SUE - a breast cancer survivor
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  • My story
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  • 31 stories for 31 days
    • Day 1: I got the news >
      • Day 2: Those crazy 4 men
      • Day 3: Chemo: What a wonderful time of the year
      • Day 4: Bald
      • Day 5: Seroma, hematoma, fudgicles...I am swollen!
      • Day 6: I feel pretty, oh so pretty!
    • Day 7: Weary and tired! >
      • Day 8: Where did my dreams go and did they get lost in Cancer?
      • Day 9: Germany
      • Day 10: Diversion
      • Day 11: Duke
      • Day 12: Did I ever tell you waiting rooms suck?
      • Day 13: Did I ever tell you my dad died of CA?
    • Day 14: My best friend’s sister >
      • Day 15: Graduation
      • Day 16: Book club
      • Day 17: Surgery
      • Day 18: What is it about Pittsburgh….?
      • Day 19: Radiation
    • Day 20: Now that the treatment is over >
      • Day 21: Toby,
      • Day 22: Reconstruction or not
      • Day 23: Prosthesis or not?
      • Day 24: Recurrence
      • Day 25: Nothing Special
    • Day 26: What have I learned? >
      • Day 27: Impact- Activist
      • Day 28: New Position
      • Day 29: Life will never feel or look the same.
      • Day 30: Reflections
      • Day 31: I'm here to help
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Casting for recovery

3/31/2014

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2014 retreat season starts this weekend

This Saturday, April 5, 2014 kicks off the beginning of the 2014 retreat season. Casting for Recovery is excited and thankful to begin another year of helping women who have been diagnosed with breast cancer connect with others and learn the therapeutic sport of fly fishing. This will be the best year yet thanks to the amazing volunteers, staff, supporters and most of all the participants! Watch out 2014, CfR is ready to show you a great time and catch some big fish!

To date CfR has helped more than 6,500 women, if you would like to help make that number grow please visit here to donate.


CfR skiff boat roaming the Bahamas

BlackFly Lodge, a Bahamas based fly fishing operation has commissioned a pink skiff to raise awareness of breast cancer and CfR. This new boat will be used for guided fly fishing trips and will feature the Casting for Recovery logo.

Clint Kemp, managing partner of BlackFly Lodge, called on East Cape Skiffs to build the custom boat as a tribute to his aunt, Rochelle McCabe, who has just completed her breast cancer treatments in Orlando. The boat will serve as a constant reminder of the struggle endured by many and a source of hope that one day a cure for breast cancer will be discovered. BlackFly Lodge also donated a fishing trip that will be auctioned at CfR’s annual Cast One for Hope national fundraiser in Montana in October.



AmazonSmile is giving extra cash to CfR TODAY

Shop with AmazonSmile today, March 31, 2014 to earn an extra $5 to go to Casting for Recovery with every purchase. This promotion is in addition to   the regular donation of 0.5% of the purchase price every other day. Up to $1,000,000 extra will be donated to eligible charities as a result. If you are not signed up with AmazonSmile register today and all your purchases throughout the year will support CfR.

All you have to do is sign up and shop. Same products, same prices, same service.






Looking for other ways to support Casting for Recovery? 

  • Mace Cares
    Mace Cares will donate a portion of the proceeds from Mace Hot Pink pepper spray products to support CfR. We are excited to be recognized by them in 2014 along with other notable charities.
  • Cars for Breast Cancer 
    Have a car, trailer, snowmobile or tractor you have been waiting to get out of your driveway or garage? Cars for Breast Cancer is the nation's premier vehicle donation program that supports breast cancer research and awareness and is a great option for that car you want to get off your hands. 
    Please donate your vehicle online and chose Casting for Recovery as your preferred charity.
  • Sage Grace Rod 
    The GRACE rod from Sage is the next generation pink rod offering from Sage and a portion of the sale of each rod comes directly to CfR. Check out details here.
  • Donate Now!
    Make a secure online donation at any time. Every dollar helps.

Just as an added highlight, I was privileged enough to participate in a weekend with Casting for Recovery and it was awesome.    IT is such a great weekend being with others that are or have gone through the same things I had and also the chance to step out of my comfort zone and learn a new skill.  Who knew I would like fly fishing?  It was a great support system that grew from the first moment we met each other.  It does make it a great day! Go online and l






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What is the difference between palliative care and hospice?

3/28/2014

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  What is most interesting when this subject comes up is that they are in fact very similar.  The truth of the matter is that hospice care availability is far more prevalent than palliative care. Many times palliative care is a stepping stone to Hospice.  Palliative care is a healthcare team of doctors, and nurses and other professionals  and includes the caregivers.  It is a way of administering or overseeing  most of the ongoing comfort-care patients receive.  Truly the care could be administered at home but most often it is at a hospital or extended care facility or nursing home.  Hospice is normally looked at a terminal or within six months of death, program  Palliative care has not time restrictions and as previously stated it can be  preceding hospice but not necessarily always.  It is often a means for better pain control and monitoring.  Hospice can be administered at a nursing home but most often it is in the patient's home or a hospice house dedicated solely to hospice patients. Palliative care is very often an adjunct or supplement to  traditional care. Palliative care is most often covered by your regular medical insurance but often each items is billed separately.  Hospice most often concentrates on comfort rather than pursuing aggressive treatment.  The statement of Quality care and time is most often used in the Hospice setting.  Pain control is paramount and achieving a level of comfort that allows the patient to deal with the practical issues of dying.  Many hospice programs are covered under Medicare.  Some Hospice programs have subsidized care for those that are economically disadvantaged or for those patients not covered by insurance.  It is imperative you do check into the insurance aspect but of utmost importance is what are the goals for the patient in question.  It is important you talk to your healthcare team and also to talk to your insurance provided and make informed choices.  Often patients do not want to go into hospice as the thought is that we are giving up on them but the quality time that they gain with their families is what is a determining factor.   Now, I don't feel this is a depressing subject as I used to work hospice and I can say it was very rewarding to be allowed into a family's life and to help impact the transition and make a difference. Too often families wait till a day or two before the patient passes and it is time that is lost that could shore up the holes in relationships and the comfort that can be provided and the peace that they all gain in this stage of living and dying.  I hope this was helpful and as always, make it a great day! S
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News? 

3/26/2014

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New This Week The American Cancer Society estimated that more than 174,000 cancer deaths can be attributed to tobacco use and approximately one-quarter to one-third of the 1,660,290 new cancer cases diagnosed in 2013 were directly related to poor nutrition, obesity, and lack of physical activity.

Now, I do believe that you already know the importance of the information listed above even if you didn't know the exact numbers.  What I am going  to say to all of that is what are you doing about it?  There is no quick fix, no magic drive through lane, no special pill, no fairy godmother to wave a want.  What are you going to do about it?  I am sure that there is something in that list that you can address for yourself so that you don't become a statistical number in The American Cancer Society database.  There will always be cigarettes even if the make them illegal, there will always be poor nutritional choices and people that will take advantage of them, and there will always be inactivity and obesity.  To see all the motorized scooters makes me wonder what or how people got around before the advent of the scooters.  I understand if you have health issues that keep you from walking but even with health issues you still need to get up and move.  My heart aches every time I see someone that is confined to their home because they can't get up out of their bed and move.  Each of us needs to do our own reality check and strive to improve each day. We may falter and grow weary but we need to pick back up and face the new day with new determination that maybe it is one more step today or one less cigarette or one less pop.   Together we can make a difference for ourselves rather than a lifetime of dependency and poor health.    I don't ever want back on the board and a number for The American Cancer Society. Find a buddy and Make It a Great Day! S


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Wigs

3/24/2014

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  I am proud to say that I do work with wigs.   Over the past few years I have been fortunate to not only get gently used wigs but even brand new ones.    The better news, is that they are free, at least the ones I have here at the institute.  I wash each one as it comes in and let them air dry and then into a ziplock bag until someone gives it a home.  I will pull several out (if I have the color and length) and have the patient try the wig on.  We have done silly ones as well and have found that it is quite fun when you are in the midst of a difficult time.  Those that have been tried on but rejected go back to my workshop where I was them again and let them air dry and follow the whole routine again.  I asked a hairdresser if I was covering all the bases and she concurred that I was doing it right.  You often see two or three heads of hair sitting by the sink in my office waiting to dry and to be recycled.  There are a few times, that the wig may have to be retired but for the most part, I have been very fortunate in what I have received.  Myself, when I was without hair during chemo, yes, I had a wig but it worked out that I only wore it about 4 times and probably not for more than a total of 60 minutes.  I was more a scarf girl myself.  It is so fun to have someone put the wig on and feel like that have their identity back.  At this time I have about 3 totes full of wigs of various lengths, styles, colors, and sizes.  I really try to get an idea of what I can bring to the table that will make the patient the most comfortable and then we try them on.  Often their chemo nurse will come over and give a much needed review or nonbiased account of the current wig.  Husbands and significant others seemed relieved as well as that puts their love one back to the normal they knew before all of this.  This ordeal can be trying and difficult but if we can make it an adventure, then the tensions start to disappear and the smile returns.  So,
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New ORAL CHEMOTHERAPY

3/19/2014

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  As with anything new there are new issues and concerns as we start new processes.  Years ago, (Yes, I am that old) our big concern was TB and compliance in taking oral meds.  Patients were required to come into the office in order to make sure that they were taking the drugs and that  what side effects they experienced were closely monitored.  With the advent of all the new oral chemotherapy drugs, much presents as the same issues.  Patient and family education are vital in making it a successful regimen.  There may be medication diaries and  specialized prescription instructions as well as dose monitoring.  There would need to be follow up phone calls and continued education.  There will be common barriers but with a multidisciplinary approach and collaborative sessions, these concerns should be able to be addressed.   Most places have specific policies, procedures, and resources for these patients.  Documentation as always will be paramount.  Should medication be delivered to the home or the health care facility for disbursement and how it will be monitored continue to be part of the plan to be developed.   When a patient comes in for IV chemotherapy, there is the opportunity to assess your patient and teaching and review of outcomes and interventions.  My concern for oral treatment is that the situation is presented to the patient and they often are not sure what to report if anything regardless of the teaching.  Oral drugs are expensive too and we want to make sure that we are anticipating the delays and cost factors and implementing ways to avoid any difficulties.  In many instances, it may actually take more time and documentation to adequately take care of a patient on oral chemotherapy drugs.  All in all, there remains good and bad features and a learning curve for us all, patient and healthcare team as well.   As for being a former patient and on a daily drug for five years post treatment and also being a nurse, there were times that I even had an unintentional slip so what does that say for the patient with no medical background?  Good day but where did the sun go? S
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St. Patrick's Day

3/17/2014

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Today being St. Patrick's Day, everyone is Irish.  It brings smiles to faces and a breath of fresh air to spring. Our therapy dogs even come in with something green on and for a Monday, it is not a bad way to get through the day.  I had to laugh to myself this morning as I came to work and saw a Full Moon and for us in the medical field, that always lends itself to some added confusion and happenings.  There is something reassuring in knowing that we will have boiled dinner tonight and that traditions continue.  Now I am not a beer drinker and I will readily admit that the green beer would entice me even less but again it has broken the winter spell for today  and maybe it is just me, but it seems like more people are smiling.  I have found over the years that it is not the big things that make such a huge difference in our lives but the little things that give our lives meaning.  Just someone that sends a note and lets you know how you helped or maybe the heartfelt thanks when someone delivered a meal to your own family in a much needed time. I am not a big government person and that is not even talking politics, it just means that if we reach out and help someone else everyday in some small way that you get back what you give two fold and we all feel better in the end.  I love paying for the guy behind me in the drive through lane.  These random acts are what truly contribute to a happier, healthier lifestyle.  So, When Irish Eyes Are Smiling.... it is contag
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GOOD RESOURCE from Livestrong and something that I needed to re-evaluate, how about you?

3/14/2014

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Tips for Eating More Plant Foods
Without a doubt, research tells us over and over again that those consuming more plant foods are the healthiest and leanest. A diet based on plant foods has been shown to help prevent and reverse symptoms of type 2 diabetes and heart disease and reduce our risk for cancer. Plant foods that provide health benefits include vegetables, fruits, legumes (beans, peas and lentils) and whole grains. We know we should eat more of these healthy foods, but how do we do it with our busy lifestyles? Below are some proven tips that you can start using today to get more plant foods into your diet.
 Go to frozen vegetables & fruits for convenience. They are nutritious and fresh!
 Add a handful of frozen blueberries, strawberries or blackberries to your cereal or oatmeal.
 Eat a high-fiber, whole grain cereal for breakfast. Choose a cereal with at least five grams of fiber per serving.
 Add sautéed vegetables to your breakfast scramble.
 Choose whole grain, high fiber breads. Choose bread with at least three grams of fiber per serving. Read labels; if you see the word "enriched" in the ingredients list, it's not whole grain. Instead, look for words such as "whole grain," "stone ground," "whole ground," "whole wheat flour," "whole oat flour" and "whole rye flour."
 Snack on baby carrots and hummus or other bean dip. This will give you both vegetables and legumes (beans)!
 Eat low-sodium bean or lentil soup for lunch. It's quick, convenient and it counts as a serving of beans and/or vegetables.
 Reach for canned beans for convenience (Eden Organic brand does not use BPA in the lining of their cans). Rinse beans well (until water runs clear), and sprinkle them on a salad or add to soup for added protein and fiber or use as a main dish.
 Use whole grain pasta instead of white pasta.
 Make a homemade pizza crust with whole grain flour. Even wheat germ can be added in for great texture and a hearty taste.
 On your next homemade pizza, substitute shredded carrots for ½ of the cheese, and substitute the other half of the cheese with extra sauce.
 For a tasty salad, steam several cups of frozen or fresh vegetables (cauliflower,
carrots, broccoli or bell peppers) until tender and crisp. Add ¼ cup of low-fat
salad dressing and drained chickpeas. Mix well and refrigerate until chilled.
 Improve the nutritional value of your family's favorite main dish casserole by
adding one or two cups of frozen or fresh mixed vegetables. For example, try the
veggie blend that includes cauliflower, broccoli and carrots.
 Stuff your favorite potato with healthy toppings such as stewed tomatoes, green
and red peppers, onions, broccoli and/or your favorite salsa. Try a sweet potato
instead of a white potato to get even more nutritional value!
 Get acquainted with green leafy vegetables. Try adding a few leaves of kale,
chard, mustard greens, collard greens, dandelion greens or any other green leafy
food to your regular salad.
 Aim to have at least three-quarters of your plate covered by vegetables, fruit,
whole grains and legumes.
 Focus on variety in your plant foods. The more color you eat, the better. Try to eat
all colors of plant foods including green, red, yellow, orange, purple and white
foods. Try leafy greens; red peppers and strawberries; squash and lemons; carrots,
oranges and sweet potatoes; blueberries, purple cabbage and eggplant; and
cauliflower, garlic and onions. The more color and variety, the better.
Makes it a better day!
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Sometimes....

3/12/2014

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Sometimes you just need to talk to someone who understands what you are going through.   You have your list of Primary Care Physician, Medical Oncologist, Radiation Oncologist, Surgeon, Pharmacist, Nutritionist, Psychologist, Primary Nurse and more but here is a list I would recommend you keep handy in addition to your medical team;
1.  Person who understands what I am going through (they have had a personal experience)

2.  Person most likely to lift my spirits

3.  Person whom I can talk to about anything

4. Person whom I wish I could talk to more


We all need someone to just listen and  be there for us.  For me a good cry is not a good cry unless I have someone beside me that is hugging me saying I understand.  I don't feel as much relief if I cry alone.  We work to be strong but not every day do we have that kind of stamina so be open enough to share your burden with someone that will help you through this.  Now that list could be someone from your medical team or it could be someone you know but reach out when you feel you are dragging and let them help you carry the load.  Together you can make it a better day! S
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What makes you happy?

3/10/2014

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  Well, I will be the first to admit that there are things that make me happy and things that make me sad and sometimes I work hard to keep happy.  I love my job, but there are frustrations as we all have and my sound off usually lands on my husband's ear.  I am happy when I can talk to a new patient and tell them that I am a 9 year survivor and I can see that it gives them hope.  I am happy when someone completes treatment  and when the treatment is working.  I am happy to make people smile and even laugh despite what may be happening.  That does not mean that I avoid the trials and tribulations that we all go through but rather try to address it and find what I can be grateful for.  That is my word for the year that I keep refocusing in my head. GRATEFUL! Yes, I am grateful that I am doing a job I enjoy, I am grateful the sun is shining, I am grateful when a former patient comes in and we just get to touch base again and know that they are out living and enjoying their lives.  I am grateful for a medical team that keeps me in their sight and grateful we have the methods to continue surveillance.  Now it goes without saying that there are alot of other things in my life that make me happy and that includes my family(husband, kids, their spouses, grandkids, sister, brother,etc, etc.)  you get the drift. I am happy with my pets, I am happy I love to read, I am happy that we have just enough. Just enough to enjoy our lives, just enough to do the things we want to do, just enough to be part of this community.  I am grateful that there is love and forgiveness, understanding, and compassion and caring.  I am grateful that I am still growing and learning and grateful that even when things don't go the way I think they should, that there is someone else actually directing my ship.  That does not absolve me from things that go wrong in my life but it does help me to recognize that I am human and mistakes will happen and with grace, we go on.  I am happy for the Easter season, knowing all things are new and I am happy that each day starts anew.  So find your happy, be gentle with yourself, excuse your less than stellar moments and be happy that tomorrow will bring new adventures, circumstances, activities, and ideas and that
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My apologies

3/10/2014

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For my faithful people that do look to this site for news and information, I did abandon you for over a week now. The truth of the matter is that I came down with the NASTY RESPIRATORY FLU.  Yup, I got it and it knocked me on my bottom.  I not only missed out on work and this blog but also a trip to Mexico  with my husband for a few days and trust me, sunshine would have been a great help in the midst of all this but alas, I wasn't up to it and I sure didn't want to share it with anyone.  It was interesting as I had provided first aid care to a person in Wegman's the Saturday before it started and stayed with him until the ambulance arrived and took over. That evening started the first of my symptoms but it really didn't fulminate till the following Friday.  What I experienced was an extremely dry throat and hoarseness which I mistook for my son's house and how warm they keep it at night as we were visiting them at the time. Needless to say, I am back, swamped and  I will supply some new info once I find my desk but know that I did not forget you, just couldn't get up to do it but I am back.  Making
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    Author

    My name is Sue Kilburn and I am a clinical nurse breast cancer educator at the Yolanda G. Barco Oncology Institute in Meadville, Pennsylvania.

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