“Culturally Disturbed”

punsihedEver wonder why some people don’t like to talk about their cancer? I was one of these people, at least at the beginning. Many patients don’t want anyone to know except for maybe those closer to them.

You see a lot of this attitude in the Dominican Republic where I grew up, and where Catholicism is the main religion, and the idea of “punishment” for your “sins” is part of our upbringing. For example, just the other day a family member in DR told me that a friend there had died from cancer, and no one had any idea she had it.

Unfortunately one of the reasons some people keep their cancer to themselves is because, in some cultures, it is perceived as a punishment. Because cancer patients are afraid of been judged, they don’t reach out to many people for support.

Imagine how lonely it must feel when you are surrounded by people who view you as a sinner who deserves cancer. Not everyone feels this way of course, and I don’t want to beat up the DR. It’s not the only country where SOME people share this belief. Here in the US, some people feel the same way too although I haven’t encountered as many.

When this idea turns cultural, how can we change that culture, and how long would it take? There are so many elements that make up a culture: religion, social habits, patterns of behaviors, education, family attitudes, communication styles, etc.

When we introduce such ideas in a society, patients start blaming themselves for getting cancer, making their experience more unbearable. I’ve even had moments of feeling guilty about my own cancer, thinking that maybe I was being punished, although I never view other people’s cancers as being a punishment. This feeling of feeling guilty didn’t last long because it was unfair and unkind to myself to feel this way. It would have made my recovery process a lot more difficult. This behavior would also suggest that those who don’t get cancer, or any other illness — the non-sinners — have control over me.

This idea of being punished is introduced from a very young age. As a kid, I used to climb trees, and once I fell. The first thing I heard from my grandparents was, “que bueno! That way you learn your lesson to stop climbing.” My grandparents were wonderful parents to me but this is the culture we have in the DR, like in many other places. We are taught about punishment and often feel the need to judge others (because this is a lot easier than blaming ourselves). So anything that hurts a person at a mental or physical level may be considered a punishment caused by a bad behavior. This idea has always bothered me, especially because I have a family history of cancers and it has made me feel isolated at times — maybe more from people in the DR than in the US.

I have been approached by people who have insinuated that there is some kind of karma situation impacting my family. That we should ask God for forgiveness. I even had a family member tell me that she is trying to find out what our ancestors did to deserve our family’s punishment of cancer. She is looking for answers for something no one has control over and no one really understands. I’ve also been counseled to forgive (this is a challenge for me I admit) and to choose a church I can commit to going to, or else my soul will not be saved from this cancer.

An old friend, also from the DR, once texted me after finding out about my cancer and said, “don’t worry my friend. You will have good karma soon.” So I must have been quite the bitch in my past life. But at least other people were slightly kinder to me. They blamed my parents. Someone was praying for me and suggested that because I was born out of wedlock, it wasn’t really my fault— I was automatically “a sin” and this could have attracted all kinds of punishments from hell. Because we all know cancer comes from hell. Was I a child from hell too? This brings back “sweet memories” from Catholic school.

Another instance that really bothered me was the time I came across a cancer patient online who was beating himself up about why he got his cancer – interesting that he was originally from the island too. He wrote, “I deserved to get cancer because I was unkind to women.” The fact that he was a jackass toward women has nothing to do with his cancer. Not only is he telling the world that he deserved his cancer but he is insinuating that every person who gets it is paying for something they did (or did not do). Is it his fault to think that way though? I blame the culture.

It especially hurts me when people blame my loved ones for their cancers. My aunt, who was diagnosed with leukemia a year and half ago, who by the way was a Christian worship leader in her DR church, and a wonderful mother and aunt, was even criticized about her cancer. I got into an argument with someone on the train who thought that, because I was “done with cancer,” I was not going to take his comment as offensive. He said that God put my aunt in that situation so she can straighten her life. I said, “Are you suggesting I deserved my cancer too?!” He right away tried to fix it by stating my case was “different.” God was testing my faith. I thought to myself, “yea right!!” then proceeded to defend my aunt. How unfortunate and unkind.

And what about children who get cancer? What are these children paying for, exactly? How inhuman can you be to blame these children, or their parents, for the child’s disease? What about the trees whose only job is to stand and provide beauty and life to our planet? How about the animals who get cancer? Two of my pets died from cancer and all they ever did was love me unconditionally and bring me happiness.

Why do people feel the need to judge all the time and to assign blame?

It is so sad that there are such “culturally disturbed” people out there, to the point of having the sick people feel horribly guilty about something they simply had no control over. This is NOT helpful in any way. It makes the patient feel awfully sad, hopeless and alone. But it also says a lot about those people who believe in such ideas. They are in complete denial. Do they think they are immortal?

Do these culturally disturbed people realize they will face mortality one day too? I wonder what their sin will have been? Maybe arrogance. Or lack of empathy. Probably mostly ignorance.

Cancer is no punishment to anyone. It is a sad reminder that we are not eternal in life. We will all die one day; some will go earlier than others. There is no way of us knowing how. Sometimes there are no answers. Sometimes there is just luck and no luck. Please be kind to those in pain. If you are one of the “culturally disturbed people,” just keep things to yourself. Think of others more, and less about yourself. No need to share your beliefs with the sick people or their family.

Keep in mind that one day, the cancer patient may be you. I only hope you don’t blame yourself.

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

In loving memory of my pet Layla

layla kiss

“How can the light that burned so brightly suddenly burn so pale?”

After being diagnosed with breast cancer, I participated in a medical study about “finding meaning.” One of the concerns is that there is a high instance of depression among cancer patients. Psychologists at Sloan wanted to learn more about ways patients were able to cope with cancer through finding meaning or creating meaning in their lives — creating reasons to want to exist.

There were several 2-hour sessions where each patient was asked multiple questions. One of the questions was, “what gives your life meaning and how does it help you cope with your illness?” The answer came naturally to me; I said “my pets,” and among them was Layla. Layla gave me reasons to want to exist. I am not saying my pets were the only reasons, but they were a very important one.

I am not going to go into details about the difficulties I’ve faced in my life or my lack of support. Honestly, that topic deserves a blog of its own. What I want to talk about is how my sweet Layla helped fill that empty space in my heart and in my life.

Layla was the last of my three guinea pigs. She outlived the others by over a year. What makes losing Layla so difficult for me is that she was always there for me no matter how dark my world seemed to be at times. She was a representation of home in my life. She never made me feel like I was alone. Layla was my confidant and made me feel like I had a family. I even saw her as my baby.

Layla passed on June 18th at 6:37 AM in my arms at home. It was very difficult to see even when her vet told me there was no treatment for her condition (musculoskeletal degenerative disease due to her old age). Can we really prepare ourselves for losing someone special to us even when we know there isn’t much time left? I know I can’t.

I have celebrated Thanksgiving and Christmas with my pets — just us. I remember one holiday I prepared a plate of different veggies for Layla and sat her next to me while I was having my dinner, alone. I had my pet companions and felt loved. That year, I mostly celebrated having them around. I felt grateful I wasn’t completely alone.

It didn’t matter what I was facing in my life, I always knew Layla was there to remind me that there were reasons to smile and to keep going. Her gentle and undemanding character allowed me to give in and just be myself, a risk I am often skeptical of taking with people. You know how sometimes we’re too careful to love because we fear getting hurt or being rejected? I never felt this way with Layla or any of my other pets. What you saw is what you got with Layla. There was no agenda and her love was unconditional. Yes, guinea pigs do love. Layla actually liked to cuddle with me and often fell asleep in my arms, especially after she got older.

Layla was not my only support but was part of my home. I can’t remove her cage or any of her belongings from my room. It is hard for me because in a way I want to continue to imagine she is still here. I was lucky she lived with me for this long, but at the same time, the long time I spent with her makes my grief more difficult because I got so used to having her around. Is there a perfect way to grieve? It is difficult for me.

I understand nothing is eternal in life. I tried hard to extend Layla’s life as long as nature would allow me to with the help of her vets at the Center for Avian and Exotic Medicine (Dr. Pilny being her primary vet). That’s what I need to keep reminding myself. I tried preparing myself for her death because I knew she didn’t have that much longer. Guinea pigs rarely make it to 8 years and Layla exceeded those years.

I continue to tell myself this is it for me. I cannot have more pets (I still have my cat Nelly). It hurts too much to lose them. This is the burden I have to deal with as a loving pet mom. But even though it hurts, I realize I wouldn’t change a thing! I would rather have loved Layla and suffer through her loss than not to have loved her at all. This is the price I have to pay for loving her so much. When I commit to an animal I invest everything in them, including my heart because they are so worth the investment.

There are still reasons for me to smile. My memories with Layla will always remain. These memories are proof that it is possible to feel happy and hold on to love when so many other things are missing and when life seems so dark sometimes. Layla was one of my lights during my difficulties.

I want to thank Layla for all the time and love she gave me. She was a very special and pure piggy. I loved her to pieces. I hope to see you at the Rainbow Bridge, Layla. Meanwhile, eat all the fruit and veggies you desire.

This song is for my sweet Layla, “Bright Eyes” by Art Garfunkel:

Posted in Family, Support | Tagged , , | 16 Comments

Stuck in between two worlds

Painting_EDIT2_1634The best way to describe my struggle with survivorship is by calling it being “stuck in between two worlds.”

Let me start by telling you a story about a writing workshop I attended at Sloan. The panel included writers and cancer patients. One woman talked about her experience with breast cancer and pretty much summed up my feelings when she said, “I thought I was going to die, and then survivorship happened.” Let me give you her whole statement. It really stuck with me so I remember it:

I was told I was terminal. That I wasn’t going to survive cancer. I was prepared to die. I had accepted it. I wrote the letters to my daughters. To my husband. I did a few of my last wishes. Then the oncologist came into the room one day to tell me the chemo was suddenly working. That he wasn’t going to stop treatment and that I probably just needed a few more. I was pissed. Forget pissed, I was ANGRY! My entire state of mind was forced to change. I had to get used to living again. And it was hard. It still is very hard because I don’t know where I belong.

Hearing that, my mouth dropped because she had just described exactly how I feel about survivorship. And I stood up and applauded her — the only one from the panel I had done that for. For the first time I felt connected. I was relieved I was not going crazy after all.

Many non-cancer people don’t understand the complexity of survivorship after cancer. They view it as a gift, a blessing that many are denied. We are supposed to embrace this. Celebrate it. Be super happy about the fact that we were among those lucky ones who “beat cancer.” (I never liked the military and celebratory metaphors.) We are supposed to be transformed for the better, otherwise we are probably doing survivorship the wrong way.

So, these people, who have never walked the cancer path, apparently know how to do survivorship.

What I would say to these people is, no, I am not ungrateful. None of us who survive cancer are ungrateful. In fact some of us feel undeserving of such a gift because so many people die from metastatic breast cancer. I personally have questioned “why me,” but try not to beat myself up too much, because hey, I’ve now got survivorship to deal with.

I get frustrated with what’s expected of me. Sometimes I feel I am being forced into being someone I simply cannot be. I can’t be who I was before cancer because I am not done with cancer. Remember, this body I have isn’t going anywhere. This is why I have a really hard time separating cancer from me, so there isn’t such a thing as “getting over cancer.”

I also can’t be this transformed, enlighten person who is full of positivism. Now, don’t get me wrong, I have reached a certain level of enlightenment. I see everything rawer. I now see some people who I thought of as my friends who aren’t friends in the same way anymore. Maybe they just couldn’t adjust as fast as I had to — or at all. And, during my survivorship, even a few family members aren’t really as understanding as I would like them to be.

Survivorship is so hard for me because I find myself bouncing back and forth between two worlds: the cancer world and the non-cancer world. I’ve lost my sense of belonging in addition to also losing my sense of denial. Part of this difficulty I have is related to the lack of understanding and acceptance of my new reality by the non-cancer people. It makes me feel isolated and rejected.

I almost feel like I need to be multiple people in order to adjust to each world because I want to avoid conflicts and arguments. I am tired of having to explain myself over and over to questions like, “aren’t you done with cancer yet?” It is tiring.

My behavior — where I am — has nothing to do with being weak or being intolerant, it has to do with adjusting to a new life. A life I didn’t get trained to deal with in advance. And seriously, there isn’t really a way to prepare for this life in advance. We only figure out how to deal with cancer when it happens. No one wants to deal with it or even think about it otherwise.

So here I am. This is the only way I know how to deal with my cancer: If I want to feel sad I will. If I want to scream, I will. If I want to be realistic, I will (no, I am not calling this being “negative” as many people portray it as being.) If I want to feel scared, I will be. If I want to kick and moan, I will. If I don’t want to be surrounded by those who don’t understand where I stand, I will choose not to be. If I want to make drastic changes due to my new life, I will. We, cancer patients, have the right to feel anything we want. We have to allow ourselves to experience all the emotions that come with a cancer diagnosis. We are also entitled to do our cancer the way we want.

I’ve sensed some distance from people I know. It feels as if it gets worse as time passes. Some friendships have changed. I understand I have a dark world and not everyone can cope with that. A lot of the support I get I receive from other patients. There are some people in my life who I appreciate a lot, close friends and my guy who suffers with me. I am forever grateful for their support, patience and understanding.

Maybe one day the people who don’t get it will understand what it is like being stuck in between two worlds. I just hope it isn’t cancer that teaches them.

Posted in Coping after cancer | Tagged | 27 Comments

My sixteen chances

organs12Just when I had started to mentally prepare for my chemo treatments, my surgeon raised a good question:

“Do you want to harvest your eggs prior to chemo?”

(A surprised look on my face)

“If you want to have children one day, I must warn you, the chemo can harm your ovaries making you infertile. I suggest you harvest your eggs prior to chemo. That is, if you want to be a mother.”

How do you answer that in the middle of a mess like cancer? While facing all kinds of uncertainties?

I was already dealing with the stress of starting chemo. Now I had to switch gears and reconsider the idea of having a child. I had already accepted that I was probably not going to be a mother after cancer.

“Can you be a mother after cancer, really?” I asked my surgeon.

He said it was a consideration. Hearing my doctor suggest this option gave me some hope.

You see, I had already made up my mind when I heard the words “you have cancer.” I did not even know if I would survive the treatments, let alone try to consider becoming a mom. Even if I survived the treatments, I thought, I would have been worried that my child was not going to have a mother for too long. I still worry about that possibility today.

I went home and talked about it with my partner, who I was only dating for about a year— talk about pressure! He immediately agreed I should harvest my eggs.

A friend of mine who was 28 when she was diagnosed with breast cancer had harvested her eggs. She suggested I do it too.

“You better do it! I promise you won’t regret it. You want to have options available in the future,” she said.

My friend explained the process though she left some details out so not to scare me, as she admitted to me later. But I was glad she convinced me to do it.

I decided to go to NYU Medical Center to harvest my eggs, where I learned my insurance was not going to cover the cost. This isn’t right! Cancer patients need more resources. I was lucky I had savings but it was still a financial hit for me— A big thanks to the Livestrong Foundation who helped pay for the fertility drugs.

The Endocrinologist asked a lot of questions about my cancer, my treatment plan, everything. It turned out I was “ready” to start the process on that same day and there was no time to waste. I was given a lot of paper work to sign. I felt pressured in a way, not just by the medical team but by life. Life was putting me in a situation where I had to rush. I felt overwhelmed.

I won’t go into details about what the medical process was like — maybe in a different post. As Carrie wrote in her blog, those self-administered needles weren’t fun — especially the last one. But it’s all very doable. What I will say now is that I would have never harvested my eggs if it wasn’t for my cancer diagnosis.

The cost of harvesting my eggs didn’t end with the procedure of course. I continue to pay a yearly fee to keep them in cryogenic storage — out of pocket — until I decide if I want to use my eggs, which will be another major cost.

Now that I know I carry the ATM gene, doing the in-vitro fertilization would probably be the best option for me. So I have no regrets I harvested my eggs. I also like having options. It’s too bad insurance companies don’t cover this part of the cancer cost.

But guys, I am starting to feel discouraged because I am not even sure I can carry a child. People say that I could always adopt, and I’m aware of that. But I want to be able to feel my child growing in my tummy; feel his first kick; hear his heart beat. I want it all. I mean, a lot of money has gone into this harvesting/storage business. After doing all this work and really wanting to be a mom, I would hate to lose the opportunity to use my eggs.

Surrogacy, you ask?

It’s just not affordable for me. I actually looked into it right after I was done with treatments. Not only is it expensive, but not all states support it—NY being one of them (unless the laws recently changed.) This means if I found a surrogate mother for my child, she can take me to court to keep the child. So I would have to find someone outside NY. This may not be an option for me.

I remember the day I went in to retrieve my eggs. I felt so nervous. I also remember waking up from the procedure an hour later.

“We retrieved sixteen eggs,” the nurse said.

“I have sixteen chances,” I replied.

But today I am not sure how much of a chance I have. My doctor says that, in theory, there’s a risk of my cancer being restimulated if I get pregnant, although there is no research backing this up. I am also getting older. This makes me feel sad because I want to have my own baby. I want that right and I feel cancer has taken it away from me.

I will need to make the decision about having a child next year when my oncologist and I have that discussion about taking a break from Tamoxifen— I will have completed my 5 years on the drug. She wants me on it for 10 but is willing to let me take a break. The theoretical risk with pregnancy is that the hormone levels increase, including estrogen. My cancer type is fed by estrogen, which Tamoxifen blocks. All these decisions are difficult and scary.

But — The thought of having my own child gives my life some meaning.

You guys might think I am crazy but…

…there’s a drawer in my bedroom full of baby clothes. I’ve been buying baby clothes for the last 5 years now–whenever I see something adorable I just buy it. At times I visit that drawer and start to fantasize about having a child. I keep telling myself I have sixteen chances. I have sixteen chances.

One of many pieces from my drawer.

 

Posted in Coping after cancer, Fertility | Tagged , , , | 16 Comments

The “Big D”

reb_100037069“The trouble is, you think you have time” –
From “Buddha’s Little Instruction Book”

The day I was diagnosed with breast cancer was the day the “Big D” packed his bags and left me. I don’t blame him. If I could have, I would have done the same thing. But I can’t replace my body. It’s the only one I’ll ever have.

Denial is like a mistress: you know it can get you in trouble, but you like her so much. You like how it makes you feel uncommitted, burden-free. You also think you need her in order to run away from the reality you refuse to face, but that with time, you will eventually face. And when you do, that’s when denial becomes out of your reach — just a fantasy. A fantasy you wish could have lasted forever.

Denial is an important tool— a tool that allows you to cope with life in general. Once it’s taken away from you, everything becomes raw, including those situations we often want to run away from. Revelations are exposed and whether you are ready or not, you need to face them, on your own. It’s now time to accept reality.

But there are different types of denial and some are healthier than others. One situation where denial is a useful tool is when it comes to mortality. Imagine if we all thought about our death all the time. How would one cope? We wouldn’t be able to find a lot of joy. A lot of the decisions we would make would end up depending on the awareness of death.

We are all aware of mortality because we see others dying, but denial allows it to be kept at a distance. We don’t believe death can happen any time soon.

It was very interesting for me to see people’s reaction when learning about my cancer diagnosis — all so different — but most had one thing in common. They all lacked the awareness of the possibility of them being diagnosed with cancer as well. That they could lose their life in the blink of an eye. I sometimes wish I still had that kind of denial, the kind where, after hearing someone’s else’s bad news, you process it, then move on. I miss having that. Not having denial is one of the things that makes survivorship so challenging at times.

Although I wanted to keep my diagnosis private at the beginning, I couldn’t help but to try to bring more awareness to others, especially my family; after all, we have a history of cancers. However, some of their responses were shocking to me. Some of my family members denied the possibility of ever getting any cancer. Others inclined toward the idea of me not being religious enough. Because they were more religious than I, in their beliefs, they were less likely to get an illness. In other words, those of us who have been diagnosed with breast cancer were somehow asking for it. This is how Denial takes over people’s heads.

Some of my friends were not educated about the disease and so assumed that because I had a history, I was more likely to get it, and not them.

Thankfully, I am educated enough (now) — and at peace with myself — not to take these comments too personally, but I do worry about them. I worry about the young ones in my family. And I worry about those who lack the discipline to go check their bodies. But I am aware that it is not my responsibility to make people be diligent about their health. I can only control what I do with my health.

Losing my denial was as hard as, if not even more difficult than, being diagnosed with cancer. I lost a sense of hope. I don’t fantasize about my future as much as I used to. I have a hard time planning ahead. I live from one Oncology appt. to another — I think of the interval between them as being on a mental “vacation”— and I make sure to include at least one happy activity. Maybe this is the “good” tradeoff about losing your sense of denial, that you are so aware that life can be taken away from you that you try to do as much as you can. Be as happy as you can. But this is not always the case. Some people have a really hard time coping after cancer. And this is normal, too.

There is a gap between those who have been diagnosed with cancer and those who haven’t. We patients often feel minimized by the non-cancer people when we expose our emotions and fears to them. They expect us to “move on” after treatments are over. To go back to who we used to be. We say that others who haven’t walked the cancer path don’t get it. But there’s a reason they don’t get it; not only haven’t they experienced what we have, but their responses and reactions are also a reflection of their denial.

So here I am, thinking of my old days when I thought I would live for a very long time and that there was no way mortality would knock on my door at the age of 32. There’s still a chance I might live to be old, but the awareness of death is too raw for me now. I also find it difficult to go back to my old self. Strangely enough, I feel safer where I am today — not having to rely on denial to stand between me and the unseen cliffs of life. I now know the cliffs are there, and I’m trusting myself to do the watching.

But, to those who have been lucky enough not to receive a mortality notice, such as a cancer diagnosis, enjoy your Denial as long as you can. Because once it decides to pack its bags, you might find it will not come back. Try to do as much as your heart desires. Tomorrow is never promised to anyone.

Posted in Awareness, Coping after cancer, Reflections | Tagged | 23 Comments

May I introduce you to my pets?

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Nelly

Nelly, who I named after my sweet grandmother, is my kitty. It wasn’t until I took her to the vet and we checked her adoption records for the first time that I realized she shared my grandmother’s birthday. What are the odds? So she is extra special to me. I got her from a shelter when she was only 4 months old. Nelly is a very independent cat, which I appreciate given my busy schedule. She likes to do things on her own terms, like cuddling and letting others pet her. Nelly loves to nap with me. I call her “Moo-tee” which is a baby way of saying “Mushi,” which is how people call cats in the Dominican Republic. But my honey calls her “Moody,” which is also accurate.

She turns 11 years old this year. I hope to enjoy her company for many more.

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Layla

This is Layla, who is now 8 years and 4 months old. Someone used to tell me she would outlive everyone else because of her tough attitude. She has for sure outlived her guinea pig years. Someone gave her to me, along with Basil, her hubby. They were both about 3 months old. Layla is very demanding. She used to drive Basil insane, to the point of him hitting himself against the walls of the cage. She also had some issues with her baby, Bingo. Sadly I had to separate them all. (Too much bullying.) Perhaps they just needed their own space. Don’t we all?

Layla loves to eat lettuce, Italian parsley and blueberries. She loves cuddling with me.

The following two piggies are no longer here but this post wouldn’t be complete without them.

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Basil

Basil, who I used to call “poopilandia” because of his excessive amounts of poops, was my second piggy— given to me with Layla. I also called him “handsome fella,” because he truly was. He had a little streak of grey hair at the top of his head that made him look exceptionally handsome. Basil enjoyed taking road trips with me. He also had a special look – he would tip his head down and shine his eyes at me sideways, like he was flirting.

Basil was quiet. He loved his celery, grapes and raspberries (not recommended to feed guinea pigs too much fruit, only little pieces once in a while).

Next is my very special piggy, Bingobella.

Bingo 3

Bingobella

When I got Layla and Basil I thought they were both females. But, Basil’s behavior made me wonder.

I soon noticed that Layla seemed bigger than usual. I blamed it on her diet. She could eat a whole bowl of salad.

One afternoon, after a fun time at the park with Basil and Layla, I got home and to my surprise noticed Layla jumping (we guinea-pig-people call it “doing popcorn”). I got closer to the cage to make sure she was OK. Then, I noticed she was giving birth! I could not believe my eyes when the baby’s first instinct was to reach out for the celery and cucumbers, which turned out to be her favorite treats. Layla wasn’t even done cleaning her up.

And that was Bingobella — who grew up to be bigger, stronger and louder than her parents. And her name? As I said, her arrival was quite a surprise to me, so I thought naming her “Bingo” was appropriate. But I also felt that the name needed more of a feminine touch so I thought of combining both of her parents’ names into one: Ba-la — Bella. And that’s how I came up with the name, Bingobella. She was also beautiful which of course is “bella” in Spanish.

I don’t have children but I see my pets as my babies. They really become your family. And they were all a great support for me during my cancer mess. It made me happy to see them. They were also a reason for me to put up with the treatments.

Both Basil and Bingobella have left an empty space in my heart. I miss them a lot.

But I believe in the Rainbow Bridge.

Posted in Family, Support | Tagged | 15 Comments

Associations

IMG_1596I’ve just returned from a vacation. I was really hoping to have both a mental and physical time off. Away from all of this stress I have in NYC. I didn’t want to think of cancer during my vacation. But as I was walking around California, I realized that I have some cancer associations that might follow me around for a while. Hopefully there will be a time when I can let these things go. I mean, it’s not like I get panic attacks when I make these connections, but they always make me think of cancer.

Here are some of my cancer associations:

1. My phone ringtone: I haven’t turned on the audible ringer on my 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. I’ve avoided hearing it since. The good news is I can still enjoy Bob Marley songs.

2. ATM: Now this is kind of messed up! It’s not like I can avoid automatic teller machines, unless I hide my money under my mattress. My mutated cancer gene is called “ATM,” but it didn’t come with any cash. Now, any time I see a sign for an ATM (they are everywhere), I think of my gene—especially the sign that says “ATM inside.” Really? Couldn’t my gene be called something like XQñ, which is less common? I don’t even know if those initials exist which def. would have allowed me to forget about my gene during my time off.

3. Veggies with “clear margins”: Ok, so you might think I am crazy. It took me a year to stop thinking of a bad spot on a veggie and not relating it to cancer. Whenever I would see a brown spot on an avocado or a pepper, I would remove it carefully so “to get it all” and I would run to my honey and say, “look, I got clear margins!!” There are still times when I think about it.

4. My mother’s bedroom: I spent most of my chemo days in one of my mother’s bedrooms. Whenever I visit her place, I avoid entering that room. And when I have slept there since, obviously I can’t help but think of those months.

5. Mini Argentinean sandwiches: Mini white bread triangle sandwiches with a thin slice of ham, cheese and a spread. Yuk! I can’t eat those anymore. The sad part is that I used to love them, but my mother fed them to me a lot during my chemo days because she was working and wanted to make sure I had some food I could tolerate. That tolerance didn’t last too long. Instead, I stuffed myself with pea soup every single day, almost. Luckily, I still love my pea soup.

6. Graham crackers: My hospital has these available in the waiting room, in little plastic wrappers. I simply hate them now. They remind me of not being able to eat during chemo. Even my honey, who accompanied me to my appointments, and ate a lot of those crackers, makes the association, saying that he never wants to have to see another wrapped graham cracker again.

7. My breasts: I kept both of my breasts because it was the right decision for me at the time. I was too overwhelmed with the information and the treatments I was already getting for my cancer. But, truth is, they remind me of cancer now. I sometimes try to play dumb, pretend they aren’t even there. But they are size D so it’s a bit of a challenge to fully ignore them, ya know? No guys, I was referring to the fact that they sometimes get in my way. And yes, this has affected my sex life, too.

8. Every test/scan: Obviously, every test I get now—blood work, sonograms, or self-exam, has me focused on cancer.

The funny thing is, even when we haven’t been diagnosed with cancer, doctors often recommend these tests to rule out malignancies. However, these cancer conversations never take place until the doctors have found something. Then you can’t deny talking about it and dealing with it.

9. Winter: I don’t mean to sound ungrateful. I know some of you expect me to be transformed after cancer. To suddenly love all life has to offer, including winter. Or else. I have come to appreciate things more passionately, because now all my emotions seem to be more raw. It could be the hormones, Tamoxifen, getting older, “maturing,” life circumstances…whatever. Let’s not give that credit to cancer please.

But anyway, moving to the states from an island was difficult enough for me, but on top of that, it now seems that I receive all the bad news during the winter: my cancer diagnosis, my grandmother’s terminal diagnosis, my great aunt’s terminal diagnosis, my aunt Rossy’s leukemia diagnosis. Now I have a bad association with this season, which sadly includes the Holidays, too.

How about you? Do you have any unusual associations in your life that now remind you of cancer?

I already need another vacation.

Posted in Coping after cancer | Tagged , , | 17 Comments

Reasons she was my mom

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Me with mama

Today is Mother’s Day here in the U.S., but we celebrate it on May 31 in the Dominican Republic (D.R.), where I was born and raised by my grandma. But she was also my mom. My dad. My best friend.

My biological mother had moved to another part of the country to make a living so I hardly ever saw her. My grandparents took me in from birth. Eventually my mother moved to the States when I had just turned 7 years old. So, my grandparents took care of me for 14 years. But it wasn’t until recently, well, maybe a few years ago, that I realized that my grandma was more than just a grandmother to me. She was my mom, too. And there are many reasons why she was. But I will list just a few.

When I was growing up, I loved to eat a lot. I might have had an eating disorder now that I think about it. Right after eating a big lunch prepared by my grandma, I would gather some ingredients to continue cooking on my own, on a charcoal grill, without her knowing. I would get so sick after eating so much.

“Next time you get sick, I am going to visit cousin Alba and leave you alone so you can stuff yourself some more,” my grandma would say to threaten me. One time, she almost did.

Another day came when I overate and got sick. My grandma got dressed to visit her cousin Alba like she said she would. I remember sitting in the middle of my bed, throwing up and crying, as I saw her leave the house. I was scared. Not a minute had gone by, when my grandma turned around and came back in the house. She changed out of her good clothes and shoes and went into the kitchen to make me a chicken soup. Seeing how scared I was, she never tried that tactic again.

Going through puberty is tough. I was 10 when I started to go through this stage and it made me agressive. Damn hormones have always gotten me into some kind of trouble!

“I am leaving this house and not coming back,” I would say to mama whenever I was unhappy about something.

“Let me know because I am coming with you!” was her response.

“No you are not. You can’t come with me.”

“Oh yes, I can. And I will. I have a big suitcase where we can fit all of our clothes.”

I did not know what to say to that except I felt bad I said those words to her. Because I could see she really meant it — that she would never leave my side. She always had a way to calm me down with her loving words, instead of war words. And no one else could do that except she.

Then there was a guy named Pachico, that “liked me.” The problem was he was 19. I was 12. I developed early so I really looked 17. One evening, he stopped by the front of my house to read a poem he had written for me. I didn’t like him but I enjoyed the attention. A few minutes later, I saw my mama holding a pot with hot water in it. I had no idea what she was doing until she made a stop next to me and said to Pachico, “you see this hot water I am holding in my hands? If you ever come here again to bother my daughter, I will pour it all over your head.” I was embarrassed and he apologized. Pachico was actually a gentleman and very polite, apparently.

At all ages, from the time I was a child until I was a teenager, my mama always held my hand when crossing the streets.

When I moved to the U.S. at the age of 14 to live with my biological mother, my mama decided to come with me for the transition. She stayed with us for a few months. I was not completly happy with the sudden change, although I did want a normal situation for myself, to live with my mother and sister.

My grandma was so worried. Looked sad most of the times. This was also because I was a teenager. We all know that stage can be difficult and mine was, not only because I was in that transition age, but because I was removed from my home. To a new “home.”

When I moved to the U.S., I liked to be out all the time. This was the biggest challenge at home. I would come home by midnight (past my curfew) and everyone would be sleeping except mama. She would be up waiting for me to get home safely, just the way she watched over me when I was a child in D.R.

Mama also knew how to keep a secret. I could tell her everything about my life and I knew she would never reveal the information. I always remember her saying, “you are the master of your secrets and the slave of what you speak of.”

When mama got ovarian cancer, she was pronounced terminal. I was 19. She was 67. I went to see her in the D.R. for a week, something I regret, not being able to stay longer. But I spoke to her on the phone every single day, except one day. I was told she cried the day I didn’t call. She had asked for a picture of me to hold in bed. She asked her brother Toño, to shelter me if I was ever homeless.

The day before my breast biopsy, I had a dream about mama. She had only spoken to me in my dreams 5 times. In this dream, as she was staring down at the floor,  she said she knew about my biopsy. Then she lifted up her head and her face was full of tears. She then hugged me without letting go. I contuned to tell her I was OK. I was OK.

Thinking back again to that time when I first moved here, I had a really bad fight with my biological mother. My mama was in the house when it hapened. I was upset with her too. I yelled. I never yelled at my mama. Ever. Not until I moved here. She knew I was struggling, emotionally, although I never mentioned it. But she didn’t yell back. Instead, she went into my bedroom with me. Locked the door and said:

“One day, you will realize I am the one person who has loved you the most in this entire world.”

What do you say to that? I said nothing. I was too young to realize what those words really meant. And this is part of what’s making my grief so difficult. That I lost her during a time when I did not get it. A time with many struggles. Anger too. It’s a reason why I am writing my childhood stories about our lives together. Not just to let her know, wherever she may be, that she was right, but to also let her know that she’s the person I’ve loved the most in this world.

She is the reason I would consider adoption if I can’t have children due to my cancer. I see now the intensity of her love without even having given birth to me. After all, a mother is a verb, and not just a noun. She was both.

These are some of the reasons she was my mom.

Happy Mother’s Day Mama. I miss you. Every. Single. Day.

Posted in Family | 4 Comments