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As I reflect on the past three years of the Living with Cancer blog, I realize that many of you have enjoyed sharing your personal story and hearing from others. It's powerful to hear from other cancer survivors in their own words.
At Mayo Clinic we strive to provide the best care to every patient every day — in person as well as through online forums such as this blog. One of our goals is to support your patient experience by sharing with each other.
We'd love to hear from you whether you've been a patient at Mayo Clinic or not. Your story can provide a sense of hope and reassurance to others who may be experiencing a similar situation. Having cancer changes you and it can also inspire you to make a difference for another person experiencing cancer.
I encourage you to write and share your individual stories with each other by adding a comment to the blog — as well as on our Patient Stories page.
Go to MayoClinic.org/patientstories/ and look for the Cancer Treatment at Mayo Clinic section. I encourage you to read the current stories and contribute your own if you would like.
Follow me on Twitter @SherylNess1. Join the discussion at #livingwithcancer.
Sheryl M. Ness, R.N.
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Dear Mayo Clinic,
The Carol House/Carol Anne Clark Foundation (www.thecarolhouse.org) was founded in accordance with the late and beloved Carol Anne Clark's innovative vision of providing quality of life Patient Care Support Systems (housing relief)to cancer patients and their families who are experiencing catastrophic financial ruin, some being displaced from their homes due to the debilitating and accumulative effects of a loved one's cancer.
Carol Anne Clark was an outspoken cancer patient's advocate and took her role very seriously. While undergoing radiation, chemotherapy, attending imaging centers and endless doctors appointments, Carol and I, (Carol's husband and full time care giver) were coming into direct contact with fellow cancer patients and their families. Accordingly, Carol and I became privy to some alarming and heartbreaking anecdotes concerning the desperate and unmet needs of cancer patients and their families and the serious lack of REAL and MEANINGFUL resources and Patient Care Support Systems.
As a cancer patient's advocate Carol thought it incumbent upon her to bring awareness to the not so pleasant aspects of cancer that reflect the untold and tragic human toll of hardship and suffering, and the serious ramifications that extend far beyond the patient. In essence, Carol sought to shed some much needed light on the desperate plight of a forgotten and all but abandoned segment of the American populace and whose desperate and unmet needs were not being responded to ... and who for ideological and other unfathomable rationale have remained marginalized and severely wanting with respect to having their heartfelt and genuine concerns raised.
Carol wrote hundreds of letters to just about every cancer related foundation/society and philanthropic institution in the United States, articulating politely yet firmly that "Cancer was not just about research, but also about the human cost and that A CANCER PATIENT'S DESPERATE AND UNMET NEEDS ARE EVERY BIT AS RELEVANT AS RAISING HUNDREDS OF MILLIONS OF DOLLARS FOR CANCER RESEARCH (over a trillion dollars and counting since President Nixon declared war on cancer in 1971) AND ARE DESERVING OF EQUAL FUNDING AND EQUAL ATTENTION." Alas, for the most part, Carol's advocacy was met with a deafening silence.
Carol was mindful that for decades the spotlight has remained focused/fixated on the race to find a cure and that the mainstream cancer industry and other powerful interests have played a significant and influential role in policy making and how federal, corporate and private sector dollars are allocated to cancer research. Carol's reseach discovered that this dangerous, disproportionate and lopsided approach had all but obscured the tragic human cost of cancer unfolding in America every day. This set of morally and perplexing circumstances presented Carol with a difficult conundrum as to whose priorities were most pressing, those of the living and made destitute, or those of a cure that has somehow managed to elude the world's finest scientists and researchers for decades?
No one possessed more of a vested interest in a cure than Carol and while Carol understood a cure would provide the perfect solution, her focus was on bringing awareness to the human tragedy and the scant and inadequate REAL and MEANINGFUL resources and quality of life Patient Care Support Systems.
Carol also understood the grim realities indicating that millions (including herself)would continue to suffer a most agonizing and heartbreaking demise, many passing away under unacceptable norms of decency, in squalid conditions and some without even a roof over their heads. Undeterred, Carol began to think outside the box and explore the feasibility of forming her own non-profit foundation and one
that would put cancer patients desperate and unmet needs first and foremost, especially their housing needs. Carol's concept of a non-profit foundation was to be fundamentally different and designed to provide an innovative support network that
(in addition to providing other nurturing resources) would focus on cancer patients and their families housing requirements. Carol's non-profit concept would also be founded on three of her guiding principles and/or core beliefs, MAKE A DIFFERENCE TODAY, ONE FAMILY AT A TIME, IN ONE COMMUNITY AT A TIME.
Out of all the multi faceted unmet needs of cancer patients and their families that Carol identified, she pinpointed housing as the most basic and critical need. It was Carol's wish and my own aspirations to utlize/donate our beautiful, fully furnished and handicapped equipped home as the first Carol House. This house would serve as a beacon of hope and a safe harbor for distressed cancer patients and their families. Carol thought it crucial that a family should have a roof over their heads, their loved one with cancer be provided a sanitary environment and a place of healing. That children have a back yard to play in and most importantly, in the event of Hospice Care coming into the picture, that a loved one be allowed to expire on their own terms, in peace and comfort and with a sense of dignity every human being deserves.
Carol understood that her innovative housing relief program would not be an endeavor and/or undertaking for the faint of heart, that it would involve sacrifice, hard work, serious commitment, creative fundraising and the support of one's community. Sadly, Carol did not survive to see her beautiful vision come to fruition. Shortly after Carol passed, family and friends rallied together to simply pick up where Carol had left off and the Carol House/Carol Anne Clark Foundation was formed in May, 2012.
On October 2, 2012 and after receiving over fifty requests for housing relief, we handed the keys over to our first resident and whose life had been turned upside down by her cancer. The first family consists of a single mother (diagnosed with stage two breast cancer in May, 2012) and her two young children. October 2, 2012 will remain a very special day in the hearts of all those associated with our charitable cause and who came to offer their help in moving the residents into their new home. Just witnessing the joy and excitement etched on the childrens faces as they dashed from room to room, and the heartfelt demonstration of appreciation of their mother made all the hard work worthwhile. Moreover, we all got goose bumps that day in the knowledge that Carol had finally seen her vision come to fruition. Owing to the family's dire financial circumstances, we felt compelled to provide the home on a rent free basis ... the rest is history.
What affirmative action can the Mayo Clinic take to help our foundation provide additional Carol Houses to those who are either in the process of losing their homes or have already been displaced due to a loved one's cancer?
Thank you for taking the time to read this lengthy posting.
The Carol House/Carol Anne Clark Foundation Inc
When I was diagnosed with Breast cancer a few years back, I reacted like most who receive a cancer diagnose; first thing came to mind was a “death sentence”. However, I found out later that it was truly “an awakening” for me; even after being diagnosed with colon cancer a few years later. I began questioning God, why would you do this to me? What had I done in life so bad to have this placed upon me? But instead of bemoaning my fate, I decided to look for the positive side of it. There has to be a reason for it all.
I also realized that I was about to face a new beginning, new hope, do and see more with a whole new prospective on life. When I think of the “gift of life” that was given to me, I know that I will develop and gain strength from all my experiences. Even with the complications I now have to live with, and all the struggles I've dealt with my entire life, I still feel truly blessed. For a while, I wasn't happy with the way I looked after my surgery and the pain I had to endure each day, but I decided to snap out of it. I thought about the individuals that are no longer among us. I also realized that there will always be someone worse off than I am. I reminded myself, that I “still have my life” and who am I to complain.
One day I experienced something of a miracle and felt the compulsion to write it down. I turn that experience into a poem and I called it “Peace”. Writing has become therapy for me. I took that poem, along with many others I ha
When your doctor says “cancer,” it has a way of rearranging your life. Mine was rearranged eighteen years ago. I thought it was just a routine mammogram, but then I heard the word “Cancer” and all I wanted to do was get home to tell my family.
I followed the conventional route of surgery and chemotherapy, which was the beginning of an endless nightmare. The “therapy” nearly killed me. “We will take her to the brink of death, and then bring her back,” the doctor said to my husband. The chemo was supposed to be out of my system after three months from my last treatment, but it wasn’t. It lasted for years.
Three years after I completed chemotherapy, a friend invited me to a product presentation that changed my life again. I had already been health conscious before by taking vitamin supplements, but until I accepted that invitation, I had no idea about the huge difference in companies and products.
I was so impressed with the science and integrity behind these products. And boy, did I need help! Chemo had slammed me into menopause, puffed me up like a marshmallow girl, filled my nights with terrifying dreams and hot flashes, depleted my stamina, muddled my brain and left me feeling like an old woman at age 43.
If you would like to know more about what I used to rebuild my life, I'd love to share with you. I'm new here, so don't know how we go about connecting.
Thanks to all of you for sharing your story and sending positive comments for treatments and recoveries and hope. What a dreadful disease cancer is. I am 55 yrs old Diagnosed with stage 4 stomach cancer (adenocarcinoma) that mestastasized in the lining of my stomach. After surgery in January to take out part of my stomach the doctor determined I would need chemo first due to more findings. My first two chemo treatments landed me in the hospital for a week. After finally getting the treatment I could handle I am about to finish 6 treatments of taxol and Carboplatin. My scans are good (no new activity) I will go on "chemo holiday" for a couple months. Yay! Btw, my cancer has never shown up in any scans due to the location of the cancer in the lining of the stomach. I was experiencing fullness and could not eat full portions and that is why I seeked medical attention. I've lost my hair, lost weight and had to take medical leave from my job. Which I am still on. I live each day to the fullest and praise God for my blessings each and every day. Good luck to all of you. I hope you have many years to enjoy this beautiful thing called life.
never give uo on ones self beating the disease no matter what
This is for Heidi, who has gained weight during the steroids and complains of tiredness. I did not have that problem, I think due to my having 2 spoonfuls of chia seeds every day with my morning whole cereals.Chia is an antioxidant, it helps reduce cholesterol. I put the seeds and cereals in a bowl with milk and let them stand for 20 minutes or until the seeds let out a mucilage and then eat them. I also have a salad with varied greens, tomatoes,beet, avocado, lentils, etc. as lunch and finish it with a varied fresh fruit cocktail. I also have nuts and almonds at hand while I'm in the kitchen.In the evening I have meat 2 or 3 times a week and fish (e.g.pink salmon or others) the same. With this diet I have, according to my oncologist, a 100% peformance status. I also walk and go to gym classes. Usually 2 or 3 classes a week and 3 days walking 1 hour at a brisk pace. I'm 72, 73 in october. I was diagnosed invasive ductal cancer after 3 months studies, starting Sep2012. Mastectomy Dec 5.2012.January 15 days holidays at the beach, plenty of air, salty water and sun, so I started chemo in perfect health. Started AC4 Feb 5. Now weekly Paclitaxel 12, yesterday 2nd.week. Early morning today gym class,no more tired than usually
I discovered a "mass" in my left breast at the end of January 2013 and my nipple was inverted, by 11 February 2013 I had seen a surgeon, had a mammogram, sonar and MRI all which came back inconclusive. I was admitted to hospital 11 Feb and underwent a biopsy with the possibility of a mastectomy depending on what was found. I woke up after nearly 4 hours of surgery to discover I had indeed had the mastectomy and had been diagnosed with breast cancer, Lobular Carcinoma. I was shocked and overwhelmed. I was discharged from hospital 2 days later. I have been through the mill as far as my emotions are concerned and I think I am still mourning the loss of my breast. I was referred to an oncologist and started chemo therapy 15 March. I suppose I have been fortunate in that I have not experienced radical side effects. I have lost my hair, my skin is extremely dry and I am thirsty all the time. I get tired very easily, My legs are weak and I am out of breath when I get to the top of the stairs in our house. I have gained weight due to the steroids I am taking with the chemo therapy so have to watch what I eat. It all still seems a bit unreal and when I talk about my chemo therapy it sometimes feels like I am talking about someone else. I have six more treatments to go then I start radiation and thereafter hormone replacement therapy for between 5 - 7 years. It is going to be along haul. I am very blessed to have a very supportive family and partner and an excellent medic
I am one year post chemo and radiation for Stage III breast cancer. After reading all these comments, I am thankful for the so many brave souls and pray every night for God to bless and have mercy on all of us. May it be in His will to find a cure soon!
This is probably not a unique story. I needed a port flush and showed up at Mayo Scottsdale. They told me at the desk to phone in so I called on the cell and after a long dissertation of my treatments in the past, I was refused an appointment. I was forced to go elsewhere. Next time I will go elesewhere directly. I have followed all your web pointers but my survival is mainly due to Dr. Piel, Gurnee, IL and the Block Center in Evanston. Keep shopping folks.
continue opinion at Mayo. It has given me confidence in what my oncologist is doing here. I do wish I could be treated at Mayo and we are considering a second trip. However, to stay there would be financially prohibitive due to living quarters and lack of friends and family nearby. so where do I stand with this journey.....Pray, believe, be thankful for the 78 years I have had and hope for research to come forward to eradicate this terrible disease completely.
While we are living, while we are dying We belong to God We belong to God. Sheryl has asked about our story. Fifteen years ago i Was diagnosed with breast cancer. I put be back with lots of tears and fear , then I rallied and lived a good quality five years. Then to my amazement five years later my mammogram showed I had it in the other breast. Went through treatment and hated my body and barely looked in the mirror. However, after recovering from the surgery went back to work and again lived good quality life. After another four years the oncologist was getting ready to discharge me but decided to do a bone scan as I had complained of pains throughout mmy body. She ordered a bone scan and discovered it had metasized to my scalp and ribs and lungs. I have been on xeloda for two years. I feel pretty sick the week I am on but pretty good the week off. I had trouble toletating it two weeks on and one off so she switched it to one week on and one off. I saw my primary doctor today and he asked me what part of having cancer is the hardest. I told him the not knowing when I shall die, how I shall die and how much pain. He gave me hug and told me to live one day at a time. He said enjoy the moment. Be active when I can and rest when I need to but keep interested. I try very hard to keep that advice. I still have tears sometimes but I also have joys sometimes. However, I am still fearful of the time when it comes. So glad I believe in God. So gld I had a second o
I have cancer. cancer does not have me. everybody stay strong ! live for now ! we are all in this together!
i have had cancer since 2006. (CLL) here is a poem i wrote. cancer came calling 6years ago in may.i kicked its ass, im still here today.cancer came for another visit last summer. oh well what a freaking bummer. cancer most lokely again will show its ugly face. but guess what? its not the end of the race. cancer thinks it can keep me down and knock me out. i dont think so, cause ill just keep getting up and will fight another bout. with GODS help i hope i can kep cancer out of my way. cause all we have is now, this moment, this day.
There is a reason, there are several reasons that brought me to this and that will bring me through this...You have helped carry me through and I know that last Wednesday night as I was a little scared going tru after-effects of this chemo by myself, there was a cancer fund raiser and prayers and thoughts were sent my way...I am so grateful... we will continue fighting together... Pray that the scan to be done after chemo-04 ( end of June) brings results we are hoping for: a distinct improvement, an undeniable proof that modern medicine works, that we are still, despite the odds and numbers given, walking not just towards a handful of years but towards recovery...
Part 2... and tap into the Worldly Holy Energy that is there sustaining us... As I waited to see my Oncologist this last Tuesday, mulling over the odds given me ( 3-4 years.. enjoy them...) I thought, I have so much more to do, to teach , to live for and suddenly... I received a burst of energy, right into my heart, into my soul...strength, renewed faith, increased power... Power of Prayer, of healing thoughts, of communication with the purely energetic field...It was an amazing, unbelievable feeling...
As I traveled tru this path of fighting cancer since last year May 25, I have seen several "patches of blue sky" and I continue to see them..
I was diagnosed with colorectal cancer a year ago...As a scan showed tumors to my liver, very strong chemo was initiated with success and, after an embolisation procedure ( removing all blood flow to the right lobe of my liver), extensive surgery was done again with success...This was followed by colon ( Sygmoid) surgery dona also with great success...As we were getting ready to do preventative chemo,, a scan showed that cells were now into my lungs... I publish an update for our Outreach program that I was asked to share with you, hoping to assist anyone in this condition... There it goes"As I navigate tru the "aftershocks" of Chemo-02 taken this week and notice yet new ways for this "chemical cocktail" to affect my body as it carries on the battle on my behalf, I can't help but take a deep sigh at how naïve I must have sounded a few short months ago when I thought that because the " operations" were now behind me, so was this beast... I have since acquired a whole new respect for how sneaky, silent and devastating this monster can be...Only a few short months without chemo as we were taking care of business of surgery and there it snuck up on me... into my lungs and even as a new tiny one into my liver... So what to do now? We fight...That's what we do.. We fight together with Chemo which will be on-going ( with treatment and pills), we fight with the medical teams, we fight with Faith and Love and Friendship and tap into the Worldly Ho
To Betty: Find another oncologist at a major
hosp wherever you live. My husband was diagnosed with same as you have at same 76 age
& started major testing immed. to see if spread & to find out what stage he was in.
Chemo cured him. Prayers go with you. You
will make it.
post did not process -
Rest of post May 23, 3:18pm:
...compartmentalized side-effects & treat accordingly per individual's need.
Thank you everyone and the very best to each of you - persevere as Life is Grand!
To Betty (Lymphoma below) and in general,
I was diagnosed with Non-Hodgkins Large B-Cell Lymphoma 11/2009; six weeks of chemo and 4 weeks radiation; currently remain in remission now three years out. During chemo I asked "how long without treatment" would I have had - the answer was two months. My type of lymphoma is extremely aggressive. Unfortunately, the cancer treatment was delayed because my primary doctor misdiagnosed my chest pain as "anxiety" twice, even knowing me and that I do not demonstrate anxiety from stress, etc. She followed the "norm" of patient exam which almost cost me my life. I was diagnosed after the fourth tumor popped out of my neck over night (five tumors in all by the time I entered treatment January 2010).
My journey has advanced my cancer knowledge:
1) Please follow your gut instinct Betty and everyone else - if you feel something is wrong, move forward, press doctors for answers. 2) Post treatment, take an inventory of your body (physical symptoms, also emotional and mental state included). I discovered doctors persevere in their individualized profession. Many times additional treatments are REQUIRED to regain normalcy such as physical therapy or counseling. I refuse to follow what my body has suggested to be norm, but rather am fighting for answers to post-cancer symptoms in order to regain my life. Thus far, now 5/2013 I am winning. Life is a treasure - the medical profession should anticipate possible compartment
I was just given a clean bill of health regarding the lung cancer that was diagnosed last May! My PET scan showed no sign of "IT"!!
The treatment I received was a radiation treatment called "SBRT"! I credit the early diagnosis by my doctors!! So do not, I repeat, do not put off seeing a doctor if you have continuing lung problems, either colds or coughs. It is worth the effort you make and the competent and caring doctors you go to!!
I was diagnosed with stage four non-small cell lung cancer with metastasis to the brain in August, 2010. After whole brain radiation, followed by ongoing targeted treatment with Tarceva, I am happy to report that I have No Evidence of Disease as of April, 2011 and to the present day. I remain on Tarceva and have bi-monthly check-ups and scans, but life has returned to normal for the most part.
It is possible to beat the odds. Don't give up hope!
I am very moved by the words of fortitude and compassion that all of you have shared! I want to celebrate your courage to be present for your self during your cancer treatment and challenging journeys. I had breast cancer and received treatment with chemo and tamoxifen over a decade ago now. Over the years I have learned how to deal with all of the aches and pains that came due to the treatment and have been thankful that I was a Physical Therapist in my first profession, as this helped me to advocate for my health care and learn how to help myself. This was a long road of recovery for me. During all of this, I learned to meditate and journal regularly, as well as appreciate each day as it came--and still do! Due to the clarity and centering of these life habits, I developed a second career. I'm now teaching journaling and am a Life Fulfillment Coach. I love to inspire others to be in the fullness of their life each and every day! This is such a blessing to be here and witness the wonders of life along with the challenges. I wish you all much happiness and send you my appreciation for sharing your honesty and wisdom.
As many said these things come in many forms (disabilities). I was born 74 years ago with epilepsy due to the use of forceps causing pressure on the brain. Smoking for over 42 years gave me COPD. Then I was diagnosed with Islet Cell Cancer and my neurologist said "you'll do just fine in facing it--since you've been through the epilepsy." Fortunately I made it through radiation, chemo, etc and now am simply being followed. At 13 I was diagnosed with Tuberous Sclerosis. At 2007 I was told I had Tuberous Sclerosis on the brain. By 2011, the tubers began to enter Broca's area and "I've lost a lot of cognitive abilities and some memory." Then, Osteoporosis entered the picture after 63 years of Dilantin and the chemo. Now, I'm dealing with CKD; but taking one day at a time and slowing down a lot for a male. But that's life.
I am 76 yrs. young and was diagnosed w/non-Hodgkins Lymphoma and I'm curious why my cousin in Wisconsin has the same & has gone through Chemo. and my Dr. has me as not having to do so. Do I need a 2nd opinion. I'm scared. My white count is at 71,000 & red is still normal.I don't see the Dr. until August 25,2013.
I was diagnosed with neuroendocrine tumors (carcinoids) of the liver, mesenteric and maybe in the lungs in March 2012. This was my 2nd opinion after first being diagnosed with adenocarcinoma and told I had less than a year to live. The biopsy was not confirmed for cancer in my lungs but the doctors see stainings that lead them to belive it is in my lungs. Surgery is not an option because I have so many in my liver. And neither chemo nor radiation is not affective on carcinoids. What can I do? Every 3 months, I get a new CT and they are growing. Not really fast but growing. My understanding, nothing can be done. It is so hard to just sit by and do nothing. Any suggestions?
Now 57 years old, I am a 4 year breast cancer survivor and am living each day to its fullest! It's amazing how being faced with a cancer diagnosis makes one appreciate the small things in life. I thought perhaps as time passed, I'd revert back to not always being appreciative of the blessings I DO have but I've found that I continue to count each and every blessing daily. There are so many! Before my diagnosis I was always physically active and healthy and I continue to maintain that lifestyle. I currently do pilates at home and go to 3 or 4 Zumba classes a week. I teach 5th grade so there is never a dull moment on the job. I received so much kindness and caring from strangers as well as friends, neighbors, and loved ones during my journey of healing so I try to "pay it forward" whenever I can.
I am a 5 year ovarian cancer survivor and retired nurse. There are many wonderful websites, books, and support groups...I encourage you to seek them out. I have always found a lot of encouragement and information from my oncologist's nurse...she is great.
I wish I could answer your questions, but I encourage you to think positive, be strong, and keep asking until you have the answer!
This is for Sharon that posted... I'm sorry to hear of your Metastasis.. I don't have the answers for you.. but as a Breast Cancer "Survivor" -- that scares me. But, I just wanted to let you know -- there is a great group that meets on Twitter using hashtag #BCSM on Monday evenings 9:00pm Eastern. http://www.bcsmcommunity.org/ for more info. I know you will find others there that can help you. BCSM stands for Breast Cancer Social Media. Wishing you have the strength to endure this.
I was just diagnosed with metasis from the breast to the bone. Has anyone had bone cancer and how do u deal with it. Does it progress fast? Should you request to have chemo first before any other treatment? pls help. i have 3 kids that need me to be here for them.
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