Happy 2012

Every year has become more significant to me since being diagnosed with breast cancer in December 2000. Every day -- every hour and every moment is a gift I treasure. 

As we enter a new year -- 2012 -- I find myself reflecting back upon the past as well as looking towards the future. The past is over, it cannot be changed. I am forever a cancer survivor. Although I would like to change that December day when I heard those words, “You have cancer” that’s simply impossible. Even if I had a time machine capable of taking me back in time -- and even if I could change the past (at least the part where I became ill and at times, in such horrible pain) there are aspects of my past I would never change. 

I love being a Mom. I have never taken on any responsibility that has ever matched this role. No job or position I’ve held has come close to being a parent. It’s a 24/7 job -- no day’s off, no vacations, no benefits I can take to the bank (or use for retirement), but I love it and would never change anything about it.

My son, Brian, never ceases to amaze me with his talent and creativity. When he was younger, it was apparent he had “inherited” (or discovered) the world of the arts. He was a natural on stage and began exploring various avenues of acting, writing, film making, directing, producing ... whether it was theater or film, he was somehow involved. Brian has taken his talents into many directions -- most noteworthy, his current passion for performance or conceptual art. When he speaks about his “projects” I am most astounded by his range of creativeness -- there’s no limit to what he can do or imagine. To think, I gave “birth” to this incredible individual. (I’m beyond amazed!)

My daughter, Adrienne, has also developed a strong passion for the arts. She has been a dancer, actor and director. She has spent countless hours doing “back of the house” work for theatrical productions including sound and light operator, assistant stage manager and stage manager. Her creative energy is only matched by her skills to coordinate productions, organize schedules and keep things running -- a simple description of a stage manager. Adrienne came into this world as a very tiny person. (At birth, she weighed a “whopping” two pounds, 14 ounces.) However, despite her petite size, she is a giant when it comes to creativity, tenacity, determination and a passion for living life to the fullest. Wow! And I gave birth to this special individual. (How did I do it?) 

I have never figured out how Brian and Adrienne became so “incredible.” Maybe that’s because it just happened. One day I was holding this helpless little baby and the next, I was watching this incredibly talented person perform on stage. Or, I was looking at a painting he or she created or watching them cue actors for a production. Maybe it was when I saw a film that Brian worked on or when I first saw Adrienne head to the back of the theater to begin her role as SM. Each of those moments was so special and when I look back, it’s with such happiness and pride. 

When I try to glance the future, I see so many wonderful moments ahead. Adrienne got married on January 1, 2011 to Jason McIntosh. They will celebrate their first wedding anniversary on 1/1/12 by casting off on a cruise aboard the Carnival Dream. (The first of many “dreams” to come true for them as a couple.) Brian, meanwhile, has big plans for 2012. And while I would rather not share all the details, I can “say” that he will be heading off in a new direction - and I cannot wait to hear about all the wonderful things that will happen once he is established and ready to make his mark. 

Brian and Adrienne are a “big” part of my life and a “huge” reason why I have worked so hard at “surviving.” I realize I have so much to live for... here in the present, I am having fun. And the future, it’s so bright that I may need extra “dark” shades just to “see” all the exciting things to come. 

When the “ball drops on New Year’s Eve” and everyone suddenly thinks about the past year (with flashbacks, etc.) and then looks into the “eye” of 2012, I will be smiling with happiness. Trust me, my life is not perfect. (If you know someone living the perfect life, I would love hearing about it.) I am not always smiling and happy. (I have my “time restrained” pity parties.) But, when I take into account the total picture of my life --(subtracting out any negatives) it’s absolutely fabulous! It’s spectacular! It’s supercalfraglicexoalpdous! 

Holiday Greetings! Creating Memories

I would like to take this opportunity to wish all of you a very happy holiday season.

If you are celebrating Chanukah, may the lights of the menorah shine brightly. I had a wonderful evening recently -- celebrating the first night of the holiday with my daughter and son-in-law at their apartment. It was a real first for them as a couple, hosting a party at their place. Family and friends gathered to enjoy latkes, a delicious cheddar fondue,(Adrienne & Jason love fondue and made sure that their bridal registry included several fondue pots.) and of course, plenty of sweet treats including donuts, Brownies and a “to die for” chocolate ganache cake. (Jason celebrated his birthday recently, so the cake was a belated b-day special treat.)

I watched Adrienne lead a game of dreidel, taking time to read the “rules” of how to play from a book she had had since childhood. She decided to create teams of two -- and the game began. Taking turns, each guest spun the dreidel and awaited to see what letter came up. Laughter filled the evening as those who were winning gathered more and more chocolate Hershey Kisses. (The candy Kisses were the “gelt” or money being played for and trust me, everyone wanted to win big.) At times, it was downright hilarious watching and listening. Remember, Adrienne’s guests were not Jewish and thus, for many, this was the first time they had ever played with a dreidel and not only were learning a new game but even a new “language.” She would pronounce the Hebrew letters and everyone attempted to say them as best they could. At one point, a good friend of Jason’s shouted out, “L’Chaim!” To which I responded: “If there’s a L’Chaim on that dreidel, I want to see it!” Again, we had a good laugh! Fun was the buzz word that night!

This weekend, members of my family as well as dear friends, neighbors and my “newest friends” (readers of Marilyn’s Byline) will celebrate Christmas. One of my Mom’s sisters raised six of my cousins in the Catholic faith. So, every Christmas Day as far back as I can recall, we visited their home to enjoy a traditional Italian Christmas dinner of lasagna. Of course, I enjoyed seeing their big Christmas tree and all the gifts piled underneath. (We would have them over to our house for a Chanukah party, so the month of December always meant lots of parties and celebrations.) 

I sincerely hope that everyone has a festive time -- filled with good food, lots of laughter and perhaps most of all, the creation of memories. I have so many wonderful memories from childhood of the holiday season. Growing up in Philadelphia, PA meant cold weather, perhaps even snow in the month of December. As a kid, snow was fun! Sledding and days off from school. Yes, those were fun times. As I grew older however, I also began to “hate” snow and ice. If you have never driven in either of these horrific weather conditions, let me say this, it’s not fun. The cold, dreary days of winter is what drove me to eventually want to live in Florida. I needed the sunshine. And yet, I still have fond memories of those days when I was a child sledding the hills behind the doctor’s office down the road from where we lived. 

The holiday season has a greater meaning for me now as a cancer survivor. In fact, everyday is more special. I don’t take much for granted. I appreciate everything -- if someone says “happy holiday” to me, I relish it. If they take a moment to walk over and give me a “hug” and again say “best wishes” I am extra happy. I took some time this morning to venture over to the Oviedo Y, one of my favorite places to hang out. There, almost everyone took the time to say “Merry Christmas,” “Happy Chanukah,” and “Happy Holidays,” to me .. while I was riding the stationary bike, working out on a piece of equipment or just sipping a cup of coffee. I felt so good being around this type of positive energy. Even when I left the place where I had a bite to eat for lunch, the woman behind the counter (who has supported my Relay for Life team) called out to me, “Happy, healthy holidays.” 

Whether you celebrate Chanukah or Christmas or if you will be gathering the family to enjoy Kwanzaa, I wish you a happy holiday. I also extend my best to you for a healthy New Year. Trust me, I’ve learned my lesson the hard way. If you are healthy -- you are a very fortunate individual. Never underestimate the power of good health.

Eat, drink and be merry. Also be safe. And, may we all enjoy a peaceful holiday season.

Feeling Like Humpty Dumpty

(This entry pertains to an experience that happened in April 2008.) 

Besides the horrific physical pain I was experiencing, I was already dealing with major anxiety and depression. I don’t recall the trip to the hospital nor anytime spent in the ER. I was put into a room and the only relief from pain would be surgery. Yes, my instinct was correct. I had a broken left femur and the pain level was 100 on a scale of one to 10.

Here I was, again, a patient at Central Florida Regional Hospital in Sanford. I was just down the road from the zoo and from my friends at Relay. They continued to enjoy the night -- raising a lot of money for the cause. Meanwhile, I was lying in a hospital bed moaning in pain and waiting for surgery. 

The most wonderful moment came when a physician walked into my room and introduced himself as Dr. Thomas Brodrick, MD, an orthopedic surgeon. He said he would be able to operate on me that afternoon. (It was now Saturday morning. I had fallen Friday night about 8 p.m.)  I had mentioned another surgeon’s name upon arrival in the ER since he had operated on me in 2005. He was the only specialist I knew in this field. However, when I was told that this other surgeon would not be available until Monday, I realized I had to make a quick decision. Would I really want to wait until Monday for surgery? In 2005, as you may recall, I had no other choice. I was on Coumadin, a blood thinner. So, I had to wait until this medication was out of my system. But, it was 2008 and I was no longer this on drug. I had other alternatives. I could allow Dr. Brodrick to do the surgery on Saturday afternoon. That would mean I could begin the road to recovery (and the lessening of my pain) much sooner. After a call to Edward to inform him of what was happening, I told the nurse on duty that I wanted Dr. Brodrick to operate. I learned shortly afterwards, that I would be heading down to surgery by mid-afternoon. 

Even though my pain was intense, I felt a sense of relief knowing that the operation would allow me to experience a lower pain level once it was completed. While I did not know Dr. Brodrick, he certainly made me feel at ease. When I arrived in pre-op, he stopped by to visit briefly. He told me he had another patient to operate on, but, given the intensity of my pain and the break itself (Apparently, I had a severe left femur break.) he was going to put me first on the schedule. He said he realized how much pain I was in and wanted to relieve that as soon as possible. I must admit, even in that moment where all I could think of was pain, I knew that he was a considerate and compassionate individual. I felt comfortable putting my “life” into his hands.

When I met with the anesthesiologist however, I did not exactly feel “warm and fuzzy.” His initial comments “terrified me!” He said, “I was going to be awake during the surgery.” All I could think was “No way!” I was not even going to move from the bed I was in until they had me fully sedated. I could not handle anymore pain, so moving me while I was still awake was not an option. Nor, was it an option to have me “alert” while operating  But, despite my protests, he was going to keep me awake. Apparently, it was the only way to safely operate on me due to some complications with my throat and breathing. Since he was the “specialist” he was the person in charge of my overall health and well being during surgery. His decisions won out over my protests. 

Yes -- I was awake during major surgery. And please, don’t even ask me how they accomplished this. (Call it a modern medical miracle.) To this day, I am still somewhat in awe every-time I even think of what was done and that I was actually awake while it all happened. It was not like having a baby, where I had an epidural and was still wide awake to see my child born. It was different, although I’m not quite sure how. I never did find out how the doctor accomplished what he did that afternoon -- keeping me awake while Dr. Brodrick fixed my broken femur. Maybe it was some type of epidural, and yet I don’t recall having anyone put something into my back. (I think I would have remembered that since I would have been screaming my head off as they moved me to do so.) Maybe someday I’ll ask. However, I know I was “somewhat” alert and yet, I was not really there either. 

I remember being wheeled into the operating suite. I recall being moved from my bed to the operating table. I did not experience any pain whatsoever, so again, I can’t even begin to imagine what the specialist did. They took my arms and began placing them where they wanted them to be. A nurse took my right leg and moved it -- from where I was lying, it appeared that she took my leg over my head. (Obviously, that was not the case.) And then, she moved my left left (the broken one) some place else. Since there was no pain, I really didn’t seem to care where she put my leg. I noticed the bright light over my head (extremely bright) and I also saw some plastic sheets or covers that  separated me from Dr. Brodrick. 

That’s about I remember of my time in the OR. Probably, that’s enough. 

Holiday Wine Fest!

Join me at a fundraiser for the American Cancer Society's Relay for Life of Sanford on Wed. Dec. 21 at the Lake Mary Cork & Olive, 4247 W. Lake Mary Blvd. from 6:00 p.m. - 9:00 p.m. RSVP and get the $25 admission fee. ($30 at the door.) Includes three (3) chance drawing tickets. Lots of great giveaways including one prize worth more than $1,000. Light refreshments. Plenty of fun!

To RSVP contact Elaine at 407-688-0923 or Marilyn at 321-262-6756.

Celebrate the holidays & help a great cause! See you there.

Down on the Ground, Again!

It was April 2008. I was ready for a long night ahead. The Relay for Life of Sanford was underway at the Central Florida Zoo. We had just finished a wonderful survivor dinner inside the Wayne Densch Center. Gary, my brother, was sharing the “spotlight” with me that evening as we gave out a variety of prizes to survivors and caregivers.  All donated from area businesses, we had received a lot of giveaways that year. So, instead of just giving them out inside after the meal, we told guests we would meet them at the outdoor stage to continue the fun. We had more prizes to award. 

Gary and I had just be given several thank you gifts for serving on the committee by Survivor Chair Carol Ann Pohl. We had put them down at our campsite and made our way to the staging area where the festivities were underway. Once done, I told Gary I was returning to our site to make sure all was well. We had left our youngest brother, Michael, at the site to keep things going while we tended to other things. Since this was his first actual Relay at the zoo, I wanted to make sure he was okay. Most of my team members had also made their way to our campsite, so this was my chance to say hello to everyone. 

I was standing at the site, less than a foot away from my walker and cane. I was simply talking to Michael and Gary, who had just arrived. At some point during the conversation, I began to “turn.” At least, I think that’s what I did. As I moved (I was going to get my walker and begin heading off to visit other sites.) I felt myself falling. Obviously, I was unable to stop the motion. It felt like I was falling in slow motion ... the sensation was so strange. And when I finally landed, the pain that I felt was “all too familiar.” The searing pain through my left leg was definitely “familiar” in a horrible way. I immediately knew I was seriously injured. I began to scream. “Gary, I can’t go through this again!” I shouted out! “I can’t do this again!” Without actually knowing what I had done, I was already feeling this horrific pain. That all too familiar 100 level on the scale of one to 10. 

Gary didn’t even realize immediately what had happened. One minute I was talking to him and the next, he almost could not comprehend that I was down on the ground. He had been standing right behind Michael (on the other side of our site’s table) and the three of us had been casually chatting. Now, I was screaming at the top of my lungs! Gary radioed for emergency help. Fortunately, he had requested on site paramedics who were there in an instant. (They were on bicycles.) Elaine Raymond, our Event Chair, arrived quickly and was down on the ground with me, holding my hand.. attempting to calm me down and assuring me that help was on the way. Meanwhile, my daughter, Adrienne, who began screaming  “Mommy!” was pulled away as she tried to get down next to me. Someone pulled her away, explaining that they needed to clear the area for the paramedics. Gary had also told someone to find Edward, who had began walking around the area. 

The following moments are a blur. I know an IV was put in, and I was told I was being given a pain killer. I was screaming away! The pain was so excruciating! I could hear comments like, “Look at her leg!” “You can see the break!” I could not see anything but I sure felt the pain going through my body! Even before I had the X-ray, I knew I had broken my left femur. 

How in the world did this happen? I had broken my right femur just three years earlier in 2005, but I had tripped over a curb. Now, I was simply standing.. talking .. I moved very slowly and did not even complete my move and I went down with such a force that the largest bone in my body had broken! I could not comprehend it at all. But, this is what I did know. It had taken years to get back to some degree of normalcy. Now, after finally feeling so much better, all I could imagine is “years” of more therapy. Months of being in a rehab center, then more home care, weeks of outpatient physical therapy and then, more work on my own. Yes, it would be “years” before I could even think of being “normal” again. At that instant, I was not only in physical pain but emotionally/mentally I was a broken person. 

Thanks!

I began my blog, Marilyn's Byline in late June 2011. So, it's been five months. I just noticed that I reached the 1,000 mark. That is, I have had 1,024 hits since starting my online journal. I am beyond "words." I can't believe I have touched so many readers -- and in turn, you have reached out to me and my story. I am so grateful to all of you. I appreciate you reading my entries and I especially thank you for telling others about Marilyn's Byline. Word of mouth has made a huge difference. I also know that many of you have enjoyed the bookmark I have shared with you.

Again, thanks for your tremendous support. I will continue sharing my story. Plus, I promise that I will also continue to work on my book, "High Maintenance.. Surviving Cancer at All Costs." 

I have had so much happen over the past few months. I had "three" skin biopsies -- all benign. And, recently, I underwent a needle aspiration biopsy of my right thyroid -- also benign. I will have my PET scan next month and need to schedule another colonoscopy. In other words, my doctors are keeping me busy. (Thanks for your thoughts and prayers.)

Hope you can join me and my team, Circle of Hope, at our upcoming fundraisers. (Mentioned in my blog this week.) You can "see me" this coming Tuesday, Dec. 6 at Ale House in Sanford and on Wed. Dec. 21 at Lake Mary Cork & Olive. (For my out of town readers, I know you're with me in spirit!)

Celebrating the Holidays

Marilyn’s Byline is taking a different direction this week. My entry is not in the past. It is very much in the present. Or perhaps, the near future to be more precise. 

I am promoting several fundraising events that will benefit the American Cancer Society’s Relay for Life of Sanford. I have a wonderful team - Circle of Hope. We are a small team, comprised of family/friends. There are 11 of us this year. 

On Tuesday, Dec. 6 enjoy a delicious dinner and help raise money for Relay. How? Miller’s Ale House in Sanford will generously donate a portion of the proceeds from the evening to RFL. That is, you stop by to have a family dinner or holiday gathering with coworkers and Relay for Life of Sanford benefits. 

Location:

Miller's Ale House

50 Town Center Circle

Sanford 32771

Time: 4 - 9 p.m.

In addition to having great food and drinks, you can also purchase chance drawings for a holiday stocking filled with gift cards! Wow! For a $1 you can walk off with a prize package worth over $50 plus dollars. You do not need to be present to win. 

For more holiday fun, join my team at a Holiday Wine Fest on Wed. Dec. 21 at Cork & Olive in Lake Mary. Stop by this popular wine bar & wine store for light refreshments and a chance to win some great prizes. (Chance drawings will be held that evening.) Special prices on a terrific array of wines. 

Location:

Cork & Olive

4247 W. Lake Mary Blvd.

Lake Mary 32746

Time: 6 - 9 p.m.

Price is $25 pp in advance; $30 pp at the door. To RSVP contact: Elaine Raymond at 407-688-0923. 

A portion of the proceeds from both events will benefit the American Cancer Society’s Relay for Life of Sanford. 

We are now celebrating our 6th year as a Relay. Our main event is set for March 30, 2012 at the Central Florida Zoo in Sanford. I am currently serving my second term as Advocacy Chair. Our event chair is Jayna Fox. To learn more about our event go to:

www.relayforlife.org/sanfordfl 

Diabetes -- Living With a Whole New Challenge

(This blog pertains to events that took place in 2007/early 2008.) 

The whole diabetes thing became another dimension of me. I became active with the American Diabetes Association and its Step Out for Diabetes walk. I formed a team and raised money for the cause. I also realized I needed to be an advocate for diabetes, just as I was becoming one for cancer. I now had year round volunteer activities between both ACS and ADA. Both were important causes to me and I wanted to help make a difference. 

Being a cancer survivor who is also a diabetic simply ups the odds. That is, the odds that I will have major health problems due to both of these medical issues. As a diabetic, my risk of heart disease rises as does my risk of stroke. Many of the tests I must take for cancer control can be influenced by diabetes. The PET scan requires a special diet and no exercise regimen for 24 hours prior to testing. During this time, I had to eat a high protein only diet (no carbs or sweets) plus I had to remain sedentary. Glucose levels would drop throughout the day so I had to remain diligent to ensure I did not drop dangerously low. When I arrived for testing, an extra step involved checking my glucose levels. Now, as a result of my diabetes, I also had to remain on extremely high doses of cholesterol medication and medication for HBP. My doctors wanted to ensure my cholesterol and HBP remained within healthy limits since as a diabetic, I am much more prone to heart disease. (My family history does not help since my Dad died from a massive heart attack at age 52. My Mom was treated for high cholesterol as well as diabetes. In her case, however, her blood pressure generally ran low.) 

Being grateful for diabetes. There is something strange about that. Yet, I truly am glad that I was diagnosed when I was since before that, it seemed that no one was taking my weight gain seriously. I had asked about it, but until late 2006, most of my doctors had ignored my weight issues. They were more concerned with other health matters. By the time it was recognized and they were ready to deal with it (I had a doctor indicate I needed to see a dietitian) it was already time for me to go to classes with a Certified Diabetes Educator. As I see it, everything worked out for the best. I may be much lighter now and healthier, but I am still a diabetic. 

I bring that up, since many people (when they see me) do not believe I am a diabetic. They actually say, to my face, that I am too thin, too skinny. That, I must protest, is a real error and in general the public needs to understand that being overweight or underweight or just right -- that does not necessarily mean you will or will not develop diabetes. Yes, research has shown that being overweight can lead to diabetes but even after one losses weight, that does not mean the diabetes goes away. An individual who undergoes gastric bypass may very well no longer need diabetes medication after surgery, however, simply losing weight will not take away the disease. I still need to remain vigilant -- eating right and exercising. Otherwise, my glucose levels can be high. That does not change with weight loss. What does change is how the body works overall. Less strain on the heart, less stress on the bones and muscles... a better way to control diabetes is weight control. 

I am not happy that I must identify myself as a cancer survivor -- as someone with asthma or as a person with diabetes. Having all three is no prize. I am not a winner except for the fact that I am beating the cancer, controlling the asthma and working hard at keeping my diabetes in check. If that’s winning, then I get the big prize! 

Since 2007, I have been active with the American Diabetes Association’s Step Out for Diabetes walk. In Orlando, the event is held in the fall, usually early November. My first year, I joined a team formed by an ADA staff member. It was just me, so on the day of the event, I arrived early and prepared for the 5K walk. At that time, I was still using my Hugo walker. Walking the streets of Orlando could prove challenging since there were surface changes every few blocks. It went from asphalt to brick and sometimes, very uneven sidewalks, if I could not navigate the streets. But, I was determined to make the entire distance and I did. The roars of the crowd at the finish line were deafening - they were screaming with delight as we passed under the archway of balloons and back into Loch Haven Park. I had done my first Step Out. A major physical accomplishment! 

http://www.diabetes.org/

Happy Thanksgiving!

As a cancer survivor (as well as someone dealing with other life threatening illnesses) I especially have plenty of reasons to give thanks on this special day. My list is quite long, but for the purposes of this blog, I will give you the abbreviated, abridged version of my "thankful list."

I am most grateful for my wonderful family. I have Edward, Brian, Adrienne, Gary & Michael who make up my immediate family. And this year, I can add a new person to the list - my son-in-law, Jason. I also want to add my son's girlfriend, Sultana. I feel so "fortunate" to have all of them in my life. Added to this list is a group of people who now make up the circle of "my special peeps."  Janice, Gary, Eric, Kristin and Marybeth ... now considered family via Adrienne's marriage into the McIntosh family and Brian dating Marybeth's daughter. I also have a nephew, Eric, who recently got engaged to Kassandra, so the family continues to grow!

I have many friends - way too many to list in this brief thank you list. I'm sure you know who you are -- I always tell you how much you mean to me! I also have family members now located in Arizona, PA, FL and WV. I miss you all and wish we could see each other more often. I am grateful for a social networking site - Facebook - that keeps me connected with my relatives scattered around the country. (I even have relatives in Belgium! Very cool! Wish I could visit!!)

I remain extremely grateful for my health care "peeps." The doctors, nurses, technicians, admitting clerks, volunteers, etc., etc. Anyway who has, in anyway, been a part of my journey is a special part of my life. I thank you for all you do. The professionalism you demonstrate; the compassionate care you provide. I am thankful to be a patient at MD Anderson Cancer Center Orlando, part of Orlando Health. I also thank members of the staffs at South Seminole and ORMC, all of whom are an integral part of my team.

May all of you enjoy this Thanksgiving holiday. And, as we enter into this major holiday season, please know that I am so happy to have all of you in my life. I may not have ever wanted to be a cancer survivor, but since I am, I am so grateful to be in such great company. Happy Holidays to you, my family & friends. And to those now reading my blog and getting to know me .. thanks for becoming part of my journey. Enjoy the adventure!

Oh, I’m Also a Diabetic!

(This segment pertains to events that took place in 2007.) 

As you have already discovered, I have had my share of medical challenges since 2000. For someone who was relatively healthy before that time, I have more than made up for it since with not only my cancer diagnosis but being told I have asthma and finally diabetes. I call it the winning trio. Three potentially deadly diseases. How lucky could I be? 

Cancer diagnosis - 2000. Asthma - 2002. And now, in early 2007, I learn I have type 2 diabetes. Not a total surprise considering it runs on both sides of my family. My Mom was an insulin dependent type 2 diabetic. I learned that Gary had been dealing with it for years and Michael was finally diagnosed in 2010. Of my Mom’s two sisters, one also had the disease and of her three brothers, I now that two had it as well. My Dad’s sister was also a diabetic. I have no idea how many of my cousins are affected, but I know it runs high throughout my family tree. 

However, I was still shocked by those words and by the diagnosis. My A1C was 9.2 and I was weighing in at approximately 186 pounds. (A1C is also known as glycosylated hemoglobin and reflects the average blood sugar or glucose levels in the body over a two to three months period of time.)  I immediately began diabetic classes where I learned about things like portion control and how to take my own glucose readings. It was a process I took very seriously. In fact, I believe I was scared to death by the idea that I now had this third major medical problem. Fortunately, I was already working out at the YMCA, so I stepped up my regimen. And, a year later, I was weighing in 50 pounds less. 

I took portion control to heart, literally. I now understood that a lot of the food I was eating (especially at area restaurants) ... the portions were way too large. A single plate had enough food on it for three or more servings. So, I began to take home doggy bags. I began to eat smaller servings. I learned to share meals at restaurants. And, my at- home plate looked much healthier. I cut back on the servings of carbs (the pastas, rice, sweets) and loaded up instead on healthier options and better proteins. That 50 pound weight loss was incredible.  My A1C was now at a non-diabetic level (less than 6) and I was able to now control my diabetes with only exercise and diet. I was taken off the oral medication after only six months since my glucose levels dropped so low. I finally had one health challenge that I could actually take control of on my own without any medication. That was huge in my book. Being able to control my diabetes by exercise and diet alone may not be easy, but I realize that in the long run, it is worth the energy.

Every doctor commended me for my success. My cardiologist was thrilled. My pulmonary doctor was able to remove me off of one of my inhalers since my asthma was coming under better control as a result of the weight loss. My oncologist was happy with the results as well. All aspects of my life improved as the weight loss continued and my blood glucose levels balanced. I was now happy that I had diabetes. It had made such a significant difference in my life. Having to think more consciously about my diet, having to make better choices. Needing to watch my intake of carbs and knowing that if I did exercise, I could not only control my numbers but watch the pounds come off. The combination of exercise and diet did work -- I had proven it. And, I never did do an actual diet.  My biggest change was portion control. I continued to eat my favorite foods, but did so in moderation. I learned to eat smaller portions of food and enjoy each and every bite of my favorites. I learned to eat chocolate in a healthier way. I could still indulge, but I had to do so in a healthy way. I realized that I simply needed the chocolate taste, so one small bite could suffice instead of the entire huge slice of cake or pie. Sharing was a wonderful option for dessert. I also learned that I could still enjoy iced tea, just not sweetened ice tea -- unless I used an artificial sweetener.

Having Fun and Getting Stronger at my Local YMCA

(This blog entry covers experiences from the summer of 2006 until later that year.)

The instructors at the Oviedo Y were amazing. So patient and understanding. They always made sure I was safe and they kept a watchful eye on me as we went through the various water exercise routines. I also felt safer knowing that the life guards were right there, too. When I was ready to exit the pool, the life guard on duty would come to the edge of the pool, near the stairway, and would bring my walker over to a location where I could readily reach out and get it. They did this for everyone with special needs and their kindness was most appreciated. Instructors such as Jane, Yolanda, Kim and Barbara -- all gave me their time and guidance as I made my way through this difficult period of adjustment. 

The simple act of getting in and out of the pool was an exercise routine all its own. I was still having challenges with steps, which is why I did some follow up physical therapy in the summer of 2006. Stairs would continue to be a “problem area” for me. 

Weeks turned into months and before I knew it, I was going regularly to the pool for sessions and getting stronger with each passing month. I felt great and loved the freedom that the water offered me. Where I had so many “on land” restrictions, in the pool, I felt so free and carefree. I could jump and enjoy myself without pain. It was such a wonderful feeling. 

After I became stronger and felt ready to tackle a new program, I began a chair exercise class. This is where the participants are seated, usually in a circle, and work routines to strengthen the upper body as well as the lower body. However, all routines are done while sitting. We used equipment such as exercise bands, light hand weights and balls. 

Once I became even stronger, (This was a decision I personally made.) I started the popular Silver Sneakers class. This 45-minute class is done with participants sitting and standing for various routines. (You can choose to sit through a routine, if necessary or preferred.) Chairs are lined up in rows and attendees also use the bands, weights and balls as part of the session. Music helps make the sessions lively. 

When I began Silver Sneakers, I met two other Y instructors -- Andrea “Dre” and Jamie. Instantly, they became good friends. Since I like variety, I tired to vary my work out schedule each week. I did, at least, two water classes per week. Then, I added two Silver Sneaker workouts. I was definitely keeping active, and the more I exercised, the better I felt. My personal program of “getting better and stronger” was actually working. There was no way anyone could have ever convinced me that I would enjoy exercise classes as much as I did. The more I did, the better I felt. (Yes, I have heard professionals say this all the time, but seriously, I never believed it.) 

The Silver Sneakers “gang” (as I personally referred to them) were also a great bunch of men and women. Some did water classes as well, while others were simply committed to the Silver Sneaker program. Again, I was basically the “baby” of the “class.” However, I was made to feel welcome and I must add -- many of these individuals gave me a “real run for the money.” That is, I had to work extremely hard to keep up with some of the participants. My classmates may have been 10-30 years older, but many were in “fantastic” physical condition. As I saw it, I had my work cut out for me. They inspired me to work to a level I never thought possible. 

(Just a quick note. If you ever find yourself needing rehabilitation of this kind, do not hesitate to utilize any facility that offers up a heated pool, especially an indoor one. To this day, it remains my favorite type of exercise. I love the overall freedom I feel in the pool -- it’s exhilarating! I can jump up and down and not feel any pain. That amazes me. When I do other forms of exercise, there is definitely pressure on my joints and on my hips, knees and feet. But in the water, I have this buoyancy that is nearly beyond description. It is a great form of exercise for those suffering from any form of arthritis or who have had an injury that affects that joints or bones. Consult with your physician first before doing any type of exercise but chances are, they will sign off on this type of activity when you are ready.)

Rehab is My New Exercise Program

(This blog pertains to experiences that happened in July/August 2005.) 

I spent two full months in the rehab center, watching most people who arrived after me, leave before me. Those with knee or hip replacements were long gone before me. Apparently, as I would discover, insurance carriers have their own idea of how long rehab takes. That is, if a patient has undergone knee replacement surgery, Medicare allows three weeks of in-house rehab. After that, the patient goes home. As someone with a broken femur, I was in a class by myself. There was no time line for recovery and rehab. The staff at Terra Vista needed to make sure I could fully function on my own before they set me free. I had to be able to walk to the bathroom on my own, with a walker. I also had to be able feed to go to the kitchen and prepare a basic meal and take it to the table to eat on my own. Since I could not count on someone always being at home with me, they had to be sure I was self sufficient before sending me home. That took extra time and work. But it was worth it, even if it did mean more time away from home and family. There were moments I did become depressed by the long time away from home. This was far from an easy experience. 

When I finally left, I was given a script for a home health aide and eventually outpatient therapy. All part of the process to my getting better. Each step had challenges. But, again, I was determined to reach every new goal I put before myself. Once home, I wanted to get around better, so I did my PT with gusto. When I graduated to outpatient PT, I had other goals. To drive again. To walk stairs. To move faster and steadier. All within reason. Every goal attainable, with practice. Tiny, baby steps. I took one and moved forward.

When I finally was sent home, I was now living in a small two bedroom apartment in Sanford, FL. It was on the first floor so fortunately, I had no steps to deal with. The home health aide came several times a week, helping me with bathing and other personal hygiene activities. My physical therapist worked with me on a regular basis as well, either in my bedroom (doing a variety of exercises and movements to strengthen my legs) or taking me outside for walks once I was able to move about better and was more confident with my walker.  The whole idea was to get me out of the house and eventually, onto outpatient physical therapy. It was a long road -- with many twists and turns.

Damn. Nearly a year after I broke my right femur, I was still having physical challenges. I could hardly walk steps, and if I wanted to get myself back to where I was before, I needed to do be able to walk stairs. So, with a script from my doctor, I entered back into physical therapy where the emphasis was on learning to climb steps and simply increase my overall strength. I did a great deal of work on the stationary bike and lucky for me, the PT center I chose had a water rehab program. I was able to begin water therapy. Being inside this unit, where water temperatures were 98 degrees (body temp) meant an environment that was safe, comfortable and easy for me to handle. I enjoyed my sessions and began feeling better and stronger almost immediately. My therapist was pleased with my progress and suggested I look into other options, since my time with her would be limited.

Directly across the street from the PT office was the Oviedo YMCA.  I had known about this facility for a long time. I had watched it being built and knew of it when it first opened as a private health and wellness center. The indoor pool was one of its finest features -- heated and available for use year-round. I took myself across the street to check it out. That meant, walking over with my walker. I was using a Hugo walker - one with four wheels and a seat, if needed. Taking my time, I made my way over to the Y. 

Fortunately for me, they offered a great deal. At the time, I had an insurance program that would allow me to join a Y. So, I signed up for membership, and after my PT ended, I began water fitness classes. Trust me, as much as I enjoyed being in the water, it was not easy. Those first few sessions were tough. Just getting myself in and out of the pool was an endeavor, but actually working out. Exhausting. The classes were 60 minutes and I could barely make it, but I knew that I needed this type of exercise if I was to get back the use of my legs. Being in the water made certain exercises much easier -- and the stress on my hips, knees, etc... so much less than being on dry land. 

Yes, the water therapy was good for me and I knew it. I just had to be persistent and keep attending classes. So, I set a goal of going twice weekly. Those sessions were long and difficult at first. I really felt weak. There I was, in my mid-50s and I was the baby of the classes. Most of the men and women in the water fitness program were 20 to 30 years older. But, they quickly became my friends and my greatest supporters. They were there to cheer me on, one small step at a time. And, when the time came, I was able to cheer others on who found themselves in similar situations. Water therapy is often prescribed for patients after knee or hip surgery, so the classes were often a haven for individuals just out of surgery, recent outpatient therapy and who were now ready for the next step. 

Personally, I was ready to make “giant” steps into the future. 

Living the Rehab Life

(You will be reading about an experience I had in June/July 2005. As you may recall, I was recovering from a fall where I broke my right femur. Rehabilitation was essential for me to learn to walk again; in fact, to function at all I needed to spend months in a rehab center far from family and friends.) 

On my first full day at Terra Vista, I discovered the true meaning of compassion, dedication and patient care. My aide not only told me he would completely make up my bed but he was also going to give me a full bath, also in bed. Now that proved interesting. 

My daughter, Adrienne, came to spend the day with me.  She sat quietly on the other bed in the room, watching the aide prepare me for my bath. I was actually excited, since I had not had a real cleaning since I had fallen. While in the hospital, I only received a quick wipe down and a daily bed change. I still had the words NO and YES on my legs -- indicating which leg to operate on. The black marker writing was smudged yet the words still legible on my thighs. I was also damp with sweat and had this awful odor coming from my hospital gown and the sheets that I had been wrapped in. So, when those were finally removed and I could no longer smell them, I already felt better. I know my daughter must have felt a bit uncomfortable seeing a male assistant caring for me in such an intimate way. Yet, there was no time for modesty. Yes, I could have insisted on a female aide but honestly, I was more than pleased with this young man’s professionalism. Turns out, he was studying to become a nurse. He certainly had higher career plans but at this time, he was doing the job he had and making me, the patient, feel good. My bath was wonderful -- even if I am still in awe as to how he really accomplished everything he did considering I could not move on my own at all. While at Terra Vista, he proved himself time and again as a dedicated health care provider. 

Physical and occupational therapy were tough. No easy way out here. You either do the work and get the results or you continue to lie in bed and go no where. It is completely up to the patient. I saw the full array of options. I saw those who chose to do nothing but complain. I saw those who stayed in bed and cried. And I saw those who, despite the pain, got up and got going. That was me. The words: “No pain, no gain” took on new meaning. I understood them like never before. I took a lot of pain medication to get moving, but in the end, by moving each day -- a little at a time - I was able to eventually, reduce the amount of pain medication I took. Getting better and stronger did work, with time and patience. I needed patience -- I had plenty of time.

Therapy is the most essential aspect of being in a rehab center. Terra Vista had a professional staff of therapists and thus, I took full advantage of every hour I had with them. Those hours were critical to my well being and I would remain bed ridden if I did not take their advice, guidance and skills seriously. 

I need to shift gears for a moment and simply give out a “huge thanks” to the entire rehab staff at Terra Vista. Those who were there (in 2005) were outstanding and without their help, I would still be unable to move let alone walk. I looked forward to my daily sessions. On Sunday, the only day the therapy room was closed, I was sad although my body probably needed the day off. It was obvious to them, as it was to me, that therapy was the reason I was there in the first place. So, doing what I needed to do was a real “no brainer.” I am forever grateful to the OT/PT team that cared for me that summer. 

Moving From the Hospital to Rehab ... A Whole New Experience

(This blog covers events that took place in June 2005. I had broken my right femur and had just completed surgery and a stay at the hospital. Now, I was off to rehab. A whole new adventure awaited me. Although the "reason" is not entirely clear, it was assumed by some that the broken femur was perhaps caused by the cancer drugs I was taking. One drug was intended to strengthen the bones while another was known to weaken the bones. A real Catch 22!  However, the break itself was "severe" per the surgeon. No matter what actually occurred -- and why I even broke my femur is obviously an aspect of this journey I would have preferred to never experience at all. As previously noted in my last blogs, the pain was horrific. Now that I had undergone surgery, I was finally able to see the pathway to recovery.) 

Between recovering from surgery and the need to find a rehab center that could take me, my stay in the hospital was longer than anticipated. However, that day finally arrived. I would be going to a place in Orlando, very close to M.D. Anderson Cancer Center Orlando so that I could be driven, via van, to my treatments. I had already missed one cancer treatment session, so the social worker helping me to find a rehab center took that into consideration. She wanted to find a location where they not only had on site transportation for wheelchair bound patients, but I could get to treatments quickly, and with little time driving to and from. My new “home away from home” would be Terra Vista.

It was evening when I finally arrived at Terra Vista, (a combination nursing home and rehabilitation center)  probably close to 7:30 p.m. I was exhausted from the experience and needless to say, it was quite a production getting me from the hospital to the rehab center. Not the actual ambulance ride -- that was okay. It was getting me from the hospital bed to the stretcher and then, from that to the rehab bed. Now that was a real production number and the medical personnel sent to assist me really had to work hard. I was terrified about getting from my bed to the stretcher that would take me to my “new temporary home” and away from the hospital that had been my home for more than a week. How in the world would they move me? I could not even imagine it.

I had been in the hospital bed for more than a week and was still in a great deal of pain. Fortunately, my nurse had given me a pain pill about 30 minutes prior to the arrival of the transport team, so it had time to kick in and begin working. At least, that was the intended plan... to hopefully minimize my pain during this move. Once I was on the stretcher and making my way from the room to the ambulance. I was finally outside for the first time since my accident and I enjoyed my quick moment in the warm, summer evening. 

The ride was basically uneventful. My blood pressure was checked and I was asked if I was okay a few times. The bumpy roadway did not help much, but I managed to survive. A quick move over the railroad tracks, that just happened to be close to my new destination, proved painful but again, I survived. We were finally at the entrance to Terra Vista. My first real view of the place -- my very first vision or reaction -- “Oh my God! I’ve been sent here to die!” Why did I feel this way? After all, I knew I was on the road to recovery. I had just left the hospital and was now entering rehab, which was the next big step towards getting home. So, why my reaction? Why did I think I was dying? 

The very first sighting I had from my vantage point  (the stretcher) was a dark hallway, and a frail, tiny old woman slowly making her way through the corridor. I thought I was brought to a place where everyone was very old and well, perhaps, near death. Please understand, I rarely think like this. I have the greatest respect for my elders and I actually do not think of people as “old” -- it was just my state of mind. I was heavily drugged and all I could see was this little woman making her way past me holding a water bottle... she walked slowly, very slowly and was bent over so that she was looking at the floor and not where she was going. I truly thought they had made a big, huge mistake and had sent me to the wrong place. I was in an old-age home, I thought. Where was rehab? 

Fortunately, getting out of the hospital was the first big step for me. The next, literally learning to walk again. Baby steps. That is how I looked at it. Each day, I would take another tiny step forward. Using the walker, and with the aide of my physical therapy team, I began taking tiny steps at each session. My first goal seemed almost impossible, but as silly as it sounds, getting out of bed (and no longer having to use a bedpan) was step number one. I hated using a bedpan, perhaps almost as much as having to lie in a bed all day long unable to move on my own. Freedom would be slow. I saw my goal. It was just inches from my bed but so far away. There stood a bedside commode. My first goal. To get out of bed and onto the commode. Okay, so it was not the actual toilet. That was much further away and to get there, I needed to be more ambulatory. But to use the commode, all I needed to do was to learn how to slowly get myself up in bed, turn to the side, reach and pull my self up with the walker, and slowly turn and pivot in the direction of the commode. A few basic moves and I would be on my newest “seat of honor.” Gravity would make this “aspect of being human” easier for me and for the staff. After all, if I were sitting on the commode, well.. you get the idea.

One Baby Step at a Time

(Events took place in June 2005.) 

When I finally awoke from the surgery and was back in my room, I could immediately tell the difference. While I was already beginning to feel pain, at least, it was manageable with pain medication. That was a real blessing after the previous three days. I could hold a conversation with someone and not end up screaming in pain, and I was finally able to adjust my bed so that I could eat without wearing my meals. Small progress at best, but I knew to accept any progress, even baby steps. 

In fact, that was my life now. Baby steps. The physical therapy team wasted little time reaching me following surgery. After all, it was their job to teach me how to walk, again. This process would prove difficult and extremely painful -- and at times, frightening. Fortunately, I highly respected the therapists and understood their role in my recovery. Without their aide, I would forever be in a bed. So, getting up and about was what it was all about right now, and I anticipated their arrival with excitement yet some fear. When two men walked into my room that first time, I tried to be upbeat and positive. I listened as they explained what would happen. They told me exactly, step by step, what they would do -- what I was to do and not do, and then we got started. They would move me to where I was to be in the bed and then, slowly, they would raise the header of the bed and I would wait until they were ready to help me get up. There was great anticipation in the room -- the three of us working together for a common goal. My first step .. post surgery. 

Once I was actually in a seated position on the side of the bed, they let me rest for a moment. Obviously, my body needed to adjust since I had been lying flat for days. In a way, it felt great to be off my back -- I did not realize how much my entire body ached. Ready, they gave me final instructions on how I was to rise up and to hold onto the walker they had placed by my bedside. I had never used a walked before, so I had no idea what to expect let alone how to really use to correctly. That was why they were here, to show me how to use this device so that I could eventually walk on my own. For now, of course, just getting up from the bed was a major ordeal. I was terrified. I was not sure my right leg could support me. Even though I had undergone surgery and was told it had been successful, I had no proof that my leg could support my body. The lead therapist told me that I was only to “toe step” -- that is, I had to place all my weight onto my right toes and not any pressure on my heal or entire foot. I would stand up -- my left leg on the ground but my right leg supported only by tip toes or “toe step.” That sounded logical, at that time, but proved quite difficult when executed. 

When I was given the signal to stand, I began to rise up and once I placed my weight onto the left leg and slowly adjusted myself to placing my right side  -- using that gentle toe step, I held onto the walker and found myself standing.  I screamed! That was my very first verbal reaction. I gave out a loud, blood curdling scream. (I had had a lot of practice with this, so it just came naturally.) I scared the daylights out of the two therapists and a nurse came running into the room to see what had happened. That was my gut reaction. A terrified scream! However, the therapists were professional enough to know that they needed to reassure me, and then, we took a major step forward. I moved the walker a tiny bit forward and took my first baby step on my new, titanium reinforced leg. Still terrified -- I looked forward, listened to the calm voice of the physical therapist by my side, and took another tiny step forward. Those steps were monumental. While I may have covered only a very short distance, I had taken a huge step forward in my recovery. 

Each day I would walk a bit further, aided by a dedicated group of therapists who were there for me every step of the way. And, when I was not doing physical therapy, I was busy with occupational therapy. Both were essential for me to reach my next goal -- to be able to walk well enough that I could leave the hospital and go to a rehabilitation center for the second part of my recovery. Ever hear the words, “No pain, no gain.” I think they were coined by a person doing heavy duty PT/OT for a long period of time.  Pain was part of the process; yes, it was very painful to walk but each step brought a new level of confidence. And yes, there were plenty of gains. When I finally made it to the door of my room, I was so proud of myself. You would have thought I had just completed a marathon. I was so happy! 

Broken -- Screams of Pain

In June 2005, I was walking from my apartment in the early evening along with Edward. He wanted to go to a nearby restaurant for a quick bite. I had already eaten dinner but agreed to join him for conversation and perhaps, dessert. As we made our way towards the car, I apparently fell. I have no clue as to what exactly happened. I do recall feeling the sensation of falling .. and as the hit the ground, I felt an excruciating pain that tore through my entire body. “My leg!” I screamed. “My leg!” Hysterically crying in pain, I could not even imagine what had just occurred. All I knew was that the pain was intense. Extremely intense. I could not move my body and I only felt this horrific pain searing through my right leg. In blood curdling screams I kept shouting: “My leg!” My screams were heard all over the complex. 

Edward immediately called 911. My two children, both of whom heard my screams, came running from the apartment. They were both dialing 911. So were more than a dozen others in the complex who heard my screams. I later learned that some reported a woman in the parking lot was being “murdered.”  Emergency paramedics arrived on the scene and apparently began to access the situation. Per my family, the leg was obviously broken -- they could see the unusual appearance of it, and knew I had a serious break. Of course, at this point, we did not realize what I had actually done. 

The paramedics (God bless them) had to put up with my loud, non-stop screaming. I never stopped, despite being asked to try and calm down. The pain was too much to handle. I had never experienced anything so horrible. I would later tell others that even childbirth was a bit easier, although I am not a big fan of any pain. And unfortunately, nothing the paramedics did alleviated the pain I was in at the time. They did administer a pain medication via IV, but it did nothing. I continued screaming my head off. And they had to listen to me all the way to the hospital. 

I arrived in the emergency room of Central Florida Regional Hospital in Sanford, FL and was assessed by the ER physician. I cannot tell you about any aspect of this, since all I could do was continue crying and screaming. Even when the nurse asked me to calm down, I kept on shouting at the top of my lungs. When I arrived in the X-ray department, the two technicians told me I had to calm down -- they literally said I could be heard throughout the hospital. “I had to stop screaming,” they said. At least, until they saw the X-ray and the actual break. Yes, it was my right femur and per the technician who finally saw the severity of it .. instead of telling me to stop screaming, I was told that the break was extremely bad and I could scream all I wanted. So I did! All night long.

Once in my hospital room, the nursing staff now had to put up with my blood curdling screams. And they kept telling me I was scaring and disturbing other patients. Do you honestly think I cared? I kept on screaming! For almost three days, I did not stop crying and screaming in pain .. and even with the non-stop pushing of the morphine button (which of course was monitored to only administer the right amount of medication) I was in unbelievable pain and nothing could stop it except for surgery. Unfortunately, I learned from the doctor who would perform the procedure, I had to first be weaned off the Coumadin, a blood thinner I was taking at the time. That is why my surgery was delayed; and thus, my journey into a three-day pain-a-thon. When asked for the pain level (using the standard scale of 1-10 for pain with 10 being the most severe) I kept saying that my pain level was 100. And it was! Ten was controllable with medication, but my pain was beyond anything that the Morphine drip could handle. It was 100 on a scale of 1-10 I said, and I never backed down from that. For those few days, I could only wish they would “shoot me and put me out of my misery.” Eating was extremely difficult -- I could not move and thus, could not have my bed adjusted so I could eat without the food all over me and my hospital gown. Eating was not a real priority -- getting my Coumadin levels down was the priority and the sooner, the better. Only when a safe level was reached, could I finally undergo surgery.

Living in La La Land ... Losing Time in the Process

(This blog contains information from books I kept in June 2005. I realize my last blog was approximately one year ago, leaving a gap from May 2004 until this entry. However, in my own defense (if that makes any sense) my life was totally dysfunctional at all levels. I was heavily drugged (all legal) and felt like “crap” 95 percent of the time. Time itself became another issue. I apparently did not keep very good records during some periods of time within my cancer journey. I know my chemobrain (if I can call it that) certainly took its toll. I stopped writing for many years -- using books only to chart my medications and sometimes, an occasional thought. It is from these medication journals and my own memory, that these entries will come from. I hope they make sense. At times, I really wondered if when I spoke I said anything logical. Forget writing. I was “wordless.”)

I found a medication journal I kept. Date: June 6, 2005. It was my 30th wedding anniversary. For me, there would be no party to celebrate. No cruise or extra special trip. If anything, I had to believe that my “gift” was living. I no longer took that for granted. And, while I would have loved to have taken a Caribbean cruise or a trip to Hawaii to celebrate this milestone, I found myself apparently “content” to be at home starting a regimen of potassium supplements per my cardiologist. I had to remember to drink plenty of fluids while on potassium and it was advised that the large tablets be taken with food as well. There would be follow up lab work to be done in about a week. 

I also had this horrific rash. For the purposes of this blog, I will refer to it as GA. There is a big name (GA is the letters) but I can never remember how to spell the damn thing. Plus, very few have even heard of it. When I did my research, there was not much about GA. I had a topical cream to use and my dermatologist would see me in a week. 

My life had not really changed all that much in a year. I still had way too many doctor appointments and now, I had added a skin doctor to the list. The rash was itchy and that drove me crazy. I did not want to scratch it, but my resistance to the itchiness was low. It was all over my arms and upper legs. It was on my hands and fingers, almost like jewelry since the rash wrapped itself around my fingers and wrists. Although it was not contagious, per the doctor and my research, Edward was not thrilled about having to actually touch it. I wasn’t exactly thrilled by having to see it the mirror. It just looked awful even if if wasn’t anything “serious.” The rash would come and go in cycles but I was never able to figure out the actual cycle itself. My specialist really had very little info to share with me about GA, so I was pretty much in the dark about my skin condition. I knew it wasn’t normal and I also knew that while it was not contagious nor could anyone else near me contract it -- I still had times when I felt uncomfortable by it and I know that Ed felt uneasy too. When it did not itch, I actually did not even realize I had it unless, of course, I looked at my skin -- hard not to do since obviously it was summertime and I could see my fingers, hands and arms all the time. 

I needed to use my emergency inhaler the next day while traveling about with my Mom and brothers. The car was hot since the air conditioning system did not work, so I began having difficulties breathing. I grabbed my Albuterol and took two puffs. During this week, while temperatures climbed into the high digits, I had to reach for the inhaler almost everyday. Yet, I still wanted to take walks. We would drive to the air conditioned malls to walk. My breaks would be to stop for a bite to eat, to have a quick drink or visit the restroom. I walked around Festival Bay and the Oviedo Marketplace. Wherever Gary drove me, I found a place to walk and put into action my game plan - to feel better. 

On June 8, 2005 I had my bilateral mammogram and ultrasound at Vin Con in Oviedo. The doctor assured me that the results were benign. No tumors were found and I was remaining cancer free. I slept for most the day afterwards. I was still exhausted all the time. I was taking heavy duty narcotics for my pain at regular intervals. I did manage to go out for dinner that evening with Ed and Adrienne. 

My breathing attacks were quite troublesome. I needed to keep grabbing my emergency inhaler at all hours of the day and night for relief. I was having trouble breathing while coughing and wheezing. I was also very thirsty and had dry mouth. Even when I took a drink to quench my thirst, my mouth remained dry like sandpaper. I had bouts of nausea as well and threw up some mucus. I put myself onto the oxygen concentrator early the night of June 10. I realized I was having difficulties and felt this was the most logical solution. 

Life in la la land was far from fun. I lived day to day taking my medications, taking walks whenever possible and then, feeling totally exhausted. This was not a life; it was not even an existence. It was a living hell.

Back in the Spotlight!

(This article shares experiences that happened in May 2004.) 

Editor's Note: This is my official 30th blog. I began writing Marilyn's Byline in late June. I have been publishing articles every Monday and Friday ever since, only missing two dates due to a death in the family. I appreciate the tremendous response to my work. I like reading your messages and hearing how you have enjoyed sharing my experiences. It has been amazing for me, too. I continue to work on the manuscript for my book: High Maintenance ... Surviving Cancer at All Costs. Please share this blog with everyone you know who is surviving or living with a chronic health problem or simply needs to be given a "wake up call" to live life fully. Thanks. 

With “operation move” completed, we were busy with the next phase of our lives. The Orlando premiere of The Feldman Dynamic was just around the corner. There was a lot to do before we made our way onto the stage for our first Florida presentation. 

First, I had to meet with Dr. Shah and Laura to review my recent tests. Fortunately, the CT scans, bone scan and MUGA were all good. I was remaining cancer free. This news certainly made it much easier for me to plan for my Orlando “acting” debut. Seriously, being in The Feldman Dynamic was not a matter of acting. This was performance art at its purist -- at least, that’s how I understood it. There is no script and we are on stage eating a meal before a live audience. We had done this at the NYC Fringe so I had some idea of what to expect. My “stage fright” was not going to be as much an issue this time around. Yet, I did have things to do before show-time.

All four of us ran around the area putting up posters for the show. When I saw the actual listing of The Feldman Dynamic in the Fringe program, it became real for me. Were tickets selling? Would we have larger audiences this time around? We all wondered what our future would be.  Our tech rehearsal took place on May 19. There were lighting issues to be resolved and other technical matters that Brian and Adrienne dealt with.  By the time we got home, it was well past midnight. 

Our big day was May 22, our first Orlando/Florida premiere of The Feldman Dynamic. We were on stage at The Goldman Theater. Although we never had a full house, we did perform before larger audiences than during our NYC shows. And, those who attended gave “great reviews.” Many noted how “funny” our show was -- and I could hear the laughter as we sat onstage show after show eating and doing what we always did -- we spoke about our lives, shared day to day events, and simply opened up the minds of our audiences to the dynamics of our family and perhaps, even their own family. Maybe it was a therapy session on stage? But, truth is, I was really happy I had finally agreed to do this. I was enjoying myself and it was “fun” being a “Fringe” performer. Plus, knowing that my cancer was “behaving itself” and I was “maintaining” a cancer free status -- I could not fail. Even if we had a small audience -- I felt successful. And if we had a larger audience, I felt even better. Nothing could take away the success and happiness I felt. 

After one of our performances, we joined our friends Nancy and Amie (who had come to see TFD) at another show. Nancy continued to “beat” the odds with her own breast cancer battle, so it was wonderful to spend an evening with her and her daughter, one of Adrienne’s dearest friends. Our show ended and so did the Fringe Festival. For us, there was another piece of disappointing news. We had hoped to make to the Montreal Fringe Festival. In fact, we (The Feldman Dynamic) were already listed in local Montreal papers as the “show to see.” We were getting great advanced press coverage in Canada. However, because we did not have sold out shows here -- and we were still having financial problems, we had to cancel the Montreal trip. Another theater company took our place. And another disappointment for all of us. 

Adding to my “list” of stuff, I was still dealing with pain. My arthritis was really getting worse. My knees hurt a lot. My hands and fingers were swollen and disjointed. It was extremely difficult to write or type. My hips hurt when I walked. I hated being so stiff. 

Breathing was another issue on my list. I still had challenges when I overexerted myself. I had taken a trip to Downtown Disney with Adrienne one afternoon. It was a hot, muggy day and I did quite well going between the air-conditioned buildings and then, returning outside where the temperatures continued to climb. I finally reached the point where I needed some extra help. I had to grab the oxygen unit I had carried with me. After getting hooked up, we went back to the car and drove home. My day was over and I was totally exhausted. We did have dinner at a Disney resort before leaving the area, and I fell asleep on the ride home. Thank goodness, Adrienne was the driver! 

Being in the spotlight had its moments for me. Agreeing to do The Feldman Dynamic proved life changing in many ways. At this moment in my life, I welcomed anything that created a positive change. I sought out positive energy whenever I could. The pain I lived with -- physical and mental -- tried to keep me down. Instead, I looked for opportunities where I could try something new, go someplace different and definitely wanted change -- change for the better.