“Kiddo”

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

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

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

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

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

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

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

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

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

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

Posted in Awareness, c World, Coping after cancer, Loss, Reflections, Self Awareness | Tagged , , | 8 Comments

When I get too close

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

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

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

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

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

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

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

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

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

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

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

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

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

I’ll never forget my friends.

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Posted in Awareness, c World, Coping after cancer, Reflections, Support | Tagged , , , , , , , | 11 Comments

Pink-Washing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Posted in Awareness | Tagged , , | 11 Comments

I’m in no mood — unless you keep it real

real

Image courtesy of Cancer Curmudgeon (anotheronewiththecancer.wordpress.com)

Pinktober is approaching. And I’m in NO mood to deal with it.

I don’t know about you, but I am tired. What am I tired of you ask? Well, I am tired of…

Money spent on breast cancer “awareness.” Don’t we have enough of that already?   How about spending the money on stage 4?
People thinking BC is a sexy pink party
Companies dressed in pink ribbons, exploiting patients in order to appear like they’re good people helping the cause
Losing friends and family members to metastatic breast cancer
Seeing pink ribbons everywhere I turn, and still, no research progress
Feeling scared because I know if I ever face stage 4, my options are limited
People looking the other way
Every decision I make being more complicated and heavier than it used to be
Never being able to find peace of mind
Always feeling like I need to be more responsible than I want to be
The divisions found in cancerland
Having to explain, over and over again, that I am not cured of BC and that I am  always at risk
The lack of research
Seeing families suffer because there is nothing they can do to save their loved ones
The invisibility of patients who are struggling during all this Pinktober publicity
Idiotic cure suggestions
Being called “ungrateful” because I should be satisfied and happy that I am not dying while 113 die everyday
People blaming patients for their disease
People trying to “cure” my cancer by suggesting how I should be living my life
Being told I need to move on after cancer
Consumers not questioning where their Pinktober donations go.

As many of us already know, Pinktober doesn’t portray the reality of living with breast cancer. It also doesn’t accomplish much because a lot of the TRUE FACTS are left out. It’s up to US to educate others. And this is our chance to do so. One thing to remember though: NO SUGARCOATING. We’ve had enough of that.

Whether you’re sharing breast cancer information, or your personal story in words or pictures, it’s OK to be angry. Or funny. Or sad. Just keep it REAL.”

So to all patients, friends, family members, cancer organizations, and anyone else who cares to achieve some progress and to educate others:

Let’s all give the world a #BreastCancerRealityCheck
on October 1
.

Remember, you’re doing this for everyone, including YOU.

Posted in Awareness | Tagged , , , , | 8 Comments

Cathy

3ec3623d626ace65aa61e5bb4ba9d9a1My friend is gone. I’ve said this to myself repeatedly the past few days, and it doesn’t sink in.

I met Cathy through Terri, a mutual friend, in January 2011. Terri had suggested I reach out to Cathy because Cathy had been diagnosed with BC just a few months before me. In fact, she was still undergoing treatments when I started my nightmare. Terri felt we would be good support for each other. And she was right.

Hey Rebecca. I am doing OK. Feeling much better today. You can call me tonight or tomorrow night after 8:30 and we can talk. I have been thinking about u all week.

You better believe Cathy thought of me all week. It’s what we patients do. We know how lonely and scary this experience can be. We take it personally and hope to overcome the fear just by being there for one another.

Cathy was a dental hygienist. My doctor had recommended I get a cleaning prior to chemotherapy. I asked Cathy if she could do it for me. She said yes, but with one condition:

Just don’t throw up on me.”

She knew how nervous my stomach could get when it came to medical procedures – even the simplest kinds. She was aware I had thrown up on doctors before. But I never threw up on Cathy.

I recall how difficult it was for me to cope with my cancer diagnosis, especially at the beginning. My mind traveled to dark places – it still does. And Cathy always had comforting words to say in order to shine some light.

My mother always tells me this. No one knows what life will bring. We have to live one day to the next. We have cancer but many people who never worry about cancer will die way before us. You must keep going. Try to keep as much of a normal lifestyle as possible. Rest when you have to but don’t sulk.”

Cathy knew how to keep things level with me. She would point out when I was being irrational about my health — because, I admit, I can be sometimes — and when it was normal to have a moment of fear. She also allowed me to be me, which was one reason why I was so appreciative of her.  She understood where I came from because she could relate.

I specifically recall that time I had this pain by my liver that wouldn’t go away for months. I had the examinations done, the sonogram, and eventually the MRI. I got lucky that all was clear but I still had doubts. We hold on to the good news, but the fear never fully goes away. I told Cathy, “what if the MRI isn’t enough?”

And Cathy responded, “Lol. Spoken like a true cancer survivor, lol. I know what you mean.”

It’s so important for us patients to feel acknowledged when we express our fears, and often other patients are the only ones who can give us that response.

During treatments, Cathy and I would speak for hours on the phone. I would tell her about my side effects and she would always have some tips for me.

Be sure to chew on ice chips during your chemo infusions. It helped me prevent mouth soresand don’t overeat…remember to move! Go outside for walks…Take those constipation pills…Try doing normal daily-life activities…Rest…”

Cathy wasn’t only a friend, but in a way she was my mentor too. Someone I could lean on for almost anything. I looked up to her and respected her for all she had overcome. Cathy was also a very kind soul. And beautiful.

Eventually, both Cathy and I finished treatments, except for the hormone therapy we both had to take as a preventive measure. We were relieved to be done with chemo and radiation. But we also knew that we were not finished with cancer, although people wanted to believe we were. And boy, were we glad to have each other to tell things we couldn’t easily express to anyone else.

Survivorship became another set of challenges. The follow-up appointments made us both nervous but she was always there for me. I was there for her too.

“Good morning. You will do great. Let me know when done. Xoxo”

And also while waiting for those test results.

“Breathe. Prayers coming your way. I am sure you are fine but until you hear those words. Xoxo”

Cathy and I exchanged a lot of personal details about our lives, including our fears. Cathy loved her family so much. We laughed. We cried. We even had a plan to start our own TV show called, “The Cancer Talk”. It was supposed to be about situations patients go through that no one else wants to hear about because it’s just too heavy to deal with. It was supposed to be about the reality/facts of living with this disease. We also realized the show would have had very low ratings because our society is not interested in REAL reality shows.

Things seemed to be going well with both of our health. There were a few scares, but overall, we were doing alright. We tried living our lives as normally as we possibly could. And there were more good days than bad days.

Until one day, I received a text from Cathy that there was an “incidental finding” during a pre-op procedure. I thought that perhaps it was related to radiation scarring. Or one of those annoying scares she had previously gone through. But I was wrong. This turned out to be the beginning of a series of new problems in Cathy’s life. She did not get a break. And I was not able to help her the way she helped me.

I can’t believe that after all these years they can’t really help people w stage 4. Is there a chance for remission. Long term remission? Do I pray for that? Do I just pray for stability?”

I did not have the answers for Cathy. And no one else did either because there is not enough research funding for metastatic breast cancer.

I felt angry. Scared. Confused. Sad. I still am. I did not understand why this was happening to my friend. Yes, I am aware it happens all the time, to so many people (to 30% of breast cancer patients, at least). But I believed, in my heart, she was going to be OK. I really wanted her to be well. For her two children. Her husband. Her family. For me.

One thing that made it difficult is that I was not able to fully understand her new diagnosis. I tried. I read. I looked up information on clinical trials. I reached out to online friends who are now stage 4 to try to connect them with her. But no matter how much I wanted to help her, it always felt like I was failing her. We were no longer dealing with early stage. Metastatic breast cancer is something completely different. She needed some hope.

At times, I felt like I was overwhelming her. I decided to give her some space to allow her to breathe. But Cathy was still my friend. There was no way her new diagnosis was going to get in the way of our friendship. She would often reach out to me instead.

“Text me. Don’t be silly. Miss you. I’ve been so busy getting kids back to school schedule.”

Still, I would feel guilty whenever I would express “normal” life frustrations to Cathy. But Cathy appreciated being treated like a normal person, because she was.

“xoxo. Don’t feel bad to vent. My problems don’t outweigh yours. We have to find a way to live.”

Now, I need to find a way to cope without you in my life, Cathy.

Let me explain what Cathy represented to me so you can all understand me:

When I was originally diagnosed, I felt like I was left inside this really dark room. I kept hearing voices coming from different directions of this room, people trying to help me. However, the room still felt dark despite all the support that came my way. Then suddenly, I saw glimmers of light. These lights represented patients who had walked my path and who were willing to guide me through the darkness. There’s nothing that can compare to the support of other patients (and I am not saying other types of support aren’t needed or don’t help). Among those lights, Cathy was the brightest of them all, because we weren’t just two patients trying to seek support. We were also friends. Now, with Cathy gone, I feel like my room just got a little darker. And as I sit here in my darker room, I’m hoping that the lights that are left never go off.

This summer, Cathy and I had not been in communication that much, and somehow I felt something was not right. Here’s another thing about Cathy: she never wanted to worry me. She tried to protect me. All the times I asked how she was doing, her response was usually the same, “OK, just trying to live with this awful disease.” And sometimes, Cathy would open her heart to confess her fears.

Then she would apologize to me. Protecting me again.

Still, I worried about her all the time.

In August, I texted her to check up on her. I got no response. That is not like Cathy, I thought. I let it rest since I knew she had so much to deal with. But days went by and I didn’t hear from her. I got worried so I contacted her family who told me that Cathy had been at the hospital and her health was not good. To please visit.

My heart stopped for a moment. I had to be with my friend.

That day, I went to the hospital to see her. I felt this huge sense of desperation and despair. I could not believe what was happening, but I felt privileged to be by her side. I told her I’d come back, and I did.

The last time I saw my friend was a very difficult day. It was the day I had been informed that the doctors could no longer do anything for her. My heart was crushed. I felt grateful that I was able to spend some time with her once again. I held her hands. And she held mine. I kissed her forehead. Told her I loved her, several times. She pointed at her heart and looked into my eyes like she never had before. Then, I walked out of her room with tears rolling down my face. And feeling so helpless.

I’ve saved most of the text messages Cathy ever sent me. As I was browsing through my messages today, I came across a random quote from my friend. I thought it was a nice one to share and to always remember:

“Try not to worry and get caught up in cancer. Enjoy your health. And live!!!”

I’m gonna miss that girl so much.

cathy

Posted in Loss | 25 Comments

Skydive Part I: The obsession

RebequeneidaEDIT72

Me

So, I finally did it.

If you’re thinking I went skydiving because of my cancer experience, stop right there. I know that sharing my skydive experience here on my cancer blog probably creates that perception, but I promise you it’s irrelevant. (And, I don’t do bucket lists.)

I do want to share the story here as a positive experience, since there aren’t enough of those on the internet.

My desire to ‘fly’ goes way back to my childhood. Of course, as a child, I did not even know that skydiving was possible. And until a few years ago, skydiving wasn’t something I thought about much. And when I did start talking about it, more often than not, people would discourage me, with a few exceptions of course. It’s reasonable though. Jumping out of a perfectly fine airplane, at 14,000 Ft above ground, is not appealing to most of the population.

Still, about two years ago, I started to become obsessed with skydiving. Now you may ask why I waited so long to actually do it. I’ve wondered the same thing, too. The straight answer is because of my desire to always want to control everything. There’s no sense of being in control when you’re a first time diver. But I’ll go into this ‘sense of losing control’ in another post. First, I want to give you a little background about my desire to fly.

I was raised in a small town in the Dominican Republic, Barahona. There‘s hardly ever any action going on there. Today, the population is about 138,000 residents. That sounds like a lot, but riding around the small rural city you wouldn’t think it. So many of the people are unseen. They are poor, they are farmers. Living literally in the sugarcane. Just like when I was a child there 30 years ago.

It’s very simple and peaceful there. You only hear the sound of the breeze in the trees. And occasionally, you hear some animals too because they’re allowed to walk around the town, on the streets. They also come visit you at your home – roosters, cows, horses, bulls, dogs, sheep, etc.

As a young girl, I remember when airplanes started to disturb our tranquility in Barahona. It was a way for politicians to promote themselves by dropping flyers about never-to-be-accomplished promises. As a child, I was fascinated by those airplanes.

At first I was petrified by the sound those airplanes made. When they flew above our house, I actually screamed and ran inside to hide under my bed. (Back then, we hardly traveled outside of our town so there were many things I was not exposed to.) This fear lasted for some time, until one day, I was stuck in a fruit tree I had climbed and I couldn’t come down fast enough to hide. I was forced to view the airplane flying above the mountains, until it eventually disappeared from my sight. Now I was instantly in love with the idea of flying.

After exposing myself to the amazing view of an airplane, my curiosity grew stronger. I got more and more excited, waiting for the next plane to fly by. Eventually, there were military airplanes too. It was about all the excitement I could get aside from the hurricanes we often experienced on the island. I would run after the airplanes, with my arms wide open. Imagining I was flying too. It was a truly magical experience for me.

Years have passed, and like everybody, I’ve been dealing with all kinds of transitions and the burden of being an adult. I realize that, just like in my small town, there isn’t a lot of ‘excitement’ in my life today either, except for dealing with the heavy circumstances life has presented to me. I am always too busy with work and other anxiety at home. I do have this need to want to escape from my reality but adulthood gets in my way. I realize I need to add some joy to my life.

So, these past two years, I found myself looking at the sky again, watching airplanes. Remembering those years as a young, happy girl with a simpler life.

And I began to obsess about skydiving. Why? Maybe I needed something outside myself to obsess about. I really wanted to do something wild, even if the thought of losing control again – the way cancer made me feel – scares me. I mean, once I jump off that plane, there’s no turning back. I’ll be…falling down! The very thing I have feared happening to me again.

The idea of allowing myself to let go and simply let things be started to look more attractive to me than always trying to be in control.

I began to talk to my fiancé every week about going skydiving. He had conflicting feelings, to say the least. He did not want to stand in my way and prevent me from doing something that I found so important, but he already fears losing me every day. Adding this layer of ‘exploration’ and risk to our lives was hard for him to deal with.

But I continued to plan and daydream. I would stick my head out of our car window, like a dog, when we drove fast on the highway, to let the wind hit my face the way it would when I went skydiving. I was trying to convince myself that it was possible. I know I drove my fiancé insane, constantly talking about the possibility of me skydiving soon. “Is it possible? Is it doable?” I would keep asking him. He had to admit that the answer was yes.

One day in August, I asked him to drive me to the skydive place. Just to take another look. To convince him and myself that it was doable. Instead, I spontaneously decided to do it – then and there – without questioning anything anymore. I didn’t even bother to read the consent forms. I already knew the risks. And my fiancé did not bother to protest anymore.

In my next post, I will tell you all about it. I must confess that it was challenging to give up the need to feel in control, which is difficult during these years when I have been threatened by uncontrollable situations in my life. But I did it. And that’s not all. That day I met someone completely unexpectedly as I was getting on the plane. I will tell you about that too.

Posted in Reflections | Tagged , , , , , , , , , , , , | 16 Comments

Sometimes “Unfinished Business” stays unfinished

family drama_EDIT2I am not into cancer movies. There’s something about the majority of them – at least the ones I’ve seen – that does not accurately portray my reality of having cancer. Maybe that’s too much to expect from Hollywood, but it still bothers me how they leave out some of the real and true details – like when a patient loses support from friends or family; or people not wanting to hear about your reality; or the way unresolved family drama isn’t “cured” because one of the members is facing the disease, and everyone becomes a supposedly better and wiser and kinder person because of it.

There is, however, one particular cancer movie that touches me every time I see it. The movie is called “My Life” with Nicole Kidman and Michael Keaton. The movie isn’t necessarily perfect, but from my perspective, it deals with cancer more believably than the other cancer movies. I appreciate it because it covers a lot of subtle topics: letting go of control, rancor, emotional pain from childhood, walking away, desperation, challenging family relationships, fear, acceptance — what I call dealing with the “unfinished business.” Those are things I can relate to. Another reason I like it is that the character gains closure before he dies. I guess that’s my Hollywood fantasy about the way I wish my own post-dx family situations could work out.

So far, this gaining of closure hasn’t been my personal experience. Obviously, I wouldn’t want the same outcome as the character from the movie, but I wouldn’t mind reaching some level of resolution in my life.  I am speaking specifically about challenging family relationships that go back long before I was ever diagnosed. During my treatments, more frequently than not, we were kind to one another. Then, when treatments ended for me, things went back to disappointment, judgments, anger, misconceptions, and manipulations.

Everyone has family drama in some form. Mine seem to go back to my infancy. As a reminder, I was not raised by my biological parents, but by my maternal grandparents. That fact wasn’t especially dramatic or traumatizing for me because my grandmother did a great job raising me. And I was happy. I saw my biological mother very rarely, so our relationship was never solid. Our relationship did not improve when I came to the U.S. to live with her full time when I was 14. We simply lacked a mother/daughter bond that should have been natural, but wasn’t because of all the circumstances, including some circumstances I still don’t understand. It’s sad. Whether I like to admit it or not, my anger over not having a motherly bond has contributed to how I was shaped as a person. [And, the death of my grandma when I was still in my teens took away the person who really mothered me.]

Despite my mother and I not being able to bond, and me trying to accept that fact and move past it, it still hurts me. Deep down, I wish I had a different situation, closer to my perception of what a healthy, supportive family is supposed to look and feel like. My grandmother represents what that means. But she is gone.

Unlike the character in “My Life,” I have not reached any resolution with some of my family members. I’ve tried to talk about my feelings many times before, but the communication gets lost in defensiveness (probably on both sides). The idea that I will be waiting for my ‘last minute’ (or theirs) with the hope of there being a movie-style resolution to our problems feels very sad. And at that point, I wouldn’t want to deal with it, to be honest. I’m already too frustrated and tired, looking for understanding that never comes, and dealing with the disappointment.

Family dramas don’t get fixed by cancer. And just because you walk away from a situation (like I’ve tried to) doesn’t mean you’re healed.

Since my dx and treatments, people seem to have expected me to change and become who THEY wanted me to become, in addition to being more tolerant than ever of their unreasonable behavior toward me. It hurts me to say, but more than one family member has expressed the idea that “God gave her this disease to send her a message so that she changes her ways.” And yes, knowing that some ‘loved ones’ have those attitudes has not helped me to be more tolerant of them.

Maybe we all have a different perception of what family is supposed to be. I know that my inability to accept the fact that this is just “how it is” doesn’t allow me to move forward and free myself from emotional pain, disappointment, and frustration.

Like Michael Keaton in the movie, I often feel like I am running out of time. I don’t want to be hung up on these unresolved family matters that I tried to walk away from (for my sense of well being). The character from the movie actually walked away too, and even changed his name. I need to be at peace with the idea that my family situations may never be resolved and that sometimes unfinished business stays unfinished.

Posted in Awareness, Coping after cancer, Family, My Wishes, Reflections, Support | Tagged , | 28 Comments

My Dumb Phone

dumb phoneAs some of you already know from my recent “15 facts about me” post, I don’t own a smart phone. By choice. I still have a dumb phone. There’s a story connected with that.

In 2011, while I was waiting for that first test result to see if my breast lump was B9, one day I received a follow up call from my doctor. When I anxiously fumbled for my old flip phone to answer it, I dropped it and it broke. I had to rush out and buy a new phone. Under the circumstances, I didn’t bother to upgrade and I bought a similar basic model.

My dumb phone is sort of a reminder of all the nightmares I went through in 2011, the year I was diagnosed, but I’ve made the decision to keep it anyway. However, I haven’t turned on the audible ringer on this phone since I got “the phone call” about my cancer diagnosis. Any sound my cell phone makes bothers me, but especially the Verizon “Kingdom Dream” reggae melody that played that time my phone rang. That time I’ll never forget. Just recently my fiancé and I heard it on someone else’s phone, riding on the train, and we both froze. I’ve avoided hearing that melody since my diagnosis. The good news is I can still enjoy Bob Marley songs.

But now there is a new issue. Something odd.

During the last couple of years, when I receive texts through my cell phone and I click to view the message, a random text that I’d saved from 2011 sometimes shows up instead. Those old cancer-diagnosis era texts have been randomly showing up when I try viewing current texts. For instance, just recently I tried viewing a text from one of my friends, but instead, I saw a text from someone I no longer hear from, which read, “oh, ok. I have faith that is the only incident. Think positive.” Again, a text someone sent to me in 2011.

The issue is I can’t seem to bring myself to erase all the cancer-related texts I received back in 2011. I want to keep them all.

There were times before my diagnosis when I was able to look the other way and ignore anything cancer-related for the most part. Now, I can no longer look the other way. In this case, it is ultimately my choice whether or not I want to continue being reminded of those dark days. The truth is I can’t pretend. I am still in this cancer mess and I have not been able to pull myself out of it because…well…we are never done with cancer once diagnosed. I can’t ignore what has happened to me. And I don’t want to.

Every time I see those texts from 2011 pop up on my dumb phone, I feel anxious but I still read them. I want to remember. The reason I don’t want to delete these cancer-related texts from my phone, the reason I keep exposing myself to the dark world that is cancer, is because I want to be aware. I want to know what the fuck is going on. At all times. I want to force myself to accept and live with what has happened to me. It kind of feels like riding down a very tall rollercoaster, with something to prove to myself. Although I feel fearful of the fall, I keep my eyes wide open.

Maybe I’ll try listening to that Verizon “Kingdom Dream” reggae melody again.

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