next few months would be busy with preparation for our adventure. I also needed to work on my “fear of being on stage. Go to
Adrienne brought in the month of May by earning “A’s” in all her theater classes, an “A” in English, and a “B” in math. She loved being at Seminole Community College and was proud to be in its theater program. I was extremely proud of her achievements. Earning the “A” in English was a real testimony to the effort Adrienne put forth each semester. I needed happy moments like this -- a reason to celebrate.
On May 8, I had my annual mammogram. The radiologist gave me the report immediately... “All is fine.” Another great reason to celebrate. So, in honor of this great report, in honor of Adrienne’s terrific grades, and to take advantage of my final day as a Disney cast member -- I took Edward to lunch at EPCOT’s famed Italian restaurant, Alfredo's. I had a 50 percent discount that was still available, so we took full advantage of this treat. The two of us had a delicious leisurely lunch and then, took a stroll around the park. 
May 9 -- I turned in my ID badge and headset. I spoke briefly to a total stranger. I signed some paperwork, being assured that if I ever wanted to return to Disney, I could do so. I was handed a box, filled with all my personal stuff. (A coworker had gone through my desk and belonging, packing up everything for me.) I kept wondering where all my friends were? Where were all the managers I knew?  Why was a stranger... this unknown manager, doing my farewell exit interview? That bothered me more than the actual act of leaving. I could not comprehend why, after eight years of dedicated service, I was not sitting next to a person I knew well -- someone with whom I had worked side by side. Sitting across from this “unknown” manager did not make me feel “all warm and fuzzy.” I was upset. My final moments as a Disney cast member were very sterile and unfriendly. My “good feelings” about being at DRC were quickly fading. I wanted out -- immediately. I felt betrayed by the place I had called my “second home” for years. And why? 
As I left, I walked slowly down the hallway towards the lobby.  I recalled “briefly” all the yeas I had spent in this building. The good times as well as the bad times. I would miss the people -- I had many friends at the center. They were good men and women; they were all hard-working people with whom I had shared many experiences. When I left WDW, I had put in eight years. Had it been 10 years, I would have qualified for a permanent WDW main gate pass. That pass would have given me a lifetime of entries into the WDW parks. Since I missed it by two years (thanks to the cancer) I missed out on this great deal. Thus, the cancer not only took away my chances at having a lifetime of trips into the WDW parks, it took away my job. My benefits. (Health care. WDW cast member perks including admission to theme parks, water parks. Hotel stay discounts. Restaurant and store discounts. And much more!) 
Packing up to leave DRC and my incredible benefits -- Too priceless to calculate.  Another reason why “cancer sucks!” 

Friday, September 2, 2011

Going Out of My Mind -- Maintaining the Status Quo

(This entry relates to a series of events that took place in the spring of 2003.)
I’m planning a Passover Seder. However, when my family reads the story of Passover and The Four Questions are asked, my version will go something like this: “Why is this night of Passover different from all other nights?” In my household, I have to deal with “I don’t eat carbohydrates,” (Edward) and “I’m a vegan.” (Brian) During this holiday, where “eggs” are king of the dietary chart and “matzoh” the only “bread” allowed, I need to come up with a menu that meets everyone’s food preferences. Try making anything at Passover without “eggs” -- trust me, it’s not easy. For that matter, try creating dishes that don’t include matzoh or any variation of it. Oy! It’s not enough that I’m still coping with fatigue or that I’m still dealing with physical pain somewhere in the pain scale level of 7 or higher -- I’m attempting to create a Passover Seder, a family affair.  Visit  
Okay -- I’m not making a feast for hundreds. I’m only cooking enough for my immediate family -- Ed, Brian, Adrienne and myself, so it’s not impossible. But, given my “current” brain capacity for dealing with anything out of the ordinary, (Nothing about a cancer journey is ordinary.) I am super stressed. Cooking for my Seder in 2003 was more than challenging. It would be a “miracle” all its own. (Forget all the miracles we would read about that night.)
I don’t know how I did it, yet somehow, I managed to pull off a dinner that satisfied everyone from the “I don’t eat carbs” to “the vegan.” I created my own “tiny miracle” that night of Passover. I was happy with my creations and no one left the table hungry. Adrienne, by the way, was easy to please. She was more than eager to help me out in the kitchen, even making the delicious matzoh balls for our soup that night. (I never did make vegan matzoh balls. But, I managed to cook up a vegetable soup stocked with lots of goodies and plenty of other nutritious foods. Brian enjoyed his meal. And, he helped lead the Seder as well.)
Besides trying to make the holiday special, I was still coping with lots of “other stuff” that certainly made my life more complex. There was still the “unresolved” issue of my returning to work at the Disney Reservation Center. I wrote the following down in a diary: “I can’t talk for eight hours. I can’t type for eight hours. I can’t walk for eight hours. I can’t sit for eight hours. What the “fuck” kind of work can I do?” Obviously, based on my choice of language, it can safely be determined that I was not “coping” well at all with this important decision. Then I wrote: “My hands will be in splints. I’m on heavy drugs. But I’m supposed to return to work?” I continued with: “They’ll be thrilled and shocked to see me. I forget everything about the job. Maybe, I can sort stuff for a couple of hours, do some training for a couple of hours.” 
In mid-April 2003 I received wonderful news from Dr. Nikita Shah, my oncologist. My most recent bone scan showed no signs of cancer. My prayers had been answered. “Now, I was on the road to maintaining the status quo.”  My treatments with Herceptin and Zometa would continue and I would also continue taking Femara everyday. I added a new drug to the list -- Paxil. My depression had reached a new level. I was getting better physically while my mental health began to deteriorate.   Go to
I was seeing two mental health counselors, a psychiatrist and was still attending group sessions. Talk about intervention! I was heading downward faster than I could even imagine. I realized that “There was no way I could have undergone what I did a year ago and not be changed forever by it. That’s what I need to understand. I’m not the same person.  I have changed. And that’s okay. I need to get to know the new me.” 
“Just who am I?” I wondered. “What are my goals? My dreams? My plans? And when will my life come together? When will I be whole again? 

[I welcome comments. So, please take a moment and send me your thoughts about Marilyn's Byline and what I've been sharing. Keep in mind, this blog is a abbreviated version of my cancer story. Thus, I cannot reveal every aspect of my journey. That will be told in my book, "High Maintenance ... Surviving Cancer at All Costs." However, if you're a cancer survivor or caregiver, I would love to hear from you. Let me know how you're doing. Can you identify with my experience? Down the road, once I get my blog better organized, I hope to have a section where readers can share their own stories. Plus, I hope to welcome "guest" writers to my blog. Thanks for your support of Marilyn's Byline. It means a lot to me. Pink hugs to all!]