Tamoxifen Detective: How I got my Teva back

tevaLast year, I shared the story of how I was given a different brand of my Tamoxifen at the pharmacy. It was made by Mylan instead of Teva, the brand that I’ve been in a long relationship with (click here to read the story). I felt confused. At the time, I hadn’t realized there were different brands, and I soon learned that patients could experience different side effects from each of these brands due to the fillers each manufacture uses. (The active ingredients are supposed to be the same though.) Patients can try different brands to see which has the least side effects for them.

This month, I’m learning from online support groups that many Teva patients are experiencing the same situation — their pharmacists are recommending different brands other than Teva. But each patient is being told a different story – either that the Teva product is being discontinued, that there’s a shortage, etc. What’s going on?

I’ve been taking the Teva brand for years now, and although I complain about this medication a lot, I am really not doing too badly on it. My uterus is still healthy (knock on wood!) and I don’t experience hot flashes – two biggies for me. The thought of trying a different brand concerns me. I want to stick with the devil I know. I once did give the Mylan brand a try for a few weeks, and I experienced dizziness and loss of balance, to the point where I thought I was having brain mets! This side effect was scary. I demanded my Teva back, and the pharmacy eventually ordered it for me. I felt a huge sense of relief, and suddenly the side effects that Teva did have on me were more acceptable.

This month I had another worrying interaction with the pharmacist. She stated that the Teva brand had been discontinued by the manufacture, and that my only option would be to go with the Mylan brand. I explained the symptoms I had experienced with Mylan, but the pharmacist pretty much ignored my concerns and suggested I take it anyway. I refused, and left the place.

I went online and did some research, hoping that the 8 Teva pills I had left would allow me enough time to find what I wanted. I learned that, apparently, Teva was acquired by a company called MaynePharma, so I reached out to them directly. The friendly representative I spoke to confirmed that they bought the Teva brand, and the good news is that the fillers are exactly the same – same exact drug and manufacture process. I was given the National Drug Code (NDC) for the 30-day supply (#51862-446-30), and I was instructed to provide this code to the pharmacy so they could place the order for me. MaynePharma even suggested that my pharmacy give them a call, if they experience any issues with the order.

I returned to the pharmacy, hoping to get better luck this time. The pharmacist looked up the NDC # and stated that the drugs would not be available until late March, and that there seem to be a shortage across the board for all the different brands of Tamoxifen. She also refused to contact MaynePharma.

I tried other pharmacies, including the one at my hospital. They all offered me the Mylan or Watson brand. No Teva.

Eventually, I found a pharmacy that would work with me. The pharmacist I spoke to was very empathetic when he heard the struggle in my voice on the phone, as I tried to explain my fear about taking the Mylan (or Watson) brand. The pharmacist said he would try to order it for me. And I am happy to report that I was able to get my Teva brand after all — just a few days later.

An experience like this adds to the difficulties of survivorship for patients like me. Some pharmacists do not realize how we develop a relationship with the drugs we are dependent upon for our lives. After going through a traumatic event, such as cancer, we desperately seek some level of normalcy or consistency. And this is so hard to accomplish, especially when we have no choice but to work within the pharmaceutical system. I don’t like changes forced on me, especially when those changes would make my life more complicated than it already is.

Yes, we have no choice but to take the treatments that are available to us, but it would be helpful if we could be allowed to gain some small level of control back after losing so much— even if it’s as simple as not having to jump through hoops to find and keep the drug we want and need.


A side note: I’d like to encourage everyone to ask their Oncologist what they’ve heard about the Teva acquisition. Was there a reason it was “taken off the market” in some areas? And please come back and share in the comments section.

Posted in c World, Coping after cancer, Tamoxifen, Treatment | Tagged , , | 37 Comments

My Babadook

(This post contains spoilers about a recent movie.)

I took some extra time off from work during the holidays to recharge. 2016 was a very tough year all around. I was looking forward to doing fun things to distract myself and see some friends I haven’t seen in months. I really planned to end the year in a better mood, but instead I got sick with a terrible cold. So I stayed home and tried to rest, something else I haven’t done in a while. I thought catching up on movies would be a fun thing to do. Among the movies was an Australian-Canadian psychological horror film I’ve been wanting to watch, The Babadook.

The Babadook is about a woman who loses her husband in a car accident as they drive to the hospital, where she delivers her baby that same day. She raises the child on her own while dealing with grief, all the time becoming more and more threatened by a monster from her child’s picture book. I interpreted the movie’s Babadook monster as a physical representation of the woman’s unresolved emotional states of grief and denial. Both emotions affected her relationships and eventually took over her home and sanity. It took the woman years to start creating some meaning and to bring back some normalcy into their lives. In the end, the woman’s Babadook wasn’t completely gone. She kept “it” in the cellar where she would visit it from time to time. She did not allow her child to be exposed to her pain anymore, but rather learned to live with it, keeping it separate.

In the movie, I saw how the woman was being treated by friends and family while she was deep in her long-term pain. Her sister, who appeared to be her only family, didn’t want to deal with the heaviness and would often avoid her or challenge her. “It has been seven years!!” she yelled at her widowed sister one afternoon. This lack of empathy bothered me because I can relate to it. It reminded me of the times I’ve been asked to move on from my grief or from cancer. I also saw myself in the grieving woman, and it made me reflect on whether or not I’ve allowed myself to sink in my own darkness, and how long I’ve been there.

I believe in allowing ourselves to go through all the emotions any given situation provokes. And when the situation is painful, we decide how long the healing takes. I don’t think someone else should be telling us that we are taking too long with our grief. It’s personal.

I’m not discounting our families’ or friends’ desire to see us move past cancer. I know they can feel scared for me and helpless to know what to do about it. Of course they want me to move past it. I wish the same.

But, in my case, cancer is my Babadook, one that I manage to keep in my “cellar.” I deal with it the best I can. I can’t completely walk away from it because I’ve considered it to be part of who I am. And yes, it has defined me in many ways. It has pushed me to make some sacrifices too. I’ve needed to distant myself from some relationships in order to allow myself to just be, while allowing others to take a break from my reality. Because yes, it can be overwhelming and painful for others who haven’t been in the same situation we have.

In the movie, I appreciated how the writer used the last scene – when the woman visits the Babadook, now locked in the dark cellar – as a metaphor. And this is the message I took with me. The scene acknowledged that it is important to recognize and deal with our oppressive emotions. And that it is even therapeutic and meaningful to keep those fears and emotions alive, to allow us to keep up our awareness and be vigilant over the problem. It is an ongoing effort to ultimately reach a level of inner peace and create that sense of balance we all crave.

Posted in Awareness, Coping after cancer, Mental games, Reflections, Self Awareness, Support | Tagged , , , , , , , | 7 Comments

Too formal

1307966-sketched-red-haired-white-female-doctor-caring-for-a-young-cancer-patient-poster-art-printI find that the culture at my cancer hospital is too formal. And sometimes I need a hug or two. Maybe I am asking for too much.

I recall my first visit. I first met with my surgeon, who was distant and to the point. He immediately did a breast exam and proceeded to tell me what the treatment plan would be for me.  I started to shake, sitting across from him. He felt bad and held my hands, “this is serious but we’re going to treat you to get the best outcome possible, don’t worry,” he said. My surgeon was very kind to me. He was also very competent. I remember him asking the nurse to contact a counselor so I’d have someone to talk to. That counselor came to meet me right away after I was done with my consultation.

Then, for my first oncology visit, I initially met with a medical resident. I thought that was odd, considering it was my first time meeting with my oncologist for such an important appointment. At the same time, this also gave me the impression that perhaps my case was not too serious. However, the resident was a bit too dramatic for me. She took long pauses between words as she drew little images of cells on a piece of paper, “so…this is…your…cell…and this is…your cancer…” She was showing me the survival rates if I opted to take chemo, Tamoxifen and radiation as my treatment regimens. She then proceeded to show me how Tamoxifen binds with the receptors so cells won’t feed from the estrogen – all done through her amateurish drawings. I already knew I was taking all the necessary treatments for my cancer. And where was my oncologist?

I wanted a hug.

Eventually, my oncologist came into the room. From the start, Dr. O was very formal and by the book. She immediately spoke about research and statistics and explained how treatments were going to benefit my case.  And I was just sitting there with my head tilted, staring at her, without really understanding what those research numbers meant for my situation. And at that point I did not care. I had already focused on the 86% 5-year survival rate the resident had given me if I took all possible treatments.  I couldn’t deal with anything else at that moment. Dr. O. was very competent but I got no hugs on my first consultation.

After several visits, I decided I would try to get my oncologist to be more affectionate with me, even if this was risky for her. I started by giving Dr. O a hug at the end of each consultation. Then, eventually, I started welcoming her with open arms as she entered the room, “Dr. O, so good to see you!” and she would reciprocate. Now she’ll playfully say things like, “Where is she? Where is she?! There she is!” as she enters the examination room. And yes, we hug, always. It feels good. Now the experience feels more human to me. I feel less tense and less afraid.

I continue to see my radiation doctor. Everything about this experience has been very “robotic” and emotionally draining— more so than chemo. It has been hard for me to get close to Dr. R. She is very serious and just takes care of business. I’ve tried getting her to be more warm after all these years, and sometimes I’ve managed to make her laugh with my jokes. Who would have thought I could joke in an oncology room? But there is one thing I appreciate about her. She is very flexible with my care, which is why I enjoy seeing her once a year. I’ve told her about my desire to build a family, and out of all the doctors I’ve seen she has encouraged me the most. Dr. R feels very confident about my situation and always encourages me to have quality of life, even if it means I stop taking Tamoxifen. Next time I see her, I am going to hug Dr. R, whether she is emotionally ready or not.

I guess you can say I have a good balance among all my oncology doctors. They all contribute to my physical and emotional care, one way or another. I am truly grateful for every one of them.

I can’t completely disregard the feelings of these oncology doctors. I am sure there’s a reason why my cancer hospital is so formal. What happens there is very serious. These doctors lose patients all the time. It must be tough for them too, which is why they don’t personally get too close to their patients. I still don’t know how they do it, but their jobs are very important and necessary. They also need to be kind to themselves in order to keep performing their responsibilities.  But I must tell you, a hug can make a big difference in a patient’s care. Maybe I am asking for too much.


How would you describe your relationship with your Oncologist(s)?

Posted in Awareness, c World, Coping after cancer, Support | Tagged , , , , , , , , , | 20 Comments

Wish list

giftsThere is this writing program sponsored by my cancer hospital that allows patients to express themselves and get an opportunity to publish their work. Each year, I try to write a piece and submit it for publication. For this year, however, I tried to write what I didn’t realize would be a complicated story for me – a lot of buried emotions came alive.

I’ve been focusing on childhood stories about my grandmother and me, and this year was no different. I was inspired to write about that one Christmas when I did not get any presents. I thought it was an interesting story to share for so many reasons— the cultural aspect of it and the feeling of injustice from a child’s perspective were both intriguing topics for me. No one ever spoke about that Christmas in my family. I never mentioned it either, mostly because I felt embarrassed. (For years, I wondered what I had done wrong that Santa did not forgive me for!). I now understand that it was emotionally painful for everyone involved. But still, this experience was such an eye-opener for me. Whether it was intentional or not, I think this was the first day I had a taste of adulthood – when I realized that Santa doesn’t always show up, and you sort of have to roll with it.

I never finished writing the story this year, mostly because I got a late start. The thing that was surprising to me is that, as I was writing it, I started to cry. After all those years, I did not think this specific memory would affect me. But I didn’t cry because of the sadness I remembered feeling that year. The tears came from something else.

The last month or two, my fiancé had been asking me for a wish list to get some ideas for presents for me. It was very hard for me to come up with a simple list of things for him and his family to consider. I haven’t really celebrated the holidays for a long, long time. And to be honest, I’ve always considered it to be just another distraction. And the older I get, the more complicated I find it to be. I know it’s a good reason to reconnect and just do little things for one another – a reason to do some escaping from reality perhaps. But even doing these things has become overwhelming for me. Where did my Christmas spirit go?

But going back to that childhood story I could not finish; I’ve been thinking about why I felt so emotional about it. I realize that as I get older, my wishes become more elusive. I stopped wanting anything concrete long ago. What I really want can’t be purchased or recovered.

Looking back to that Christmas day when Santa didn’t come, I realize now that, as poor as we were when I was a little kid, I really had it all. I was just a child, who like everyone else, didn’t realize the richness of her world. It didn’t matter that there were no presents under my Christmas tree that year. I had a wonderful home where I always felt loved, protected and cared for. I had my innocence, my health (without the need of constant monitoring), my youth, and the best grandma anyone could ever ask for. I guess those would be the items I would put on my wish list today, if I could. The things that I wish so much I had back in my life.

I know many of you probably feel the same way too. And it’s totally OK to miss what we once had, even when there are other blessings in our lives.

Wishing you all kindness and a great sense of peace for the New Year, and the desire to create new meaning in your lives.

Posted in Awareness, Family, My Wishes, Reflections | Tagged , , , | 11 Comments

My Caregiver

my-caregiverI feel like I’ve taken my caregiver for granted. I know he is always there, waiting to please me. Always aware of my struggles and trying to comfort me in every way he can, even when he himself doesn’t have the energy to invest and may feel more fearful than I do. But he cares. A lot.

My caregiver is also my partner, so he plays two roles simultaneously, although sometimes it feels as if he is more of a caregiver to me. After dealing with the trauma and collateral damage from cancer treatments, navigating the relationship can get complicated. There’s been some loss of identify for the both of us.

I’ve never really taken the time to fully understand the scope of his responsibilities – those he has created for himself and has committed to — and the complexity of his emotions because I am too busy trying to deal with my own. I know that being a caregiver is no easy job. He has sacrificed a lot for me. I am so grateful for him but I also feel guilty because I am not able to be there for him as much as he is for me. I depend on him emotionally a lot of the times, and he is so focused on me, but I haven’t been able to offer the same level of support.

Intimacy also feels weird for the two of us (Tamoxifen is no help). We love each other. That is not the issue. The issue is we’re traumatized from this cancer experience that hasn’t gone away for either of us. We want to feel normal again. To be OK with the realization that things won’t be back to the way they were. We shelter ourselves together, but creating a safe place has become challenging.

And I worry about his state of mind. Lately, I’ve noticed the emotional changes in him. He is not doing too well. There’s just too much going on all around us. Too many problems to solve. Too many losses. Too many forced/unwanted changes. His fear of losing me too soon has impacted his mental and physical health. And still, he chooses to stay.

I started to notice his debilitation this past summer. I’ve noticed his teary eyes from time to time. He is not only aware of my health, but he also knows about my friends – those who are stage 4. He is the one I can turn to right away to talk about everything, including my worries and sadness. But he has no one to reach out to. My caregiver/partner is the isolated/quiet type of guy, always keeping things inside. This doesn’t mean he is not crying out for help.

I am no help. It’s hard for me to keep things to myself. I know other patients can hide their true feelings and keep some upsetting news to themselves so as not to overwhelm their loved ones. It’s not like I express every single thing that’s on my mind and heart, but I say enough to make him worry or upset him.  Having cancer has become too casual for me. It’s just the way my situation played out. In a way, I think expressing myself is healthier for me, but it might not be necessarily healthy for others (and it’s hard to keep a balance). Sometimes I catch myself saying insensitive things to him, like, “you should be used to this life by now” or “come on, learn to look at death in the eye.” It’s horrible. I know. Sometimes I feel cancer has turned me into a jerk. But in reality, I am really telling those things to myself.

I think as a caregiver he knows and understands my frustrations. He knows I never mean to hurt him. It still doesn’t excuse my behavior. I need to be more mindful when I express myself to him. I mean, just because he appears to be strong, for me, doesn’t mean he isn’t broken. How can I help put the pieces back together when cancer will always be part of our lives?

But I can’t possibly expect him to get used to the idea of losing me forever. It’s irrational of me.  I know because I’ve gotten a taste of his fears, from a caregiver’s perspective. Recently, he has been experiencing health problems. I’ve been worried for him and when I imagine the worst (you can’t blame me), I get really anxious. I can’t imagine losing him either. Just the thought of it hurts. A lot. And to think this is how he feels a lot of the times.  Being a caregiver is no easy job, even when it’s done with unconditional love.

I am a realist but maybe I should be more selective of the things I say. Let me give you an example:

My caregiver never misses my Dr.’s appointments. He dresses up for them, too. “You don’t need to dress up! We’re just going to my appt,” I say to him. “It’s a very important appt,” he replies. He says I love you and I am here before I head into that…oncology room. And when I come out, I can see the anxious look on his face, wondering how everything went. “My mammo was clear…for now” I said to him recently. He doesn’t need to be reminded all the time that there’s no cure for BC. Did I really need to say “…for now” when referring to my clear mammogram results? He is aware of my reality. Perhaps I should let him enjoy those few moments of good news. And what the heck, I should enjoy them too. And I really try.

When he received the good news, he took a deep breath and held my hand. It’s amazing what a piece of good news can do to his state of mind. I immediately noticed the difference – I see momentary relief and hope. We both try very hard to hold on to those moments.  However, I think the stress that has accumulated these past years since my diagnosis has caught up with him. And me.

Just like we patients are never done with cancer, the job of a caregiver doesn’t end either, especially when they are emotionally connected with the patient. They suffer with us.

I am not sure what the solution to this survivorship challenge is. All I can say is that I am aware of his unconditional love for me. And that I am so grateful for him. I also know he’s hurting. At times I wish he was not in my cancer mess. He should be in a healthier and happier situation. But he loves me. And I love him. All we can do is continue to hold each other’s hand and hold on to the good news we get and enjoy them for as long as they last.

Posted in Awareness, c World, Coping after cancer, Family, Reflections, Self Awareness, Support | Tagged , , | 21 Comments


kiddoHere’s something about me: I love interacting with old people. If I get invited to a gathering, you’ll always see me talking to the older crowd. Being someone who was raised by her grandparents, I always had an appreciation for the stories they had to share and the memories they had collected. As a kid, listening to them, it gave me a desire to want to grow old myself —of course, without having a real awareness or ability to understand the full implications of getting old and dealing with what would lie ahead in life.

When I was in my teens, I volunteered at a home for the elderly near where I lived. I gained a lot from that experience. I learned about the power of companionship and the importance of being a good listener. These residents built an environment for themselves, with what they had. Some demanded more than others. I saw that it was difficult for some of them to accept their reality. And others adjusted just fine. Just like everybody else.

I recall this very old man who always called me “kiddo.” I didn’t mind it. In fact, I liked it. At the time. I felt like a kid then anyway, despite my challenging life circumstances at the time. (Struggling to adjust to being brought to the United States to live when I was a teenager.)

That was a long time ago. Now, recently, someone else called me “kiddo.” I felt very different about it this time. The name suddenly wasn’t fitting anymore. This time, it hit me hard and it became clear that, deep down, I feel really old. Mostly because of everything I’ve been through related to my health.

“I am older than you think,” I said to the 60-something year old guy who called me kiddo. He laughed and asked, “how so?” “Do we really need to get into the details?” I replied with a forced smile. When he saw the tired look on my face he realized what I meant. Then, we proceeded to talk about something else. The guy is not totally aware of my hardships but he knows about my cancer diagnosis and the pain I continue to endure.

Perhaps I am overly sensitive. I am sure the guy only meant I was much younger than he was when he called me “kiddo.” And maybe he even sees himself as a really old man compared to me. But the thing is, I am no kiddo anymore. And more than ever, I am very aware of what lies ahead. I have very complex decisions to make about my life – some that probably people his age might never have had to make, not under the same circumstances at least.

And here’s another thing: I keep losing friends. Frequently. I realized recently that I am a lot like my fiance’s parents — who are over 70 and start every day looking in the obituaries to see who they know. In a way, I’m already doing that myself — keeping track of patients I’ve come to care for or reading about all the other bad things that happened in the world over night, as soon as I wake up each day. And yes, I am in cancerland, where, unfortunately, bad news is expected. Not to mention, I actually need an oncologist – in my 30’s. It still sounds surreal to me. This ain’t no kiddo’s life!

All this cancer experience has aged me, both physically and mentally. And real fast, too.

In a way, I feel a lot like those old people from the home I volunteered at. I am still trying to adjust to my reality — how long does it freaking take? Although I am not the same age as these elderly people were, I still feel pretty beat up. But I am lucky to have companionship and a great listener: my fiancé who is also my caregiver. He puts up with all my demands and needs. And though he’s older than I, he never calls me kiddo — although he admits that he has said it, maybe with envy, to a few people who strike him as young and free and unburdened. I confess I’ve felt the same way too.

I wish I felt like a kiddo again. I mean, I still want to grow old, but at a much slower pace.

Posted in Awareness, c World, Coping after cancer, Loss, Reflections, Self Awareness | Tagged , , , | 13 Comments

When I get too close

When I meet another BC patient, whether it’s online or in person, it becomes personal right away.

There’s a risk I take every time I get too close.

This is probably not the perfect analogy, but I remember the first time I got hurt in a relationship with an undeserving guy. I told myself, “not again!” I made my heart unavailable for a while. You don’t completely forget. But time does go by. You move on. And eventually you find someone new and give it another try, even with the realization that you could experience the same (or worse) pain again.

That’s sometimes the way I feel about other patients I come in contact with. I’ve gotten close to some. I am aware of the risks I’m taking – losing them too soon, opening myself to intense feelings and sharing and the fear that comes with that, and being reminded that their death could be my fate too.

It’s interesting how spontaneously we patients can connect with one another. Just the other day I had lunch with someone I’ve been working with for a while. I had no idea she had gone through breast cancer too. The minute we found out about each other’s diagnosis, we became closer right away. We talked openly about a lot of personal things, aside from our cancers. It felt as if we’d known each other for longer than we’d realized. And at the end of our get-together, we hugged for a while.

When we patients witness each other’s vulnerability there’s an instant level of intimacy that comes from the shared experience of having gone through cancer. It’s a unique kind of support. It’s beautiful, in a way, although the reason sucks.

Some of you might already know about Vickie Yong Wen’s passing. She wrote the blog iwantmorethanapinkribbon. Vickie died from metastatic breast cancer. Recently, I read Ann Silberman’s tribute to Vickie. In her post, Ann expresses how she had been devastated after losing her dear friend Sandy, and how she was not ready to build another relationship with another patient. In this case, the other patient was Vickie. Eventually they built their relationship but Ann was hesitant at first. I completely understand where Ann is coming from. I’ve been hurt too and sometimes I’m just scared to get too close again.

I’ve been reflecting on the risks we take when we get too close to other patients, and how we cancer patients relate to each other.

There’s the initial connection we make when we find out about each other’s health situation.  We connect. Intensely sometimes. But we’re cautious. We’re also trying to live our lives as normally as possible. Although we’re glad to have met, there will always be the cancer association. We give each other space. Weeks, and sometimes months, go by before we talk again.

And then, suddenly, in my case, I develop this need to know how they are doing. They’re on my mind. I become immersed. I start to care. A lot. I want them well. I also need reassurance that if they’re doing well, that means I might be well too. And just like that, I am sucked into a situation where I know I have no control as to how it’s going to end. At the same time, I don’t want out. I am in to stay.

I consider these patients my friends. Some of those friends have died from MBC, and yet, I wouldn’t change having known them despite the hurting I’ve experienced. They all have contributed to my own recovery and I am forever grateful – Claudia, Carrie Sue, Eileen, Jeanne, Kari, Katrina, Cheryl, Lisa, Linda, Dawne, Meena, Robert, Libby, Olga, Laurissa, Doris, and my special friend Cathy. As I read this list of names, I am shocked to see how many friends I’ve lost. It’s painful for me to read this list, which isn’t even complete.

I had just started to follow Vickie’s blog last year. I can tell you that I’ve learned enough about her for her death to affect me. I admired Vickie. She advocated not just for the metastatic community, but for everyone who has been affected by breast cancer. She educated the public with facts about this devastating disease. Vickie also had a strong faith and this was one of the qualities I liked about her, as I often question mine. I learned a lot from her. I’ll miss her.

Yes, there’s a risk I take when I get too close. And I try to be fine with that. And besides, we wouldn’t feel the full spectrum of love if we didn’t open ourselves up to the point where pain was possible too.

I’ll never forget my friends.


Posted in Awareness, c World, Coping after cancer, Reflections, Support | Tagged , , , , , , , | 12 Comments


pinkbrushphoto_13690_20100311My intention was to try to avoid Pinktober this year, especially after losing my friend Cathy last month. I’ve avoided going shopping to avoid being aggravated by all the pink branding. But sometimes it’s just unavoidable. Suddenly you see a big pink truck while waiting for a bus, or a pile of pink ribbons at the breast cancer center check-in area with a huge sign that reads, “It’s Breast Cancer Awareness Month!”— Except, EVERY SINGLE PERSON who enters this building is already a breast cancer patient. They are aware every day. And, at this point, so is everyone else.

I am sitting here wondering how much longer it will take for the pink culture to evolve. How about we start by creating legislation that pushes commercial companies to donate a certain minimum percentage of their Pinktober profits to serious cancer research — especially for advanced stage disease where the need is most desperate.

I’ve also been noticing the divisions in the cancer community that come out during Pinktober. Some of us rage against the annual pink hype, while others embrace it. Do these differences in perspective have to do with the way each patient chooses to handle their cancer, or does it have to do with the facts each patient is/wants to be exposed to? Or, like everything else, is it just that different types of people (even with shared experiences) simply develop different ways of viewing the world?

In the last couple of weeks, I’ve seen the online discussions where patients argued about their position on Pinktober. One person questioned why some of us express outrage about other survivors wanting to celebrate each October. That misses our point. Some patients even call their fellow patients who disagree with pink culture “12-year-olds” and “bitter” because, according to them, we refused to see the “positives” in all the hype. But our negative reaction has nothing to do with bitterness or immaturity. The problem isn’t whether patients should celebrate being alive (of course they should) or wear pink. The problem is that in all of this pink business, the reality of breast cancer is not being shown, and a lot of people in the public aren’t learning much, despite all this “awareness.” Stories are only half told. And the patients whose stories most need to be heard are being ignored.

Let me tell you about what happened to me last October, and maybe you’ll understand why I don’t want to tolerate the pink-washing of cancer anymore.

One day, representatives working for a major TV show reached out to me because they found a post I had shared about my friend Cathy, who was dealing with stage 4. The show was casting for a “compelling” story to present during breast cancer awareness month. They thought my friend’s story was very touching so they wanted to showcase her. I was happy to hear that they were considering having a stage 4 patient on their show.

I was asked a lot of questions about my connection to Cathy, and about her ability to travel and present herself at the show. They asked if I was willing to be part of the show too. I said that depended on what was expected of me. But, they felt Cathy and I were perfect for the show, because we were both cancer patients and also friends.

The first thing I suggested was that maybe we could focus on research for stage 4, since Cathy was going through it and I was also at a risk. The topic would have been ideal for “breast cancer awareness” month, I thought.

Well, that is not exactly what the show has in mind,” I was told. “We were thinking about how your friend Cathy helped you during your treatments, and how now you have the opportunity to help her by bringing her to the show to get a spa day. Your job is to bring her here and the two of you will be pampered. She can’t know about it, though. It would be a surprise.

In other words, we would be part of a script that had already been written.

I told them I felt uncomfortable presenting myself that way. I didn’t think that Cathy would feel comfortable with it either. I offered to help get Cathy to the show, but only if she agreed in advance, and I said that I did not want to be part of their script. The only way I would agree to be in the show was to talk about research.

That’s when I was told that I had to agree with their plan — and that there were other patients that they were reaching out to. They couldn’t promise me anything.

All of the sudden, our story wasn’t so perfect for the show anymore.

Maybe I should have played dumb and went with the flow, and then showed up at the TV show in my “pink is not a cure” t-shirt. But they probably would have had me sign a contract. A contract that did not represent what I believed in. A contract, that to me, represented that it was OK my friend was dying from MBC. I didn’t want to be part of the problem.

Cathy and I did not take part in the show. Days later, a bunch of survivors appeared at one of their shows during October.

Come on down and show us your Pink Spirit. We have festivities planned throughout the morning on our big ‘Day Of Giving’.”

Knowing what I know now about how private and protective Cathy was about some parts of her diagnosis, I know how mortified she would have been to be brought to a TV studio with millions of people watching, live, and having herself exposed to the kind of attention she did not want and that truly would NOT help her.

I never told Cathy about this experience because I did not want her to feel the way I felt. She told me she hated the pink culture, even if maybe she did not confess that to others who were close to her. She knew I’d understand. There was no way I was going to allow her story to be told in a superficial way.

Of course, I get it: the producers of that show did not want cancer to be TOO upsetting to the TV audience. Viewers would have changed the channel. The show just wanted to be the recipient of the good feelings created by an uplifting story, even if they were hiding the reality. But that is offensive and unproductive for a lot of us patients who can’t ignore the reality. It’s our life.

So, for those who ask, that’s an example of where my anger is coming from. If I was already skeptical about pink culture, interactions like that turned me off to pink business for good.

For me it comes down to one thing: I WANT A CURE.

And let me clarify, I am not against patients receiving any form of support they can find. That is not what we, the “angry ones,” have a problem with. It’s that, once again, many of us in cancerland are invisible, because only one side of the cancer story — the uplifting, made-for-TV side — is being presented in Pinktober. If the cancer-kick-ass-pink-ladies stories are all people see and know about, then there will always be the lack of progress and education (and a delay in finding a cure!). If people don’t know the whole truth, what is going to make them want to contribute real attention and money and political pressure for serious research?

As long as organizations find vulnerable cancer patients they can exploit for good publicity, these types of distractions will never end. And we’ll continue to have over 40,000 people dying from MBC every year (in the U.S. alone) — some will include the cancer-kick-ass-pink-ladies.

I don’t want other patients and survivors to refuse the support and attention they may need to keep them going. But in all this pink business, maybe we can start by asking ourselves one question:

How will this contribute to saving my life if I ever become stage 4?

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