Monday, August 29, 2011

Pushing Myself -- Trying to Make Sense of Time and Life

(Note: This particular blog shares my cancer experience during the spring of 2003.)

I have always known that “time heals.” However, when you have metastasized cancer, time has a way of “stopping” or “moving very slowly.”  It is now early April 2003, and I am still recovering from my major lung surgery (May 2002) and from my bouts with arthritis. Those “bouts” are a now a “daily battle” -- my body does not want to work right anymore. My fingers are swollen and there are bumps that have formed at every joint. I have trouble writing with a pen or typing on the keyboard. So, writing anything is a major challenge. That frustrates me, which furthers causes emotional stress. The emotional turmoil in my life is a constant roller coaster ride; if lucky, an occasional merry go round. (I hate both rides!) 
The American Cancer Society’s Relay for Life 2003 took place at the University of Central Florida. My team, Cancer Historians, raised $1,500. Many of my team members were from the Disney Reservation Center. They came on board to support me and in the process, ended up helping a greater cause. We had a wonderful time decorating our site and selling hot dogs and hamburgers all night long -- we had two tiny tabletop BBQ grills going. My brother, Gary, along with our Mom, made sure the process ran smoothly.  I honored my cousin Sharon’s memory during the Luminaria Ceremony, standing quietly over the bag with her name. Later that night, I left for several hours to go home and get some sleep, about four hours total. I came back early the next morning, still exhausted but wanting to make sure that things were okay and that our team would still be there for the final ceremony.  RFL that year was special for many reasons -- and although I would remain physically worn out for days afterwards, it was worth it.
With Relay over, my busy life” comes to an end and now, I’m spending more time feeling depressed. I keep noting how “depressed” I am. I an unable to function on any level. I wake up -- sometimes I eat and sometimes I don’t. I sit around feeling lonely and upset. I try reading a novel to escape the moment, but that only works for a short time. I sleep a lot. I remain very confused about my entire life and the direction I am going. I feel like a real “loser” at times. I have no money to do anything -- disability payments do not go very far. I remain “depressed” about money issues and that certainly does not help my overall emotional state of mind. 
I continue to go to the breast cancer support group at MD Anderson, and although I also see a mental health counselor as well, my “ups and downs” keep me in flux. Nothing is going right, at least, that’s how I see life. I’m collecting bills that we cannot pay. The monthly outflow of money far exceeds the incoming. I slowly begin to “withdraw” from reality. While Edward keeps talking about our bills and the shortages we are encountering, I go further into my depression. I “freak out” when money issues are mentioned. I “freak out” when anything I do not want to acknowledge is brought up. Right now, time is not “healing me. I get “pissed off” easily and begin calling Edward by some not so nice names. Talk about marital discord. Trust me when I say that these times were rough and surviving took incredible strength. I wasn’t so sure I could survive. 
Health wise, tests showed my cancer was in a maintaining status. So, that was good. I had accomplished a huge goal. I was remaining cancer free. But, my pain levels (using the established pain scale of 1 - 10) continued to remain high. I often dealt with a daily level of 7 or higher, depending upon how active I was. I continued to take a multitude of drugs everyday. I kept a daily log of my medications, just to ensure that I took my doses at the right time and if needed, used my break through pain medication as prescribed. I was on heavy narcotics, so I did not take this process lightly. There was too much at stake. The news constantly reminded me of individuals overdosing on prescription medications. I was using these same drugs -- so with my high level of depression, I knew I was in a “high risk” category. And that further terrified me. 
I knew someone who used to say: “Life sucks and then you die!”  I often wondered why these words were spoken. I wanted to live and I was fighting for my life. Plus, I never sat around pondering death. Yet, in my deepest, darkest moments -- when my tears were overflowing and my pain levels reached the highest levels possible, that emotional roller coaster reached peak speeds. I was in the “ride of a lifetime” -- and those crazy six words actually began to make sense. 

Friday, August 26, 2011

Finding Reasons to Celebrate ... Cancer Status - Maintaining!

(This article shares portions of my cancer journey from early 2003.)
Happy New Year! It’s January 1, 2003 and like most individuals, I’m writing down a New Year’s resolution. For me, the top priority is finding ways “to get better and stronger” and thus, becoming healthier. 
I start this new year at home. The weather on New Year’s Eve was less than pleasant.  It rained; actually, it poured! A huge thunderstorm rolled through the Orlando area that night and the massive storm made traveling dangerous. I was concerned about Adrienne and her friends, who had gone off to enjoy a party at a local bowling alley.  I sat at home with Edward and Brian, watching TV and munching snacks. We spent the evening watching funny movies -- so that was a good way to spend an otherwise gloomy night. I had great expectations for this new year. Not only did I want to improve my physical and mental health, I was hoping for prosperity. A financial “windfall” would certainly make life easier.  A segment of my New Year’s Eve and “day” were spent pondering my future ... and how I wanted 2003 to be a great year.
Well, on the morning of January 1, I woke up late, around 12:45 p.m. After eating breakfast, I tried to deal with the stiffness in my knees. I dealt with this by talking a walk with Ed. But, no sooner did we get outside and begin our stroll, I realized I was having difficulty breathing. I was short of breath and dealing with that “damn” pain in my chest. The “rock  like pain I felt 24/7 was sharp now ... at times, it felt like a knife cutting into me. I began crying. All I wanted was to feel good - no pain. Instead, I had to head back upstairs. I was too exhausted to continue walking.
During the first few weeks of 2003, I did get out and even traveled to the West Coast of Florida to visit relatives. I also was able to enjoy dinner at some nearby restaurants. A big moment for me was starting a mosaic art class at the local community college. This weekly night class became a favorite of mine. I found a creative outlet, other than writing. Since I found writing so difficult (a major case of writer’s block) this artistic class was perfect for me. During these classes, I was able to complete two projects. My passion for mosaic art was thriving. And, I discovered (while talking with my mental health counselor) that this type of activity was healthy. 
At last, I had found something for which I had a passion. I had begun to think I had lost all desire to do anything, other than my usual routine. The art classes were fun and challenging. I learned a lot during those weeks not only about mosaic art, but about me. I discovered I had a “knack” for doing this type of art. I also realized that I had re-discovered a “childlike” interest in something ... there was this sudden interest in being silly and having fun making a mess. I could throw a piece of china (a plate or other item) onto the floor of the class, and then break it up with a hammer. The “thrill” of this physical act (that otherwise would be considered inappropriate behavior) was such a “high.”   I pounded on the plate (tossed inside of a newspaper on the floor) until I had the right size pieces for my “masterpiece.” (If you’ve never tried mosaic art -- I highly recommend it.) My instructor informed us that unlike other types of art, where you may need to have some innate ability to do the work, with mosaic art, anyone can do it. There is no prerequisite skills necessary. 
During these same weeks, my pain specialist reviewed my growing list of medications. Dr. Kollas and his nurse, Susan, spoke with me about my osteoarthritis. I was given a script for a higher dose of medicine, hopefully, this would do the trick and ease the pain. I was also having difficulties with my insurance company. They were refusing to allow certain medications, stating they were not formulary drugs. My request for renewals, etc. were being denied. Ellen, Dr. Shah’s nurse, had her hand’s full while dealing with this “mess.” “I hate insurance companies,” I said to Ellen during one of our conversations. How in the world was I supposed to get better if I could not get the medications I needed? 
However, despite the insurance problems and my never-ending levels of pain, I did get some wonderful news on January 11, 2003.  My medical oncologist, Dr. Shah, said that my CT Scan (done on January 10) was clear, no signs of cancer. My recent bone scan was also good, showing much smaller areas of cancer cells. “We are maintaining,” Dr. Shah said with a smile. “Remission is not a word usually used with breast cancer,” she said. “We would be continuing treatments as already indicated.” For me, this meant I would continue to have my Herceptin and Zometa treatments and I would continue taking my daily Femara. My continuing saga with cancer had entered into a new level -- “maintaining” became my favorite word. 

Monday, August 22, 2011

“A” for Arthritis -- Learning the Alphabet of Disease Progression

(Note: This "blog" is about events that took place in the fall of 2002. )

Shortly after the realization that my breast cancer had spread to the bones, I began feeling a different type of pain. This particular “pain” affected my knees and hands, especially my fingers... the knuckles looked out of shape. I was only in my early 50s, so I really had no idea what was happening. I made a doctor’s appointment.
Turns out, cancer (or rather the treatments for cancer) does cause a variety of side effects.  I was now dealing with osteoarthritis.   Go to:            I recall sitting in the doctor’s office asking questions. I asked, “Isn’t arthritis a progressive type of medical condition?” I had always thought that arthritis could start to flair up in one’s body at anytime (perhaps late 50s) and then, over the years, would gradually affect various joints, etc. But, I was a cancer patient.... so, of course, I “hit the jackpot!” My arthritic condition was almost instantaneous. How lucky for me! 
I woke up one morning and could barely make it down the steps from the second floor apartment. My knees locked up and I could hardly bend the joints. Plus, my fingers were all stiff and unbend able. Each morning, I would need to slowly release each finger and I would try to get them to move -- it was a slow, painful process. The stiffness meant my fingers felt like granite. They would not bend or move in any position until I could get them unlocked. This sometimes took minutes of massaging my fingers and hands or placing my hands and fingers under warm water until the stiffness went away. There were times I also dealt with “trigger finger-- another problem I developed. This later ailment terrified me, especially my first episode when I had no idea what was happening or why.  Go to:
Appointments with Dr. Chad Kollas, MD, my “pain doc” allowed me to discuss the various “aches and pains” I was now experiencing on a daily basis. Not only was I on heavy narcotics for my “other” pains, but now I was placed on medication specifically for arthritis. Sarcastically, I was overjoyed to have to add another “pill” to my growing collection. However, the medication (once taken consistently) did begin to work. 
Around this time, I visited the Disney Reservation Center to pick up copies of my cast newspaper and other items that were compiled for me by fellow team members. I would stop and say “hi” to my friends and let them know how I was progressing. This latest “challenge” took them all by surprise. I walked slowly through the building, hugging my coworkers and bringing them up-to-date on my treatment plan. I was given a wonderful surprise -- an envelope with tickets for "Mickey’s Not So Scary Halloween Party.”   Go to:   Having never attended the event before, I immediately knew I wanted to go. And, I stopped by the desk of a friend -- asked them to make me a resort reservation (using my cast discount) and called Adrienne with the great news. She and I would be attending the Halloween event and staying that night at Disney’s All-Star Music Resort. She was thrilled to get the call.
We arrived at the resort and checked in. That evening, following a bite at the resort’s food court, we were off by bus to the Magic Kingdom. We were all smiles as we boarded the bus with the tiny little “princesses,” “ghosts” and other costumed children. Even adults got into the spirit of the holiday and were dressed in costumes. It would be a fun night for all.
Adrienne helped me into a wheelchair once we reached the entrance of the park. We had our “goodie bags” all ready to collect candy (park workers handed out candy at designated locations) as we made our way to the Haunted Mansion, the most popular attraction that night. Afterwards, we found a great spot to watch the special fireworks and the Mickey’s Not So Scary Halloween parade. We laughed. We smiled. We had a wonderful evening. For a short time, I was relatively pain free. 
These rare moments of “fun” were extremely important to me. I wanted to spend plenty of “quality” time with my daughter (with all members of my family) and I knew that if I could find a diversion from my daily routine (even for a short time) I could enjoy some additional hours where I could forget my pain -- both physical and mental. As my physical pain or challenges increased, so did the emotional roller coaster I was riding. It was rapidly heading out of control! 

Friday, August 19, 2011

The Bones? ... My Cancer Journey Takes Another Detour

(Note: I have had readers question if I’ll be discussing certain topics within my blog. Or, if I will be sharing a story from the past, something my friends or family may be familiar with. The answer is “yes” and “no.” I intend to cover various topics as part of Marilyn’s Byline. However, since I am working on a book, many of the experiences I have had may be better suited for my “book” since I can devote more space to the subject and get into greater detail. My blog is a short version of my story -- bits and pieces of the journey that I will share every Monday and Friday with you. But, to truly know my story, you will have to wait until I publish -- “High Maintenance” - Surviving Cancer at All Costs -- a manuscript under “construction” at this time. Thanks for sharing your comments. Your commitment to reading my blog is greatly appreciated.)
The calendar now indicates that it’s early October 2002.  Scans show that my lungs are now totally clear of any cancer -- that’s the good news. The “not-so” good news ... I received a call from Ellen, my oncology nurse. There has been some “disease progression” she says during our brief conversation. “The cancer has spread to the bone.” 
After getting off the phone, I “freaked out!” I am now experiencing another moment of “fear” and I keep trying to tell myself that “I will be okay. I am getting better and stronger everyday.” Per Ellen, I will meet with Dr. Shah to review my new treatment plan.  I will continue with the Herceptin, but will go off the Taxotere, which is the actual chemo drug I was taking all summer long. Now, Dr. Shah is adding a new drug to my plan, Zometa,  which will be given to me via my port. This drug, I’m told, acts like a “varnish” and “coats the bones.” It also may help me fight off osteoporosis, which as a “side effect” is a good one, since there is an inherited risk of this within my family.  Another medication, a daily pill -- Femara -- will be added to my regimen. It is an anti-estrogen. So, now I will be going for treatments every three weeks, instead of weekly. My sessions will be on Fridays. In some ways, I am grateful to have more time to myself and less time spent at the hospital. (A small thing to be grateful for!)

The cancer, I would learn, has developed within my hip and spine. If I have any pain in those areas, I am to let Dr. Shah know immediately. Unlike chemo, Herceptin is known as a “monoclonal antibody therapy.” In simple terms, it means that it is a directly targeted drug treatment ... it only attacks the HER2 positive cells within the body. Chemo attacks everything in its pathway - both good and bad, so that’s why there are so many challenging side effects. While Herceptin and Zometa have their own “side effects” -- it is definitely going to be much different now. The “typical” chemo problems will begin to go away. (At least, some will disappear. I will later learn that some side effects have not even developed yet. There are problems I may experience months or years later as a result of my Taxotere treatment. I take the liberty of being “sarcastic” here for a moment when I say -- “Welcome to the world of side effects!” )
Procrit treatments will continue per Ellen. In fact, I will be getting a slightly higher dose at my next visit. I remain tired -- fatigue does continue to plague me. At a recent trip to Disney’s EPCOT Center for its annual Food & Wine Festival, I manage to do some walking although I keep a wheelchair with me at all times. My appetite has begun to improve as well, so I take advantage of being able to eat more and enjoy a delicious meal at a Disney restaurant. Small steps in a more positive direction -- I try to enjoy these rare moments where my energy explodes to an almost normal level. 
October quickly turns into November and I’m now more comfortable with my new schedule. Just as I begin to feel like I can handle this newest “setback” I get the most horrific news. My cousin, Sharon Greenstein Iwanczuk, had lost her year-long battle with brain cancer. Sharon, who was more like a sister, fought her cancer with every ounce of strength she had within. Surgery. Chemo. Radiation. She had done it all, and yet, she was now gone. She left behind a loving husband and parents along with an array of devoted family members who were now trying to deal with this loss. To me, it made no sense at all. Why Sharon? She was a talented artist -- she loved and cared for animals -- she was a loving and giving person ... she would be missed by many.
A moment of wanting to shout out “Cancer Sucks”  --- I did run around screaming this. Then, I sat down and wrote out a story I recalled from when we were “kids” -- something that could be read at her funeral service. I would be unable to attend due to my own health and treatment schedule. But, the day of the service, I sat -- alone in my room, crying my heart out. Cancer had taken another precious life. I resolved to remember Sharon every year at Relay during the Luminaria Ceremony. I also resolved to raise more money for research ... something I knew would ultimately make a positive difference. Meanwhile, I simply sat and cried. Tears were flowing like a river... my heart was torn into tiny pieces. I already missed her so much. Cancer had taken another person I loved. The pain I felt now was not the usual. I cried out again, in anguished pain. Softly I said: I will miss you Sharon!” 

Monday, August 15, 2011

A Real Vacation... Casting for Recovery Takes Me Fly-Fishing!

I’m officially on vacation, something I’ve been dreaming of for so long. It’s September 21, 2002. I have been selected to attend a two-day fly fishing retreat sponsored by a non-profit organization, Casting for Recovery. This organization sponsors trips for women who have had breast cancer, and my oncologist, Dr. Nikita Shah, M.D., signed the paperwork indicating I could attend, if selected. And, I was! (The letter indicating I was chosen for the fall 2002 program came while I was in the hospital in May undergoing lung surgery. I wasn’t sure if I would be able to go, but my doctor had full confidence I would be okay to participate.)  Go to:
I left Central Florida along with my Mom and two brothers, Gary and Michael. We drove off in a rented, brand-new 2003 Chevy Tahoe. A great adventure awaited me at my destination - Sky Top Lodge in the Pocono Mountains of PA. I was thrilled by the chance to get away and the possibility of meeting new people, other breast cancer survivors, also interested me.  Go to:
Despite the continuous pain I dealt with along with the never-ending fatigue, this trip was a dream come true. I needed change in my life and getting away from my everyday routine was, “just what the doctor ordered.” My life was too predictable at this point -- I needed a diversion. 
While I would be attending the two-day seminar, my family would lodge nearby and enjoy the local sites. Even though my Mom had lived all her life in Philadelphia, she had never traveled to the Pocono Mountain region of the state. So, she was also ready to enjoy a new adventure. At this time, my Mom was having slight memory problems. She was diagnosed with mild dementia. This occasionally caused some problems, with her forgetting that she had already mentioned something and repeating stuff over again, or she would get easily agitated and her temper would explode. Fortunately, these moments were manageable. She had started medication and now, on this trip, she was very excited and like me, looking forward to getting away. While in the area, we would also visit family.
At Sky Top Lodge, the accommodations were first-class. I was placed in a room with another Florida breast cancer survivor. She had flown into PA from her Brevard County, FL home. Our room had two twin beds and the view from the windows provided us a sneak peak at the beautifully, landscaped gardens that surrounded the building. Meals were served in a large dining hall, and we had our pick from the specialty menu. Our dinners on both nights were gourmet, with an emphasis on freshness, presentation and incredible delights for our taste buds. Each course was amazing, and we had to make sure we saved enough room for dessert. Tough choices -- which dessert to choose!
At night, after a long day of fly-fishing classes and casting opportunities in the nearby lake, we spent hours talking. Each survivor was encouraged to share her story or experience with cancer. Besides plenty of tears there was an equal amount of laughter within the group. Bonding was quick. 
The fly-fishing component of our excursion was also first-rate with each member of the group being outfitted with pro equipment. Mornings were spent in classes learning the elements of fly-fishing (I had never gone fishing in my entire life, so this was a brand new experience for me.) Late morning and early afternoon was spent at the lake where we attempted to cast off or show off what we had learned in class. One day, due to high winds, we practiced our casting inside a skating rink -- obviously not in use during this time of the year. 
There was one major downfall for me. Due to my ongoing medical problems (breathing challenges and high pain levels), I was now using a rolling walker to get me from place to place. I could sit down (using the HUGO)   Go to:  if I got tired and needed a break. However, it also meant I could not walk all the way from our lodging accommodations to the lakefront classroom. I had to wait for the complimentary van that transported me and my HUGO to the program’s location. Also, I was too exhausted to walk around the lake -- something I envisioned doing but could only watch others enjoy. Plus, due to my weakened condition, I really could not keep up with the fly-fishing program. I was simply too tired, and spent most of the afternoons watching the others while chatting with an instructor who sat by my side. I felt more like a spectator than an actual participant. 
However, on our final morning, I did get to try my fly-fishing skills. It was arranged for me to have an individual instructor. That way, I would not be holding anyone else back from the experience. We set out to our location, along the scenic waterway, and sat down to enjoy the peace and quiet surrounding us. I was given assistance with my casting, although I did do the actual work myself. And, I sat patiently waiting for a fish to take a bite. It was a catch and release program, but all of us wanted that special photo that would be taken if we caught a fish that morning.  I waited. And, I waited. There was a starring contest between me and this little fish for quite some time. The fish looked at the hook and bait, but never took a nibble. I tried talking to the fish -- suggesting it take the bait -- I would take my photo - and then, it could return to its family and friends. Still, no luck. I never did catch a fish. But, I did graduate later that morning. We all received certificates of completion, had a lovely boxed lunch by the lake, and then, our excursion was over. 
It was time to return to reality. My time fly-fishing was over, but I did take wonderful memories with me. I continue to support the efforts of CFR, and I did meet some terrific women over the two-day program. I often think of them -- hoping they are all doing well in their cancer journeys. I also know that CFR has become a much bigger program, and now, there is even a retreat in Florida. 

Friday, August 12, 2011

One Day at a Time

Just a few days after my 50th birthday, I realized the following: (1) I was still in a lot of pain, despite taking more drugs (2) I was bored and wanted something to do (3) I was exhausted, so taking naps became a favorite way to “kill” time and (4) I still wasn’t sure if I would be returning to work, any kind of actual work. 
The pain was still at a high level despite my medications and the involvement of a pain specialist. That feeling of having a “rock” sitting in my chest was ever present. When I took a breath, it was still difficult to feel like I had taken in a full breath. The left chest area, just underneath my breast, did not necessarily feel any different to the touch. But internally, I could tell the difference. The heaviness made simple breathing almost unbearable. The only relief was sleep, and now that I had a hospital bed that could elevate my head to any level needed, I did find some comfort. Sleep gave me the only true pain relief of the day or night. 
Being bored out of my mind was another daily issue. Since I was still at home (living in a small three bedroom apartment on the second floor) there was not much I could do. If I wanted to go outside on my own, the only option was the balcony. There, I could sit down and look out over the lovely lake ... viewing the fountain and the endless array of fish, turtles and birds. This was my personal place of solitude. I often turned to this location when I was lonely or sad. It uplifted me to see the turtles resting on the side of the lake. Or, I could see the fish swimming back and forth -- waiting for someone to toss in a breadcrumb. I often grabbed a loaf of bread and spent time tossing pieces into the lake or lakeside -- watching the birds fly in for a piece, the fish fighting over a small slice in the water or the turtles making their way to a breadcrumb, moving quickly in the water or slowly across the grass. I enjoyed these moments of quiet. It was peaceful and I savored these hours of personal reflection. 
Adrienne was starting college soon, so she needed some clothing and supplies. She took me to the local mall to do some shopping. This got me out for a few hours. My only other regular outing each week was to visit the physical therapist, not exactly a fun-filled activity. (It was a necessity although at times, it added to my pain.)  The therapist was also concerned about my breathing problems and noted that she would be suggesting respiratory therapy, if the problems continued. 
When I was able to get out for a meal (lunch or dinner) that, too, was precious time for me. Eating out was always a favorite family activity, so as difficult as it was to accomplish, Edward certainly made the effort to make it happen as often as possible.  (Physically getting me out and down the stairs plus the financial challenges of just having enough spare money to eat out made this difficult.) 
I was now on chemo #10. It was August 23, 2002. I was still exhausted and nausea was still a common problem. There were good days; there were bad days. This was one of the “not so good days.”  If a small problem occurred, my mind blew it out of proportion. It was suddenly a major crisis. It didn’t matter what it was or who was responsible, I would become highly agitated... my blood pressure would rise. I would be all upset and if asked how I felt, my loud, shouting response would be, “I feel like shit!” I got all shaky and out of control. It was extremely common now for me to be upset over the slightest  issue ... tears came streaming down my cheeks on a regular basis. With little or no provocation, I was angry and frustrated. My son and daughter saw a side of my personality that, quite honestly, even scared me. I often wondered if they understood what I was thinking or how I was feeling. 
While it may have felt good to get these bursts of anger out, I was not sure if it was healthy or not. I was sleeping later and later each day, and even then, still suffering from fatigue. Taking life one day at a time was the only solution for now.

Monday, August 8, 2011

A Very Special Birthday Celebration

(Note: My all-time favorite American Cancer Society tag-line -- “ACS..The Official Sponsor of Birthdays. It doesn’t get any better than that. Knowing that year after year I’ve been able to celebrate another birthday (since my original diagnosis in Dec. 2000) means so much to me. And, I know it means a lot to my family and friends. Each year has been special. There have been ups & downs, but with each passing year has come a greater understanding of life. I love being a part of an organization that supports ‘more birthdays’ and another year of life. To my fellow cancer survivors -- all I can say is “happy birthday!” Celebrate! Live life to the fullest.)
I had reached the big 50. August 9, 2002 -- my day to be the birthday girl. My family helped plan a dinner bash in my honor at a local restaurant, Taste of Italy. (This establishment closed but the owners have a new place.)    See           More than 20 people joined me on August 10, plus several stopped by to say hello and offer up their best wishes. We had taken over an entire area of the restaurant, and everyone was enjoying the great food and ambiance. Plus, there were lots of presents for me to open (that was a huge surprise) and a delicious cake prepared (with love) by wonderful friends who worked for a nearby Publix.  See
My celebration included not only the party but a dessert get together (the night of my actual birthday) with my daughter, Adrienne, who took me out for a “yummy” brownie sundae at a nearby restaurant. The entire staff stopped what they were doing to sing “the happy birthday song.” That was fun! 
I was shocked by the array of gifts I received, so many presents -- and to me, sharing this with my friends and family was the real gift.  Being around their energy gave me strength. I was now 50 years old and for a few brief moments, I felt great!
I had started treatments with Procrit   Go to:           days prior to my birthday, a drug designed to build up my blood cells. I was officially anemic and very weak. I was hoping for a miracle. I was hoping the drug would instantly give me the energy I was lacking. Of course, no such luck. I was sleeping much more, and for longer periods of time. I made a note to ask if this was normal. 
Per instructions from Dr. Shah, I also added a nutritional supplement to my diet. I made a shake out of Ensure along with ice cream and a banana. My taste buds were effected by the chemo, so whenever I ate, I needed to add more flavor in order to taste my food. I could not tolerate spicy foods, but needed extra “additives” to help me eat better. There were some strange things going on with my taste buds and my body overall. I developed more indigestion and anything the least bit spicy made me extremely sick to my stomach. I could not even eat tomato sauce, although ketchup was fine. I now ate my spaghetti with ketchup, but at least, I was eating. 
Besides challenges with eating and the extreme fatigue caused by my low blood counts, I had not been sleeping well. I finally got a new bed, thanks to a script written by Dr. Shah. My hospital bed arrived a few days prior to my birthday (another wonderful present) and this was a real helpful device. Now, I no longer had to sleep flat on a bed or try to create a “hill” out of pillows so I would not be lying flat. Since breathing was a major problem, being able to adjust the bed was a major benefit. I could make it where my body could comfortably relax and not have as much difficulty breathing. I loved my new bed. Unfortunately, our bedroom was not designed to accommodate the extra furniture. Our full size bed was pushed against one wall, and my hospital bed was put between that bed and the other wall, with room for me to get out on either side. Not much, but enough. I could still access our closet and the bathroom. It was tight, but it work for now. 
Getting a good night’s sleep was my first order of business. I needed a restful evening. Even a better nap would make a difference. Feeling exhausted was not my idea of how to begin a new year of my life. My birthday -- my fifth birthday -- was a new and exciting beginning. 

Friday, August 5, 2011

Chemobrain... My First “Aha” Moment

I completed my fourth chemo treatment on July 12, 2002. To celebrate, I went out for fondue dessert with Brian and Adrienne. Our favorite local spot, Colorado Fondue Company, had just what I needed -- the perfect chocolate fondue. Yummy!  Go to:
We were preparing to leave, and that’s when I realized I had made a “very stupid mistake.” The bill was $12.04, but for some reason, I agreed to pay $4.00 on my credit card. Adrienne said she would cover the rest of the bill, including the tip, with cash. When the difference was returned to the table, I said “it was Adrienne’s money and told her to take it.” We began to leave the restaurant when the server came running up behind us. She asked “if the service was okay?” That’s when I realized what I had done ... I had told Adrienne to take the money off the table -- the tip money!  It was the first of what would be many “aha” or “chemobrain” moments.  I stood there at the doorway of the restaurant sincerely apologizing to the server. I explained as best I could, that I was on lots of medication and chemo. We immediately gave the young woman her well-earned tip. 
All I could think of on the ride home was: “They keep asking me if I’ll be returning to work?” “Yeah, right!”
Besides this chemobrain experience, I also began to have some nausea. After my fifth treatment, I came home feeling sick to my stomach. Before dinner, I took my anti-nausea medicine. However, I wasn’t able to eat very much. I felt like I was ready to vomit all over the place. Not a very pleasant feeling. I also had some heartburn and indigestion as well. I wrote down a note to myself -- tell doctor or nurse at next visit about this latest problem. 
I had not expected to have five sessions and then, begin feeling ill. But, this is chemo, I told myself. Anything is possible. I was also exhausted. So, the nausea and the other “stuff” along with the chronic fatigue was not a great combination. “I felt lousy.” On July 19, the nurse had told me my blood levels were low, but not yet low enough for treatment with the drug, Procrit. (That drug would eventually become part of my treatment plan.) 
This “yucky” feeling I had seemed somewhat familiar. That is, when I put all my “symptoms” together, I could see that I was slowly falling into the “typical chemo patient pattern.” Taking naps became a daily part of my routine. I was also alone. Very much alone. Not just the feeling of loneliness, but I was “home alone.”
Adrienne had left to be with a friend who had suffered a terrible loss (an accident had taken the life of this young woman’s brother); Edward was with a client since late afternoon; and Brian was off to see an event in Orlando. I had wanted to go, but my nausea (etc. etc. etc.) had kept me home bound. So, I was totally home -- by myself -- feeling like crap! I waited for someone to come home soon. 
I wanted my life back to “normal.” No more pain. No nausea. No fatigue. No more doctor appointments. No more nights of sleeplessness. Normal? What is normal? (This thought ran through my head constantly without answers.) 
I knew my situation was temporary. Chemo would eventually end. I would slowly gain my strength back. The pain would go away, too. I had to believe this. While I sat and had my “mini pity party” I thought about Adrienne’s friend and her Mom -- dealing with their horrific loss. While asking God to bless them and give them some comfort, I slowly relaxed and the tears dripping down my cheeks were not for me ... I was now crying for friends who had lost so much more.  

Monday, August 1, 2011

Chemo continues ... The ups & downs

(Early July 2002) 

I spoke with a good friend and fellow Relay for Life volunteer, Dan. He was busy with his own cancer battle -- testicular cancer. (TC) However, there was one common thread in our pathway to life beyond cancer -- he too had undergone lung surgery, but not once -- twice. He had to have pulmonary surgery when his TC spread to both lungs, so he knew exactly what I had just experienced and knew - first hand - the pain I was feeling. When I told him there was a “rock” sitting in my chest just below my left breast, he understood. When I spoke about the fatigue (the inability to fully function at anytime of the day) Dan said he understood. In fact, we even shared the same surgeon -- so we were able to talk about Dr. Khouzam and how great he was. 
My conversation with Dan helped so much. He was even able to talk about the medications for pain, since we were taking the same drugs. While his chemo was different and he was undergoing physical therapy at the time, speaking with him allowed me, for the first time since surgery, to communicate with another person about how I truly felt. He shared something the surgeon had told him: “It’ll take about eight months until I feel like myself again.”  
Okay. So now I had some sort of a time frame for all of this, even though I realized that Dan and I were obviously different individuals dealing with our own cancers and each had his/her own battle to fight. But, having someone there with me - in the trenches so to speak, made my day. 
I attended my first breast cancer support group meeting on July 11, 2002 at MD Anderson Cancer Center Orlando.   Go to: I took my Mom as a guest and it turns out, I’m glad I was there. I met a woman that evening who was also a metastasized breast cancer survivor. Her cancer had spread to the liver and she was on the drugs Herceptin and Taxotere, (Go to:  the same two medications prescribed by Dr. Shah for me. When I heard that Darla was doing well and her liver tumors were gone -- my heart skipped a beat for joy. I was happy for her while feeling a sense of relief for me as well. Since she explained that they could not do surgery on her liver and that these drugs were her only chance, I realized the power of the treatments we were undergoing. Other women spoke that evening as well, sharing their experiences as we went around the room. My Mom received a huge round of applause as she announced her survival time ... her BC diagnosis was in Sept. 1976 ... almost 26 years as a survivor. The room erupted into shouts of joy! She was hugged by everyone in the room before we left.
Knowing what I did now, from both Dan and Darla, my cancer journey seemed more manageable. Perhaps I could handle all this, and maybe in time, I could return to work and to a normal life. When I did get home from the meeting, I was both exhausted and hyper. Since I was taking steroids as part of my treatment, this was obviously a reaction.  I got ready for bed, but was too energized to sleep. It was 11:30 p.m. and I was super charged with energy and yet, I was also tired. A very strange combination. 
I thought about my life and what I wanted. Did I want to return to DRC or did I simply want to be a freelance writer? I knew I wanted to travel. I wanted to spend time healing, becoming stronger, and desperately wanted to be healthier. I daydreamed of being financially well off and having lots of friends. Enjoying life -- that’s what I wanted most.    
I reminded myself once again, before finally falling asleep that “everyday in every way I was getting better and stronger.” 
(Note: My dear friend and fellow cancer survivor, Daniel O’Leary, lost his battle to testicular cancer in Sept. 2009. He is remembered every year at the Relay for Life of Oviedo by a team he helped establish and is now under the leadership of his wife (also a great friend and ACS RFL volunteer) Jennifer O’Leary. I met this dynamic couple when we were all Survivor Committee members at the University of Central Florida’s RFL. In memory of Dan, I also light a luminaria at our Sanford RFL. If you would like to honor his memory (or another loved one or friend) you can do so by going to the RFL site and purchasing a Luminaria that will go on display during the Remembrance part of the event. This donation supports the ACS commitment to provide education. service, advocacy and research. "There is no finish line until the cure is found.")