The Rehab Experience Continues

(This blog entry pertains to events that happened in May/early June 2008. Please accept my apologies for the delay in getting this entry posted. I must admit that I thought about writing my column, but it seemed that "time" got away from me. I have been busy -- I guess I say this in my defense, with Relay for Life business. I have been doing lots of team fundraisers, arranging more events, and simply getting ready for our big RFL that is set for March 30, 2012 at the Central FL Zoo in Sanford. 

I survived my time in rehab, again. And, fortunately, my stay was much shorter than my experience in 2005 when I was in much worse shape physically and mentally. All that work between 2005 and early 2008 made a huge difference in my ability to recover faster and easier. Thank goodness, because I did not want to go back to the beginning all over again. I also made a couple of friends during this stay so at least, the time I spent in rehabilitation was not all that terrible. There were some good days.

One of my fondest memories were the visits from a local church group who brought along their “furry friends.” Having visits from dogs of all sizes became a treat I welcomed. I never realized how much it meant to have the “affection” of an animal during a rehab type experience. I had animal visits at my previous rehab center, so I knew what to expect. However, I relished the opportunity to “pet” and “play” with my new friends. If they arrived while we were in therapy, everything stopped. The dogs took center stage. I would wheel myself over to one of the new arrivals or, if unable to move quickly enough, a dog came to me. Big, medium or small .. dogs all of sizes and breeds came to visit. Just petting them was a comfort. Even the patients who had been complaining just a few moments before, began smiling when the dogs arrived. Not only were the visits appreciated by the patients, staff got into the moment as well. They too enjoyed the visits. 

Making the time move quickly in rehab was not easy. After wrapping up therapy and having lunch my afternoons were relatively quiet. Occasionally, I decided to join in a game of Bingo or would climb into my wheelchair and ride around the building with my “new buddies” well enough to also travel about in a chair. We would find something to do. Perhaps visit the nursing home side of the building. On that side of Tuskawilla Rehab, there was a large aquarium. Yes, I watched the fish swim back and forth. Seriously, it actually killed some time. We also took in a movie (there was a large screen TV in that section) or simply chatted with residents who lived there. (Many were also taking daily rehab, so I knew some of the men and women on the nursing home side of the building.) A group of us would also venture outside -- either to the courtyard garden where we could sit and talk for hours or the front entry, where we could see the “outside” world for a short time. 

When I had visitors, such as my brothers or my kids, I would take a “trip.” They would roll my wheelchair off the rehab property and I would enjoy a quick visit to the nearby Burger King or Firehouse Subs. That was a special treat, a chance to “escape” and be part of the “real world.” Sitting in one of those two locations, either munching a sub or finishing off a burger was a genuine treat after being “trapped” for weeks in rehab. Since I lived in the area, I knew what was beyond the building where I was staying. So, I wanted to still feel like a part of the neighborhood. Grabbing a bite with my daughter was fun, even if it meant a major ordeal of moving me in a wheelchair from place to place. 

Another Discovery About Me

Recently, I was clearing out a storage facility I had used for years. Inside, it was wall to wall and floor to ceiling -- boxes! Everywhere you looked, boxes were stacked upon boxes and in many cases, the cardboard boxes were “broken” from the heavy weight of another box upon them plus years of just sitting in one spot. Fortunately, my son Brian really helped clear things out and by the end of January, I was “shed” free.

While going through the “mess” inside the storage shed I was sorting a box of items when I came across a collection of cards. When I was hospitalized back in 2002 (during my lung surgery) I received cards from family, friends and coworkers. I had quite a collection and quite honestly, had forgotten that many of these cards ended up in a box. I had been storing these cards for years. 

When I began to realize what I had before me, I found myself looking closely at one of the cards. It was a lovely design -- mostly pastels with the words “The Oak Tree” as the title on the front of the card. This is what it said: 

“A mighty wind blew night and day,

It stole the oak tree’s leaves away,

Then snapped its boughs and pulled its bark

Until the oak was tired and stark.

But still the oak tree held its ground

While other trees fell all around. 

The weary wind gave up and spoke,

“How can you still be standing, Oak?”

 The oak tree said, “I know that you

Can break each branch of mine in two,

Carry every leaf away,

Shake my limbs, and make me sway,

But I have roots stretched in the earth,

Growing stronger since my birth,

You’ll never touch them, for you see,

They are the deepest part of me.

Until today, I wasn't’ sure

Of just how much I could endure.

But now I’ve found, with thanks to you, 

I’m stronger than I ever knew.”

Then, following this beautiful verse, the card read:

I know you can get through this...

You’re good, and you’re strong,

and you have a lot of people

around you who care..

people like me.

As I felt tears welling up within my eyes, I read the name written below the verse. It was signed ... Your friend Harold

Wow! I have not spoken to Harold in years. There was a time when I saw him practically everyday. We were both cast members at the Disney Reservation Center and we worked together in Guest Services. Harold and I (along with the rest of the gang) shared many, many laughs. And, over the years we worked together, we also shared our sorrows, our tears and our fears. He had been dealing with an issue close to home at the time I was hospitalized. His Mom was fighting her own cancer battle. Knowing this, I was not at all upset that he had not come to visit me or contacted me sooner. When I received his card, I knew he was thinking of me. 

And, as I read the card twice over while standing inside the shed, I could feel some tears forming -- but I also knew I was smiling. I recalled a time when I had “good friends -- coworkers with whom I shared so much of my life” and now, many of them no longer really a part of my life and yet, I felt close to them. Harold’s words spoke to me: “Marilyn... your friends & family can help you, but you must continue to fight & believe you can beat cancer.” 

The card was signed.. “Take care & know I’m here & still care.” Harold ....   I took a deep breath. I closed my eyes and saw an image of my friend -- I saw a room full of colleagues I had not seen in years ... I felt a strength that came from within. That card brought back so many memories. The best memory of all -- knowing I had people out there who cared about me and that, the words they shared with me many years ago, still continued to be heard and understood. It was “me” who needed to keep fighting. Harold was right -- I had to be the one to “beat” cancer. I was the one who needed to be strong. 

It was a true “Hallmark” moment. 

Getting in Touch With the Inner Me

While thinking about this particular entry, I decided to go in a totally different direction. Rather than continue my actual story, I wanted to take stock of where I’m at right now. Call it an opportunity to get in touch with me. 

I found myself reading the recent edition of the Temple Review.  http://www.temple.edu/temple_review/    I graduated from Temple University in 1977 and as such, I am entitled to copies of the alumni publication. Over the years the magazine has changed. Let’s face it, every aspect of the publishing world has changed as computers and technology further evolve. When I was in the profession, computers were just making an entrance. I never learned how to edit on a computer since even my instructors and professors at the time did not know how to use the equipment themselves. Many were working for the now defunct Philadelphia Bulletin -- and since they were “trying to learn” the systems at work, it was impossible for them to teach us. Thus, all the computers in the classroom were untouched that semester. Obviously, I eventually learned how to use a computer. (Edward is a devoted Apple computer user.) I’m not computer savvy but I’ve learned to use areas I consider essential -- word processing and email. 

As I read through this latest edition, I realized I was actually “reading” many of the stories. (I admit that I usually glance through the magazine.) Now that I’m back to writing on a regular basis, I am also doing something else as well. That is, I’m also reading other writer’s articles -- a practice I had long ago done “religiously.” One of my mentors taught me that it was important to read other writer’s articles; she said it would ultimately help me become a better writer and editor. She was right. Reading the works of other talented writers did help me become a better writer. Back when I was working a non-profit in Philadelphia, countless hours were spent reading the stories in local papers written by my colleagues. Now, decades later, I found myself reading the Temple Review and several major features. 

One story especially caught my interest. A student at Temple’s School of Podiatric Medicine   http://podiatry.temple.edu/ started the nation’s first forensic podiatry club in the fall of 2010. I had to read this article. I’m a huge fan of the TV show -- Bones. The article was well written. I wanted to read each and every paragraph, not wanting to miss any aspect of the feature. The author’s bio noted that she is a writer/editor based in PA and has had articles in numerous publications. (Gee, I remember those days. I used to do lots of freelance writing and my bio would list a similar entry.) 

Why am I writing about this? Well, considering that I only began to “write” again in 2008 -- after years of being too depressed to even think about writing -- I am now realizing that I also need to read the works of others. I may be a much more experienced writer now, but I can still learn. And, I guess that’s what I’m now beginning to understand. As my mind clears away all the clutter within and I can see a bigger, brighter picture of the world around me, I am more aware of me. I have begun to see “me” in a different way. At different times throughout our lives, we take stock of ourselves. It may be a new year, where we sit down and write out a resolution. There may be a life changing situation that forces us to look at our lives and where we are going. It can be the diagnosis of a disease that can affect our lives and those we love. Getting in touch with our inner self, now that’s a journey! For me, it’s a necessity I cannot afford to ignore. 

I’m really happy that I decided to read the Temple Review this morning while finishing up breakfast and downing my second cup of coffee. It wasn’t so much that I was reading my alumni publication. It was the realization that this small moment in my day was actually a huge step within my life. I was beginning to “write” a new chapter -- more like opening up a book that I read years ago but put away on the shelf and was now rereading. The characters were now more vivid; the plot vastly different than I recall. 

The book of me -- a major work in progress. 

Children with Cancer -- Searching for Support

As an adult cancer survivor I'm often asked how organizations such as the American Cancer Society and other major organizations help children with cancer. It's a question using posed by the parent or someone close to a child who has had cancer or is dealing with a cancer diagnosis. When this happens, my heart immediately skips a beat.

Children should never have to deal with a terminal disease and yet, as we all know, life often hands out a diagnosis of cancer, sickle cell disease, hemophilia or other rare childhood disease. To simply say "it's not fair" is an understatement. I lost a five-year-old cousin to brain cancer. I've never forgotten because my daughter (and a cousin she never met) were the same age. No parent should ever have to hear the words, "Your child has cancer." Those words are devastating -- horrible -- beyond comprehension. Unfortunately, children with cancer exist. And, what is being done to help these youngsters and their families?

I know that the ACS (either directly or via grants) does research on all types of cancer. I also know they have a variety of patient programs including ROCK Camp. http://www.cancer.org/Cancer/news/r-o-c-k-camp  (Reaching Out to Cancer Kids) If you visit the ACS site, you can also access other information pertaining to services available as well as research underway. I'm including several listed on the ACS site:
http://www.cancer.org/Cancer/LeukemiainChildren/OverviewGuide/childhood-leukemia-overview-new-research
http://www.cancer.org/Cancer/Non-HodgkinLymphomainChildren/OverviewGuide/non-hodgkin-lymphoma-in-children-overview-new-research
http://www.cancer.org/Treatment/FindingandPayingforTreatment/FindingTreatmentCenters/pediatric-cancer-centers

Locally (in the Orlando, FL area) there is B.A.S.E. Camp. The acronym stands for Believe, Achieve, Support and Educate. Per the brochure I recently picked up during an area event, the term base is a mountaineering term "for the shelter at which to stop and rest before striking out to scale another cliff." The organization feels that children and their families with these various diseases are dealing with "mountains" within their lives.  The local group, which is affiliated with the national Candlelighters Childhood Cancer Foundation, offers a variety of programs including:

*Jr. B.A.S.E. Camp Kids - a monthly day outing for youngsters six and younger
*The Attraction Ticket Program - providing free days at area attractions for kids undergoing chemotherapy and other treatments
*Fishing for Kids with Cancer - A chance for children to experience a day fishing with their parents

Monthly and yearly programs are offered. To learn more about this organization and how you can either help or receive help -- call 407-673-5060 or go to: www.basecamp.org   The Program Director is Terri Jones-Robbins and I'm certain she will be happy to hear if you can offer assistance or wish to donate .. and if you have a child with cancer, please call and see how B.A.S.E. Camp can help your child or teen.

Life in Rehab

(This blog entry pertains to an experience I had in May/June of 2008.) 

My new home away from this time was the Tuskawilla Nursing & Rehab Center in Winter Springs, FL. I knew the facility well having watched it being built. My Mom had been a patient there in 2005 after a fall required surgery and rehabilitation.  The PT/OT department was outstanding and it operated seven days a week. In the beginning, I would get therapy every single day, then it would go down to six days a week. I was very impressed with the schedule since it meant I would be getting plenty of rehab... just what the doctor ordered. I was not going there for a party. My plan was solid. Get into a routine of rehab and get myself up, walking and moving about in the shortest period of time possible. I left the hospital able to transfer from the bed to a bedside commode. That was a major milestone since in my previous experience, I was still using a bedpan when I arrived in rehab. So, I was already ahead in my action plan. When I did get to the center, (it was early evening, just after dinner time) I told the nursing staff that I needed a bedside commode. They quickly complied with my request. 

The food at this center was also superior to my previous rehab experience. Here, they gave me a weekly menu and I could, if desired, request an alternative to the main entree at lunch or dinner. That certainly made it much easier to eat well, since my daily food choices were actually my own. I could, at least, pick items I wanted from the planned menu. At my last location, each day was a surprise. Here, I knew what I was getting -- for better or worse, you might say, but knowing was better than a daily surprise. In some cases, it offered me other options. I was able to have family bring me meals if I wanted something different than what was being served. One day, a new found friend (a man in rehab following knee surgery) and I had my brothers bring us Thai food for lunch. What a treat! Everyone was jealous.

The staff at Tuskawilla proved to be friendly and for the most part, compassionate and caring. Of course, there were those moments when (if we pushed our button and the light was lit outside our room and no one responded quickly enough) well, let’s just say, there were challenges. These things happen, and in a rehab center... you are not connected to the nursing station via a voice button system. So, you can’t tell the nurse or aide why you need help. You push your button and a light goes on outside your room. If no one sees the light, you wait. And wait. And perhaps continue waiting until help comes along. If you happen to light your button at the same time as another patient, you may continue waiting even longer. There is no priority system. You wait until help arrives. In some cases, it does come too late. (That could mean a patient who is unable to get out of bed on his or her own may have an accident.) There were a few close calls, but fortunately, I managed to handle most of the situations that arose. There were those few frustrating times, when I really wanted help immediately and did not get it... but again, I survived. I also hated being left on the commode when an aide left the room and got busy elsewhere. I sat and sat ... and waited until someone returned to help me off the commode and back into bed. Not an easy thing to do, but I tried very hard to realize that there were others who needed help. And unfortunately, only so many aides available to assist. 

I have the utmost respect for these men and women who take on the job of an aide in a rehab center or hospital. It is not an easy job nor is it glamorous. Actually, it is quite the opposite. It is downright nasty at times and yet, these dedicated individuals do their job with great compassion and understanding. Yes, they may not answer the call bell instantly or get to the room in time trying to respond to the light, but they do come. And when they are with a patient, they do a lot. 

If you would like more information about becoming a CNA, here's a link:

http://www.cnatips.com/classes/nurse-aide-fl.php

Testing for CNA exam:

http://www.cnatips.com/videos/cna-practice-tests.php

Registry for CNAs. 

http://www.cnatips.com/nurse-aide-registry.php

Relay for Life Fundraiser on Jan. 14, 2012

Zumba for Relay! is set for Sat., Jan. 14 at the J. Douglas Williams YMCA, 665 Longwood-Lake Mary Blvd., Lake Mary. Check in at 6:30 p.m. $10 per person. Zumba at 7 p.m. (Class will last one hour; may run longer if requested by participants.) Instructor is Yvonne Boots. Chance drawings. (Must be present to win. Every person receives one ticket for the drawing with paid donation. Additional tickets may be purchased for $1 each.) Light snacks including samples from Tropical Smoothie.

No experience necessary. Begin 2012 doing something healthy & fun! A portion of the proceeds from Zumba for Relay! will benefit the American Cancer Society's Relay for Life of Sanford. 

For additional info contact Marilyn at 321-262-6756 or marilyn_writes@yahoo.com

The Second Time Around ... Operation Recovery is Turbo-Charged

(My last actual blog - not a holiday greeting or New Year wish - dealt with the breaking of my left femur in April 2008. I was at the American Cancer Society’s Relay for Life of Sanford at the Central Florida Zoo when I fell and realized the horrible reality that, once again, I was broken and needed major repair. I was back at Central Florida Regional Hospital in Sanford, FL.) 

When I woke up, I was back in my room. I do not recall post-op at all. But, my family can tell you exactly what I was doing when I woke up. “Boom. Boom. X-Ray.” I said. “Boom. Boom. X-Ray.” I repeated this over and over again as I came out of sedation. No one had any idea what I was talking about, but those were my first words. I kept repeating them - over and over again. As my family reassured me that all was fine, that Dr. Brodrick had met with them and I would “be back together again” I kept saying those same words over and over. I could not stop and I had no idea why I was saying them. 

This recovery period would be different than the last. In 2005, I weighed a lot more -- I was about 186 pounds at that time. Now, I weighed much less. I had begun losing weight in early 2007 and was already about 50 pounds lighter. That would make a huge difference in my recovery time and efforts. At least, I would discover this as the weeks went on. Meanwhile, I still had to undergo hospital-based PT and OT on a daily basis. And no, it was not easy but I did know the process so that made the entire effort much easier. Half the battle is not being afraid or fearful of the unknown. Since I was already aware of the recovery process for a broken femur -- there was little or no fear involved. I was simply scared of the path I would travel, knowing there would be pain and challenges to face. But, it was much easier this time around. And no, I do not recommend breaking bones over again -- nor do I advocate falling. I thought my first and only time with this was in 2005 - breaking a femur was bad enough. Now, I had successfully broken both my femurs. Was I just lucky? Do not even go there. I am being sarcastic -- and I realize I am not lucky. But, being where I was and being under the care of the surgeon I had -- yes, I was fortunate. And I began to realize this and I embraced my good fortune.

Dr. Brodrick had checked me over that evening -- before I was to begin physical therapy. He was checking my incision and wanted to check my movement. I was terrified. He took my left leg and began moving. I was unable to move the leg on my own, but of course, as a physician, he knew what he was doing and took my leg and moved it in a way that nearly brought me to hysteria. I began to shut my eyes as he took my leg in his hands. “Oh no!” he said. “Keep your eyes open and look at me. Look right at me,” he said calmly. I was now scared, but somehow, I realized I had to trust him. I kept my eyes open and looked directly into his. As I did that, he began to move my leg. He smiled as the movement came naturally, with his assistance. While I could not duplicate what he had just done, he proved his point. “Your leg is strong,” he told me, as he placed it back on the bed. “Remember that. It’s very strong.”

Fortunately, I did remember those words the next day when the physical therapist arrived. He was familiar -- turns out, he had cared for me in 2005. So, that helped tremendously since we already had a bond. It allowed me to trust the PT, plus, hearing my doctor’s words also helped me. When I stood up to walk, for my very first time post surgery -- I could still hear Dr. Brodrick saying “Your leg is strong.” While I may have screamed bloody murder the first time in 2005 when the PT stood me up, this time, it was much different. I felt differently, too. I understood my doctor’s words. I was stronger. I felt my body rise up -- much more confidently than before, and I took my first baby step. No screams. No terror. I stood up and walked. Slowly, of course, And with the aide of my PT. But, I did so without this horrible fear of falling -- or a fear of pain -- or a fear of not having a strong enough leg to stand on. I was standing up. I was holding myself up with the walker and and I was able to take a few tiny steps. What an amazing beginning. Again. I had to learn to walk all over again in 2008 but this time, I had greater confidence (thanks to my surgeon) and I was about 50 pounds lighter. That, made a significant difference as well. My recovery process would go faster and easier. My great fear of being at zero and starting again...unfounded. I was more than 50 percent already on my way to getting better and stronger. All those months working out at the Y had made a difference. The lost weight helped too. And now, I was doing all the familiar PT/OT routines again, but this time, I would go through the regimen quicker, easier and more confidently.