Sometimes I find things and it is for informational purposes only. As a breast cancer survivor, we move on through life but there remains the question in the back of our mind if there could be a recurrence somewhere in the future. Normally, it is not an everyday thought but every time you go back for your scheduled checks it hits back on the radar. One misnomer is that your risk of recurrence continues after 5 years. We have all heard about anti-estrogen therapy that may benefit some women. You physician will be able to tell you what strategy is best for you and also the benefit and side effects. This is something to ask about. You also need to assess what your concerns are including your personal risk, what medication should I be taking, for how long and can this help prevent the cancer from coming back? It is important to check your insurance coverage and be informed. You are a part of the process and you need to have knowledge on your side. As a breast cancer survivor, you can find helpful information and make informed choices and learn to make each day a great day! S
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What do you need to make decisions regarding your care and what decisions need to be made? So often you here, well what did you do? Or you might also hear, "if I was your wife, what would you recommend" to the doctor. Sometimes it makes me feel like what happens when you recommend a certain restaurant. That particular night that I was there, I had an outstanding meal and it tasted great, good company, and great service. It could be on another night, the experience might not be the same or my likes and dislikes are different than yours and my expectations are my own. So how does a healthcare professional help you make the best decision for you?
First and foremost, listen. Listen to what is being said and what you see. As for you being the patient, express what your needs are. Patient education has to be delivered many times and many different ways in order for the patient to "GET IT". Some of the information is totally lost as the only word that was heard, was Cancer! Don't think that your spouse heard anymore than you do as you sit there listening to the doctor explain what is going on and what is going to happen and what lies ahead. Decisions can change too as more information is gathered and more results come in. It means more than just giving them the information of what the standard of care it, it is allowing discussion and looking at what the patient needs are as well as the family. This conversation should provide meaningful communication and whether or not there are choices to be made and what are the patient rights. This is an evolving process for the patient and the healthcare provider and listening is one key aspect. I know for myself that at one point during my chemo treatment, I had a planned trip with my daughter for her senior year that had been in the works for three years prior to my diagnosis. The options were discussed and possible outcomes and what the ramifications where. A decision was made but with all parties involved and after much discussion and it was something that worked for all of us in the end. Ask your questions and don't be afraid to look to alternatives if you just aren't comfortable in what is planned to be implemented. Be part of the process and invoke the decision making with your doctor and your family. This will make it a better day! S I have been going to health fairs as long as I can remember, as a provider/educator. I have not ever really attended one for my own benefit. I am not sure what your perception of a health fair is or what you would like to gain from it but it is an interesting prospect. Most often there is some kind of freebe and people are anxious to get this item and more. Some pick up the reading material and some will actually talk about their health issues whether it is related to your expertise or not. Some avoid eye contact and try to get past without you talking to them. It really doesn't matter the age, as they all have many of the same attributes.
I enjoy talking to people and love to teach and help with issues that I can help with. At a recent fair at a local university, I would make eye contact and talk to the students to get them to come over and thenwe had a short quiz that we would go over the answers to try and provide some education and awareness on the matter. The kids were great and quite amusingly, they avoided the candy on the corner of my table since it was "A HEALTH FAIR". They were surprised by some of the answers and all thanked me as they left. We laughed and talked and it was a great connection. I will also tell you that there are other vendors that sit there and if they don't reach out, no one stops. Everyone needs a connection to take the time to listen. I got to do a lunch and learn at a local business and that was fun and personal as I could be right there and talk to those in attendance and we could discuss concerns and issues and I listened to their comments and guided them as best I could. I also got lunch out of it and that was nice too. It is nice to get out of the building and interact with people that have concerns but not immediately dealing with the "C" word. I treasure those times with those patients that are dealing with the imminent problem as well but there is a different gravity to that conversation and supportive role for me. Reaching out to others is the key, we all need to be recognized and supported from whatever playing field we are coming from. As a professor once told me, "there are no dumb questions." I know that you have heard that all before but I would also venture that at some point in time, you had questions that you were too embarrassed to ask. The only way we can help is if we know and since my mind reading skills are not up to date, stop and take a moment be it at a health fair, a lunch and learn, an education program or by making a call. We can help! Make it a better day! S I received a wonderful wall hanging after the presentation of The Pink Ribbon Overdose play that I have since displayed on my office wall. I don't know who authored it but I do want to share it as it is something I will always treasure.
What Cancer Cannot Do: Cancer Cannot Shatter hope Cancer Cannot Corrode Faith Cancer Cannot Cripple Love Cancer Cannot Destroy Peace Cancer Cannot Kill Friendship Cancer Cannot Silence Courage Cancer Cannot Steal Humor Cancer Cannot Erase Memories Cancer Cannot Stifle Laughter Cancer Cannot Conquer the Spirit Cancer Cannot invade the Soul Cancer Cannot Erode Confidence This month is breast cancer awareness month but I propose it is Cancer Month and that we not only look to awareness but also prevention and research. Hoping that answers are on the horizon and praying no one else will have to deal with it in the very near future. Make it a brighter tomorrow. S Treatment decisions can be overwhelming to say the least. You are not the expert and getting on the internet can just be overwhelming. I would no more replace a transmission in my car than figure I knew what was best as far as my treatment. I can't compare myself to anyone else that is going through the same thing because there are just too many differences. It is important to find a team you are comfortable with. Know that you do have choices. There is nothing wrong with asking for a second opinion and everyone should be accepting of that or you need to find someone that is. Be as fully informed as you can but again that is with experts, not your sister's mother-in-law's aunt's second cousin. The internet is not your best friend. There can be inaccurate information or what you read may be interpreted wrong. Sometimes you read medical information and it might as well be in Japanese for the amount of sense it makes to you. Decisions are never easy. I have chosen to err on the side of caution and have exercised that option. My mantra is and has been, I don't want to be ten years down the line saying should have, could have, would have. You find what is comfortable with you and pursue the answers you need. Once a plan is in place then it is important to follow through to completion. One person I know, decided not to finish what they started, not a good option for sure. I hope that whoever reads this today, that it helps in some way and makes it a better day! S
Remember when you were growing up and grandparents and aunts and uncles would send a gift but either you had it or didn't need it or didn't want it but nobody wants to look ungrateful. As the years pass and you get older, you started getting money and that works but you miss the special touch and sometimes laugh related to the white blouse that grandma sends every year or the socks that your uncle always sent.
Holidays are so stressed filled for everyone. We all want things perfect and the "Norman Rockwell" scene to be a part of the holiday. Life is busier than ever and kids are all over the world. There are mixed families, blended families, families with three or four sets of grandparents and even a few great grandparents. I used to be able to keep up with cards and gifts but those days have past. Yes, I realize that it is about being together and not the gift but I always liked the look of surprise on my kids faces when they opened a gift, even as adults. Now, I find that just trying to think of what to get them puts me in a tizzy. Sizes, I have no clue and what do they have or need? Money seems so impersonal but do they really need another toy or sweater? Back when we were growing up we also did something that was really fun in the summertime as all of us were together. This was the most fun of all. We would get a certain amount of money and we went to a store similar to Dollar General and the like and bought Christmas gifts. We had our Christmas in the summer when we could all be together. We laughed and it really took the sting out of trying to figure out what to get someone. It was really fun to see what the little kids in the group would think would be appropriate for each person. Usually before the day was over, the gift was broke or lost but we sure laughed in the meantime. Dealing with an illness on top of holidays is excruciating and the burden of trying to have the perfect holiday goes out the door. Cookies aren't going to get baked and the thoughts of a ham or turkey cooking may be repulsive. What with this all approaching so fast and all the stores that have holiday decorations up months before the event just tips the apple cart. It really does come back to, just being together and enjoying each moment and looking for laughs along the way. It is ok to laugh in the face of Cancer. Sometimes it is all you can do and may be the best medicine anyhow. So as these events hurry in, enjoy and find the best in each day. Make it a great day! S Some people live to work and some work to live. Where do you fall in all of this? That is something that hits home with me as my retirement years are in the not so distant future. I spent a lifetime in my career and continued to work during treatment and that worked for me at the time. It kept me busy, focused, and pushing. I would do it the same if it happened again. Too much time alone and or isolated is not good for anyone regardless of your health or finances. When you aren't feeling well, it can be difficult to get out and take part in the world but I have learned it will go on with or without you. Sometimes you have to just push to make those connections and without fail, you will find that you will be mentally better for it. It makes me think of all those women that were in the workforce full time and decided to have babies later in life and now have a whole different schedule. I wonder if it is sweeter for them or more difficult finding your comfort zone in it all and feeling successful. I laugh as I look back and remember my mother, who was always working. We had a camp and you went up and cleaned and washed and scrubbed and there was fall cleaning and spring cleaning and window washing (even though it was camp) and we did the same at our house and my grandmother's. We often delayed something fun until all the dishes in the sink were clean and done and you never got out of bed without making it and we ironed everything including sheets, hankies, underwear, pajamas. It always seemed like such a waste but I can also say that I remember the crisp smell of those sheets that hung outside and then were ironed and put on the bed. We flipped mattresses and washed down walls and all curtains and drapes were cleaned at least twice a year.
Admittedly, I am my mother's daughter but some of the zeal has passed and I am not as staunch as I once was, nor do I have the energy for all of that activity. Windows get done, when I get to them and I guarantee that it will rain the day after I finish. I have gone to bed with some dishes from the evening in the sink because the dishwasher is still going but the bed is always made, fresh towels each day, the bed is changed weekly and more of all those mundane tasks. My life does not gain satisfaction from doing all of that but I like the looks of it when it is done. I hate clutter and it is difficult to look at what hoarders deal with. There were homes that I did nursing in that I wouldn't even put my nursing bag down and others you could eat off the floor. So what is this all about? It is where you are and what is important and what are your needs today. It may change through your life but staying true to what you believe and remembering where you came from will keep you focused and grounded. We weren't rich and we weren't poor but we had a respect for hard work, and the value of a dollar and that your word is the best thing you can give someone and your time. So having said all that, I hope you make it day great.S My grandmother passed when I was in high school from pneumonia after breaking her hip. I remember running to the hospital to see her and they turned to me and said she had passed. She was so special to me and I was her "little girl". When I look back though, I remember night after night putting on a blow up tube that went the length of her arm to reduce the swelling after having a mastectomy for breast cancer( obviously due to lymphedema). I didn't think much about it over the years except how hot and uncomfortable it must have been to have that plastic sleeve on and try to sleep with it on. I saw her disformed body but that didn't phase me either as that is what and how I knew her. I wondered what her thoughts were when she went through it as it was certainly before I could remember. She had always looked that way to me. How did they diagnose it and confirm that it was cancer? What kind of treatment followed. It wasn't discussed, ever. They didn't have mammogram, MRI, and so many things that are now just part of the normal when investigating lumps.
My mother was rather well endowed and I recall numerous times that she had biopsies for suspicion of breast cancer but it always came back that she was fibrocystic. I too am fibrocystic and really hadn't put much stock in my grandmother's diagnosis as I wasn't completely convinced that she had breast cancer due to the testing methods at the time and the fact that we(mom and myself) had/have fibrocystic disease. I consider that this may be part of my denial or am I just rationalizing it all? I am not sure where I stand on all of this but know that my BRCA test came back negative so it is not genetic but also realize that only roughly 10% of all breast cancers are genetic so my kids are not out of the woods for sure. I impress upon them to do their check ups and to take care of themselves. I hope that some day we don't even have to talk about this, not out of shame or denial but rather that it has been conquered. Make it a great day! S Got through the weekend and PINK RIBBON OVERDOSE. It went well and was well received and the actresses did an awesome job in portraying women that were going through breast cancer. It was great to work beside these amazing women and under the direction of Tom Hall and Irene Kipp.
Now this weekend offers yet another option. The St John Missionary Full Gospel Baptist Church presents the 12th Annual Sharon Ogden Breast Cancer Awareness Breakfast on Saturday, October 18,2014 at 9AM. This will be held at the Lew Davies Community Center, 1034 Park Avenue in Meadville, PA. The guest speakers include: Orealia Gorden, Crystal Epps-Russell, and Ruth Modzelewski. This program provides Breakfast, education, and on-site mammograms, pneumonia shots, blood pressure and blood sugar checks, door prizes and more. This is Free and open to the public! Call for reservations or to schedule a mammogram : 814-336-2965. Hope to see you at this great event! Makes it a great day! S I am in a play this weekend called "Pink Ribbon Overdose". It has been fun and interesting and challenging. One night I got so giggly I just couldn't stop laughing and messing up. Now realize I don't have a big part...in fact, I have four lines outside of the intro at the beginning and singing with the group at the end. I have sat through rehearsals and tried to show comaraderie by being present the entire time. Some of the subject matter hit awfully close to home and yet, I found that it is ok to laugh. I laughed during treatment, there are some things you just have to laugh at. This play is not out to downgrade the seriousness of cancer and it is written by women that have actually experienced it first hand. The gals playing the different parts with me this weekend, have not had the experience and are grateful for that but they have all relayed the amount of compassion and learning and insight that has transpired while practicing for the play. Yes, there are moments, events and outcomes that aren't funny when facing breast cancer but sometimes hope comes in different forms and laughter is one of those forms. One of the lines is about all the pink merchandise out their including a pink ribbon dog collar and the response if," and that dog is so aware," Now that may not sound so funny out of context but I bet I could get you to name twenty things of merchandise in the next 3 minutes that have a pink ribbon on it and therein lies the funny part. I hope that it is well attended and that we have fun with it. All monies will go to support our benevolent fund because cancer isn't funny and a patient has enough on their plate to get through the treatment and the bills that add to their distress can be beyond belief. The benevolent fund is there to help to pay for the gas you need in your car to get to treatment or the heating bill that is waiting for you or even your house payment or lymphedema sleeve. Sometimes salvation is found in humor when everything else in your life is so difficult. Make it an awesome day..S
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AuthorMy name is Sue Kilburn and I am a clinical nurse breast cancer educator at the Yolanda G. Barco Oncology Institute in Meadville, Pennsylvania. Archives
March 2015
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