My Breast Cancer Came Back


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I heard the whispers, words I wasn’t meant to hear. “Did you know her cancer came back?” whispered a colleague I had known for 20 years. “Is she going to die?” was the new colleague’s response. The first colleague replied, “Not likely. She just gets cancer whenever she wants time off work. She never dies.” The words cut me to the bone, leaving me hurting yet strangely numb at the same time.

There really was no need to whisper about my diagnosis at work. I never hid the fact that I had breast cancer in the past. I was surprised the gossip mill had started so soon as very few people knew I had been diagnosed with breast cancer for the fourth time. I had only just received the news myself and had told those in management I would be taking extended sick leave once again once I had a surgery date.

The comments confused me. I get cancer whenever I want time off work? Surely there are easier ways to take time off then having another mastectomy and more chemotherapy. I never die when I am diagnosed with cancer? Well that has been true so far but at that point I had not had any scans or tests to see if the cancer had spread. At that point, all I knew was the cancer was back after a 16 year reprieve since cancer number 3.

“She never dies” rang in my head the rest of the day. Do they really want me to die to prove I actually was sick? Do they not understand the physical and emotional toll breast cancer and its recurrences take on an individual? Would having a funeral make everything better for people so they could recast me as a heroic figure battling cancer to the bitter end instead of just a physically and emotionally battered woman trudging through treatment over and over again? The one thing I have learned about recurrences is that their negative effects are cumulative over time. Each recurrence is emotionally harder than the one before. Each time your recurrence is contained before it spreads throughout your body makes you feel you are living on borrowed time and that your luck will run out eventually.

The message that is repeated over and over is that once you reach the 5 year cancer free mark, you are “cured” of cancer. This may be true for many people but it is not universally true for everyone. Many people have local recurrences of cancer in the same breast where they had it the first time. They may develop new primary breast cancer in the other breast or more rarely like me, develop a new primary cancer in the same breast. The pathologists decide if it is a recurrence or a new primary cancer based on how closely the second tumour resembles the first. If the second one is markedly different than the first, or if it occurs in the other breast, it is considered a new primary breast cancer. If it is a recurrence, it is thought that surgery/radiation/chemotherapy left some cancer cells behind that grew and multiplied to form a new tumour. As long as the recurrence or new primary is confined to the breast, it cannot kill you. It is only when it spreads beyond the breast(s) or mestastisizes to another body part, that it becomes lethal. Once that happens, there is no longer any talk of curing the cancer, only treating it until the treatments stop working.

Recurrences/new primaries produce interesting responses in people. With my first breast cancer at 29, my divorced parents who hadn’t talked to each other in 8 years, rallied together and stayed with me for weeks during surgery and radiation.

When my second cancer in the same breast was diagnosed at my 5 year “cure” mammogram, my mother had died 6 months earlier and my father made many excuses why he could not make the trip a second time. This was the first cancer that happened while at work and most of my colleagues rallied around this scared 34 year old facing a mastectomy and chemotherapy. They treated me as though this was my first breast cancer. I know that the night of my mastectomy, numerous work colleagues were gathered around my hospital bed. I was groggy and in pain but was aware enough to know that they were there and they cared. In the weeks that followed, many workmates dropped off food and accompanied me to my chemotherapy appointments. I felt supported, cared for, and loved.

I felt a litle less love from the local breast cancer community. The first time around, doctors and social workers went out of their way to hook me up with other breast cancer survivors. Granted most of these women were 40 – 50 years older than me who had lived long and full lives, but I appreciated the effort. With the first cancer, I had a very proactive medical social worker who hooked me up with relaxation groups, guided meditation groups, and the only support group they had at the time for patients battling all kinds of cancer.

By the time of my second cancer, I was pretty much left on my own. No volunteers, no social worker, and I had to beg to see a real live person who had reconstruction surgery. One finally showed up the night before my mastectomy but had a completely different surgery than I was having. I had the same breast cancer surgeon as I had for the first cancer. I couldn’t help but feel he was less interested in answering my questions this time around. I guess I was one of his failures for not quite making it to the 5 year
cure mark. He just kept drumming into my head that I would have to wait an additional 5 years to get pregnant or my baby could very well be left without a Mommy. Sometimes during that experience, I felt like the medical professionals viewed me as just another Dead Woman Walking.

The cancer struck my other breast 2 years later. I had barely returned to work and then was off again for surgery and radiation. By now, I was quick to pick up the signals that something was wrong with my mammogram. The technician would call me back into the room for a few more mammograms. Then she would disappear, returning with one or more people, who would whisper among themselves. At one point, I swear a whole group of student trainees crowded into the mammogram room, looking intently at the pictures. I would say “what are you seeing?” and the original technician would tell me there was nothing to worry about, this was just routine. I’d had enough mammograms by then to know this was anything but routine. When I got the official news from a doctor a couple of days later, it wasn’t exactly an overwhelming surprise.

My Dad was too busy to come visit once ago. I had a new boyfriend who I would eventually marry (and divorce) who took good care of me. We even bought a puppy to aid in the healing process. Again, this was his first time dealing with my breast cancer so he was supportive.

By this time, my colleagues were suffering battle fatigue dealing with my illnesses. There were a few meals, a lot less visitors, and more people who felt I should bounce right back. This was my third new primary breast cancer in 7 years and I was feeling beaten down and not terribly bouncy. Cancer surgery in the late 80s and the mid 90s involved removing all the lymph nodes under the arm on the side of the cancerous breast. This procedure is not the routine anymore but at that time it was and it made even a lumpectomy a gruelling operation with an extended recovery period.

Also, each time there is a recurrence/new primary, there are a battery of scans of the liver, brain, lungs, and bones and numerous blood tests to see if the cancer has spread. Each new test is nerve wracking as you never know what may turn up. I have been very lucky so far that the cancers have been caught before they spread beyond the breast.

I noticed when I started radiation treatments after Cancer 3, the other women would be friendly while we waited our turns. If however I said this was my second time doing radiation or that this was breast cancer number 3 at age 36, the women would clutch their floral housecoats tighter around themselves and would instinctively move a little farther away from me, as if my repeated cancers were contagious.

I lucked out for the next 16 years. No cancer. I went for a routine mammogram and was called back for more pictures. The technologist told me to wait in the mammogram room while she went to check something. When she said more pictures were needed, I demanded to speak to the radiologist as I knew something was wrong. To my surprise, the radiologist did enter the mammography room. He stared at his shoes the whole conversation. He obviously didn’t talk to patients very often. He said there were calcifications on the mammograms that were highly suspicious for a malignancy. He had reviewed my prior mammograms and what he was seeing was new. I pushed him harder on what “highly suspicious” meant until he said he was almost 100% certain it was cancer again, but only a biopsy could provide the absolute truth. I was immediately sent for an ultrasound where no tumour could be found. Even after referring to the mammogram, no lump or bump could be felt. The surgeon thought this meant it was a tiny cancer caught extremely early. She was in no rush to schedule a biopsy or a surgical date.

Things started going off the rails at the biopsy. Even with the mammogram, they weren’t sure they were hitting the right spot so the needle went in over and over again. When it was confirmed to be triple negative cancer again, the scans started. My sternum lit up on the bone scan. It had been broken 4 years earlier and they couldn’t be sure if they were seeing the break or cancer. The CT scan showed a web of tiny blood clot embolisms at the bottom of my lungs. As I had a spontaneous pulmonary embolism in one lung five years before, they immediately started me on blood thinners and debated delaying the surgery. The surgery went ahead as planned and to everyone’s surprise, it was 2.7 cm in size, making it a Stage 2 cancer. The reason it couldn’t be felt was that it was deep inside, close to my chest wall. The pathologists are evenly divided as to whether this was a new primary or a recurrence that had been hiding in my body for 16 years.

By this time, my father was in a nursing home and I didn’t even tell him about the new cancer. I was a single Mom with 2 children, then aged 9 and 11. Some of my work colleagues did get together and raise money for flowers and groceries. 2 of them would visit me at least once per month while the rest kept their distance. One friend brought over her husband and brother-in-law and they and my kids did a good job housecleaning. I had a medical social worker again and she helped with getting me free rides to chemo and getting me into 2 healing touch sessions.

This month marks 3 years since I finished my last chemo. After numerous CT scans, the radiologists have concluded that the bright light on my sternum during bone scans comes from trauma not cancer. The blood clots on my lungs disappeared after 6 monthes of daily injections in my stomach with blood thinners.

Having multiple recurrences has taken a huge emotional toll on me. I no longer have faith in my body. It has betrayed me too many times. I no longer believe in an orderly universe where good things happen to good people and bad things happen to bad people. The universe seems pretty random to me. Cancer survival seems especially random to me. Every day on Facebook, I read about another woman with breast cancer who has died. Very often they are young and leave small children and a grieving partner behind. These were women who ate organic foods, ran marathons, and looked after their bodies. They did everything right and yet were struck down in the prime of their lives.

Although I have had a double mastectomy, there is no guarantee I won’t get another recurrence/new primary breast cancer again. No matter how close they cut, it is impossible to remove every single breast cancer cell during surgery. I could probably summon the emotional strength to battle a recurrence/new primary for the fifth time, if only for the sake of watching my children grow up. But what worries me is that I have been playing Russian Roulette with breast cancer for 26 years now. I have been wounded but am still sitting at the table, waiting for my turn to press the gun to my head. How many times can you stare death in the eye and walk away still alive? One of these times, a new recurrence/new primary won’t be caught and treated in time. Or like 30% of women initially diagnosed with Stage 1-3 breast cancer, there will be no recurrence, just the dreaded metastasis to brain, bone, lungs, or liver from cancer cells still lurking in my body even after the last surgery and chemotherapy.

I read in so many forums how women are terrified of having a recurrence. Please remember if it is local to the breast, it can be treated and life will go on. It is metastasis that you need to worry about as for that there is no cure.

Have you had a recurrence/new primary since your initial treatment? Did you have early stage cancer that you thought was cured but it metastisized elsewhere? Please share your experiences in the comments below.

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114 thoughts on “My Breast Cancer Came Back

  1. Sharon, I am so very sorry for all that you have suffered and for your feeling betrayed by the unkindness of others and abandonment by friends. I have not experienced anything nearly as hard and frightening as you have, but I have lived long enough and experienced enough to know that those hurts are almost worse than physical suffering. I had to use a wheel chair in my fifties and friends would say, “I’d rather be dead than end up in a wheel chair.” To me that was writing me off as useless because I couldn’t walk. Actually, it just meant their ego and self image depended on doing physical things that required working legs. And because I lived quite a distance from town and couldn’t drive any more, I was home bound and alone at least five days a week. Most of my friends had busy lives and simply never seemed to think about what that would be like for someone who had always been very active and involved with people. But a new medicine got me mobile again. And I became determined to help others. But by now, I have also lived long enough to have to learn that my own need to save other people led me to burn out and sometimes to finally have to distance myself, and my empathy and sense of helplessness sometimes led me into depression and then I was of no use to anyone. My personality and my personal journey of spiritual growth have involved failing others, even those I loved the most, and years of struggle and eventually grace to become free to be there for people for the long haul and even to just sit at the foot of their cross with them. I know this doesn’t take away the hurt of others letting you down, but we really do all have different strengths and it may take a lifetime to grow out of our particular weaknesses.
    You are an amazing person and also have a talent in writing that allows you to reach out to others. I am in awe of all your accomplishments and courage in the face of such challenges. But do remember, not all of us have your strengths.

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    1. The people who said to your face that they would rather be dead than in a wheelchair were showing their own inner fear of what you were going through. The fact that they didn’t come to help you get out of the house is again fear based avoidance behavior. It is not that we are strong super people who somehow “coped” with our illnesses and somehow carved out a life for ourselves. We were ordinary people with our own strengths and weaknesses who had the choice of either going on with life or basically giving up and becoming dead. I have wrestled with depression and anxiety for years. In your writings, you have described how your empathy for others led you to a state of burn out. I guess the answer to the question of how you go on when something terrible has happened is you have no choice other than to go ahead and live your life day by day as best you can or else you just give up on life completely and die, if not physically, then at least emotionally. Thank you for your comments. You have written something very complex here that will have me thinking for days to come!

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  2. God bless you, Sharon. You are a strong, courageous woman. I’m appalled that your colleagues would say such stupid, hateful things about your contracting a life-threatening disease in order to have some time off. What a terrible thing to say about someone!

    I wish you so many good things in 2015. ❤

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    1. Thank you so much for your thoughtful comments Kate! I wasn’t supposed to hear those comments but once I did, it was very painful to deal with. I only wish I could be as confident as the speaker was that I will never die from cancer!

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  3. This is a great post. As a breast reconstructive surgeon, I meet patients at all stages of treatment and acceptance. It is different to other cancers in its emotional implications. Unfortunately this often impacts on people’s expectations in regards to their reconstructions. I am sorry for all that you have been through but I applaud the way you have dealt with it and the insight you possess. Best wishes, love and hugs.

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    1. Thank you for your wonderful comments! Breast Cancer is difficult for many reasons but one factor is we live in a breast obsessed society and losing a breast messes with your self-image and confidence in your sexuality, particularly if you are young and single. Thanks for reading my post and for your thoughtful comments.

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  4. We, as a people, are making headway in overcoming discrimination of handicapped people, people of different nationalities and religions, but, after reading these comments, I realize that we haven’t made any great strides in discriminating against those who have not only faced cancer, but have faced in over and over again. Please know that this is just simply ignorance on the part of the cruel; ignorance and lack of empathy. To have heard such a thing when one already must be feeling terrible about having to miss work, was beyond awful. I feel like I would like to apologize for womankind. Thank you for bringing this important topic to the forefront.
    Ginene

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    1. People sometimes say things for the sake of gossip I guess, never thinking their target will overhear them. In my case, I felt a lack of empathy about how hard it is to try to live a normal life, working and raising kids, only to have cancer come back again and again. From the comments I have received on this post, many people who have experienced cancer more than once have described the disappearance of others from their lives when the cancer comes back or spreads. I think a lot of this is fear based behaviour from people trying to distance themselves from thinking that this could happen to them or a loved one too. Or maybe as a society we are taught the cancer myth that everyone is either cured of cancer the first time or they are diagnosed and die quickly and tragically, with all their hair and with full make-up on, whispering profound statements about the meaning of life from their deathbeds. When you don’t fall into one of these 2 categories, people don’t know what to do about you.

      I really appreciate your insightful comments on this post. I hope you have a Merry Christmas and a Happy New Year!

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  5. I get the battle fatigue from people in my life. People don’t understand that you never end treatment when you are stage IV. I always have to explain that when they ask, “When are you done with treatment?” But I don’t get the absolute cruelty of your co-worker. Wow, that was cold. Karma is a bitch, as they say.

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    1. I can only imagine how tough it is to tell people that your treatment will never end. People have been fed so many myths about cancer – get it once and you are cured for life, catch Stage 4 early and you will be cured – that they have trouble believing those of us who don’t fit the pink ribbon story. We don’t make sense to them and they have to find a way to explain us and distance their lives from ours. In my case, I guess it is easier to think of me as some sort of hypochondriac with magical powers to get sick enough to take time off work but not sick enough to die. Too bad I don’t have those magical powers to ensure I never die from cancer. Cancer to me is like a game of chance – sometimes you win but the odds are always in favour of the house.

      I really appreciate your comments. I’ve been reading your blog for awhile and really love it!

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  6. Sharon, I am sending you a hug!! It truly is so relieving to read all these posts from so many people who, even with all the different cancers, speak candidly about how they REALLY feel. It’s refreshing to see that I am not alone in the fear of telling friends and loved ones that it’s back, yet again! To not be the only one who is sick and tired of explaining my cancer. To know that I am not alone in trying as hard as everyone I know to figure out why I’m still alive when my prognosis was initially 6-7 months and I’m 1 year and 8 months out. So, thank you Sharon and every single other person on here for sharing, and for being so honest in your sharing!

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    1. Thank you for the hug!!! You are not alone. There sure seems to be a lot of us relapsers and refuse to die survivors around who understand. Thank you for being so open about your story and sharing your heart with us. I am so glad you are here.

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  7. Thank you for sharing so candidly in your blog.

    My faith community is better at caring long term. Are people too afraid of their mortality to be attentive to someone suffering? Does the average person understand cancer as a soul-sucking, physically draining, emotionally devastating set of diseases? Can anyone understand what it is like to have a cancer diagnosis/remission journey unless they too have been on the journey?

    I chose not to tell most people that I had a BC diagnosis – in part because I did not want to be dismissed as irrelevant and in part because, when I was the most vulnerable, I did not need to hear about Aunt Sue or that woman in Kansas. I, perhaps unfairly, judged people would rush toward providing a solution or conclusion rather than listen. The benefits have been mixed – I am not left with a bag of stories about Uncle Oz’s colon but then I am asked to take on enormous tasks for a person who just completed surgery, radiation or a round of debilitating side effects. Even my saint of a husband had his brother change the celebration of their parents 65th anniversary to from before my 1st lumpectomy to the day after – and seemed perplexed that I was not ready to drive the 400 miles to the party. Too bad as my mother-in-law was clear brained that day (she had Alzheimer’s) and died before I got to see her again.

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    1. I think a lot of people are good in the acute crisis stage of the first diagnosis and surgery and some are still there for radiation and treatment. You soon learn who your true friends are. The longer or more frequently you are sick with more of the same cancer, you find people dropping away, either from burn out or boredom. There is a common perception that someone else is taking care of the cancer patient when in fact, there may only be one or two main caretakers or none at all. No, unless you or someone close to you has battled cancer, I don’t think the average person understands how destructive this disease can be on every level. I’m sorry your husband didn’t immediately get it when he changed the party date to the day after your lumpectomy.

      We all have to make our own decisions about whether to tell others about our cancer experiences. After 26 years, I have chosen to speak openly about my cancer experiences, if only to let someone else out there know they are not alone in their feelings. As my first 3 cancers happened between 29-36 in the preinternet age, I felt very isolated and alone. I felt there were no other young women battling this disease, particularly not 3 times in 7 years. I just want to try to turn these negative experiences into a positive thing by reaching out to others. If others prefer to keep their cancer diagnosis to themselves, I respect their decision to do so.

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      1. Thanks Sharon. The timing of my diagnosis – the same January week the beloved 52 year old organist of 26 years passed away from BC mets – played into my decision. The odd habit of our church secretary of putting a table in the bulletin – name in column 1, disease in column 2 was also a factor. You, I and the millions of others who have a diagnosis of cancer are not equal to cancer. Grossly insensitive and ignorant of the gravity of one diagnosis over another.

        Anyone that asked (I was on a prayer chain for the 3 lumpectomies needed to get clear margins), I told them details. Not surprising, long time (~40 years) friends and those who have had a cancer diagnosis are those who are the kindest. But, my diagnosis came at 63 and is less than a year old. Experienced my mom’s decades long journey through BC, primary kidney cancer and liver disease that reflects some of your experiences with isolation.

        Thank you for your insight and sharing. Without a doubt many are rejoicing in finding this resource – for bonding, information and support.

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      2. Thank you for your very kind comments. Your mother sounds a lot like my mother in her battle with several different kinds of cancer over the years. You are right – we are individuals, not just a walking cancer diagnosis. I understand your reasons for not sharing your diagnosis unless specifically asked about it. Thank you for sharing your story here.

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  8. Sharon, there are no other options left for me if this treatment doesn’t “work”. My treatment plan is only a prolonging of my life. Radiation and chemo do no good against melanoma. The treatment I’m getting is a type of immunotherapy. I just want to tell you that it feels amazing to read your posts, and all the others, and be able to relate, even though we have diffraction cancers, we face the same ignorance by people who mean well, but just don’t know how they should talk to us. I pray for the best outcomes for all who have posted or even those reading!

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    1. I understand Crystal. I am so sorry this was the hand you were dealt. My former mother-in-law took immunotherapy treatment for metastic kidney cancer and despite its friendly sounding name, the treatments were much harsher than she expected. I am hoping the treatment will give you a good quality of life for as long as possible. I wish I was there to give you a hug.

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  9. My mom was diagnosed with breast cancer in 2008. She had a mastectomy, underwent two rounds of chemo as a “precaution.” In 2011 we found out despite being on hormone blockers she now had triple negative disease that metastasized to her bones. She was a nurse and the first thing she said to the MDs was “I have a trip planned to go to Scotland figure out a way to get me there in April 2012.” By October 2013 the oncologist did much the same thing you described the radiologist doing hemmed and hawed and looked everywhere but at my mom. My mom finally said “There’s nothing more you can offer, put me on Hospice they can control the pain and manage my symptoms.” She still went out to church and to concerts and even with Hospice there were times we had to advocate for her and be pushy. Her brother and his ex-wife/roommate were all supportive when she first went on Hospice and I found all of a sudden people wanted to come by. As time went on though and she didn’t die right away people fell away but thankfully she still had a core group of nursing friends that still came by and actually helped. When her condition deteriorated we did an online fundraiser and hired student nurses from the local university to come in and help. She just died on November 7th on her 69th birthday. We too had difficulty finding support groups. Even when she was on Hospice. They have support groups for the first illness, and when someone dies but nothing in between. You have to advocate for yourself or find a pushy friend or family member that will do it for you. I got better at being pushy for mom. There were resources mom knew about as a nurse, there were resources I found as I went along and there were resources her social work and nursing friends found for us. So I started a web site so people could find these resources in one place. If you are interested go to https://caregiverresources.squarespace.com/

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    1. I’m so sorry to hear of your mother’s recent death. I have learned the hard way to do my own research, ask lots of questions, and not accept everything doctors tell me as the gospel truth. It is unfortunate that so many former friends drop away when the patient and family need them most. I’m glad your Mom had a core group who stuck by her and that you were able to advocate on her behalf. Thanks for the link. I will check it out.

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      1. No I never took tamoxafin as it is not prescribed for triple negative cancer, which all my cancers were, as it blocks hormone production. Triple negative cancers are not influenced by hormones. Our only hope is chemotherapy to hopefully kill off any remaining cancer cells. Most women have hormone positive cancer which helps prevent recurrences and metatsties. A targeted treatment beyond standard chemotherapy is desperately needed for this disease.

        Thank you for your thoughtful question.

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  10. I was diagnosed with stage 2 lobular carcinoma almost 8 years ago. Just a lumpectomy and radiation. 3 years into the “5 year tamoxifen plan” and my cancer had mestastized to my bones in 3 places. Cancer sucks. You live afraid of every pain and headache. No one suspects I have cancer. My only telltale sign is that 4 years ago the cancer caused my femur to break. Good luck to you. Enjoy every minute of life

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    1. Cancer does suck big time. I’m sorry to hear that yours metastisized to the bones. I broke my foot last year by tripping on the last step of a staircase. There was no fall, just a bit of a twist. When they said I broke it, I thought I had bone Mets as the accident was such a non-event. The drs say no bone Mets and Mets are rarely below the knee but there is part of me that doesn’t really believe them. You just can’t trust your body after cancer and particularly when it comes back again (and again). Are you still doing treatment for your bones? I wish you all the best and thank you very much for sharing your story.

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  11. Thank you for sharing your story Sharon. I had Stage 3 colon cancer. The tumor blew up my appendix. I had that removed along with 2ft of colon and my gallbladder which was full of stones but I had no symptoms. Followed by 6 months of chemo. I had a recurrence 18 months later. Tumor was removed along with my ovaries which had multi cysts. That put me into Stage 4. I did chemo 5 days a week for 24 hours with a pump and 36 rounds of radiation. I haven’t heard of many Stage 4 colon cancer survivors (overcomers). I worked in the medical field and the 2nd time around was a huge difference from the first time. A lot less visitors and no help at home or even phone calls. I even lost a friendship that I thought was very strong but she avoided me, never return any of my calls. It hurt for a minute but I had to put my energy to staying alive. I am 14yrs out and at this time I am dealing with a lot of side effects of having so much chemo. I totally understood the trade off when I choose to do chemo so I am not complaining. I have a new normal now and I will handle it. I wish you peace and strength. You are a true warrior!

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    1. Wow Marilyn, you sure have been through a lot! My mother was 4 years as a stage 4 ovarian cancer survivor when she had a new early stage primary colon cancer. About 2 years after that, she had yet another type of colon cancer that was stage 4 as it metastasized throughout her liver. She was dead within 3 months of that diagnosis. From her experiences I know colon cancer is a very hard cancer to have. An earlier commenter described herself and myself as being members of “the refuse to die club”. You obviously are also a full fledged member!

      Losing friendships, trouble with employers and work colleagues, and the loss of emotional and practical support seem to be common themes for those fighting recurrences or new primaries. When we need their support most, our support team seems to have become burned out and no longer willing or able to help.

      Congratulations for being a 14 year Stage 4 survivor! You have fought long and hard to get to where you are today. Enjoy your life in your new normal and stay strong!

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  12. I have had breast cancer four times! First at age 37 in 1989 (lumpectomy and radiation), second in 1990 when tumor grew in a lymph node on my neck (chemotherapy and radiation). Then I had an 8 year remission, but sadly it came back in both breasts in 1998. Had a double mastectomy and chemotherapy. Then the next year I found a tumor in my armpit, which was removed, but I opted not to have chemotherapy as the cancer did not show up anywhere else. My theory was that I would try to build my immune system, rather than tear it down. I quit my job (they were no longer supportive) and took up art as a healing therapy. It has been 12 years now, but the fear and trauma of living with this disease for so long never leaves me. But knew I needed to write to you, to let you know there is someone else out here who understands completely what you wrote about in your blog. I actually rarely talk about this anymore as most people assume it is in my past and do not understand the lasting effects of the surgeries and uncertainty…. But I believe that your positive spirit is the greatest medicine of all. Praying for your full healing!

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    1. You are the only other 4 time breast cancer survivor I have ever met! When your body betrays you that many times, you never feel safe from the cancer coming back again. There seems to be a common thread to the comments I have been reading from people with recurrences. Problems arise with employers and co-workers as I guess they are angry that we are not at work. I think sometimes people just get tired of hearing we are still fighting cancer long after the first incident. It is sad and unfortunate that it seems to be that way for so many survivors. I guess they think if we have had cancer that many times and are still alive, our condition must not be that serious.

      I am so pleased to meet another 4 time breast cancer survivor. I’m sure we have grappled with the same issues and concerns over the years. I hope you continue to come back to this blog. May you remain cancer free for the rest of your life.

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  13. Wow!!!! What a story! My heart hurts for all of us that have had to endure this terrible disease!! I’m a 5-year stage 2 survivor. Estrogen +, Progesterone +, HER-2 -.
    I had a lumpectomy with chemo & radiation and so far I’m doing well on tamoxifen; however, I do have ovarian cysts that are being monitored. I’m worried about that!
    Your story gives me HOPE! I’m mom to a 14 y/o daughter. I don’t want to leave her!!
    I pray for all of us!! 🙏❤️

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    1. Yes my heart hurts for all of us too. I’m glad to hear that you have made it to the 5 year mark. Congratulations! Thank you so much for sharing your story. My kids are 15 and 13 and still need me around too so my hope is to see them grow into adults and maybe bless me with a grand child or 2, many years from now.

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  14. I’m a long term serial relapser too, first diagnosed back in 2002 and currently 10 months out from a bone marrow transplant which I dearly hope will be the thing which finally rids me of this annoying lymphoma for good. Had a not so great scan recently so fingers crossed!

    Anyway, I just wanted to say that I would take the comment you heard as a compliment! I’d be happy to be seen as indestructible. Certainly beats the alternative…

    Keep on and keep strong.

    Liked by 1 person

    1. Yes being indestructable or as another poster called it “a member of the refuse to die club” definitely beats the alternative. Only trouble is I have no idea why I relapse but don’t get sick enough to die. If there is a secret formula for staying alive, I sure can’t figure it out. I guess it just isn’t my time yet.

      I hope your bone marrow transplant worked and that a new scan will show that. You deserve a break after 12 years of fighting cancer. Please come back and let me know if the transplant was a success or if you have more treatment ahead. I want you to keep strong too.

      Like

      1. Yeah, 12 years is quite enough for anybody but you’ve been at it twice as long as I have so “respec'” to you. Here’s hoping we’re both still around to tell the tale another quarter century from now – and hopefully it’ll be fading from our memories by then…

        Liked by 1 person

      2. Update: biopsy results in and yes, it’s officially back.
        That’ll be another exciting new treatment to look forward to in 2015. Nice…

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      3. Oh Ian, I am so sorry to hear your news. I was hoping all would work out fine. This is hard news to get any time of year, but the holidays make it that much worse. Do you still have a strong support system? Please know I will be thinking of you and hoping for the best. Please keep me updated on your new treatment and how you are doing. Take care. Hugs from Canada.

        Like

  15. Wow Sharon. As so many have already said you are an amazing writer and an inspiration to many. As a 34 year old diagnosed with colon cancer this year, I can relate to your experiences. I also have coworkers who think I am on a vacation enjoying my treatments which so far have included 12 rounds of chemo, surgery to remove a huge chunk of colon and my entire rectum and a permanent colostomy, and numerous tests. I want to scream at people who say “you don’t even look sick” when they really mean “why do you get all this time off work?”. I want to ask them if they would like to wear a colostomy bag that rest of their lives or go through chemo that takes away the feeling in your hands and feet and causes joint pain, weakness and severe fatigue. No one deserves to deal with cancer and no one would choose this life. My prayers are with you and all those fighting cancer or with loved ones with cancer.

    Liked by 1 person

    1. Oh Shannon, I am so sorry that your coworkers view cancer treatment as a vacation. Personally I’d rather be anywhere else than in a surgical ward or a chemo room. Treatment is HARD and the changes in your life are permanent. For me, loss of breasts and ovaries and for you loss of your colon and a permanent colostomy. No, cancer was not in my life plans and I definitely wouldn’t recommend it as a life path for others. My thoughts and prayers are with you as you continue your battle with cancer. I hope you come back again soon with an update on your cancer battle.

      Like

  16. I had kidney cancer and colon cancer in 1998 (two primary cancers)….surgeries to remove both; no chemo or radiation. In late 2004, a CEA tumor marker blood test indicated something was going on with the colon cancer. Scans revealed a tumor in my lymph glands; surgery verified it was a 2.5cm tumor; wrapped around my ureter and attached to the main artery. 1/2 the tumor was removed. Chemotherapy followed….so far no new recurrences.

    Liked by 1 person

    1. That is excellent news! Did you have treatment to get rid of the half tumor left behind by surgery? Or did it disappear on its own or just has remained stable, not growing or spreading? Have you had any major lifestyle changes that would explain your continued good health? I hope you continue to enjoy good health. Please come back if possible and share your secrets of success.

      Like

  17. Just wanted to leave a little a little piece of hope here, because I am living proof that not all is lost once cancer metastasizes. I had liver cancer, not breast, but my cancer metastasized to my lungs twice (two separate relapses). It’s been 24 years since my last treatment of any kind, and there have been no traces of cancer since!

    Liked by 1 person

    1. That is excellent news Ashley! Wow we don’t hear this kind of positive news from stage 4 survivors very often. Whatever you are doing, keep doing it as it sure seems to be working for you! Have you made any major lifestyle changes that would account for your good health?

      Like

  18. I don’t have breast cancer, but I have been battling my own recurring monster, melanoma, it’s stage IV. Initial dx was stage IIb in 2007. In March of 2013, I was having headaches and
    was losing sight. After an MRI, I got the news that I had a brain tumor and it was bleeding. After the surgery, I was told it was melanoma (news to me that it could metastisize). I had radiation, I will never get my sight back that I lost, I also had to have ALL my teeth pulled due to damage caused by the radiation. On the exact date, one year later, it had returned. This time in my left thigh. Surgery to remove a grapefruit sized tumor and no radiation, it doesn’t work on melanoma, except in very small, very precise areas, and there is no chemo. I had no cancer in my scans after that surgery. An extremely short 3 months later, it’s back, in 5 areas. So I can definitely empathize with you on how some people treat you. I even dread telling anyone that it’s back, again. I get the enthusiastic “well, you’ve got through this many times, what’s one more?” Or that “it’s just another notch on your belt”. I have tried and tried to explain it to people that I am dying, even if they don’t believe me. I’m sorry that your co-workers said those things about you. My heart literally broke for you. There is absolutely not a single “good” cancer, there’s not one single cancer “easier “than another. I hope that you continue to be cancer free and I hope that people’s attitude changes, or at least gets better around you! But, you now have a partner in “they just won’t die” club!

    Liked by 2 people

    1. Wow Crystal! That is a real nightmare, all you’ve been through in such a short time. I am sorry you too were exposed to hurtful comments about how this is no big deal for you as you have been through so much before. It is a huge deal! It is rare to meet or talk to other people with multiple recurrences. We are our own special group. I like your expression “never say die club”. What are the next plans for your treatment? I really hope you keep me posted as to how things are unfolding. Thank you so so much for telling your story here. Please come back again and post an update.

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  19. I can relate to so much of your story. I was first dx with breast cancer at 37, and heard those words three more times over the next six years. One was a false positive, but by the time I knew that the emotional damage was done. Of the others, I recurred once in the same breast and had a new primary in the other two years later. It wears us and our caregivers down, and I too had wonderful care but eventually saw the relationship fall apart and some friends not so secretly wish I would get over it and move on. I made well supported treatment choices. The odds were well on my side for it to be cured each time. And yet it did persist and return and change. The possibility that it will come back never leaves me, there is no idea of being free. I carry that burden and try to isolate it from my otherwise full, robust living. I’ve only just celebrated 1000 days cancer free. The longest I’ve gone since first dx. I work every day to think less about it…but I know the day could come again when I have to deal. I hope only for the strength to handle whatever comes and the ability to minimize its impact on those around me. You are not alone. I get it.

    Liked by 1 person

    1. Kelly, thank you so much for sharing your story. You are only the second person I’ve met who has had breast cancer more than 2 times. A false positive would be a relief when discovered but you are right, by then the emotional damage is done. I like your phrase, “there is no idea of being free” of cancer. Once you have had it multiple times, there is no longer a blind belief that you are cured and it will leave you alone forever. One day at a time is all we can do. Thank you so much for sharing your story here! I really hope you continue to come back here again.

      Like

  20. I did not have breast cancer but I was diagnosed with Stage 4B Hodgkin’s Lymphoma in 2010. The one thing that always struck me was the constant comments about Hodgkin’s being the “good” kind of cancer! As if there is such a thing. I went into remission in July of 2010 and was supposed to live out the rest of my life cancer free…ya know because I had the “good” kind. Well I relapsed in May of 2013. I am now waiting for my scan tomorrow morning and as usual I’m terrified…of course I will muster up the strength to fight again if I have to so I can also see my kids grow up but the fear is almost debilitating!

    Liked by 1 person

    1. Isn’t it ironic how these so called “good”cancers take so many lives each year or come back as recurrences? The only good cancer is no cancer at all! I am sorry you are having to go through this again. Waiting for test results produces so much worry and anxiety. Keeping my fingers crossed that all goes well with your scan tomorrow. Please let me know.

      Like

  21. I was 29 during my first diagnosis. I just turned 32 and started chemo yesterday for a recurrence that was found about 10 weeks ago. I opted for a double mastectomy. It had been less than three years was all I could think about. I remain positive however, and refuse to let cancer bring me down. I am a survivor. Thank you for sharing your story and stay strong.

    Liked by 1 person

  22. I am sorry that you had to hear such terrible comments. People are frankly just so ignorant. I was 23 when diagnosed with Stage Ib breast cancer 2 years ago. Now at 25, I worry about recurrence but I also know that all I can do is live each day to the fullest. I am sorry that you have been handed these cards, but your perseverance is something to be admired. I wish you the best of luck in your journey.

    Liked by 1 person

    1. 23 is way too young to have breast cancer. But please remember that while I was young at 29 to get breast cancer, I am still alive 26 years later, even with triple negative cancer and a BRCA1 mutation. We all have to play the cards we are dealt and it isn’t over until its over!

      Like

  23. Sharon, your courage astounds me. I followed you back here from a link on a comment you left on my blog, and I am dumbfounded that — even with all of this going on — you had the time and presence to wish me well with healing from a simple little flu. Thank you so much for giving of yourself this way. I don’t know what to say that hasn’t already been said, and that doesn’t sound trite from a stranger on the far side of the Internet, but I want you to know that I have read your story here with my full presence. I, for one, hope that your strong writer’s voice will sing out for many more decades to come. All my best to you.

    Liked by 2 people

  24. I found myself getting angry for you. I often think that the worst thing about any kind of chronic illness
    is the stupidity of people who haven’t realized yet that they aren’t immortal. Your comment, “do they really
    want me to die” resonated with me. I’m carrying a fair degree of anger from my own day so forgive me
    if I’ve over-reacted. It just makes me angry when people add to the fear and pain.

    Liked by 1 person

    1. There are many people who think disease or chronic illness could never happen to them. These are the same people who try to distinguish your lifestyle from their’s, to prove you did something wrong to get sick. It’s a common form of denial. Unfortunately death comes eventually for all of us and most of us will be seriously ill or injured at some point in their lives. I’m sorry to hear that you had a rough day. Take care.

      Liked by 1 person

  25. The only words that come to mind after reading your post are, “Wow, that’s what you call a survivor.” Life does seem so unfair and oftentimes confusing, but we have no choice but to keep on going. I’m pretty sure that’s why you have two lovely kids – no matter how little support you get from outside, your love for your two kids ignite the power within you and keep you going and surviving. My prayers are with you, and no matter how insensitive people around you may seem, please remember that you are an inspiration and a symbol for hope for others who are on the same path as you are.

    Liked by 2 people

  26. Wow ignorance knows no Boundaries. Im sorry to hear of your rude coworkers. I had stage 3 invasive with lymph node involvement back in 08. Was told it was gone. Back in august i was diagnosed with lung cancer. A primary. Then came the kicker. I also had bc mets to the chest lymph nodes. Stage iv. I recently had the top lobe taken off my right lung and a boatload of lymph nodes taken out. So the lung cancer is gone. I will be on faslodex for the rest of my life for the mets or until it stops working.

    Liked by 1 person

    1. I am so sorry to hear of the new lung cancer and the mets to your chest nodes. That is so much to go through in a 6 year period. I hope the faslodex continues to keep the cancer under control for many years to come. Take care and best wishes. Thank you so much for sharing your story here.

      Like

  27. Sharon, what a wonderful post about horrible realities. I am so sorry. I am a psychologist and I know that people who are scared can act in bizarre and unhelpful ways. It’s not the way it “should” be but it is the way that it is. Fortunately, there are people who can respond appropriately. I wish you the very best in health of all kinds.

    Liked by 1 person

  28. Sharon, you have been through agonizing hell. Your co-workers are horrible. The cruelty of your peers is unspeakable. Rotten. Although I’ve only had cancer once (that I know of), I can relate to having people at work mistreat me. They were very supportive when I was first diagnosed, but when I went through treatment, I was an inconvenience. My boss was nasty to me, and people thought that the days I took off for chemo — my vacation days — were actually vacations and they were jealous.

    Great post and keep writing your story.

    Liked by 1 person

    1. Thank you Beth for your support. People are more supportive at the beginning of a diagnosis. The longer the condition drags on, or in my case, keeps coming back, the more impatient they get. I’m sorry you ran into this at work too. Thanks so much for commenting and for your support.

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  29. I truly hardly know how to respond Sharon. Your colleagues behavior baffles me and hurts my heart, and I can only imagine how hard those additional challenges were when what you were most in need of love and support and on-going kindness. Wishing you only the best.

    Liked by 1 person

    1. Thank you Deborah. Those were comments I wasn’t supposed to hear. Idle gossip to pass the time at work. They never knew I heard and they never knew how their comments hurt me. Its all over and done with now. And they were right – I didn’t die. For which I am very grateful.

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  30. People can be so thoughtlessly cruel. That doesn’t change as we get older. I’m sure it’s mostly because they don’t know how to process the information or how to respond to you. There’s less of an excuse for the medical community. They need to learn how to treat their patients. Hopefully this is getting better over time. Thank you for sharing so bluntly. These things need to be said. And hopefully your writing will be shared with medical professionals who care for those with cancer

    Liked by 2 people

    1. As I say, these were comments I wasn’t meant to hear. Juicy gossip about a colleague to get through another long day at work. I’ve met some terrific doctors and medical staff over the years and well, some that could use some improvement in their people skills. There is a lot of discomfort around the whole subject of cancer, especially if its not the first time a patient has it. The rah rah pep speeches sound a little flat the second, third, and fourth time around. I am just grateful to still be around 26 years later to watch my children become teenagers.

      Thank you so much for commenting on this post.

      Like

  31. No, I’ve never had breast cancer, so can’t even begin to imagine what that is like. What hit me about your post is that I just sat through 10 days of uncertainty while a dear friend waited for the results of a needle biopsy. She had breast cancer 14 years ago, thought she was home safe, and now this. I’m very grateful that the biopsy came back negative. But I no longer have that smug feeling about her cancer, that “oh, she beat it!” sense of certitude.Her mother and aunt have also had breast cancer. You’re right – life is uncertain. Things happen. I certainly have no answers for any of this, yet I do know that I treasure my friend and am so grateful that she is, at this moment, alive, well and happy.

    Liked by 1 person

  32. Sharon, that’s horrible. When you’re doing everything you can to cope with something terrible that’s not your fault, the very least people can do, if they can’t be compassionate, is be silent.

    I already know people are pigs when it comes to gossip about cancer. Probably a throw-back to the day, not too long ago, that people believed cancer was punishment from God. Imagine the emotional implications for the psyche of someone who’d been among the cruel gossips to suddenly find herself afflicted. Top that with the fact that her self-righteous co-gossips dumped her immediately and her husband and kids withdrew because, after all, it was a disgrace.

    When I saw that happen, I decided then and there I would NEVER confide in anyone if I ever got the disease. The only people who know are the health care professionals who found and examined it (and acted like ignorant peasants in their interactions with me) and the dental hygienist who takes xrays.

    Liked by 1 person

    1. Some people like to keep their cancer private while others talk about it freely. My early diagnoses were all pre-internet and I did not know anyone my age with breast cancer so I welcomed the opportunity to talk to others who had the same experiences. Those early years shaped my decision to blog about breast cancer now, to let others know its ok not to be pink and happy all the time. Its also to let people know you can have the BRCA mutation, have recurrences, and have triple negative cancer and still be a long term survivor.

      Liked by 1 person

      1. I know. The last thing I meant to imply was that there’s something wrong with talking about it – without people like you who address the breast cancer candidly, in public, it would still be a horror cloaked in superstition. I just looked up Betty Rollins – it makes me happy to know that she’s still alive and active in health politics.Her book came out just about the time my friend’s mother was sick, forty years ago.

        Liked by 1 person

      2. I remember reading that book when I was diagnosed with my first breast cancer. With the internet not yet invented, I read any breast cancer memoir I could get my hands on. I’m glad to hear she is still alive and fighting for better health care for women.

        Like

  33. I am shocked at the rudeness of your co-workers. That is appalling.
    As for your question, I had childhood bone cancer as a teen (1990-1991), had a year of chemo and several surgeries then was cured and cancer free for over 20 years. Then, in May of 2013 I was diagnosed with stage IV lung cancer. We were all stunned. It doesn’t even follow the pattern of second cancers, and I was tested for an underlying syndrome, but we couldn’t find any cause (and no, I don’t smoke). So, I am also a repeat visitor to cancer land!

    Best of luck to you. I love your blog!
    Tori

    Liked by 1 person

    1. I am so sorry to hear your cancer came back as stage 4 lung cancer. It is shocking that it came back in this form when there seems to be no cause for it. I will keep you in my thoughts and prayers.

      Like

  34. Wow. You are an amazing woman. And BTW you have excellent writing skills. You are a survivor, and what you are teaching your children about life and living is priceless. You would love the support group I belong to. We’d have you laughing and smiling. Blessings!!!

    Liked by 1 person

  35. Hi Sharon. It was hard for me to keep reading after the first paragraph. I can’t believe people like that exist for real. I’m shocked beyond limits.
    Can I reblog this post on survivorsbloghere.wordpress.com ? Your story inspires me and the strength you have is incredible. I’m sure your story will help a lot of people.
    I admire you very much ❤
    Lots of hugs
    Paola

    Liked by 1 person

  36. Sharon, it’s my experience that the only way someone can understand is to have lived through a cancer diagnosis themselves. Until that happens the wrong things are said and intentions don’t get done. Sadly, the people that should be reading your blog are instead chatting around the coffee machine about last night’s Real Housewives and dismissing a colleague’s cancer recurrence. Marcy

    Liked by 1 person

    1. Its certainly true that we cancer survivors instantly understand each other’s stories. Those who have watched a loved one battle cancer usually get it too. So many people believe this could never happen to them because they are too young, eat right, think positive, or whatever. I have met online breast cancer survivors in their mid-20s who did all those things and are already facing a recurrence or a metastisis. There is so much more research needed to stop the suffering from this horrible disease.

      Like

  37. I am sorry you had to hear people say you such insensitive things about your situation. I know the feeling of feeling as if your body has betrayed you, even if my illness was not as serious. I had reacted badly to some medication for a minor problem and was down for a few months. I told my friend that I felt let down by my body. I ate healthy, was very active and practically did everything I was supposed to, so to be ill for such a long period was overwhelming. Therefore, I can only imagine your feelings.

    I am rooting for you to be able to see your children grow and continue being cancer free.

    Liked by 1 person

    1. Thank you so much for your support! It is an awful feeling when your body lets you down and you get sick. I have to stick around to see my kids grow up and hopefully even be a grandma someday.

      Like

    1. Thank you for your kind comments. I wasn’t meant to hear the whispered comments of my colleagues. It certainly wasn’t something they would say to my face. In some ways, I hope they are right. If I must get cancer, I hope it will be caught in time and I will just go on living!

      Like

  38. Wow! Four times😭 I had to read your posting, and I can relate! As of today, I am at three times, waiting minute by minute for that next dx. It is exhausting. I was a bit older than you at my first dx, age 41, and I had three kids, ages 10, 17 & 20. Five yrs later, it was congestive heart failure from chemo. Then another five years for recurrence one, two years later for recurrence three in my lymph nodes on the opposite side from original cancer. Part of my feels lucky to be here at all and the other part feels like my whole adult life has been about breast cancer. I am absolutely horrified by how many YOUNG women are dying from this shitty disease!! Thank u for sharing your story! ((((Hugs))). Karen Marie

    Liked by 1 person

    1. 3 times, 4 times, its just way too many times for one person! I’m getting close to the age where I have been dealing with breast cancer for half my life. I’m sorry you had to go through multiple recurrences plus horrible long term side effects from chemo. Funny how during Pinktober, no one wants to hear our stories.

      Like

  39. I’m leaving you hugs and kisses💞 please oh please don’t give up, those ‘colleagues’ have no common sense, how can they even think like that😡
    l am overwhelmed by your outpouring and would love to just be there for you – to help make you smile 😊
    as always Annette

    Liked by 1 person

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