Help Me Cross The Finish Line at ACS Making Strides

It's that time of year, again!

I will be attending this year's ACS Making Strides Against Breast Cancer on Saturday, Oct. 19, 2013 at Lake Eola in beautiful downtown Orlando. It will be a lovely day -- no matter what. And, I expect to be up "bright and early" that morning all ready for the 5K walk around the streets of Orlando.

This year I registered as an individual. However, I still have an ACS MSABC website that you can visit and where online donations can be made. You can visit:

http://main.acsevents.org/goto/marilynwattmanfeldman

I greatly appreciate any contribution. If you can recall (if you're old enough to do so)  the March of Dimes only asked for donations of 10 cents per person to rid the world of polio. It worked! Now, with inflation, dollars make the difference. But seriously, even a gift of $5 or $10 can make a significant difference. By going online to this secure site, you can make a personal contribution that will go towards the ACS mission of providing patient services, education, advocacy and research. I am alive today thanks to drugs created by researchers funded through ACS dollars. For me, it is truly and matter of life and death.

I have personally lost too many dear friends and family to breast cancer. At this time, I want to recall Nancy and Ellen. Both were amazing women. Neither wanted to lose her battle. They fought courageously. Nancy was an elementary school teacher and she loved her kindergartens. Every summer she would shop for books and toys that she would use to stock her classroom. She also adored her family -- they meant the world to her. She would be so proud to know that one daughter became a CPA and the other, an attorney. Ellen was a leader when it came to advocacy. She spent countless hours in Tallahassee and in Washington, DC fighting for research dollars through the American Cancer Society's Cancer Action Network. When I met her, we were on the bus to Tallahassee and trust me, when Ellen spoke -- people listened. And, they opened up their checkbooks and at the congressional level -- they voted to give more dollars to ACS research. She was also loved by her family.

I miss these incredible friends and "sisters" -- they will always remain reasons for me to Make Strides Against Breast Cancer. Please, find your reason and then, make a generous donation. 

I thank you, in advance, for caring. I am sending out Pink Hugs to all of you. 

Day by day by day -- Say A Prayer for Me

That's how life feels. I wake up (thank goodness) and I do the same things over and over again. The routines are the same. Day in and day out. Very little changes although I wish there would be some major change. I simply don't know what that would be.

For instance. The past three days I've woken up about the same time, between 8:10 a.m. and 8:20 a.m. Twice I got up to answer the phone. But, even with that phone call, I was still on my way to getting up anyway. So, the caller didn't change much about my routine.

It's rare for me to set the alarm unless I have a doctor's appointment or a hospital visit. If so, I need to ensure that I am ready to either get to the location or I need to be ready for pick up. Those days, I may find myself getting up as early as 7 a.m. depending upon pick up time. I am not thrilled but, my body does do something interesting. I usually wake up about five to 10 minutes prior to the alarm, which I hate hearing. I actually jump out of bed before the alarm, in most cases, and since I'm already up -- I will begin my routine. There was a time when I would try to go back to sleep and wait until I heard that "blasted" alarm go off. Oh, I remember those days. I was working back then. Interesting?

Well, I get into the bathroom and begin my daily morning rituals. All the usual stuff, nothing out of the ordinary. If I have already planned my wardrobe for the day, I will quickly review what I selected and take what I need into the bathroom with me. If I haven't selected my clothes, I will go to the drawers and begin that "insane" process. Why insane? Because my wardrobe is so limited that I really have next to nothing to wear -- it's actually a good thing I no longer work. My entire wardrobe is "super casual." I have very little to wear. After losing so much weight, I still kept wearing clothes that were way too big. Then, I finally realized I needed something "smaller" and so I went shopping for a few things. With a limited budget that places clothing not only near the bottom of the list but on the "Is it really necessary or can I get away without it list?" ... Let's just say that I wear the same stuff over and over again. Each week it's basically the same outfits. I try to change it out a bit -- maybe a different top. Or maybe I'll wear a different pair of sneakers. Since I exercise most of the time, I don't have a need for a "frilly" wardrobe although it would be great to have "real workout" clothes. I had a few items but they are beginning to fall apart as well from "wear and tear." Fortunately, my friends at the Y don't really notice what I'm wearing -- we all look "sweaty" and "ready for a heavy duty workout" so the clothes are not really noticed. (Although I do take note of the members who are able to buy nice matching sets for Zumba or who can afford a nice pair of Capri's that fit right.) When I have a few extra dollars, I hit the markets -- Goodwill, Hope, or any of the thrift stores where for about $3 I can find a "new" pair of pants or a top for less.  Thank goodness for bargains!

Once I am dressed and I've taken my morning medications,  then it's time for breakfast. No matter what, I do eat breakfast everyday. I may not eat immediately, but I know the importance of this meal. It was "pounded" into me during diabetes education classes. Breakfast, we were told, was an essential meal and never to be forgotten. If possible, I create a menu that includes a protein, a carb, a fruit, dairy and a fat. That's how I was taught. So, maybe I will have an egg, slice of toast, a glass of skim milk, some margarine on my toast and either a piece of fruit or a small glass of juice. Or, I may reach for the oatmeal adding some fresh or dried fruits and nuts. I may also add Greek yogurt to that meal, bringing in a great source of protein.

I know how to eat healthy -- but then again, it's a matter of what I have in the pantry or refrigerator. Like clothing -- food is on a special list -- it's a "luxury" item. Please don't misunderstand what I mean here. I'm eating -- and I am by no means starving. What I do want to explain is that being on a "limited budget" has its challenges. Since the guidelines for food benefits seem to indicate that I "earn too much money" to receive any extra help, I need to be creative. Like with my clothing where I seek out bargains or thrifty options, I have found some help in this area as well. Thank goodness for local churches and area food pantries. While I never thought I would be standing in line for any of these places, I do have plenty of company each time I visit a location for help. There are many wonderful men and women out there who never thought they would need this extra help -- but here we are. All together at the local food bank, getting our weekly allotment. If lucky, maybe this week they will have eggs. Or perhaps extra fresh fruit or veggies?

My day in and day out routine is rather simple. I am a survivor. I do whatever I have to do to make things happen. If I need something -- eventually, I will get it. Medications. I get those. They are on my priority list. Vitamins and supplements. I try not to run out, but if I do, it's only for a short time. Food. Trust me, I eat -- breakfast, lunch and dinner, even a snack or two. While I may not always eat the foods I would prefer (since I have to work my menu and diet around what I can get or find) I am doing quite well. Per all my medical testing, apparently I am doing all the right things. While I may want to eat a very healthy diet rich in fresh fruit and vegetables, whole grains, healthier proteins, etc., I may need to make modifications based on what I can get and what's in the pantry and refrigerator/freezer. But, I can assure you that when I can get my hands on the "best" I enjoy it. When I have to settle for "second best" I am also extremely grateful. Considering that there are individuals not eating everyday or starving because food is not available -- believe me, I am happy living day by day by day.

Surviving cancer has been a major life changing experience. I have learned to appreciate "little things" and I have come to realize that even "out of date" items are still okay. Bottom line for this survivor -- I don't "sweat the small stuff" any longer. Living day by day by day is A - OK with me. I can make a meal out of anything and I can make it healthy, too. I can make an outfit out of whatever I find in my closet or drawers. I can still walk with pride and hold my head up high. Why? Very simple. I am able to get up each and everyday. I don't take that for granted. I don't even take breathing or walking for granted. I am so forever grateful to the people who have helped me reach this "day..." "this point in my life"... that I can find the beauty and happiness in every moment that I am awake. I love my simple daily routine. If this is living -- I am truly blessed.

(By the way, if you're listening to my prayers, I would not be the least bit upset if you "blessed" me with a bit of financial well being. Even in "Fiddler on the Roof" he sang the song "If I Were a Rich Man." Personally, I don't think it would spoil any "plan" if I came into a few extra dollars and was able to help my family and friends. Whenever you can make this happen, I would be most appreciative. Meanwhile, I'll  keep doing what I'm doing. Thanks. Amen.)

A Whole New Chapter Begins

I realize that when I started writing this blog, Marilyn's Byline, I had a "hidden agenda." I wanted to promote my book, which at the time was a work in progress. It was suggested to me by a wonderfully talented young woman by the name of Sultana Ali that I start this blog. First, she had to tell what a "blog" was. I had no idea. Then, I had to find someone to help me get stated. That artistically talented individual was Thomas Thorspecken, better known as Thor. He helped me get into Blogspot.com and the rest, as they say, is history. Oh, and I did get some additional help (artistically) from a well-known graphic designer, Edward Feldman. He took my original concept and made it look -- well, much more exciting as well as professional. I wanted to thank all three of these incredible people for their help, especially at a time when I was still coming out of my "fog."

Marilyn's Byline started out as a way to let people know I was writing -- something I had stopped doing for way too many years. The years between 2002 - 2007 were downright horrible, physically and mentally. I could barely function on a daily basis let alone attempt anything remotely resembling a piece of writing. (Or anything that made sense.) I was a mess. My brain was overcome by chemo brain, a real dysfunction from which I still continue to suffer -- although I am better able to handle those moments.

In late 2007, Brian Feldman (aka: my son) helped me apply for a literature grant from United Arts of Central Florida. I wrote on my application that I would write a play about cancer survivors and take that piece to a public play reading, all within a year's time. Talk about impossible! Even the judging panel who were there to determine if I would get the grant noted that this project was "impossible" even for professionals like themselves. But I was in la-la land and told them: "I'm a cancer survivor. I can do anything." I said that line three times. I knew I wasn't going to get the grant -- but, I did! Of course, as you may already know, I finished the project in March 2010 -- two years after I started. Chemonologues became a reality when it was read by a group of professional actors on the stage at Theatre Downtown in Orlando. I was "mentored" by Julia Gagne, formerly with Valencia Community College. She also directed the play reading.

Now, I have completed my book "High Maintenance." I am still deciding how to publish my memoir. The exciting thing is -- I completed the book. I did it. I spent three years writing -- but it's done. For me, that's a "giant" accomplishment. There was a time (between 2002 and 2007) where my brain could not have done this work. I could not even write two words in a sentence that made any sense. I was a totally dysfunctional person -- I could barely do anything physical. I had to learn how to "walk," again, twice. (2005 and 2008 after breaking my femurs) I spent plenty of time in hospitals and rehab centers. I endured surgeries, including the loss of the upper lobe of my left lung. (My breast cancer journey began to resemble a lung cancer survivor's journey.) Mentally, emotionally -- I was a wreck! I needed to get off the "roller-coaster, merry-go-round" I was on.

Today, I am writing this new post with a whole different attitude. I feel great! I exercise on a regular basis. I enjoy exercising because I can see and feel the difference it has made. I do "crazy things" such as Zumba, water fitness, basic spinning and Tai Chi. I have tried many other classes along the way. I also enjoy working my muscles -- working at each session to gain better muscle tone and strength. It has become a passion for me.

Thus, my new "blog" is about how my life has improved since I became whole again. What a feeling it is to know that each day I am truly "getting better and stronger." I just celebrated another year on August 9. I love it! I have a whole year to expand my horizons. To learn new things and accomplish goals. (Such as publishing my book) It doesn't get much better than that. So, join me on this incredible journey -- my adventure into year 61. You are invited to encourage me, join me, (which means you need to get off the sofa and start moving) and most importantly, support me. I cannot do this myself. I realized my limitations in 2002 and since then, I have depended upon family and friends for physical, emotional and spiritual support. I will have an awesome year. I cannot wait to see all the amazing things that will happen as each week and each month over the coming 61st year of my life as Marilyn Susan Wattman-Feldman unfolds.

Here's to the next chapter in my life!

My Magic Wand is Broken -- My Publishing Search Continues

During the time I was writing "High Maintenance" I did not allow myself to think about anything other than the actual process of writing. I did not want to "confuse" myself or "attempt to multi-task" at any point during that three-year period. I knew it was "impossible" for me to do more than simply write. Trying to do more -- even attempting a multi-tasking process -- I knew it was wrong for me. 

Now, I have discovered that the publishing process can be challenging. Since I still get "confused easily" especially by anything legal, I have had to depend upon others to read information I get from various sources. That obvious adds more time to getting things done, but I can assure you that I don't intend to take three years to publish my book. While I was hoping this whole process would be easier, I realize that nothing in life is simple. Just getting to where I am today, both physically and mentally, has taken time. Doing it all in baby steps has never  been easy. I have had my moments of frustration. There have been those times where I have had my own personal "breakdowns" or "temper-tantrums" that may make me feel good for the moment but certainly don't get me very far. Yes! I am frustrated that things are not moving faster. I wish I could find that "magic button" that would make this whole process go quickly. I get the rep or publisher and within a reasonable amount of time, I have a published book. Easy! Sure, I wish it were that simple. I need to get a "new magic wand" -- the warranty for my older model has expired!

If you know of anyone who is a publishing rep or can help open the door to a major publisher, that's my real goal. Why? I did not write "High Maintenance" as a family memento. This book was not written on a whim. I was not writing a memoir to be read by a few close friends. I have individuals throughout the country ready to read this book. Some of these people are not necessarily known to me except perhaps via Face book or Linked In. Or through another person. (Third party?) Total strangers? Perhaps? But seriously, I know there are individuals ready to read "High Maintenance" once it is published. And, published as a real book. (Although, of course, it would be available online.)

I am checking every option. I read and re-read every email or notice I have received. Ideas provided to me are being examined. Over and over. I am looking into self-publishing, etc. But, it would be so much easier (Again, I can't stop thinking about the easy way - since everything else in my journey has been difficult.) if I could simply find that publisher (I know you're out there.) who will take my manuscript and publish it --- and help me get it out there, to the world. To my readers. To my potential readers. To readers who don't even know I have a book for them to read. 

"High Maintenance" will get published. As to when and how -- stay tuned for that next chapter in my life. 

Something to Celebrate!

I get the call. It's usually a nurse by the name of Frenchie and she's almost always assigned to contact me after a scan. In this case, it was pertaining to the PET scan I had on Monday morning. It was Tuesday morning and I was at the Oviedo Y. I needed to make up for lost time. Since I could not exercise on Sunday due to test prep and Monday was a total washout (being exhausted from an early morning trip to the hospital) I wanted a real workout. I had missed most of Zumba but did the last 15 minutes of class with Sharon. Then, I stayed for RIPPED with Francine. I already knew before even starting that I would be pushing -- but, I also figured I needed to jump start my weekly workouts.

Once home, I kept trying to reach Frenchie with whom I was playing phone tag. Finally, I heard her familiar voice. The word "negative" came through loud and clear. For the past eight years, I have remained in a cancer-free status. The maintenance program established by Dr. Nikita Shah, MD has been working. And, for this, I am extremely thankful.

Hearing words like "cancer-free" or "no signs of cancer" are true music to my ears. My entire body goes into a mode where I wish I were capable of "jumping really high!" In my mind, I am jumping to the ceiling and beyond. I could reach the moon with my jump! I could reach the stars and world's beyond -- all because I am so happy! While I may not be able to physically jump or move fast these days, fortunately, my mind can more than make up for what my body lacks. I was doing somersaults when I heard the word "negative." I was ready to climb to the top of the highest mountain peak! Prepared to swim across the ocean! Yes, in my mind (within my dreams) I can do anything. And, believe or not, I actually know that a great deal of my physical good health has come from my mental happiness and well being. There is a direct tie-in between the physical and mental or emotional. Being happy and feeling good mentally always helps when it comes to also feeling good physically. Exercising on a regular / consistent basis has tremendously helped me over the years to accomplish my goal of "getting better and stronger everyday in every way." 

I have so much to celebrate today! I have a lot to celebrate tomorrow! While I remain a metastatic breast cancer survivor, I continue to enjoy this cancer-free status. I am NOT cured. I will not be considered "cured" until the actual "cure" for my particular type of breast cancer is found. (I believe this will happen within my lifetime.) However, every time I have a scan and the results are "negative" for cancer or any sign of cancer -- I celebrate another victory in my journey.

And today, I finally decided on how I would publish my book "High Maintenance." I will get with a trainer at Apple (where I have a One to One training program) and begin learning a program that can take my manuscript and create an actual book. Once I complete this process, I can publish online -- those who have iBooks or other such devices will be able to purchase my book. Then, once I demonstrate the ability to generate readers who are buying my book, then I can decide on the publishing future of "High Maintenance." Ultimately, I want to see a real book on the shelves of local bookstores. Based on today's great news, I know this will happen. "High Maintenance... Surviving Cancer at All Costs," is merely the beginning of my newest adventure -- becoming a bestselling author! For me, this will be the culmination of a lifetime of dreams coming true. (Right now, my prayers of remaining "cancer free" have been answered and for this, I am eternity grateful.) 

Yes, Another PET Scan -- Anther Test of Patience

Are you interested in good news? Great! Then I have some to share.

I will have my routine PET Scan tomorrow, June 24. The good news is that I have not had a scan since the end of last year. Apparently, my oncologist is beginning to feel that I am doing well enough that the time between scans can be increased, even if by a month or so. For me, it's another right of passage. 

I continue to experience these "baby step" moments -- just another part of my reality as a cancer survivor. It seems almost like yesterday when she announced the end of my Herceptin treatments. I was totally overwhelmed. Then, I realized I would only go to MD Anderson Cancer Center Orlando every 12 weeks for my Zometa treatments. I was "buying" back more time to live. (The good news just keeps getting better.) Even my trips every 4 - 6 weeks for port flushes and labs (I visit South Seminole Hospital for these quick fixes.) have become so routine that I need to check my calendar to make sure I don't miss an appointment. Actually, appointment is not really accurate since I do not have a "real" date or time set for these trips. I merely show up when it is convenient for me and the staff at South Seminole's Infusion Department are very accommodating. My life as a breast cancer survivor has definitely changed for the better.

My overall health is good. I feel great most days, except for those times when my "chronic pain" begins to settle in. I could complain about the hip / lower back pain (the left side is still the worst) but truth is, I am so happy to not be living at pain levels of 10 or higher that right now, I am living the good life. I still reach for breakthrough pain medications, but much less.  (My femur breaks reached 100 on the standard scale of 1 -10. And after my lung surgery, I lived 24/7 with level 10 pain all the time.) I personally find that exercise is a wonderful pain reliever. My basic cycling class has become a favorite especially since my hip pain disappears for the 30 minutes I am on the bike plus an additional time period afterwards. I still do a 60 minute aqua fitness class -- although there are times I stop at 30 or 40 minutes depending upon how I am feeling. This class is later in the day (5:45 p.m. on Monday) so there are times when I am already tired but still attend the class. I simply do what I can. Then I do Zumba. Yes, for those of you who cannot even imagine this -- I love Zumba! It's fun! It's all about having fun and no matter what you may think, it can be done at a low impact level. Trust me. I am usually standing next to an 80 + year old woman (a wonderful Y friend) and the two of us are enjoying class. We move slower than others -- our jumps (we don't jump at all) and our quick turns (we don't do those either) -- we have our own unique styles. However, here's the great news. Despite the fact that I may not be jumping high or moving fast, I am still getting great benefits from these Zumba classes. Cardio pulmonary wise I am definitely doing something right. My cardiologist tells me to keep "doing that Zumba thing." And my pulmonary doctor was amazed by my latest test results. My lungs are doing well -- I have very mild asthma which is basically exertion oriented. (I use my emergency inhaler before classes to keep my airways open.) I have been able to see test results go from severe to mild. When I say I feel good,  I know that exercise can and does make a HUGE difference. 

As usual, I am doing the PET prep diet. I call it the extreme Atkins diet -- all protein. No carbs. And no exercise or exertion since as a diabetic, my glucose levels may be lower than usual today. Oh and by the way, I never take these tests for granted. Like any "normal" person or as a "normal" cancer survivor, I am still having a slight anxiety attack. Since I cannot exercise, I have been walking (slowly) around the house today both going crazy from boredom as well as feeling a tinge of anxiousness. I would be totally "insane" if I did not exhibit some degree of concern. These PET scans are scary. They are designed to see all the way down to the cellular level within the body. Usually, if I get any written comments from the reviewing physician, it is a note that there is more arthritis. (It is not written that way, since doctors "love" using medical lingo.) But, as Dr. Shah (my medical oncologist) told me back in the very beginning, "arthritis does not kill." The pain from it may seem that way, but after years of reports indicating more locations of this condition - - quite honestly, I have come to embrace it. I even developed a "chant" where the techs and I would actually say things like "Let's hear it for A for arthritis." 

Tomorrow, I will be in a very cold room (they will wrap me in warm blankets) and I will be spending about an hour waiting for the nuclear drug to go throughout my body. I will be hanging out waiting. Just waiting. (Cancer patients do that a lot.) Then, I will walk over to one of two rooms where they have the PET scan. This part of the entire process does not take very long. It is shorter every time as technology improves. After I am done, I will find my way to a place where I can get a bite to eat. My usual post PET diet is a large amount of carbs. (Pancakes, lots of bread, fruits of all kinds.) I will eat my way through "carb-ville" and enjoy every moment of it. 

Then, the true test of patience begins. I wait .. again. This time. for the test results. 

Ready for Publication

"High Maintenance" is ready for publication. The editing and proofing has been completed. Now, the search for a publisher begins.

I have been actively looking for options. I really want to go "big time" with my book. I know my readers include not only cancer survivors and their caregivers (families) but anyone with a chronic medical condition, anyone living with chronic pain (both physical and mental), those dealing with side effects from drugs and treatments, individuals with diabetes, asthma, osteoarthritis, high blood pressure, high cholesterol, pulmonary hypertension, sleep apnea; individuals who have dealt with the loss of a loved one; men and women dealing with relationship issues; and much more.

"High Maintenance" is more than a look into 12 years of my journey through life after a cancer diagnosis. It is a roller coaster / merry-go-round ride through my life and those around me who had to deal with the issues I also dealt with. I never stopped believing I would make it through those darkest hours, although there were those moments where I had doubts and fears. I faced those horrific experiences -- sometimes with laughter and jokes, other times with tears and genuine nightmares. Yes! I even thought the unthinkable for a brief time. When the pain (both physical and mental) became so much I could barely make it through an hour, I thought those deep, scary thoughts. It took much more than my supportive family and friends to get me through. I had a (and still do have) wonderful team of medical professionals standing by my side. After surgeries, radiation treatments, hormonal drugs, chemotherapy and much more... "Everyday in every way I am getting better and stronger."

If you know a publishing rep or a publisher, please contact me with that information. I have tried to find a rep, but apparently many of them are not accepting unsolicited manuscripts. With over 36 years of professional writing experience, I want to bring "High Maintenance" to the masses. I have readers nationwide (even worldwide) ready to read the book. I simply need help with the next step.

"High Maintenance" will make it to the top!