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 , , , | 19 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 , , | 29 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

A Story for Mother’s Day

Mother’s Day is approaching, and as usual I’m thinking of my grandma/mama, who raised me — wishing she was here. As some of you know, I’ve been writing memoirs about my childhood, and my grandma is always an important part of them. This Mother’s Day, I’ve decided to take a risk and share one of the short stories, which I titled “You Won’t Forget, Right?” It captures the relationship my mama and I had, which I’ll always cherish. This story is based on true events and it represents one of the many ways she showed her love for me.

————-

You Won’t Forget, Right?

I watch my friend Nelly’s little granddaughter, Rebeca. She is lying on the floor next to the radio, listening through the static. It is 2 PM and time for the daily announcements. When Chopin’s “Funeral March” plays, the host announces the deceased, and Rebeca writes down the names. She calls to her grandmother.

“Mama, did you know Josefina Gutiérrez de Cáceres?”

“Why? Did she die?” Nelly responds.

“Yes she did! They said she lived in Los Batelles,Rebeca says, coming to the kitchen.

Nelly pauses. “Hmmm. I don’t think I know anyone with that name.” She calls to her husband.

“Sigfredo, do we know a Josefina Gutiérrez?”

“No.” Sigfredo says abruptly, never removing his eyes from the baseball game on the  TV.

Rebeca looks disappointed. Then, seconds later, Nelly remembers.

Oh, you mean Cheeks!! The lady with the face. I remember her. That woman had enormous cheeks. She always looked like she was saving food for cyclone season.”

Rebeca laughs then says, “So are you going to the funeral?”

Nelly turns to me and says, “Alba, you knew Cheeks, didn’t you? Do you want to go to the funeral with me?”

Rebeca speaks before I have a chance to respond. “Please go, Alba,” she says. “And mama, you won’t forget, right?”

Nelly looks at me. “Alba?”

“I guess I can come with you,” I say to Nelly.

“Does this mean you’re going, mama?! The funeral is at the Funeraria el Angel,” Rebeca reads from her piece of paper. “And mama, you won’t forget, right?” Rebeca turns to me, and says, “Alba, you won’t let her forget.

The funeral is the next morning, and I return to the house to pick up Nelly. Rebeca and Sigfredo are helping her into her girdle.

Bonito Sigfredo!! You’re holding it the wrong way, use both hands! And you, Rebeca, hold the zipper together and try not to let go. Now push!” Nelly says.

I join them, and we finally fit Nelly into her girdle and purple funeral dress.

Rebeca brings Nelly her handbag. “Here mama. You look nice. And, you won’t forget, right?”

“It all depends on how crowded the room is,” Nelly says. Rebeca watches us as we walk out the door.

It is a nice summer day. Except for cyclone season, it’s always a nice summer day in the Dominican Republic.

“Nelly, are you sure you want to go to this funeral?” I say. “You were not close to Josefina.”

“Yes, I already promised Rebeca,” she says.

We arrive at the funeraria and Nelly immediately spots a seat close to the snack table. There are small sandwiches, panca mints, Country Club soda, and coffee. And the soda crackers with the Swiss cheese and mayonnaise. Nelly is examining the table and watching the room when Josefina’s husband approaches us. I hug him.

Señor, I am sorry to hear about Cheeks,” says Nelly.

I nudge Nelly. “Her name is Josefina. Say Josefina,” I whisper.

“Fine, but most people called her ‘Cheeks’,” Nelly protests as we approach the coffin to say our prayer. Nelly looks back at her chair close to the snack table.

More people are gathering with their rosaries. Most of the chairs have now been taken. As we pray, an older man places his hand on the chair Nelly has been watching. She immediately gives up the rosary and rushes toward him.

Señor, my feet have blisters. I walked a mile to see dear Josefina. May I take that seat please?” The old man surrenders and moves along.

Nelly sits and waits for me to join her. She looks around nervously.

“Alba, is it me or are there more people here than there are snacks?” Nelly asks.

I know what she is trying to do. Nelly turns to the man next to her. “Well, I am hungry, aren’t you?” she says. She gets up and begins to select goodies from the table, wrapping some of them in napkins and placing them in her bag. “Maybe I will have a few of these.”

Later that afternoon, we return to Nelly’s house. Rebeca has been waiting on the sofa. She is wearing her holiday white dress and best shoes. She jumps up.

“How was the funeral, mama? How many people showed up?” Rebeca asks, pulling at her fingers, gazing at her grandmother.

Nelly reaches into her handbag and brings out an item wrapped in white tissue. She hands it to Rebeca.

“You didn’t forget! Do you have Josefina’s funeral card too?”

Rebeca takes these treasures to the backyard and sits under the mango tree. She carefully unwraps Nelly’s present. It is the special cracker with the cheese and mayonnaise spread.

“We usually have those only on the holidays,” Nelly tells me. We watch Rebeca enjoying her treat. She is looking at Josefina’s mass card.

“You know what, Josefina?,” she says. “I don’t think your cheeks look that big.”

This story © 2016 Rebeca Matos | All rights reserved.

Thank you, mama.

——————-

To all moms: Have a wonderful and happy Mother’s Day.

 

Posted in Family | Tagged , , , | 13 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

They said it would be the easiest part

radiation-1At first, the most annoying thing about radiation was having to be at my hospital everyday for 21 consecutive days. The burns caused by the radiation were not pleasant, but skin heals. I have to say though that, emotionally, radiation was worse for me than chemo.

I did not cry during my chemo infusions, but I did during radiation treatments. I am not sure if it was related to the fact that I was coming closer to the end of my treatments, and I was just then realizing what I had gone through the previous six months. During the beginning of my cancer mess, I was in a I-have-to-take-care-of-business mode. So there was hardly any time for me to really absorb what was happening to me. Everything moved so quickly and slowly at the same time.

Because I was told that radiation would be the “easiest” part of my treatments, I did not ask anyone I knew to come with me. Each daily appointment was no longer than 30-45 minutes anyway, including the wait. I thought I could handle it juuust fine.

I had already gotten my “simulation” done days before starting my radiation treatments. The radiation team had precisely identified the area on my body that would be radiated. My body was positioned carefully, face down. And I had to remain still. The radiologist put marks — permanent tattoos (dots) — on the breast and surrounding areas to target the treatments. These steps weren’t too bad.

Finally, my scheduled first morning of radiation had arrived. The patients in the waiting room were called quickly, one after the other. Each treatment went fast, adding a level of intensity and urgency to the situation. Eventually, it was my turn. I was asked to get undressed from my waist up and given a robe. They explained the potential side effects from getting radiation, including a secondary cancer. I had to sign the consent forms that stated the hospital was not to be held responsible. (I would find out two years later that my mutated gene, ATM, can be activated by certain amounts of radiation exposure. But my hospital said they would have treated me with radiation regardless.)

Then, I was brought into a room to take photos of my breasts. They also took a picture of my face. I don’t know why they did that. Maybe for identification. In the photo I looked like I was being charged with a crime I did not commit. I found that moment to be quite unpleasant and I wanted it to end as quickly as possible.

I entered the cold room and removed my robe. I positioned myself face down on this really hard and narrow table. I was asked not to move, and eventually was left on my own listening to this melancholy music they played. To the side of me were several brain radiation masks (once you’ve seen one of these, you’ll never forget it). Suddenly, the robotic machine started moving around me. Several people watched me from behind the glass. The invisible laser was hitting different areas of my breast and surrounding areas. I didn’t feel a thing but watching this machine move around me, from one side to the other, made me feel invaded. I also felt isolated. At that moment, I wanted to run away and never come back, but then I remembered I could never run away from cancer. I also remember trying to hold back my tears, and many times I was unsuccessful. Something about that machine shooting an invisible laser, and me not being able to move while being watched by an entire hospital staff staring coldly from behind a window that made me feel subjugated.

After each treatment, I would walk out of the room and see the radiologists performing treatments on other patients. At times it was hard to ignore their computer screens, where different parts of peoples’ bodies were exposed. There were just too many. I felt a sense of guilt, knowing that some of those people probably were worse off than I. It was a very sad scene. But it wasn’t my choice to be there.

And there was something else: on my way out of the office, I would encounter kids sometimes. There I was thinking I was too young to be dealing with cancer (32 years old), and then a child would put things into perspective for me. Of course, there’s no right age to face cancer, but it’s just wrong seeing a child go through this awful experience. They should be playing games. Not doing this.

Towards the end of my radiation treatments, I felt extremely tired, both physically and emotionally. The overwhelming stress I had dealt with for several months was finally catching up with me.

Over the course of this whole thing, each treatment — the surgery, the chemo, the Tamoxifen — has had a different effect on me psychologically, but the radiation days haunt me most. Radiation was a reinforcement of the loss of control I felt – the ‘scientist’ behind the glass, not being able to physically move while being treated, the burns on my skin, and the burns on top of the burns. I could not avoid those 21 consecutive days in order to get the best outcome possible. And everything was against my impulse.

It was over five years ago that I completed my radiation treatments. I still experience pains on the radiated area, which is also a reminder of what I went through. This is part of the collateral damage we deal with, even after surviving a traumatic event such as cancer.  Although I am done with those treatments, I still feel like it isn’t over. Survivorship is difficult, especially when dark memories haunt us.

Posted in c World, Radiation | 23 Comments

Tamoxifen Detective: How I got my Teva back

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

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

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

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

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

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

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

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

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

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

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

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