My hope may be that I am cured or it may be that I go to heaven when my time is near and who knows when that really is. My hope and faith keeps me strong and even at the weakest moments, I know that I still have hope. I can see in others, the faith that we all need and want. I can see the peace and serenity in holding on to hope and I can see that love is what binds it all together. Whether today is my last day or ten years from now, I will share each day as a blessing and give the love I receive back two fold. My hope is that if you need it, you will open yourself up to receive it and make it a great day!. S
Where do you look for answers and hope when you are facing the word, CANCER? There is a fine line between too little information and too much. I recall, even as a nurse, that when I heard the words breast cancer that almost all the information they were relaying to me at the time, just seemed to float off into the air and I only grasped a small portion of the information they were telling me including all the tests and appointments that were to follow. I do remember immediately saying that this wasn't going to be my end. That was a conscious decision on my part as the words kept coming. I was devastated and yet almost numb to what it meant to me at the time. The unknown of what to follow took me to the things that were familiar: the last patient I had that had cancer, what my grandmother looked like after her mastectomy, a friend that lymphedema. My big question remained was how to find hope and fight the negativity inside myself as well as others who thought they were sharing and helping by telling me how their mother had suffered and died from breast cancer, or another person who relayed how her best friend was so sick during her chemo and all the reactions she had experienced. I decided then and there to cut the negativity out completely. If a person couldn't be positive, I moved on or asked them to not discuss that with me. I believe in positive thinking and finding a happy medium as we can't always be up with the daily processes we have to go through but if I knew I could limit that negativity and fight back by being positive, well then dag gum - I was going to do it. My vanity fell away very rapidly and I could have cared less if you saw me with a wig or with a naked head after my hair was gone. Really, it is only hair! I did experience some pain but I will say that I have gone through worse and I am not a great candidate for pain control as most of those meds either make me goofy or give me a reaction so I also decided different techniques to deal with the pain would be in order. I often called my cancer, brussel sprouts as I hate brussel sprouts and I could visualize throwing those brussel sprouts out and being rid of them(Cancer). I prayed, ALOT and put it in my higher power's hands that his will be done. I also bargained on some days that if I got through this treatment, I would cut out eating junk. I will admit I am better at this but not completely weaned from the stuff. I found hope through those that had gone before me and looked and acted normal and had 20 years of survivorship under their belt. Hope came from friends, family, and specifically my spouse who stood by me through it all. The times I could sit still during treatment, the crying of exhaustion and wanting the end of the treatment and of having to deal with this all and my lunacy at laughing at the silly things. People would ask if I liked being bald, "Really- yes, it takes me far less time to get ready in the morning." Now honestly, isn't that one of the dumbest questions you ever heard!
My hope may be that I am cured or it may be that I go to heaven when my time is near and who knows when that really is. My hope and faith keeps me strong and even at the weakest moments, I know that I still have hope. I can see in others, the faith that we all need and want. I can see the peace and serenity in holding on to hope and I can see that love is what binds it all together. Whether today is my last day or ten years from now, I will share each day as a blessing and give the love I receive back two fold. My hope is that if you need it, you will open yourself up to receive it and make it a great day!. S
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At the conference I attended in Las Vegas, one of the topics involved the power of words. One of the things that most impressed me is that words, even well meaning, can have a negative effect. It is not that I didn't know it before but I realized that I have to really look at what I am saying and how it is received more than ever before. Just because I am a survivor doesn't mean I have all the answers which I often repeat. I don't know that there is a right or wrong way of doing things or getting through treatment but we all do our very best. I know that losing my hair was not as traumatic for me as it is for some women and trivializing the effect of hair loss is detrimental. Hair does grow back within 6 months after completion of treatment but I have had women who have contemplated about not having chemo so they wouldn't lose their hair.
You will hear people ask if you smoked and we do know lifestyle choices raise your risk but the perception is that you are to blame for your cancer. How many times have you heard, that there is a war on cancer- that meaning their will be a winner and a loser. The power of those words that a person lost their battle to cancer fails to portray a positive image. We also hear that screening doesn't save lives for those that have cancer. One of the ones that are often heard is, " at least you caught it early or you are down with treatment now go and live your life." When there is a recurrence, it is better to say that we are restaging the disease rather than it is back again. Fear of recurrence is always there and usually hits about six months after completion of treatment. After you have completed your treatment it is hard to go back to your every day life. There may even be a period of loss as your support systems through treatment are gone and your safety net removed and you may not come back for 3 months. Your friends no longer see a critical element in your cancer as you have completed your treatment so now you are supposed to be NORMAL. There is another word that can give you pause as what exactly is normal? As a team, we as healthcare providers need to be aware of the words we use and also to be consistent and use words that they know and use every day. Using medical jargon can also put the patient on defense as they may be too intimidated to ask. My husband used to tease my that my dog was not very smart and even though he was joking, it hurt me(even though it is a dog) that he referred to him as stupid. The power of words! So when you are talking with someone dealing with these issues, think about the words that you use and sometimes just sitting and listening may be the best medicine of all. So with that I will sign off for today and say, So some mornings I come in and get all my things together for the day and I have an inspiration for this blog and other days I find something new /interesting to present and some days, I just wait for divine intervention. Some days it takes something like a cup of cappuccino to jump start my brain and today is one of those and no, I forgot to get a cappuccino ( liquid candy bar in a cup).
I spent last evening with the AMISH discussing health issues and concerns and the conversation then led to what is happening right now in the world with the bombings and such. I was totally shocked that they were so in tuned with what is happening now in our world considering they don't have television or telephones. Their simple lifestyle does give you pause for thought. I never go into these communities that I don't have a crowd slowly gather and we just sit and talk. There is the absence of video games for the kids and phones ringing, and no visible watches or name brand jeans. As I oogled over one brand new baby, we discussed immunizations and found with some interesting conclusions including that half of the community was immunized and half were not and that would even be in the same family. They are very much inclined to do herbs and chiropractors as first line intervention. We talked about the role of preventive medicine and routine testing and the absolute need for immunizations. We even talked about nutrition and their use of supplements. It always leads back to personal concerns and how to get care for what is happening in their lives now. They are a hard working group with a very loving attitude and a great sense of humor but very indoctrinated to keep to the simple life although they won't have phones in their homes, they will have one on their porch or use a neighbors. With all the recent activities in the world, it gives pause to just keeping it simple. Life should not be this complex and construed. Our goal should be to love one another and of course, the Golden Rule of do unto others as you would have them do to you...(paraphrased). Which when you look at it all is back to basics and what our country was founded and guided by, faith! I can't predict what is coming nor can I tell you what time you have here on earth but I do know if we don't slow down and care for one another and turn back to that faith, that we are spiraling downward fast. What does this have to do with cancer, nothing and everything! We can't help you if you can't help yourself! We give you chemotherapy and you ask for a break to go out and have a cigarette. You don't eat right and never include fruits or vegetables and you drink too much and don't exercise but yet you think a magic pill can fix it all. I wish it could but we have to look within ourselves, our lifestyles, our stress, and what can we do to make it better. No, I am not blaming you for getting cancer but I am saying you can help yourself to make it better. So this morning is a simple reflection of what I perceive has been happening and what lies ahead in some aspects. We have to turn to our higher power, and help those around us and treat ourselves better. Start today by mak It is often mentioned that cancer is expensive and to be honest, do any of us really know what the price tag is for what we are doing and experiencing? I firmly believe in mammograms and I realize the need for ultrasound and Breast MRI. I don't know all the price tags but the ones that I am aware of, it is staggering. Keep in mind that you have doctor visits ( and that means co-pays) you have testing and retesting and follow up. That doesn't even include the biopsies, surgeries and possible recurring surgeries as well as a port placement for your Intravenous needs. I recently heard of a new line of treatment that will possibly cost $10,000 a treatment and I know that eight years ago when I was going through treatment, I received an injection to help boost my white blood cells and at that time it was close to $2,000 for each injection. We are living longer with cancer and treatment can and often continues for long periods of time. This doesn't even touch the surface of the personal cost, emotional cost, and what it can do to a family financially and otherwise.
I doubt that any of this comes as a surprise and yet do we ever sit down and consider all of what is involved to give that patient the best prognostic outcome? I know that if I have a concern tomorrow that is valid and substantiated clinically that, my health team will work to find answers and what is next in the plan of my care. I have had a few scares and am relieved that we took the steps early and happy to find out that all was good. I don't know of any patient that has completed treatment that doesn't go back to their health care provider for their check ups, without trepidation and fear and has a great sense of relief after the appointment is over and they get the all clear. What has the cost been to you or your family if you have someone in your family that has cancer? What fears to you harbor and what thoughts do you have and how do you look at your future and what do you do to be proactive? All I want, is a cure. You can't go anywhere that you aren't touched by cancer: a sister, a friend a relative of your brother-in law. You name it, we all have someone close to us going through the throws of cancer. None of us grow up saying, yes, I want a divorce by the time I am 40 and yes, I will have breast cancer and yes, life goes on. So what do I mean by all this, we all think we are invincible until the other shoe drops! Take care of yourself and your possible future needs now. The cost of illness can be forever and just as I brought an umbrella today as it might rain, know that we might someday be experiencing things that we never thought would happen and so Now, it is not science fiction but it is an important research study that that American Cancer Society is doing and it is open to anyone in the United States and Puerto Rico who is willing to commit to a long term research study which means completing periodic follow up surveys at home for the next 20 -30 years. It is open to men and women between the ages of 30-65 years old and has never been diagnosed with cancer( not including basal or squamous cell skin cancer)
Having said that, I cannot participate because I have had breast cancer but I am encouraging all that meet the criteria to do so. I have participated in a nursing study for as long as I can remember which is over 30 years of information they have gleaned from a large group of nurses and this information has increased the knowledge and understanding of the science of the human body in so many various ways. I have enjoyed being a part of such a large and impressive study and am glad that I can help. If I could participate in this one, I promise I would be front and center to do so as I am all for finding a cure for cancer, any and all kinds. It is time that we get involved. Getting involved is easy. You can enroll prior to the event by making an appointment at : www.greatereriecps3.org and attend one of the enrollment sessions which takes only 25 minutes.( You can also enroll that day of the event but preregistration gives you an appointment time and helps us judge the amount of staff we need on hand). At the event day itself which for Meadville folks, is May 23rd from 3-7 PM at New Beginnings Church of God, 13226 Leslie Rd, Meadville, PA, 16335. At that time you will sign a consent form, complete a brief survey, provide a waist circumference measurement and give a small blood sample. That is all there is to it! Now for those of you further reaching than this immediate area, contact your Local American Cancer Society and find out when and where you can enroll in this great study. Once enrolled and the initial process is completed you will receive periodic surveys at home to update information. For further questions, please contact Anna-Marie Labowski at [email protected] or 814-86-5174 or [email protected] or by calling 1.888.604.588 for more information. We need your help so that we can make it a great day for all of us in finding a cure for cancer. S Ok, so now that I said it- please don't call in the mental health professionals. Am I crazy, maybe! One thing that having cancer has taught me and I also learned from my husband is that it is a choice. Trust me, my life is anything but calm, serene, and peaceful. There are always health concerns, financial, family, and more but I can choose to be unhappy and grumbling and moaning or I can sit up and take notice for the good things I do have. Every once in awhile, we all need a good kick in the butt and stop to realize all our blessings. Could it be better, probably and that is with some intervention from me but it could also be worse.
Often working with patients and their situations, you can see how their life has progressed and how they have dealt with situations in the past as history tends to repeat itself and what worked before, you will try again. Now, don't get me wrong, we all wallow at some point and time and we get lost along the way but putting one foot in front of the other and just moving forward is much better than stalling in neutral. Make your list of pro's and con's and what you can change and what you can't and how to work with it to make it the best the whole way around. It is always good to have a sounding board too, someone outside the immediate loop that can just listen. I will be the first to admit that as your children get older and leave home, doesn't mean it gets easier. I love my kids as my kids but also now as adults that are even friends as well. I adore my grandchildren although I don't get to see or be with them as much as I would like. I long for the time that I can have them and it will just be Poppa and Grandma time with the kids even though I love the parents, I want that time alone with them. I have a job that allows me to work with my strengths and to be involved with the patients and their families and also out working with the community. I love my husband and we are still working our strengths and weaknesses but I know that he has my back and I have his. He stopped in yesterday at work and just brought me popcorn(my favorite treat). He is everyone's friend and he will go out of his way to help you at anytime. My children are amazing adults who have a faith base and are caring and committed people with great work ethics and commitment as well as compassionate and loving. I hear from most all of them every week and some several times a week despite being all over the world. I have a support system of friends that have stood by my through thick and thin and I will admit my side has been somewhat thin due to my work schedules as of late but I know they would be there in a minute if I needed them. My faith is what gets me through, oh yes, there are questions, doubt, sometimes anger and confusion but I stay constant in faith and hope. Now that is personal faith but there are all kinds of faith, I have faith in my husband, my peers, my healthcare team, my country. My prayers are for all and that our world with be better by all of us praying and doing better and the faith is I look for good and don't dwell on the bad and know there is a higher power at work here. So I love my life and hopefully through my actions you can also gain strength in your situation. Make it a great day!.S Webinar on Anxiety and Depression After Breast Cancer
Register now for our free webinar, Anxiety and Depression After Breast Cancer on Wednesday, May 15 from noon – 1 p.m. ET. Learn more. Breast cancer can be a life-changing event that may impact your long-term emotional health and outlook on life. Our webinar will help you learn how to cope with the complex emotions you may feel after a breast cancer diagnosis and get the support you need. During this webinar, Ruth H. Steinman, MD, will discuss · factors that influence your emotions. · how to tell the difference between common feelings of sadness or loss and clinical depression. · medical, lifestyle and therapeutic interventions for anxiety and depression and how to get the support you need Disclaimer: This website is for informational purposes only and is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of any medical institution. These webinars are wonderful and great to access. I highly recommend you consider going to this site and looking at their offerrings. In the HER2 Analysis Predicts Breast Cancer Survival
For women with metastatic, HER2-positive breast cancer, the amount of HER2 on their tumor might determine how much they benefit from a drug called trastuzumab emtansine (T-DM1), according to data from a subanalysis of the phase III clinical trial that led the U.S. Food and Drug Administration to approve the drug on Feb. 22, 2013. These findings were presented by José Baselga, M.D., Ph.D., physician-in-chief at Memorial Sloan-Kettering Cancer Center, at the AACR Annual Meeting. "EMILIA was a landmark phase III clinical trial," said Baselga. "It showed that T-DM1 prolonged progression-free and overall survival for patients with HER2-positive metastatic breast cancer that had been previously treated with trastuzumab and a taxane chemotherapy compared with lapatinib plus capecitabine. Also, it provided proof-of-concept that a new class of drugs called antibody-drug conjugates can benefit patients." Antibody-drug conjugates consist of an antibody attached to a toxic chemotherapy, according to Baselga. In the case of T-DM1, the antibody is trastuzumab and the toxic chemotherapy is emtansine. Trastuzumab recognizes the protein HER2, which is found at high levels in HER2-positive breast cancers, and targets the emtansine to the HER2-positive cancer cells, which are killed by the toxic chemotherapy. (MedicalXPress) Disclaimer: This website is for informational purposes only and is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of any medical institution. Make it a great day! S Cancer Patients Unintended Victims of Sequester
Thousands of Medicare cancer patients are being denied treatment at clinics nationwide because of federal budget cuts related to the so-called sequester. The mandated cuts took effect April 1, and cancer clinic administrators say they can no longer afford to provide expensive chemotherapy drugs to many Medicare patients. After an emergency meeting Tuesday, one clinic administrator -- Jeff Vacirca, chief executive of North Shore Hematology Oncology Associates in New York -- said that one-third of the group's 16,000 Medicare patients would be turned away. "It's a choice between seeing these patients and staying in business," Vacirca said. "The drugs we're going to lose money on we're not going to administer right now." Hospitals, which also provide chemotherapy treatment, may offer an alternative, but it's not clear if they can accommodate the additional patients. Hospitals are also likely to charge more for treatment, and some of those extra costs will likely be borne by patients, said experts. In terms of patients, the numbers are significant. Two-thirds of Medicare patients receive treatment in a community oncology clinic, rather than a hospital, according to a study by the Milliman actuarial firm. This payment crunch is an unintended consequence of the sequester, some health care experts say. Congress limited Medicare to a 2 percent reduction -- less than that faced by other government programs -- but coverage of cancer drugs falls into a tricky area because they must be administered by a doctor. That puts them into the Medicare Part B category, which falls under the sequester cut. (HealthDay News) Disclaimer: This website is for informational purposes only and is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of any medical institution. Well, after a rousing week in Las Vegas at the 23rd Annual National Interdisciplinary Breast Center Conference and a few days with my son, who is in the Air Force...I am home. It was a rousing conference but between the smoke and the pollen, I know have a better appreciation for what allergies can really be like. Mornings at the conference started with a seminar while you ate breakfast and then the day progressed till 6 at night. You had the opportunity to pick and choose what sessions to attend and you can pop in and out as your personal needs require but it was intensive. I had the opportunity to network and in this vast setting as well as at the conference I met several people as close as Rochester, NY. The main goal of the entire conference was to increase the quality of breast care divided. I was proud to say that we do many of the things that were discussed at the conference. We also learned about new techniques and medications and even some administrative issues. I particularly was very interested in the survivorship portion of the conference and also barriers to maintaining motivation as well as the roles within the center that you are working under. It was refreshing to find that although I am not listed as a navigator and my job encompasses many things, I found others that are in similar roles as myself and as one administrator spoke, the outcome that was my position is a big part of the institution and promoting a positive breast care environment. We did look at evidence based clinical content as well as patient outcomes.
There is a hall at the conference that houses all the poster presentations and one that I found quite interesting was that regarding patient satisfaction and it looked at making the patient feel they are the focus of the center. There was a bulletin board just for patients, there is a specific nurse that follows you through your chemo and another during your radiation and it also talked about the liason person between each. They talked about pet therapy and music therapy and also art therapy and about special robes for treatment. This all sounded markedly similar to our environment. Another component that was discussed was the " SORRY WORKS" importance and that is something we look at as well as thanking our patients for choosing us for their treatment. The information that patients gathered on the internet was also of interest and how to incorporate it into your educational process. I also loved looking at the latest and greatest while attending the vendors exhibit. There is now an automated ultrasound and the mobile mammography units were amazing and so many ancillary products including markers for the breast tumor and educational materials including literature and models. and that was just the first day. Are you tired yet? I walked away with a wealth of information and now it is time to gather my thoughts and look at ways to include it in my everyday efforts. One area that I felt bad to not see because of change or venue, was a program on "beyond lotions and potions: innovative medical management for sexuality and menopause". This is an area not discussed as much as needed and is part of improving the survivor's quality of life. So many times we are busy putting out fires to not realize that there are other issues that have importance as well. I promise that I will keep learning and including tidbits that I have learned and how to use or apply them and as always, Make it a great day!. S |
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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