Where I am now

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 give a fuck 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.

————————

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 , , , | 18 Comments

Time machine: where to go from here?

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.

—————————————————-

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 , , , | 8 Comments

And This is My Truth – A Summer Blogging Challenge

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 cancerMan’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

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 , , , | 23 Comments

A message from the real world

It happened again. I should have known better than to expose myself to online messages that can only lead to disappointment and distress. Tip – when you decide to take a mental break, I advise that you take a break from the internet, too.

I follow the top hospitals on social media – MD Anderson, Mayo Clinic, MSK, among others. I like to know what’s going on when it comes to science and research, especially in relationship to breast cancer. As I was checking my Facebook page recently, a post from Mayo Clinic popped up. Reading the first sentence of this post felt like nails on chalkboard. The statement came from someone at Mayo. Based on the quote, at first I thought maybe he was a motivational speaker. But to my surprise I found out he was an oncologist.


So, now we know: Attitude CREATES reality.

Stop wagging your finger at me, Dr. Creagan!

I know hospitals like to put out “inspirational messages” for their patients in order to encourage them, but I found those first three words so simplistic and perhaps even damaging that I could not get past them. I wonder, how is a stage 4 or terminal patient supposed to react when being told that changing their “attitude” will change their “reality”?

Language matters, and medical professionals should be careful not to use words that sound misleading. Dr. Creagan’s statement is inaccurate and scientifically untrue. Attitude does NOT create reality. And if he really believes that, why did he choose to go into oncology? Please help me out here. Am I over-reacting? Perhaps my level of tolerance for the “positive thinking” approach has reached its lowest level. I am tired of these types of messages that only make patients feel more isolated. Patients don’t need that kind of pressure. What patients need is for their medical team to be truthful and supportive in addition to also saving their lives. Patients also need to be heard.

A cancer diagnosis is a devastation, and patients should be allowed to see it that way. It isn’t always an opportunity for self-improvement or whatever else Dr. Creagan thinks the cancer experience should inspire.

People look to respected medical organizations such as Mayo Clinic for sound, reality-based information. “Attitude creates reality” sounds like something from fantasyland. So, what I would say to Mayo is, you can either choose to contribute to the level of ignorance our society lives in or you can educate with facts, the choice is up to you. Just please don’t mislead people.

Posted in Awareness, c World | Tagged , , | 30 Comments

Gratitude and Outrage

Susan Rahn blogs at stickit2stage4.com and she was kind enough to let me share this powerful message. I am grateful for her advocacy.

I’ve been dealing with all kinds of issues and emotions the last few months, which is one of the reasons I haven’t been very active on my blog. There has been too much occupying my attention — thinking about the many losses we’ve had due to metastatic breast cancer, examining my personal situations, and realizing that I still feel stuck in many ways. I’ll elaborate more on that in a separate post. This time I want to share something I can’t seem to let rest.

During my recent frustrations and anxiety, I came across an article, “My Message to the Mets Community.” It is written by a metastatic breast cancer (MBC) patient who feels marginalized by what she calls the “dark side” of the METS community. She feels rejected because her survival strategy is to ground herself in a place of positivity and gratitude, as oppose to what she calls “the hate filled language and attention seeking stunts” that she sees coming from the most aggressive METS activists. Her message underscores the divisions in cancerland.  Here’s the part I haven’t been able to stop thinking about:

There are ways to advocate that don’t involve hate filled language and attention seeking stunts. If I am banished from the mets community for my beliefs – perhaps the mets community isn’t comprised of ‘my people’ after all. The reality is I refuse to use my cancer as a platform to propel my own agenda or anoint myself as an inspiration while surrounding myself with an entourage of “yes” people. I guess there are bullies everywhere, and let’s face it, cancer doesn’t discriminate.

After reading the message many times I thought maybe I should leave this one alone. After all, it represents a different perspective and the author is struggling with MBC. (I’m not in that position.) Do I dare involve myself in a metastatic community discussion? Perhaps the way the writer chooses to express herself is just none of my business.

But, you know what? It is my business, because metastatic breast cancer is what has me and my loved ones feeling anxious since I stopped treatments. It’s what killed my friend last year and some of my family members … plus over 40,000 people yearly (in the U.S. alone).

So, I find myself writing a critical response to an article written by a stage 4 patient. I think she is missing some important points.

The writer of the article feels marginalized personally by the fighting mentality of the aggressive advocates, and feels that she has no place in the mets community because she chooses not to express rage.

I agree that many patients do feel alone in a community where many of the responses among patients are not compatible. And to be realistic, there will always be differences in our approaches and attitudes to survivorship and being forced to live in this world. I’ve come to accept that to some extent there will always be divisions, even when we all have a common goal. But, one approach may take us longer to reach that ultimate goal — that is, no more suffering for any one — than the other. And that is what I want to emphasize here.

To the writer of this article: I am sorry you are dealing with MBC and that you have lost so many loved ones due to cancer. I am sorry you feel alone and in fear of being yourself in a community where you thought you would meet others with the same attitude as yours. On the other hand, I don’t believe the intentions of these patients you call bullies are to exclude patients like you from the metastatic community. I don’t believe their anger and frustrations are directed at you, but instead at our current system and culture. These advocates feel a deep need to aggressively confront the threat of cancer and the lack of real progress. They are outraged and rightly so. They are also passionate people who are seeking solutions and answers. They feel helpless and the only thing left to do is get loud, because they feel unheard. The types of changes we’re looking for don’t come from just being quiet or thinking/acting positive. I’m not saying the quiet and reserved approach is wrong as a way to make survivorship and quality-of-life better. Each patient handles their situation their own way. And these patients — the ones perceived as angry people — also try very hard to live their lives, and they are surely grateful in their own way for what they do still have. Behind those “angry” faces and loud voices there are patients who are petrified and eager to live. I believe they’ve run out of patience. Their personalities are not the type that allows them to sit and watch, like most of us probably do. And for that, we should all feel grateful. These people are passionate about saving not only their lives, but ours too — and this is the part that frequently goes un-noticed. These people who want to have a fistfight with the status quo are fighting for every one of us. And thank goodness these passionate people exist! We are dealing with an URGENT matter. Please let’s allow them to help us. They might not sound polite enough for your taste, but at the end of the day, all they want is for us all not to live in fear anymore and for us to live longer lives. And I don’t think their intention is to marginalize or cast aside the people in the mets community who want to take a kinder, gentler approach to survivorship. Instead, they want to cast aside an approach or point of view that doesn’t help empower their own sense of what it will take to solve the problems.

So, I guess one way to look at it is that the approach to survivorship that the writer wants to live by — with gratitude and grace — can be viewed as a complete different situation than the one the loud people are engaged in — trying to effect society. There’s a place for both gratitude and outrage in all of us. What these patients are fighting so loudly for is much bigger than the survivorship part of the situation.

Posted in Awareness, c World, Support | Tagged , , , | 15 Comments

Mammograms: Always on trial

You’d think I’d be used to it by now. That I wouldn’t feel a need to write about it after all this time. But this isn’t the case. And I am not too sure it’s any other survivor’s case either.

Once you’ve been diagnosed with breast cancer, getting mammograms become an anxiety-inducing event. It doesn’t matter how many “clear” results you’ve received post-diagnosis. You start to worry days before your scheduled appointment. For me, it’s more than just the fear of experiencing a cancer recurrence.

Approaching every mammogram at my hospital feels like preparing for “Judgment Day.” First, I schedule my mammograms for a time when I think they won’t interfere with me psychologically. Some patients want to postpone this test until after they’ve had their vacation or celebrations. Me? I want to get a “clear” prior to even trying to enjoy myself, otherwise, I spend my whole holiday stressing about it.

At least I have some control over the timing. But once I show up to my appt, I no longer can control anything. It’s the way this procedure is conducted at my hospital that distresses me.

You get to the reception desk and provide them with your name and date of birth. You’re then asked to sit in the waiting room with other women who are also waiting to be examined. First, I need to get undressed from the waist up and wear a hospital gown. I follow the instructions. I sit with the other patients who look just as nervous as I do but are trying very hard to make the situation feel casual. No one initiates a conversation. We all act as if we were at a regular clinic waiting to be called for our yearly check-up. Some of us grab magazines to read while others just stare into space. From time to time, I take a peek to see if anyone else is as young as I am. And almost every time everyone is much older than I. A thought runs through my head: “couldn’t I have enjoyed my youth before having to deal with this shit?”

There are several mammogram technicians who frequently come out to call on different patients. Once I hear my name being called, my heart beat accelerates, as I am aware of what they’ll be looking for and what I don’t want them to find.

I go into the mammogram room with the technician and get asked questions about symptoms and family cancer history. All over again. I’m then asked to remove the gown to start the “pancake” procedure. My breasts get flatten by the compressor plate which allows for accurate imagery. Several pictures are taken. I start to wonder if all this radiation is activating the bad cells, which can happen due to my ATM gene. It is a very uncomfortable test. But to me this isn’t the worst part. The worst part is the wait and how each group of women is kept in a waiting room, then moved to another room, and then moved to another room, depending on what the doctors see. It feels as if we’re waiting for a verdict, except there is no one to defend us. And if we are lucky, we get to go free that same day.

After I am done with the mammogram, I’m asked to go to a room where all the patients anxiously wait to hear their verdict. This is the time when I exceed the number of texts on my phone plan and sit restlessly. Often, a TV is on, broadcasting bad news about the world, making the aggravating atmosphere even worse.

I eventually hear nurses call each patient to inform them about their results. After the interaction between the nurse and the patient, you either see the patient leave or go into yet another room for a different type of scan. This usually means they’ve found “something” suspicious and they need to further investigate. And this is the worst part for me. Seeing how the patient, very slowly and with a look of concern, follows the nurse to the other room. Despite their fears, they proceed anyway. It is devastating to just watch. I also can’t help but think I might be next. After all, although we’ve been through our treatments, we’re never really done. We are not cured.

Finally I hear my name called. I follow the nurse who conveniently stands between the exit door and the sonogram rooms – where patients need to go after something suspicious is found. I get clear results (at least, I have so far). I am handed the paper stating those results and my recommended next appointment date. I take a deep breath and thank the nurse for delivering the good news. I immediately head into the bathroom. I stare at myself in the mirror for some time, still in disbelief of why I am there in the first place. I think about the other patients. I always do. Especially, I think about those who have passed from my family. From my support circle. I cry and I feel both grateful and guilty for getting another “free pass”. I get dressed and go back into the world where I am expected to act as if I am completely done and shouldn’t worry anymore. But I still worry. And despite my fears, I continue to live my life anyway. Until the next verdict.

Posted in c World, Follow-ups, Mental games | Tagged , , , , | 15 Comments

The Tamoxifen Show: Today’s episode: A dramatic uterus

Recently, I shared my experience of jumping through hoops to get my pharmacy to order me the Teva brand of Tamoxifen – the brand I’ve been tolerating well so far (click here to read the story). As I’ve discussed, fortunately, I haven’t yet experienced what I consider to be the worst side effect of this medication – one that I’ve been thinking of as a “dramatic uterus.”

A “dramatic uterus” is what I call a uterus that is not behaving normal – for instance, heavy bleeding or not bleeding at all while being pre-menopausal, polyps, thickening of the endometrial lining, or in worst cases, endometrial cancer. I am definitely not ready to begin facing such drama, because I am still deeply attached to the hope of one day having a child.

However, lately I’ve been experiencing some changes with my menstrual cycle. My doctors seem to think it’s all related to stress. But we also know that Tamoxifen can contribute to these changes. And as I get older, I know that other age-related issues can come up.

Over the past few months, my periods seemed to be fading away — until a few weeks ago, when I experienced very heavy bleeding (but still within the “normal” 21 day-cycle range). Still, I panicked, as usual, and contacted my GYN who suggested I come in for a sonogram the following day. We decided to check my hormone levels so my doctor could look at the entire picture and make a recommendation.

Now, if you’ve read enough of my posts, you would probably guess what I did next. I reached out to Dr. Google and to other patients who have experienced similar situations. And basically, it is what it is. These cancer treatments cause a lot of collateral damage and we either deal with them or make a decision to stop them. Both are very hard decisions to make and hard courses to follow.

After all my examinations and tests, my doctor concluded that I’d just had an unusually heavy but otherwise normal period (for the first time in a while). She said that my uterus doesn’t need any procedure done at this time – such as a D&C or a biopsy – because there was nothing really suspicious (thank goodness!). She reminded me that I am still young and my ovaries are still functioning. “If you have sex right NOW, you can get pregnant!” she stated bluntly. Apparently all that bleeding could have been related to the fact that my body is still trying very hard to adjust to the Tamoxifen AND to act normal, even after all these years of treatment.

My GYN suggested I do another sonogram in three months. She also talked about my level of stress during the last year, as she has noted some changes in me, including loss of weight. She is aware I am under too much stress at work and recommends that her patients be open with their employers about their health risks, and the potential that excess stress symptoms can interfere with patients’ treatment and progress. Work is always a complicated situation when it comes to managing health issues, and I agree that patients need to speak up for their own well being. And hopefully their employer will be supportive.

I am meeting with my Oncologist next month to have a discussion about my overall health plan. She has also expressed some concerns about my level of stress.

As many of you already know, I have no children. I still would like to have a child, if my circumstances allow. The thought of cancer taking that option away from me makes me feel emotionally devastated (yes, I am aware of options such as surrogacy). Having a healthy uterus represents hope for me, even if I am not trying to achieve pregnancy at this time.

It is true I have taken a long time to make the decision to get pregnant. It is a hard decision after all, especially with my health situation, but my Oncologist seems supportive and is open to this idea. However, some people judge, and feel I’ve taken “time” for granted. Apparently it is my fault that I have not taken the risk to have kids, as someone insinuated recently – such kindness. (Not that stopping Tamoxifen and getting pregnant will automatically cause a recurrence, but it’s still a risk.) I wish people would just stop blaming patients for their circumstances, shut their mouths, and mind their own business — especially when patients are trying to stay alive as long as possible while dealing with survivorship challenges. Unless these people want to offer to carry my child or offer some other rational solution — then we can talk business.

So, going back to this latest episode with my dramatic uterus, maybe my uterus really isn’t acting too dramatic at the moment, after all. I hope it stays that way for a while though. Dealing with one cancer is bad enough.

Posted in Awareness, c World, Tamoxifen | Tagged , | 15 Comments