Tamoxifen: The detective work continues

Posted on January 29, 2023 by thesmallc

I am still here, gratefully and anxiously.  

So, this is a very random post — random, just like Tamoxifen side effects.

I thought this topic deserved a discussion, because I know how much patients struggle with Tamoxifen and sticking to a brand that works for them, at least until pharma changes our plans.

I have some updates about Mayne Pharma and Teva brands.

A few years ago, I wrote about how Mayne Pharma acquired Teva (my brand), making it difficult for patients to access the Teva brand, because, well . . . the medical community doesn’t really address these issues with their patients and pharmacies. They only follow protocols. You can read my previous related posts here.

If you have been taking Mayne Pharma Teva (NDC CODE: 51862-446-30; 20mg/30-day supply) but can no longer access it, this is because Mayne and Teva are no longer collaborating. Mayne Pharma now manufactures their own Tamoxifen inhouse and so does Teva. The good news is that their formula has NOT changed. If you have been doing well on Mayne Pharma Teva, you can try the new NDC CODE: 51862-643-30 (for the 20mg Mayne Pharma bottle) and 51862-642-30 (for the 10mg Mayne Pharma bottle). You can visit this website to find out about the active and inactive ingredients. Simply enter the NDC code at the top, and scroll down for this information. You’ll be able to compare and confirm that the ingredients have not changed. (Note: Mayne Pharma Teva was really Mayne Pharma’s formula, NOT Teva’s.)

Now let’s talk Teva. If you used to take this brand prior to Mayne Pharma’s acquisition of Teva, the good news is that Teva is back! I spoke to one of their medical representatives and they confirmed that they have NOT changed their formula since 2011. So, if you were taking this brand and did well on it, you can give it a try again. Simply give your pharmacist this NDC CODE: 00591-2473-30 (for the 20mg bottle) and 00591-2472-60 (for the 10mg bottle).

As for me, I will continue with Mayne Pharma’s formula and see how I do.

But wait, I’ve already done 10 years on Tamoxifen! That’s right, I have. However, my oncologist has extended it for me because of my age and ATM mutation. (Unfortunately, my ATM mutation comes without the ability to withdraw cash). How are my side effects, you asked? About the same….

Has your Dr. extended Tamoxifen for you? How are you doing?

Posted in Post-Treatment, Tamoxifen | Tagged | 3 Comments

2018 Summer Blogging Challenge

Posted on August 20, 2018 by thesmallc

Nancy, at Nancy’s Point, has sent us another challenging! This is her fourth summer blogging challenge, and I am happy to participate. Here is her list of questions with my responses. And if you are a blogger of any type, I encourage you to be part of the fun.

 

1.How long have you been blogging (or reading blogs)?
I have been blogging since 2015. I took a long break because this year has been complicated, but I am slowly trying to get back because – well, who is ever done with cancer? Survivorship continues, thankfully, but it’s still challenging.

2.How has your blog changed?
I am not sure that it has changed all that much, partially because I knew what my goal was. I knew I wanted to tell my truth about living with cancer to help myself and others who might feel isolated while going through the same experience. I continue to share about my survivorship challenges, which aren’t limited to dealing with cancer. From time to time, I find myself touching on other personal topics such as my childhood, relationships, and even my wonderful pets.

3.What is your biggest blogging challenge/frustration?
I have to agree with Nancy on this one – it would have to be time, but also my struggle with building some sort of life balance. Yes, I have found blogging to be very therapeutic and rewarding but I also want to create more meaning in my life. I am still trying to figure out how to find that meaning.

4.What is your favorite post that you’ve written (or read)?
I have two favorite posts I have written: It’s not about you and The worst part. And during my search, I also found this one which still makes me laugh, Survivorship: my life illustrated.

5.What are your goals for your blog? (Why do you read blogs?)
When I started blogging, my intention was to use this platform as therapy for myself. I find survivorship to be very hard, especially because I am a realist. However, if my messages are reaching patients and this is helping them cope, that, to me, is rewarding. And if my messages go as far as touching people who have never gone through cancer, that’s even more amazing to me because these are the people who I really am trying to get through to, to make them understand.

6.How many blogs do you read on a regular basis?
I have to admit, I haven’t been reading a lot of blogs this year (same reason as questions #1 and #8). But I do enjoy random blogs focusing on different topics, not just health. My goal is to slowly come back to the blogsphere community.

7.How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)
What a great question! I am a very private person, although you wouldn’t be able to tell by the kind of stuff I write about on my blog. If I told you the kinds of things I keep private, you would be surprised. But it is all about comfort. My comfort, in this case. When it comes to my blog, I consider myself to be open. I wish I could tell you everything! I find it important to share because people in general need more education. And our culture needs to shift to encourage more education, empathy and kindness.

I also have a career to think about. Well, I think I am a little late on that one—maybe I’ve exposed my situation and life enough to get myself into a little “trouble” in this area, but who would want to work for a company that would hold my life against me? It’s all about being REAL and wanting to support others. But to answer the question, I do have some blog boundaries, especially when it involves other people’s privacy.

8.When things get hard, what keeps you blogging (or reading blogs)?
This year I could not get myself to blog because I was dealing with big decisions and I felt I could not — and am not yet — ready to express myself about those things I was facing. I needed the time to re-evaluate some areas of my life. Sometimes we need a break in order to deal. And then there are times when blogging is my therapy. It has been since I started, but this year has been challenging to keep it up. I have missed our community. My readers. And all the support. Just writing this post lifted me a little. It’s the act of blogging and feeling the connection while releasing all that tension that keeps me going.

9.What is your biggest Cancer Land pet peeve today, right now, this minute?
Once again, in agreement with Nancy: It’s the “stay positive!” messages. Always hated this statement and I hate it even more post-diagnosis. I am surprised I am able to keep calm and polite when people suggest it to me. Wondering how long this will last considering my lack of patience these days.

Once diagnosed, everything changes. EVERYTHING. And being diagnosed at such a young age you face different issues and many of those issues relate to your day-to-day quality of life. If you can’t talk about your life to those close to you, then survivorship becomes even more difficult. But we still have the power to create a healthy environment for us. This could involve ending relationships, building new ones, seeking help (for your mental health), and removing yourself from toxic situations. We need to be allowed to be human from time to time. Be kind to ourselves.

10.What one piece of advice would you offer to a new blogger?
Be you. But also be open to other perspectives.

11.Share something most people do not know about you. A secret sort of thing.
I own close to 100 collectible dolls. Some people have judged me, because that’s the natural reaction when they don’t understand something. My guy has felt sad for me, because he thinks these dolls might represent something big I am missing in my life – such as not having a child – I suspect he is not the only one who feels this way. (Some of these dolls look like real children.) But this is not the case. I have collected dolls for many years now. I have a huge appreciation and admiration for the doll artists I’ve discovered throughout the years – such as Annette Himstedt and Madame Alexander. My dolls bring me joy and maybe this is related to my childhood. At first I thought of the hobby as an investment, but I now realize I could never part with my dolls. Somehow I always knew I would collect dolls, since I was a child. I did not have that many dolls growing up and kids in my neighborhood always got nice dolls.

Anyway, here’s a nice article I came across recently about a doll collector, Don’t Tell Your Parents to Stop Collecting.

12.What do you enjoy doing in your spare time?
I enjoy biking, reading random online articles about all kinds of things, learning about collectibles and vintage items, playing with my cats, spending time with my honey, walking a lot, writing, photography, watching interesting TV shows (with my honey) such as “Better Call Saul”, traveling (especially to Montreal, Quebec!), listening to ambient music, among other things.

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I want to take this opportunity to thank all my readers for their patience and support since I started blogging. A big thank you to my fellow bloggers too for showing me kindness.

I haven’t been active on my blog this year, but my plan is to slowly get back. I have several posts in the works that I hope to share soon. Meanwhile, share something you’ve appreciated about our online cancer community and what you hope to read more of – topic-wise.

 

Posted in Awareness, Support | Tagged , , , , , , | 6 Comments

It’s about the patient

Posted on July 24, 2018 by thesmallc

A couple of years ago, I received a message that a family friend, Floris, had been diagnosed with leukemia. From the time I learned about her diagnosis, I was concerned. I knew she wasn’t allowed visitors due to her poor immune system, so I wasn’t able to see her except for some occasional online chats. But last summer my mother informed me that she was not doing well. I had the urge to see her so I paid a visit at the hospital where she was being treated. We talked for hours, pretty much about everything. It was nice listening to each other after not having seen each other for a while.

During my visit, Floris expressed some concerns about continuing her treatments. She had stopped tolerating them. At the time, she was a candidate for immunotherapy. Her doctors started her on a new chemo regimen, but sadly, the cancer was too aggressive and her body wasn’t able to recover enough to continue with the new treatment plan. The doctors said that there was nothing else they could do for her. This was upsetting, and I couldn’t help but wonder if there were other options for her at other hospitals.

I began searching for trials and hospitals that might offer a second opinion. I informed my mother, who was also worried about her friend.

I suggested a second opinion because it is what I would have done in Floris’ situation. (It’s what I did when I was originally diagnosed.) But Floris decided she did not want to pursue more treatment options. She decided to go back home, outside of the U.S., to see a naturalist. I knew what that meant. It was difficult for me to accept it. I wanted her to live. But Floris passed away a few weeks later.

After I received the news that Floris had died, a thought crossed my mind. I thought Floris made the right choices for herself and did cancer her own way and that alone should give us a sense of peace. It was about her.

We sometimes get caught in our emotions and hopes and fail to see the fact that sometimes patients get tired. Sometimes they reach a point where they’ve accepted their mortality because the collateral damage has reached its peak. Sometimes there really isn’t much we can do – not doctors, not us, and certainly not naturalists. All we can do is be present and respect their choices. This definitely doesn’t mean giving up. It means accepting the things we cannot change nor have control over.

As cancer patients, we should be allowed to own our decisions — and we shouldn’t need to defend them. I know sometimes this can create controversy and upset among loved ones, and it can make an already difficult situation even more confusing and stressful for we patients who are trying to proceed with our treatment plans. In this case, our family friend chose both options – conventional medicine as well as the alternative option – because it was what gave her the most peace and control.

I might be left to wonder whether her decision to see a naturalist was a reflection of desperation or a reflection of her acceptance, but does my wondering even matter? Another patient might choose something else. And these decisions are OK as long as the patients are the ones who make them. (Of course, I am NOT OK with people who take advantage of a patient’s desperation by offering false claims about cures — but that topic is for another discussion.)

As fellow patients, we all carry a responsibility. It’s fine to offer our wisdom and experience when we are invited to. Personally, I am a believer of leading with scientific evidence. However, sometimes there are patients that would rather take a different route. As much as this may hurt, we have to let it be. Accept it. Respect it.

Patients must have the last word when it comes to treatment plans and their lives. And no matter what our place in their lives may be, it’s always about the patients.

Posted in Awareness, c World, Family, Loss, Support, Treatment | Tagged | 9 Comments

2018: To hope or not to hope?

Posted on January 1, 2018 by thesmallc

I have a complicated relationship with hope, and it all started with my cancer diagnosis. Now, when I say “hope” I don’t mean it in the positive-thinking-cliché type of way, but in the sense of having a purpose or having the will that I need to take the leaps in life that I still want to take.

I like to believe that I learn quickly. When I get hurt, I am super cautious the next time I am faced with a similar situation, even if I have no control over my outcome. I am so cautious that I prevent myself from fully investing myself emotionally so as not to get hurt again. Is it a human flaw to be too cautious, or is caution — or maybe a withholding of hope — just a defense mechanism we develop as we go through life? Maybe it’s both. This same caution has prevented me from taking risks that could help me live better.

I am not going to dismiss the fears we cancer patients feel. For me, I don’t believe the fear will ever go away. It’s unrealistic to expect that. Our lives have been drastically altered without warning. We went into this cancer mess with no preparation. We make adjustments and major sacrifices as we go. We have too much awareness now — many of us. In my case, this level of awareness has made me a slave to my own fears. And after all these years, I am still petrified!

As 2018 starts, I remind myself that I am still here and that I should allow myself to have some hope while gently trying to reconcile my current self with parts of who I used to be. I became too cautious after my cancer diagnosis – I’ve been afraid of getting too attached to anything. I think I’ve even been afraid of my old self! The music I used to listen to prior to my diagnosis I stopped listening to, for example. Those old pleasures are no longer a comfort zone for me.

Recently, I pictured my entire life as a pizza pie. Each slice represented a part of my life. I asked myself, how many slices of this pie have I given over to cancer? How much of that pie am I dedicating to fear?  I realized that not only are my slices limited, but I’m not enjoying or making the most of the good slices that remain post my cancer diagnosis. A big part of that is because today I focus more on my fears and less on hope. But I can’t be hard on myself for being afraid. There were multiple biopsies and scares since my last treatment. How stubborn can a person be to continuously believe all is fine after all the hurting?  At the same time, I realize this is not healthy for my state of mind, always being hyperalert, hyperaware. Constantly being in a defensive state expecting something bad to happen. On the other hand, in some ways, being like this has also created some sort of safety net for me; an approaching to living, but not an enjoyable one.

I’ve come to a time when I wish to examine my life again and make choices based more on hope than fear.  This is a risky choice for me. I want to at least give it a try.

I want to clarify that when referring to “hope” I am not saying that I could completely forget what happened to me and all the pain I endured — not just after cancer but also before, as we all have. I want to create more meaning not related to cancer. cancer will always have a slice of my pie, but I would love to enjoy the other slices and taste some new ones. Then, even if the cancer comes back, at least I will have allowed myself to dance to my favorite songs again.

So as Nelson Mandela said…

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“Anthem” by Leonard Cohen

“Ring the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.
That’s how the light gets in.”

Posted in Awareness, c World, Coping after cancer, Mental games, Reflections, Self Awareness | Tagged | 18 Comments

Where I am now

Posted on November 12, 2017 by thesmallc

I’ve been quiet on my blog lately. It doesn’t mean I am not writing or thinking about our cancer mess. It certainly doesn’t mean that I am feeling so great that I don’t need to blog anymore. Nor have I decided to look the other way. I don’t think that will ever happen. One thing I can say is that I have become tired and disappointed. There’s a lot on my mind and a lot of it isn’t pleasant. It’s partially out of fear and frustration, but also out of anger.

I am feeling very angry about so many things. Injustice. Ignorant people. The fact that I will never be done with cancer. Feeling pressured — by time, people, expectations (including my own). Feeling out of control. And so many other realities about being a cancer patient.

It’s as if I have reached a point where I have decided to switch pills and momentarily take this one instead:

Recently I’ve been re-reading my blog. I have no regrets about the things I’ve shared here. It has helped me, mentally, to express myself, and I hope that you too have found some comfort in knowing you are not alone in your suffering and pain.

What is my goal, really, when I write about breast cancer and our culture? I’ve already said it’s therapeutic for me to express myself, and I do appreciate sharing a connection with other patients. But my other goal has been to try to educate and influence people — to help them by trying to create change so their future cancer experience is better than mine. But despite all my efforts — and immersing myself in the pain of dealing with these topics in writing — I don’t feel that people are paying attention enough. When I see them look the other way, I get discouraged to continue.  (Receiving support from doctors and through treatments is very important, and I’ve gotten that, but I find survivorship carries a different set of challenges and it’s important to receive support during this stage too.)

This has been especially disillusioning and hurtful when some of the people looking the other way are those who are supposed to be close to me.

For instance, I’ve been thinking about all the requests I’ve shared on social media and on this blog asking friends and family to contribute to research — and most people have ignored my requests. My most recent request was related to the “#KissThis4MBC” campaign, where Novartis is donating $10 to metastatic breast cancer research for everyone who shares a photo of themselves with the hashtag #KissThis4MBC. We all know how much people like to post pictures of themselves on their social media pages, so I thought this would be a hit. Easy to do. All I asked friends and family to do was to include the hashtag, and yet, less than 10 people did it out of hundreds  — and this was mostly only after I started tagging people and asking why they hadn’t done it. (I know, I know, some could have missed my post. Yet when I post a new picture of myself or a cute video, tons of people responds with a “Iike.”)

My post didn’t even get acknowledged by most people, not even when I asked twice. So as I was staring at my screen, getting ready to post my own photo, I decided not to bother (at that moment).

I’ve been thinking about who I am really helping by advocating for change and more education. The truth is all patients who advocate are mostly helping those who have NOT been diagnosed with the illness yet. We’ve been through the shitty experience already. The damage has already been done in our bodies and in our minds after cancer. A lot of the progress will help those who will be diagnosed in the future. So, that’s reason for me to not stop advocating. I would like to contribute to change in any way that I can. I know that my experience was easier than it would have been, let’s say, 20 years ago, thanks to those who advocated for me before my diagnosis.

Yet, it feels so disappointing not to get the engagement you want from those closer to you. I’ve already accepted the fact that most people don’t want to deal with cancer unless they absolutely have to, but I expect more from those who know me.

People talk about how they don’t know what to do to help cancer patients. They say that they often feel helpless. But then, when a simple opportunity presents itself, they still don’t do it. (For those who did share their photos, thank you!) I get that people have a life to live (so do I), but my request only took a minute to acknowledge. And it’s for me, your friend/loved one? Regardless of what your beliefs are — such as “they’re hiding the cure” or “this is a bullshit PR campaign” (it isn’t!) — do it, because this is our hope and the act of participating will mean something for everyone, including you.

Why won’t they do it? What is the reasoning? I really want to understand so I can accept it and move on. Are people so petrified of the word “cancer” that, even when they read it, they immediately look the other way without realizing they could be contributing to making things better for someone? I can’t help but to take it personal. It makes me feel like they don’t care if I die from this disease.

I’ve been thinking about this worst-case-scenario. I imagined people writing on my social media channels, saying things like “you will be missed” or some other shit. And it made me even angrier. I thought “shut the fuck up” (something I would say from my grave, if it were possible); “you should have shared that photo on your profile like I asked you to. There would have been zero inconvenience for you, because you’re constantly on social media anyway, posting photos of every move you make”. All you had to do was add the hashtag, #KissThis4MBC. That’s how you show you care, not by writing on my wall when it’s too late, or sharing a pink ribbon – that won’t do a thing!

For a while now, I’ve been feeling like I am locked in a room with a group of people going through the same frustrations as I am, screaming for acknowledgement, and no one hears us — until they have to  enter the same room themselves, where they too won’t be heard. And this is why we are where we are today when it comes to cancer research. Makes me also question for the millionth time all this “awareness” that Pinktober is supposed to bring.

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1) Whether you’ve been diagnosed or not: Have you ignored a cancer-related social media message or article message shared by a loved one who has the disease? If so, why? (No judgments here)

2) For those who have been diagnosed: Have you taken the “FUKITOL” pill too? (possible diagnostic reasons: sick of a job or a relationship)?

3) If you are a blogger or any other type of advocate, do you often feel unheard? If so, how do you cope?

Posted in Awareness, c World, Coping after cancer, Family, Support | Tagged , , , | 25 Comments

Time machine: where to go from here?

Posted on September 22, 2017 by thesmallc

As part of my work, I handle the marketing for scientific conferences, and one of my duties is to help produce their program books. This gives me access to research papers. A few mornings ago, I was proofreading the abstracts that had been submitted for a translational medicine conference. There is a lot under development right now and it’s all great – targeted immunotherapy for different types of cancers, technologies for gene modification, and new research for advanced ovarian cancer, to mention just a few. I am not sure how soon these developments will come into play or if they’ll just stay in a lab or in a research paper. Hopefully there will be more funding to support this research.

While reviewing the content for the program, I couldn’t help wondering if I will be here to see a big breakthrough. It also made me question whether or not I would have liked to be born during a different time. I found myself revisiting the 1980s, the time I grew up.

As many of you already know, I was raised by my grandparents in the Dominican Republic (D.R.). I know that I sometimes beat up on the culture there, on this blog, especially in relation to religious views and beliefs about illnesses, but there’s a lot of beauty and innocence there, too. (Even if it comes with some disappointing ignorance.)

While revisiting the 80s in my head, I remembered how my family didn’t have much. We lived in a small town, in a house with very few furnishings, including an old black and white TV that only showed a couple of channels – when the static allowed. We often kept our house doors open to feel the refreshing tropical breeze travel through our home and to smell the different fragrances coming from all the exotic fruit trees – mangos, papayas, oranges, and many more in our yard. I didn’t have many toys but there was enough nature around me to keep me occupied and happy – climbing trees, getting myself dirty with other kids, going to beaches frequently, drawing with chalk on the streets…just being kids. (My grandma was always sewing my torn socks and clothes back together. That’s how much fun I had, playing.) I cherish the memory of those days, and appreciate now the few material things I had.

I also remembered the only hospital we had in town. I recall having a couple medical emergencies as a child – one when I broke my chin and needed stitches (long story) and the other time was when something gross was growing on my skin that my grandma couldn’t cure on her own (she could cure most things). I recall being traumatized by both experiences. The hospital did not have enough resources and I felt pain both times. I think this is one of the reasons I fear medical procedures today. There were many urgent cases at this hospital and not every patient survived.

These memories also made me reflect on where we are today with the advances in medicine. Have we come far? I think in some areas we have. But in relation to cancer, I am not too sure. People are living longer, but there seem to be more cases everyday now, and many still die from the disease. And the treatments continue to have harsh effects on patients. Still, I am grateful to be dealing with cancer today, rather than, let’s say, 20 years ago. Will things improve even more in the next 10–20 years? I would hope so. But to get there, we need more education, more funding for research and a shift in our culture – for example, positive thinking doesn’t cure cancer. Science could, though.

And, going back again, I’ve been thinking about my family in D.R., and how things might have turned out for them if they were living today, in a different time (and place). I imagine my grandma as a cancer survivor. She didn’t even get the right diagnosis from her doctor back in D.R. in 1997. He operated on her without even doing a scan. That made her ovarian cancer, which was already stage 4, a lot worse. Both the system – with the lack of resources — and the doctor killed my grandma. I imagine a time where my great-grandma would have survived her breast cancer (at the age of 49), and having a doctor who would have emphasized the urgency of her health situation. I imagine a time where my great-aunt would have lived longer than 59 years. I imagine a place where my cousin would have been more educated about cancer and would have checked her lump as soon as she felt it, and survive longer than 46 years. Perhaps.

And then, I imagine myself in the future, or a different time and place, where I would have a greater sense of freedom and a chance to take more risks (such as building a family) without the fear of recurrence or dying from the disease I deal with. Is it possible I will be here for that future time?

Of course, I am just daydreaming about this wish to time travel. Would it really be better in the future? I would never know what things I would be missing or giving up if it really were possible to choose to live in a different time. And knowing the life I lived as a happy child back during the 80s, and the life we are faced with today, I think I would prefer to live now.

I guess my challenge today is figuring out how to do that. Live. Now.

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Share a memory from your childhood.

Do you wish to travel to a different era? If so, where to?

 

Posted in Awareness, c World, Coping after cancer, Family, Loss, Reflections, Resources | Tagged , , , | 10 Comments

And This is My Truth – A Summer Blogging Challenge

Posted on August 19, 2017 by thesmallc

My friend and fellow blogger, Nancy Stordahl, is encouraging us to do a summer challenge which includes answering 10 questions related to our breast cancer experience. I love challenges! I also don’t mind sharing my truth, which is one of the reasons I blog about my cancer mess. I just wish our truths made it to the media so our society would be better educated about the reality of this disease – wishful thinking.

So without further ado, here are the questions Nancy wants us to answer.

 1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

Prior to my diagnosis, I experienced a series of strange situations that led me to suspect something was def. wrong, but I could not identify the problem. It’s not like I felt sick or anything. I didn’t experience any symptoms of any kind. Plus my blood work had been excellent according to my doctor. Eventually, I found a lump in my right breast and had it checked right away. Then, I was diagnosed with invasive ductal carcinoma (IDC), stage 2a, grade 3, at the age of 32. I opted to have a lumpectomy with chemo and radiation. I’ve never been so scared in my entire life. I thought I was going to die…from the chemo.

I have a strong family history of cancers so I always suspected I would eventually get cancer. I am the first person in my family who has been diagnosed with cancer before the age of 40. YAY me! (Don’t be jealous!) I never thought it would be breast cancer though. I thought it would be ovarian cancer, like my sweet grandma who passed away from that awful disease. (Later on I found out my grandmother and I had very similar pathology reports, only her cancer was in her ovaries and mine was in the breast.) I had tested negative for the BRCA genes but I was not convinced there wasn’t another gene involved. So I proceeded with genome sequencing testing which proved I was a carrier of the ATM gene — a gene with risks of pancreatic, breast and leukemia cancers (one of my aunts was diagnosed with leukemia at the age of 46 but most cases in my family have been breast cancers).

2. What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

I have to admit the list is long, but I would share two statements as they are both equally disturbing to me.

A guy I grew up with in the D.R. suggested that there is something wrong with my family. At first I was impressed, because I thought his comment suggested there was something genetically wrong, which would have been accurate. His comment gave me some hope that maybe the level of ignorance some people have in the Dominican Republic had subsided. But then he proceeded with saying that after my aunt’s leukemia diagnosis, I should really bring this case to church and get as many Christians involved as possible to request that our family be forgiven by God. He suggested my family had done some serious sinning and we were all being punished for it. Of course I put him in his place. And of course he doesn’t talk to me anymore (another great example of someone who made my cancer all about himself). Oh well. See ya!

Then, recently, a family member gave me a speech on how I need to learn how to forgive in order to be “cured” of this breast cancer.

W.T.F.

3. What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

There are two that equally annoy me. “Think positive” is one. I really don’t appreciate having my feelings dismissed. It’s just not very nice or kind. I understand my reality is uncomfortable to others, but if your intention is to help me, all you need to do is listen and acknowledge my real situation. Don’t look the other way.

The other one is “everything happens for a reason.”  It suggests that I got cancer so that I could learn some sort of “lesson” that I needed to be taught. The statement itself sounds very condescending. I picture someone wagging their finger at me. Someone like dr. Creagan at Mayo clinic.

4. What is something you want others to know specifically about breast cancer?

There is so much I want people to know about breast cancer that it will require a series of posts. My entire blog is a start. But if I need to mention just one, it would be that stage 4 needs more research. We need a cure PRONTO! Breast cancer kills over 40,000 men and women each year. No one is cured. No matter how positive and how religious a person may be, no offense to anyone, they will always be at risk of dying from the disease. I am not sure everyone believes this.  And by the way, here are two posts I wrote a while ago about Pink-Washing and why I don’t celebrate “pinktober”.

5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

I do. More often than I want to maybe because I am young with no children to keep myself occupied. Hey, I do work and try to have a life…you know what I mean. Seeing so many of my friends die from this disease is a constant reminder that it can happen to me.  My main concern today is my mental health.

6. Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

Was it supposed to? I was not aware of that. I don’t consider this experience as a way for others to judge me as a person and I certainly don’t consider other people’s expectations but my own when it comes to cancer. I try to be very kind to myself.

I thought I was wonderful before my cancer diagnosis. However, today I feel like I’ve lost a sense of identity. I am not sure who I am or who I want to be. I do believe cancer is now part of my identity and a lot of the decisions I make need to involve cancer too.

7. What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

There are quite a few books I’ve enjoyed reading and some are unrelated to cancer – “Man’s Search for Meaning,” by Viktor Frankl – a book about survivorship and hope. “Cancer Was Not a Gift & It Didn’t Make Me a Better Person” – don’t you just love that title? I do! – written by Nancy Stordahl. There was also, “Bright-Sided” by Barbara Ehrenreich. I was able to identify with both books and to some extent they brought me comfort. And I’d list one more, “Calling the Shots” by Beth Gainer. Her book focuses on the importance of being your own advocate when it comes to your health, which reminds me, I need to write a review.

8. Besides your family, where do you turn for emotional support?

I turn to blogging and writing.
I turn to my fiancé who has been a great listener, 24/7. Poor guy. Caregivers need support too.
I turn to my kitty, Nelly.
I turn to my therapist who I try to see 2x a month. She is great.
I turn to my friends (and fiancé) who listen to me and allow me to complain, especially about side effects from Tamoxifuck (formally known as Tamoxifen). No, I am not ungrateful.
I turn to my fellow bloggers and online cancer community. These people have helped me in so many ways. I don’t feel alone because of them. Thank you, guys!

9. How many cancer blogs do you read and why do you read them?

I try reading as many blogs as I can. The blogs I follow are listed on the right-hand side of this page. There are also others, some unrelated to cancer, I enjoy reading. Lately, I have not been very active on my own blog or reading other blogs mainly because of personal responsibilities but also because I’ve been trying to balance life and cancer. It has been very difficult for me to expose myself to emotional pain since I lost my friend Cathy. And lately, we’ve lost quite a few friends, including some fellow bloggers I follow, to metastatic breast cancer. But I know in my heart I want to be present. It’s all about trying to find the right balance and I am in that process right now.

10. Do you call yourself an advocate? If so, what drives you?

When I started blogging, my intention was to use this platform as a therapy for myself. I find survivorship to be extremely hard, especially because I am a realist. I don’t do fantasy-land. I always feel like I don’t do enough to consider myself an advocate. However, if my messages are reaching patients and this is helping them cope, that, to me, is a gift in its own way, but also so rewarding. And if my messages go as far as touching people who have never gone through cancer, that’s even more amazing to me because these are the people I want to expose my reality to.  Although I had a different goal at the beginning of my blogging experience, I now feel I have a responsibility and a need to speak out for all patients, including myself.

And now it’s YOUR turn to share your truths! Feel free to participate by including some of your answers in the comments section below.

Posted in Awareness, c World, Coping after cancer, Reflections, Resources, Support | Tagged , , | 10 Comments

It’s not about you

Posted on August 1, 2017 by thesmallc

I am going to write about a topic that’s just bizarre to me. It has to do with people who make your cancer all about themselves. It’s a tricky topic to talk about because, as someone advised me, I could lose support by opening my mouth or calling people out. (I’ve been getting myself into this type of trouble since catholic school.) But guys, to me, it is more important to educate than to keep the ignorance alive. Don’t you agree? And anyone who would take away their support because of what I am about to share, once again, is making it about themselves.

I know that peoples’ ultimate intentions are usually to help. But understand, when we patients react negatively to a “supportive” comment from someone who has never been diagnosed — such as “if you have to get cancer, breast cancer is the one to get” or “it’s only breasts” — we are not trying to hurt you or be dismissive of your intentions; we are trying to educate you. It would be more supportive to just listen to what we patients have to say because there is a lot you can learn about our experience. And it would help you discover ways you can be truly helpful. For instance, if a patient tells you he/she is scared of dying from the cancer, and your response is “you have to think positive! Your thoughts can turn into reality” and the patient then says there is no scientific evidence that proves that being positive cures cancer, don’t argue with the patient to try to convince him otherwise.

But, back to my point, here are some of the things I’ve been thinking about. I am not going to get too specific here. And for those close to me, if I haven’t addressed these issues with you already, you didn’t do anything wrong. Again, this is not about you. It’s about us, the patients.

First of all, there’s nothing to be envious about when it comes to cancer – trust me!

I always remember a cancer survivor who shared a story in an online group. She said that her sister seemed a little envious that she was getting so much attention because of her cancer. Her sister would say things like “it’s only breast cancer” or “it’s not like you’re handicapped” to her sick sister. And, at one point, the sister went as far as cutting her hair short and getting herself a wig. Patients notice these behaviors but say nothing. They are too tired and overwhelmed with the situation at hand, and yes, most of us let it go and forgive. But the behavior is still weird and unkind.

Another example – and this one is very important – is about people at work. When everyone finds out you’ve been diagnosed, most people want to offer help and support. But sometimes there is that one employee who comments about the number of appointments this patient has to leave work for, and says things like “isn’t she/he done with cancer yet?” Or, “I wish I had it that ‘easy’ where I could come and go whenever I please.” Come on people! Seriously? Do you think I enjoy going to multiple appointments all year, then having to come back to work and stay late to make up the hours I’ve missed – especially when I am feeling stressed out or tired or weak from having my blood drawn? Or having bad nights because I’m worried the cancer might come back? For your information: No, we patients are never done with cancer. And although some patients have fewer appointments than others, there are some who require more attention because each cancer case is different. Be kind and just do your J.O.B. I know I am kicking ass to get my work done.

Please take my word for it — there’s absolutely nothing to be envious about when it comes to cancer. Yes, the love that comes shining through because of the fear people feel of losing someone is touching and comforting. I am not sure how other patients feel about this, but personally, I never wanted this type of attention because of cancer. Of course I welcome it because it has helped me tremendously and I am so grateful, but if I had a choice, I would have rather NOT been diagnosed with cancer. The love could still come even if there were no cancer.

A patient can and will make their own decisions regarding their treatment plan. It’s their cancer.

Have you ever had a conversation with someone about your recommended treatment plan and the person quickly interrupts you to advise you? And then you try to explain that your oncologist has experience with your type of case and knows better, but the person insists that, no, you should consider other opinions and options. And then suddenly it becomes uncomfortable because you don’t know if you should walk away, spend extra energy (that you probably don’t have) educating them, or scream that YOU are the one facing the disease and should be given the opportunity to trust your medical team. It happened to me. I was judged because I didn’t get a mastectomy and instead got a lumpectomy (I wrote about it here). And after I expressed my feelings about being judged, the person did not speak to me for months. I thought her feelings were genuine but she made my cancer experience all about herself. Don’t do that! Patients need your support and one of the best ways to show it is by listening and acknowledging the patient’s real situation.

Only the people who have been diagnosed with cancer are considered “cancer survivors”

Recently, a patient’s family member called herself a cancer survivor in a social media discussion. My patient friend was shocked because she did not know her family member had ever been diagnosed. She was worried because she thought her relative had kept her cancer diagnosis a secret – even if it is a patient’s right to keep his/her privacy. My friend immediately reached out to her relative and requested an explanation. Her relative explained that she had been too close to painful cancer experiences in her family not to feel as if she herself hadn’t lived through it — that she “survived cancer.”

I know that seeing a loved one deal with cancer and its treatments can be life-changing and painful to experience. But, it’s not appropriate for relatives or friends to call themselves cancer survivors unless they’ve been diagnosed and gone through treatment. I am not dismissing the hard work and trauma suffered by those who love and care for a cancer patient. But if you’ve been caring for a cancer patient, you are a CAREGIVER. Caregivers don’t get enough credit for their difficult task. Caregivers have the choice to walk away from the cancer mess we patients are in, but choose to stay anyway, out of love and commitment. We patients have no choice but to stick it out.

A “cancer survivor” – although I dislike using this term to describe myself – is someone who has been diagnosed with the disease, was treated, and luckily lived. The label “cancer survivor” can’t be tossed around. Unless you’ve lived through the diagnosis and disease, you don’t fully understand the complexity of the situation. The patient carries the physical and emotional scars for the rest of their lives. It is a serious thing and the label should never be miss-represented or casually applied.

I’ve said it before and I’ll say it again: If anyone, I repeat, ANYONE, wants my cancer, they can have it. But of course they don’t want all the suffering that comes with it. They seek something else. Maybe to empathize? Maybe other people’s sympathy? And that’s the part that’s troubling to me.

My intention in expressing all this is not to hurt people’s feelings. In fact, that is never the case, but I understand I can’t control how others perceive my message. I get that people’s intentions are often genuine and sincere. My hope is that if these people I refer to read this article, if they ever do, they would not make it about themselves, but instead, think about why it isn’t appropriate or supportive, and in some cases it’s even dangerous, to make other people’s cancers about themselves.

Posted in Awareness, c World, Coping after cancer, Reflections, Self Awareness, Support | Tagged , , , | 24 Comments