My Story

Read My Story:

Dedicated to those amazing souls who have made an enormous impact on my life and, although they lost their battle to cancer, survive in my memory and therefore live on: Marilyn Boockvor, my husband's sister who died at 34! (Jeez, I thought that was old). Tom O'Rourke (who played Justin Marler) who made all our studio time so much fun passed from throat cancer in 2010. Allen Potter, Executive Producer GL, may he rest in peace -- you were my mentor on GL -- I understood that too late & never thanked him enough. Arthur D. Sederbaum, Esq., attorney extraordinaire, you were my mentor in that "other life." Steve Boockvor - Cancer Survivor & mentor for life!

Denise Pence

aka "Katie Parker" GL 1977-1985

Photos courtesy of Debora Pressman

Emily Foltz is the Daytime Stars and Strikes 2009

Essay Contest Winner

Here is her story:

Emily and her mom Susan

My mom is the person who single-handedly helped me to fall madly in love with soap operas over the 28 years she was in my life. I lost my mom to ovarian cancer in January 2008 after a long two year battle. She grew up watching As the World Turns and Guiding Light with her mom and quickly passed on the soap gene to her own children. I remember grandma being quite old and the two of them would still talk on the phone about their “stories.” Mom would always say, “Grandma must have a different version where she lives because she’s not watching the same shows we are!” My mom stayed home when I was younger so when my brother and I were out of school, we would sit with her and watch the soaps over lunch. My dad would sometimes be home at that time and join us too. As I got older and my interest returned, she would tape each day and we would watch them together when I came home from school. She usually had watched them already but was happy to watch again and never, ever gave spoilers!
When I graduated college and moved away, we would talk almost daily about what had happened the day before and what we thought would be coming up. I subscribed to magazines and would bring them to her on the weekends, always leaving the crossword puzzle for her to do and sometimes writing little notes in there with my opinion on different articles. We could sit for hours and talk about our shows…the current storylines, the past storylines, what we wanted to happen, what was supposed to happen, who we wanted to return…always longing for Duncan, Damian, and Simon because of their accents and James Steinbeck, because, well, because he was James Steinbeck! We would see pictures in magazines of people at fan club events and talk about going but never really thinking we would because of distance. We would talk about who our favorite stars were. She had a mad crush on Justin Deas (from when he was Tom on ATWT to when he was Buzz on GL) and thought Liz Kiefer had the best hair on daytime. “She could roll out of bed and it would look good!” Mom continued to keep up on the soaps even when she was sick. One of my last memories of her was a few days before she passed when I was sitting by her bed and she asked if I had a new soap magazine. I did and she asked me to read some of the articles to her. Grayson McCouch was coming back as Dusty and we sat and talked about him and Lily and predicted how he would come back. Although he wasn’t the original Dusty with the magical blue eyes (our first mutual crush when I was just a little girl!), we were both excited for him to come back because we loved the character and what Grayson brought to it.

After she passed away, the soaps felt like my main connection to my mom because it was always “our thing” that no one could take away. As GL and ATWT end, it is especially bittersweet for me because I am losing something so close to my heart. The soaps have been so much like my relationship with my mom was. They were always there when I got home, they made me happy, made me sad, made me cry, made me feel better when things didn’t seem like they could be. It was an escape from reality that my mom introduced me too. She would have been so sad that her stories were finally coming to a close but so excited for all the returns and to find out what the characters were still supposed to be doing. This spring I finally got to come to NYC for the ATWT fan club luncheon. It was one of the most amazing experiences for me seeing people I had grown up watching and loving so much. At that event, I heard about the Daytime Stars and Strikes event and I knew I should come back for it. Being able to combine my love for soaps, with donating to a cause so close to my heart, seemed like a once in a lifetime chance! I was in awe at the amount of money raised at this event and knowing what it was for made it so much more special. I regretted that my mom couldn’t be there with me for these events, but I knew in her own way that she was, and she was thrilled! And when I finally got to hug Paolo Seganti, she was probably cheering me on and hoping I would grab his butt and ask him to say something sexy in Italian!

6 Years in Remission and Counting...

Wanda Conlogue

In March of 2003 I noticed a bruise on my knee. I really didn't think too much about it, thinking I had bumped it and just couldn't remember doing it. A few days later I started vomiting a lot and I had the shaking chills. I also had a temperature of 102 degrees or better. I figured I probably had the flu. After about 2 weeks of not getting any better I decided I had better go to the doctor. He thought I might have an infection going on so he put me on antibiotics. Another week went by and I was no better so I went back to see the doctor. He put me on the strongest antibiotic he had but I still was not getting any better. He then ran some blood tests. A few days later he called and wanted to see me. It was then that he told me I had AML (acute myelogenous leukemia). I was hospitalized immediately. I underwent chemotherapy and had to spend 30 days in the hospital in Bangor. I then had to go home and get my blood built up good again. I returned to Maine Medical Center in Portland. This hospital does stem cell transplants where Bangor does not. I spent 23 days there undergoing high dose chemotherapy. The doctors retrieved my own stem cells and treated them with something which I still really do not understand. I went back home for another month to get myself built back up while they treated my stem cells. I then went back to Portland and had to have more high doses of chemotherapy and then finally the stem cells that they had retrieved from me earlier were transplanted back in my own body again. I spent 22 days in Portland that time. Finally on September 8th of 2003 I was back home for good this time! I had to go to the oncologist in Portland every week for about a month and then I was transferred back to Cancer Cancer of Maine in Bangor. I was so lucky! I had the most wonderful oncologist there. I went every 2 or 3 months for about a year, then it was only twice a year. I just had my last checkup in February of 2009. I do not have to go back for a year. He told me my blood is the best it has been since I was sick, and that I am now in total remission!! As I was going through all of this I always tried to maintain a positive attitude and believe me I really think it helps. I just can't believe how much progress has been made in the cures for cancer. I now have a three year old granddaughter who is the joy of my life. I thank God everyday.

Boofie and granddaughter Karen

Virginia (Boofie) McCann, Born June 19, 1918

A breast cancer survivor from April, 1986 until her passing March 20, 1998

When diagnosed, she decided on a mastectomy, and never looked back. She lived another 12 years,
sharing life and love with family and friends.

For over 30 years, our family has been gathering for the Annual Reunion of the Descendants
of Sam and Geneva Brown (my maternal grandparents). The first generation of those descendants are my 5 uncles and my mother, Virginia McCann. In 2006, at the 30^th Reunion, each of the 6 branches of the family shared a tribute to their mother or father of that first generation. What follows is the tribute to Boofie, as it was shared with the extended family that day. Imagine yourself at the camp that my grandfather built on a lake in Maine. It's a warm sunny day in late July, the smell of pine needles in the air.

BOOFIE

Most of you knew her as Boofie (or Boof); to her grandchildren she was Grammie Boofie; her given name was Virginia (Virginia Emvella, to be precise); but to my sisters and me, she was Mama. The nickname Boofie was given to her early on, when her brother Jed – older than her by not quite 2 years – tried to say that his baby sister was a “beautiful thing”.

Last September, the McCann sisters got together to pool our collective memories and discuss what we’d like to be said about Mama today. One of the first things we talked about was how to present this tribute; should each of us say a few words, or what? I think it was Betty who said, “I think our spokesperson should do it.” As I looked around the table, they were all looking at me, so I guess I’m it. The thoughts and stories I’ll share with you today are a collaborative effort. I’m honored to be the spokesperson on this occasion, but fear that no words can adequately express what we feel for Mama.

We six sisters have a treasury of childhood memories, and Mama played a very large part in most of them. I heard it said recently that we are shaped to become who we are by the memories that we choose to keep. I guess it would be fair to say that much of who we are is the result of those little pieces of Mama that we 6 sisters still hold in our hearts. Mama once told Geneva that she wanted all of her daughters to grow up to be perfect ladies. Four or five out of six is a pretty good average, don’t you think?

As we sisters talked that fall day, there were several topics that surfaced over and over again. We talked of her talents as a cook and seamstress, her willingness to laugh at herself, and her extreme patience.

I’m sure that on many occasions, her houseful of six girls tested her patience - sorely. I think it was Sally who told about one occasion when we had apparently worn that patience a bit thin. Mama’s comment was “Girls, girls, you wonderful girls!” She also exhibited that patience when teaching us different things: how to cook, how to sew (if we wanted to learn), how to play cribbage, and other important life lessons. I’ve heard several of Boofie’s grandchildren comment on how she was always willing to let the little ones “help” with the cooking, even though it would have no doubt been easier to do it herself.

Her cooking was a talent that most of us here today were treated to, at one time or another. I think the fact that Nancy felt moved to pay tribute to that talent a few years ago with the Grammie Boofie cookbook, speaks volumes. She’s still known in the Howland area as ‘the doughnut lady’, stemming from the many Halloweens she fried up hundreds of chocolate doughnuts to give out as a fresh warm “treat”. That’s quite a trick. When I think about going “home” to that house where we grew up, the picture that comes to my mind is walking in through the kitchen door, and finding Mama in the kitchen, creating some kind of delicious aroma – from baking bread or cookies or pie. If you came to visit and she didn’t have some sort of baked delight to offer you, she often had one whipped up before you left.

Until we talked that day last fall, I didn’t know – or at least didn’t remember - that Mama played the piano. By the time I was growing up, I had several older sisters accomplished at the piano. Apparently Mama was happy to listen to them entertain her (as was I). Her musical tastes were quite diverse. We had a collection of old 78 records that ranged from classical to Spike Jones. Quite a range!! I was blessed to have been the only child at home during my later teenage years. Some of my fondest memories are of Mama and me going for a walk after supper on a warm summer night, or hopping into the car, rolling down the windows, turning on the classical music on the public radio station and going for a ride to cool off. Sometimes Daddy would come along, and sometimes it was just the two of us. The destination was often to go up around Bunker Hill or up the North Howland Road to Hardy Brook.

I think I was in my 20s before I realized that we were - by common standards - a relatively poor family. I guess it never occurred to me, because we never felt poor. Mama made a point of emphasizing how lucky we were to have a houseful of playmates. We didn’t have a lot of money, but we never lacked for the important things. I can remember on more than one occasion growing up, my friends commenting that I had the prettiest dresses. Of course they were home made.

This brings another story to mind that really touched me the day we sisters were together to talk about Mama. It shows how Boofie taught us values. She taught by example. When Geneva was in the 4^th grade, Mama had promised her that she was going to have a new outfit made for her for the next day. Things didn’t go exactly as planned, as Etta ended up in the hospital with appendicitis. Mama and Daddy were at the hospital with Etta until quite late. When they got home, Mama stayed up all night to finish that promised outfit. A promise is a promise, after all.

Another aspect of our childhood that we talked about that day was the love that Mama and Daddy showed for each other. We never saw them fight. Sally and Blandine do remember, however, one day they were having a discussion, and decided to go for a walk – in the rain. I guess there was a disagreement that needed to be ironed out, but not in front of the children.

We sisters all agreed that Mama was always young at heart. It wasn’t until she was in her late seventies that she made it known that she had always wanted a real doll house when she was little…and would still like to have one. ‘Nough said. The family all chipped in and purchased a doll house kit that Russ and I put together, including shingles on the roof, clapboard and cedar shingle siding, a front porch and all the trimmings. On Mother’s Day that year, we sisters took her for an outing to the Doll Show at the Civic Center in Bangor to buy a houseful of furniture. She did indeed “play” with it, arranging and re-arranging the furniture to suit her.

One thing that stood out to me, from that session last fall is that although we all share the same love for Boofie, our perceptions of those growing-up years are all slightly different. The older girls tell about Mama playing dolls with them; showing them how to care for their ‘babies’, and how to make clothes for their paper dolls. They also tell about her playing Hilly Billy Over with them, over the kitchen part of the house, and badminton out on the lawn. I learned those things from my older sisters. My memories of Mama playing with us are mostly of board games, card games, cribbage etc. I do have a vivid memory (and a treasured photograph) of Mama lying on the kitchen floor, coloring with [granddaughter] Karen when she was little.

She was never too busy to spend time with us. Geneva remembers Mama playing cribbage with her “for hours”, and she would help us with our homework, if we needed it. (Did you know that Boofie was the Salutatorian of her class?)

She’d go hunting and fishing with Daddy. She had time for all of us; we never lacked for her attention.

Geneva used to have a framed poem displayed in her house. It sums up Mama pretty well:

Some houses try to hide the fact that children shelter there –

Ours boasts of it quite openly; the signs are everywhere

With puzzles on the table, and toys strewn on the floor –

(I should apologize, I guess, for handprints on the door).

But I sat down with the children, and we played and laughed and read,

And if the doorbell doesn’t shine, their eyes will shine instead.

For when at times I’m forced to choose the one job or the other,

I want to be a housewife --- but first, I’ll be a mother.

(Author Unknown)

Submitted by Margaret Roy -- Boofie's youngest daughter.

My Wake Up Call

Marie White

A few years ago, maybe '03 or '04, I noticed a lesion that wasn't healing. From the location of it, I thought it was maybe a wound from the strap of an ill-fitting bra (it was right at that seam, ya know). Many times I went to the doc for regular checkups, but always forgot to mention it. Finally, in 2005, I remembered to have the PA look at it on a routine visit. She told me the primary doc would look at it and probably biopsy it. He took one look and "oh no, I can't touch this.... it's too delicate... let me refer you to the right person...". I went to the best dermatologist in town, the one who's so in demand she only sees cancer patients, and affirmed that this definitely needed to be removed and studied. The results came back... Basal Cell Carcinoma. She removed the rest of it via Moh's surgery in May 2005 and all was well. But I go back once a year and have my whole body scanned for anything that might resemble skin cancer.

I wouldn't consider myself a "cancer survivor", what I went through wasn't at all harrowing. But I would say I am someone who had a wake-up call.

My Journey Through Breast Cancer

Karen Violette (February 2009)

From the time a woman finds a breast lump or receives a positive finding on a mammogram/ultrasound, her natural response is “Oh My God, I’m going to die”.　 With early diagnosis and prompt intervention she does not need to feel this way.　

May 2005 I noted a lump in my left breast. I was very conscious of my breasts from doing monthly breasts exams and having a history of atypical ductal dysplasia of the right breast. I had been on Tamoxifen for 3 years. I just happened to have an appointment with my surgeon the next week for a follow up visit for a benign area she had checked 3 months before. During my appointment when she checked the lump with ultrasound I knew things were not good when I saw the ragged edges of the tumor (I had been a RN for 26 years). She performed a needle aspiration and my story starts. She called me 2 days later to let me know that there were malignant cells. Of note; I felt the lump 3 weeks before my first wedding anniversary. I had transferred to a new job 4 months prior to my diagnosis.

I would like to start off that this is my story and everyone’s story varies depending on their diagnosis, pathology report, provider, and their own personal decisions on how to move through their journey. Everyone is different.

I had a mammogram, mammogram/ultrasound, and needle biopsy the week I felt the lump which detected and gave an initial findings of malignant cancer cells. I was scheduled for a lumpectomy and Sentinel Node biopsy one week later. Two weeks after I met with my Oncologist (I had been seeing for 3 years) and discussed treatment and decided on chemotherapy and radiation therapy in addition to my lumpectomy. My path report: Medullary cancer, negative margins and negative sentinel node, hormone receptor negative and Her 2 receptor negative). I was diagnosed with a triple negative breast cancer. I requested a port (central line for IV access) for my chemotherapy infusions. This was placed a week later and my chemo started one week later. While waiting for my chemo I went to Dana Farber Cancer Center in Boston for a second opinion and received the same recommendation for treatment. I was happy with the decision (it would have been tough to decide between two recommendations) and returned to Maine for treatment in my hometown of Bangor.

I spent 2 months receiving chemotherapy and 6 weeks in Radiation Therapy. Throughout the 6 months of my journey I tried to keep a positive outlook and see this as 6 short months out of my life. With the support of all the people around me I was successful with all aspects of my treatment and dealing with the emotions of my journey. I likened this journey to being pregnant: the nausea, fatigue and something great at the end (my life instead of a baby).

As I had surgery and throughout my treatment I learned may things that made my life easier in the 6 months of my treatment. My sister encouraged me to journal and I am so glad I listened to her. I also made lists and tried to put a positive slant on this journey. It was not all difficult and I learned a lot about myself, family, friends and co workers through this journey.

My lists begin:

Things to make my life easier:

Keep a positive outlook, some days this was hard but so important for my journey.

Use lots of pillows to prop for comfort.

Keep the dressing clean and dry.

It’s ok to shower and it will make you feel better.

Wear a bra to bed after surgery for comfort and less pain.

Expect swelling after surgery. My lumpectomy breast was larger than my non surgical breast. I used a temporary prosthesis (chicken cutlet) to even my breasts out for a few weeks.

Take pain medicine if needed, this is not a time to be tough.

Don’t be afraid to call the doctor if you think you need to: sign/symptoms of infection, unable to control pain, large amount of drainage

Follow-up with surgeon as scheduled.

Overload of printed material: Everywhere I went I was given so much printed material. It is very overwhelming to receive so much material, I was tired and not sure which material was the most important to read first. Ask the doctor and nurses where to start. My personal was a book my surgeon gave me by Susan Love on Breast Cancer.

Be careful of surfing the network for sites found on the computer. Use reputable sites, the first search told me everyone with my diagnosis dies.

Attend a “Look Good Feel Good” class, this is actually fun and has lots of great information about taking care of yourself. They teach you how to put on makeup when you have no hair, eye brows or eye lashes (yes, it can all fall out, but it does grow back) and how to pick wigs or caps, scarves or hats.

I had some of the side effects of the chemo but none I could not tolerate. My hair started falling out 2 ½ weeks after I started chemo. I was in a meeting at work and put my hand to my head and brought it back down with a handful of hair. I tried not to look like anything was happening. As soon as I got out of the meeting I drove home (in tears) and called my hairdresser to shave my head. She told me I had a great shaped head and it was time for all of us to laugh. I was happier with no hair than falling out hair. I chose to wear caps instead of wigs. I had lots of different caps, scarves and hats. My husband bought me a baseball cap with the logo “I’m having a no hair day”. It brought lots of second looks and laughs from people. I even offered to share with a few normally bald guys. My sister made a special breast cancer cap with pink ribbons that I always wore to chemo. My family got in on the act with my dad, son, stepson, and brother in law shaving their heads and being bald while I was. My husband (already didn’t have much hair) would have shaved his head but instead (at my request) shaved his mustache of 28 years. Four years later he has not re-grown it. My hair grew back within 6 months I had very stylish hair of 1 “, I had fun spiking it and doing fun things as it grew out. It started growing out white and happily changed to brown. I didn’t get the curls I always had wished for but never had (this was my one chance).

The picture is of my Dad and me.

During my first visit to the Oncologist after I was diagnosed they gave me books on pain and pain control. I was not having pain but found that my chemo could certainly cause joint and bone pain. I felt like I had the worst case of arthritis and walked like I was “old”. I tried different levels of pain medication depending on the degree of my discomfort. I also used heating pads and stretching exercises. Most of the time my pain was well controlled, some was probably due to pushing myself to much, I had to remind myself to listen to my body and rest.

Nausea and vomiting is one of my least favorite things. My first day of chemo went great with no nausea for the next two weeks. My second day of chemo led to 12 hours of vomiting and a trip to the ED. My son made me a special supper that night of spaghetti with basil sauce (the smell of basil still reminds me of that day). I was moved up to the next level of nausea meds and although I had occasional mild nausea I had no further vomiting. Good Thing. I ate foods that sounded and tasted good, Italian Ice was a life saver for me as well as lots of water and iced tea.

Eating was important to me. I drank 8 glasses of fluid a day for　the day of chemo and several days after,　I drank no alcohol during the treatments. Things tasted different while I was receiving my chemo. I love dark chocolate but couldn’t even look at it without nausea. My favorites were pasta, ice tea, cucumbers, strawberries and anything that tasted good that day. My husband took me out several times to eat; my entire meal went in a box to take home because one look and I lost my appetite. I thought of this as a forced weight loss program but I actually gained 7 pounds (I’m sure the steroids had something to do with the weight gain, and the extra deserts).

My coworkers were great; they watched out for sick people while I was at work and kept them away from my office. They also treated my family to dinners twice a week for close to 4 months, many times the food was enough for several meals. The meals were great and I always felt like eating what was delivered. This was such a blessing for my husband and me because my husband does not cook. He did learn to make my favorite “real whipped cream” on strawberries.

I felt like I ran a marathon some days and I was just lying on the couch. I rested but it was important to me not to stay in bed all day, I needed to feel as normal as possible. I took one month off during the middle of my chemo due to fatigue. The Oncologist monitored my red blood counts (as well as other blood work) to make sure they were normal. I received Arenesp many times to keep my counts normal. To combat fatigue I tried not to get dehydrated. My husband took me out for rides at night. My friends and family visited. My friends took me out to lunch (when we knew my blood counts were ok). It helped to keep a regular routine as much as possible. Although I could be tired I managed to walk in my first “Susan B. Komen Race for the Cure” 2 days after receiving chemotherapy (I only did the 1 K that year).

I had hot flashes; this was in addition to the heat of the summer. We purchased an air conditioner for the living room and I tried to stay cool. Meds did not really make a difference.

I was very fortunate to have no infections, mouth sores, diarrhea or constipation during my treatment. I was ready with all the treatments just in case. I was lucky enough to visit the Dentist just before my chemo started and he gave me a fluoride rinse to decrease risk of some of the oral issues. The only problem with this was the edge of nausea I already had was intensified with the trays to put in my mouth with the rinse and I usually gagged on them.

I was fortunate to have over 400 hours sick time accrued as well as short term disability. I took about a month of work off and had a great boss and staff who allowed me to work from home and/or work on site when I felt up to it. I was fortunate to have a job that I could go to on my days off from chemo and throughout my radiation treatments. My chemo was always scheduled on a Friday to make it easier to feel better for work. I was even allowed to travel for work on a few occasions.

Family and Friends:　 It can be difficult to predict how family and friends will react to a cancer diagnosis. Some may be incredibly supportive while others may not feel as comfortable with the diagnosis or how to deal with their own feelings. It does not mean they do not care, it may mean they don’t know what to say or fear saying the wrong thing. It is normal for some family or friends not to　know how to deal with the diagnosis. Some family members will deal by　ignoring you! My husband was “my strength” and treated me as if I were a queen (he always does, he is a very special man). He was always there for me. We celebrated our first Anniversary the day after my lumpectomy surgery by going to one of our favorite Bed and Breakfast for overnight. They let us reschedule with one days notice to push it forward by one day, on Memorial Day Weekend. My husband went to appointments with me, went to every chemotherapy visit and kept me busy when I took time off from work (it was not fun for me to not be my usual busy self). My husband was my strength during this time, one day when I was very tired and having a pity party because I had no strength my husband said “you concentrate on getting better, I will be your strength”. My 20 year old son was very involved with provider and chemo visits. My 22 year old daughter was involved from the periphery; she kept me supplied with treats and pink Crocs. My sister (the OR nurse watched me throw up, for 12 hours) and kept me supplied with fun caps she made and crazy socks. My mom hung up when I told her I had cancer (so I wouldn’t hear her cry). My dad called right back. They visited several times but it was difficult for my mom. My friends kept me busy with lunches and calls. Friends from Virginia and New Hampshire traveled to visit me. Their calls were incredibly important and helpful to keep my spirits up. My friends and family sent many cards throughout the 6 months of treatment. My favorite 2 cards were from my brother in law which stated “life is not always fair, sometimes it really sucks” and my birthday card to my sister on her fiftieth birthday “I want your hair, no I want yours”. One friend from years ago sent me cards weekly. The cards were great to look forward to. One co worker sent me a water feature that was incredibly relaxing.

The next List (I had to have some fun):

My personal top ten fun reasons to get chemotherapy:

You can ready for work quickly, you don’t need to do your hair, you get to wear great hats, scarves, caps and bonnets

Don’t have to shave your legs

Your children will do what ever you ask (maybe)

Your husband will treat you like a princess (mine already did)

Your don’t have to cook/clean/or do wash (unless you really want to)

You get to avoid any occasion you really don’t want to go to (your blood counts might be low)

You can eat anything that looks good (you can even gain weight)

You have a good reason not to exercise (I’m too tired)

You can sleep in any time you want

You have all the time to do those things you usually don’t have the time to do i.e. watch soaps, shopping (but you might not have the energy to do them)

　Radiation: This was fun, where else can you get 4 tattoos in an afternoon. I now have more than my daughter. I was fortunate not to have any burns or fatigue and my appointments were worked around my work schedule. Try finding metal free deodorant that you can use during the 6 weeks of your radiation.

I met many great people while I received chemo and radiation. I frequently talked to other patients while in the waiting room. That can always put my journey in perspective, I saw people with such incredible strength in their own journeys. In Radiation (10 minute visits) patients would travel 2-3 hours 5 days a week for a few minutes of treatment and they worried about me when they thought I was sick when I changed my appointment to a different time for one day. I found cancer patients and their families frequently willing to share their stories.

More of my lists:

What happens when treatment is done

Celebrate after each milestone (surgery, chemo, radiation, and any others you can think of. I went to Campobello, New Brunswick Canada, the Panama Canal, and on a zip line in Jamaica. Goals and celebrations are something to look forward to.

Follow-up visits with surgeon, Oncologist, and Radiation Oncologist, keep them, go when they are scheduled.

Mammograms and ultrasounds, again go when they are scheduled.

Encourage others to do monthly self breast exams, get their mammograms and have regular checkups.

Dealing with the emotional aspect of reoccurrence.

Get on with your life and use what you have done to help others. I am a member of Maine’s Susan B. Komen Race for the Cure in Bangor, Maine committee. I have also had a team for the last 3 years “Keeping Abreast”. It focuses on keeping current with your breast exams, mammograms, and doctors appointments as well as keeping current with any new information on breast cancer risk reduction.

I am a nurse and wanted to talk to other nurses about things I found important to tell patients and be aware of to help patients.

LISTEN　to what patients are saying.

Find out what are the most important things for this patient to be comfortable during their treatment.

Answer questions fully to the extent　desired by the patient.

Explain all procedures and treatment.

Encourage patients to write a journal about their journey with breast cancer.

Steer them to the correct resources so they don’t have to go through layers of people or calls to find the correct person to help them.

Let them know about support groups and breast cancer survivor events.

Support groups at their hospital, cancer clinic, YMCA, etc.

Race for the Cure

“Look Good, Feel Good”

Work around patient’s schedule when possible, they may be trying to work during their treatment, have childcare or need to schedule rides to treatment.

Offer realistic support:

There is research and work to find a CURE; I truly believe it will be found.

Decreasing risk of reoccurrence is a goal of treatment.

There is no blood test　to detect.

Assess emotional status and support systems.

Encourage questions. Have patients write questions and have available for the next visit. Make sure they know who they can call before if they have a question.

Give information in writing and assess　the patients understanding of the information they are given.

Treat patients with a medical background the same as other patients. Don’t assume they know the information.

What I did to help myself.

Had a family spokesperson (my husband) to answer/screen all those calls from friends and family so they only need to talk to someone when they feel up to it.

Accept help from friends and family (it will make them feel better) even if it is hard for me.

Have a support person: spouse, family, friend, nurse, other patients go to appointments, chemo, etc.

Use your faith/spirituality

Get up and get dressed, everyday.

Don’t stay in bed, get some exercise.

Accept help; let friends know what you need/want, this is not always easy, I don’t like to ask for help.

Let friends know when it is a good time to visit you.

Continue to work if possible, flex time, ½ days…..

Continue normal routine as much as possible

Keep children involved in the journey.

Have positive attitude and outlook, some days this is difficult.

Avoid chat rooms, go on to sites that will give you correct information.

Talk to other breast cancer patients.

Have fun, get away for the weekend.

Take a list of questions, a support person and a pad of paper to provider visits.

Dentist appointment prior to the start of chemotherapy.

Keep humor in their life.

PLAN A CELEBRATION AT THE END OF CHEMO AND RADIATION

How can friends be helpful (my sister helped me with this list (remember I don’t like to ask for help):

Listen to what their loved one wants/needs. They may not always be able to express what they want.

Babysitting (my children were grown).

Take to Dr. visits, chemo,　radiation etc.

Just a simple visit to give　the family a break, keep visits short.

Use a point person to organize visits and　to relay info.

Think positively, get over the I’m Sorry　phase.

Cook meals, grocery shop or clean their house.

A trip to the Mall or Movies or just a ride.

Anything to get their mind distracted.

Respect their privacy.

Gift Suggestions: (check with point person to see if they need anything special or can’t have certain things)

Plants

Cards

Earrings　　　　　　　　

Fun Socks

Meals

Fun food, chocolate, fruit, specialty　drinks

House cleaning

Hats

Books, tapes, dvd’s, music, movies

Massage

Anything Fun

　Things I got tired of hearing: (people mean well, Please know these are not bad to say but can sometime be too much)

“I’m so Sorry” (everyone says this, it just got to be too much)

“You’re looking good” (did I look bad before)

“Is it all gone?’ (I hope it is)

“What are your odds” (Not a fair question)

“Do you do a monthly self breast exam?” (No, I do them weekly, sometimes daily)

“What did you do to your hair?”

“I’m sure everything will be alright” (How do you know)

Things to be grateful for (there are many):

My spouse, family, friends, and co-workers support.

My faith

The great new friends/acquaintances through this journey. The sad fact is that I have known too many people that have had breast cancer and not survived.

Negative margins and nodes

Great meds to combat the nausea and other side effects

No major side effects from the chemo or radiation

Completing the treatments without interruption

Enough sick time to cover my time out of work

Great insurance coverage

I am a breast cancer survivor (My new Maine breast cancer vanity license plate: SURVVR)

I never really thought “Why me, why did I get cancer”. I believe everything has a reason and one the reasons for me is to share my journey and what I learned with others. I have spoken to medical groups and women’s group. It is important for me to share my experiences and what I have learned and about the fight to find a cure. Another side reason is the collection of caps/hats/scarves that I collected and to date have shared with 5 other very special cancer survivors during their Journeys.

I am also on the Susan B. Komen Maine Race for the Cure Committee, I think it is so important to get the word out and support those (and their families and loved ones) that did not win the race or battle and those survivors that were fortunate enough to win the fight. We all need to do whatever we can to support causes that will help people that cannot afford screening still be able to have mammograms and also to raise the funds necessary to do research to find a cure for cancer so others do not have to take this journey or if they do it will be with all the research possible to help them be a survivor.

Thank You so much for reading my story. Karen