My “stuck-in-between-two-worlds” haircut. Were they lying?

My hair was pretty much gone after my second infusion of Adriamycin. I was expecting it, so I was mentally prepared to deal with that loss. I did not cry when I went bald. I did not cry when I shaved my head. I did not look hot either, although people insisted I could pull off the “bald look.” I knew I looked like a Martian which now fits me perfectly because I also have a mutated gene. Oh wait! That’s the Xmen I’m trying to compare myself to. Nevermind.

I only have one or two pictures of myself bald, which I took with my dumb-phone (I don’t own a smart phone) so the resolution quality of the picture is lacking. I was serious when I said I didn’t want to call any kind of attention to myself when I was diagnosed, so I refused to allow people to take pictures of me. I knew the pictures were not being taken because I looked nice. They would have been taken because I had cancer and because I was bald. Yeah, yeah, don’t try to convince me otherwise.

People continually told me, “hey you look hot bald!” I went along with it because I didn’t have the energy to argue. “I know I look hot. Don’t need to point it out, girl!”

Then my hair started to grow back, all neat and…super grey. I had to take a picture of that because I honestly thought I was transitioning into an old lady very quickly.

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One month post-treatment

Again, people continued saying to me, “How cute are you? Your short hair makes you look so young!”

Seriously? Most of it was grey! So again I went along with it and allowed the “Big D” (denial) to kick in to make myself feel better. And to make them feel comfortable.

Hair started to grow more normal two months after finishing chemo treatments. I had baby hair, so curly and wavy. I liked it. Others liked it too.

All my life, before this, I had very long hair.

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My long hair before cancer

It made me feel very feminine. I liked it better long — until I was diagnosed. I now refuse to let my hair grow long. I feel more comfortable keeping it short— it makes me feel prepared.

Now I wear what I like to call, “my stuck-in-between-two-worlds” haircut:

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My “stuck-in-between-two-worlds” haircut

Even the look on my face has changed. It feels right. I also feel ready. If I ever have to shave my head again, there will be less work to do. At the same time, I also don’t want to be part of my old world. I am not the same person I used to be. This is my new “comfort zone” — to keep my hair short.

me now

The longest length I go for.

But recently, more and more people tell me they miss my long hair. “How come you don’t let it grow?” they say to me. And when I get it cut, they now say, “Oh no, you cut it short again?!”

Were they lying to me when they said I looked hot bald? What about when they said my short hair looked adorable on me? Is it that they are sick of my short hair? Does it remind them of my cancer?

No, I think it’s the old me they miss.

But does it really matter if they were lying or not? It’s not like I had a choice to change anything. I also can’t magically become who I used to be, because I can’t. I am stuck in between two worlds now: the cancer world and the one where denial hangs out. I can’t belong to either world 100%. I need to split myself between them and part of that split involves my physical look, too.

Why, you ask?

Because I refuse to be dropped again, the way I felt when I first heard the words, “you have cancer.” I was not prepared. I was not even warned. Now I know better than to get too used to fantasies. Ok, maybe “hair” is not really a fantasy, but it is not so important to me anymore.

I know I have to live my life, and I am truly trying, everyday. But I also want to get used to the idea that this life won’t last forever – one of my ways to feel “ready,” in addition to keeping my hair short. It’s also the way I cope with my “new normal.” My new comfort zone.

And ironically, a good way to truly live life to the fullest.

Posted in Coping after cancer, Self Awareness | Tagged | 10 Comments

What it feels like to be in the oncology waiting room

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Me waiting to see Dr. Dang (Oncology)

My friend Ed recently asked me, “What does it feel like to be in the oncology waiting room?”

It was an interesting question. I had seen many doctors in my life, but never a medical oncologist. It feels different to me, of course. Even during my cancer experience, it felt different at each stage of treatment.

We all go through our yearly check-ups with our doctors — PCP, GYN, dermatologist, you name it. Personally, I never really thought they would “find something,” certainly not in my breasts. My tests results had always been great. Even while I had my tumor, my blood work was excellent. “I can’t find anything wrong with you!” I recall a doctor saying to me three months before I found my lump. I am young, I thought. What could possibly happen at this point in my life that’s life-threatening? And no one in my family had been diagnosed with cancer before the age of 40.

Before BC, I had different worries when I saw my regular doctors. “Will my cholesterol be too high? I’ve been eating too much greasy foods lately” or “Is this a UTI?” You know, simpler stuff.

Ok, I’ll confess. There were times when I thought they would find ovarian cancer due to my family history, but breast cancer was the farthest thing from my mind.

I never enjoyed seeing doctors. I did it because I had to. It’s what I was told to do at home from a very young age — to take care of my health. There just seems to be more issues with us females, no? Even our gynecology check-ups start at a much earlier age than men’s prostate exams. They don’t get their prostate checked until after they’re 40. But we ladies need to monitor ourselves for cervical cancer, for example, at a much younger age.

But not to distract you from what I said to my friend…

“Ed, the ‘Big D’ (‘Denial’) used to be a good friend of mine. He used to accompany me at all my doctors’ appointments. But the day I was diagnosed with cancer he abandoned me.

For me, the first two months after diagnosis were the worst because I was still waiting for the treatment plan. I did not know ‘how bad’ the cancer was. Once that was figured out, it became easier. In fact, seeing my Oncologist made me feel safe. That is, until my treatments were finished. Then it was a different story. Without the regular appointments and follow-ups and constant meetings with my team of cancer doctors, I felt I was no longer protected. I felt abandoned.

On the other hand, now all of my appointments with my general doctors are nerve-wracking for me. Now that they know about my cancer history, the attention they give me seems slightly different — they pay more attention to me now, which in a way is a good thing.

‘You haven’t gotten your period yet? Come in, we’ll do a sonogram!’ my GYN will say to me the second I complain about not getting my period. Before my cancer she would say, ‘It’s probably stress. Wait for it. It’ll come.’

Of course, it feels a lot more intense in the oncology waiting room. You are there to check for one thing and one thing only: cancer. What makes this process so difficult, unlike previous times when I saw my regular doctors, is that I’ve already been diagnosed with cancer. In my mind, it’s just a matter of time. I just don’t know when and how involved it will be. There is always the fear it will come back.

I fear what my Oncologist might tell me next. Waiting to be seen, I think, ‘What if she sees something suspicious?’ I tell myself. ‘Would she suggest a new scan if I complain about pains? What if she doesn’t suggest a scan and there is something?’ ‘What if my blood work shows something?’ And remember, denial isn’t there with me to keep me calm. Only the Ativan is, and sometimes that doesn’t even work so I gave up taking it.

In the waiting room, I reach for magazines to distract myself, but they are all related to cancer. Couldn’t my hospital have magazines on, let’s say, ‘How to get your groove-on back after cancer’?

And there is something else: I see other cancer patients while I wait. We are all in different stages — some patients may be in a lot more noticeable trouble than me — an opportunity for my mind to get creative, in addition to also feeling a bit guilty.

We all look at each other in the Oncology waiting room wondering what each of our situation is, but we are too afraid to ask one another. At least that’s the culture at my hospital. We can still see the fear when we look into each other’s eyes though. That we all have in common.”

No, it isn’t pleasant to be in an oncology waiting room. But these are the cards I’ve been dealt, I tell Ed.

Oncology appointments never really end. They’ll keep track of my health for the rest of my life. I can always choose not to see my oncologist anymore, or to see her less. She actually tried to put me in the survivorship program at MSK. This meant I would only have seen her if something came up, to which my response was, “No way, Dr. Dang!” I wasn’t even three years out from diagnosis. How could this be? So I am back to seeing her 2x a year. So, the thought of NOT seeing my Onco scares me even more than having to see her.

In a way I think I have gotten used to this “new normal.” It has also turned out to be my comfort zone.

What makes this experience challenging is that I haven’t been able to control the fears and anxieties I feel in the oncology room. And these feelings contribute to how uncomfortable it is to be there. I felt I lost control over my life when I was diagnosed with cancer. I fear it could happen again.

Posted in c World, Coping after cancer, Follow-ups | Tagged , | 17 Comments

The devil in Ms. Matos

Bathroom TimeI haven’t written about my chemo days yet on this blog but I sometimes think about the unexpected things I had to face as a result of those heavy treatments. Today, a memory popped into my head that actually made me laugh. But believe me it wasn’t so funny at the time.

Doxorubicin, the chemo drug known as “the red devil,” really did put the devil in me after my second infusion, in the form of terrible constipation. The added challenge of having English as a second language didn’t help.

One Saturday morning, in distress, I called my hospital.

“When did you last have a bowel movement?” the nurse asked.

I thought about it for a moment and said “maybe a day or two ago.”

She said that sounded normal, and that I should continue to follow doctor’s orders.

“If you still don’t have a movement in the next few days, call us back.”

She was less concerned than I was, but I did not question her.

I had done everything as directed by my oncologist: drank lots of fluids, ate small portions of foods, took my stool softeners, rested. But no matter what I did, I still faced the evil side effect. I was in so much pain I could hardly move or eat. And the pills, I can’t figure out how they found their way in. For days, I lay on my bed. I barely closed my eyes all night, crying.

One day, my mother put me in a “giving-birth” position, determined to help. She placed a puppy pad on the bed, just in case. I had the contractions, but no baby arrived. ”

My mother put on plastic gloves, ready to help me go. “Come on, lay down!”

“Stop it, ma, you’re not a proctologist,” I cried. She laughed, but this was no joke. This was real pain. Real suffering.

The next Friday morning — Good Friday, and the day I turned 33 (as if this event wasn’t dramatic enough?) — I struggled to the phone, to call my oncologist.

“Any bowel movement?” the nurse asked. I struggled to speak. When she didn’t hear me, she asked again. “When was the last time you went?”

“Two weeks ago,” I said.

“Two weeks ago?! This is not what you told us! The notes say that the last time you went was last Friday, one week ago.

“You asked if I had a bowel movement. I feel contractions in my bowels every day. Movements. But I am not going.”

“Miss Matos, that is not what bowel movement means.” And she explained. “If we knew this, we would have told you to come to the emergency room.” She doubled my dose of softeners and laxatives, and repeated these new instructions three times. “If you don’t go by tomorrow morning, you need to come to the hospital and have us help you manually. Do you understand?”

I finally did understand. I took my pills and drank all the water I could flush through my system. Saturday came, and I finally “gave birth,” though it was not an easy one.

“This must be the feeling you get when giving birth to your own child,” I thought, which is probably why it took me so long to flush.

The good news? There was no need for any special assistance, and my intestines remained intact despite the misunderstanding.

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This post was inspired by Nancy Stordahl from her post.

To newly diagnosed patients: Although I had this bad experience, it doesn’t mean you will too. But try these steps to help minimize your chance of constipation problems:

  1. Eat very small portions of food starting 48 hours before your first treatment.
  2. Eat small portions of food more frequently.
  3. Drink at least 8 glasses of water a day.
  4. If the chemo you’re taking can cause constipation, be sure to start taking stool softeners the day before chemo but ask your Dr. how many days you should be taking them for and how often (I took 195 pills during the last 3 infusions of AC. Yes, it was that awful for me.)
  5. Have laxatives handy.
  6. Have prescriptions handy in case you need to run to the pharmacy. Best to have the prescriptions filled so you’re ready.
  7. Avoid carbohydrates.
  8. Eat a very high-fiber diet.
  9. Don’t sit around. Try to move around as much as you can.
  10. Know what bowel movement means so you don’t experience a more serious problem.
  11. Keep TUCKS handy in case you develop hemorrhoids due to severe constipation (http://www.tucksbrand.com/).

To other fellow bloggers: If I missed anything on this list, please feel free to add in the comments.

Posted in c World, Chemo | Tagged , | 9 Comments

To ignore or to educate: that is the question

rihanna animated GIF I don’t think any of us really expects people to offer us perfect words of wisdom or comfort when they find out about our diagnoses, but I am surprised by how many people have impulsively said really inappropriate and completely uncomforting things.

How do some people become so insensitive that they feel free to casually and graphically talk about cancer deaths — even to someone they don’t know well enough?

You know, I am getting tired of excusing certain behavior with the “people don’t know what to say” phrase. There has to be a line people can’t cross and they need to be aware of it. But whose job is it to educate the non-cancer people about these things? A patient going through treatments is too tired to do it.

Well, recently it happened to me again — and I responded exactly the way I wanted to. I was telling a co-worker (a temp, who was on her last day at the job) about my diagnosis and she didn’t even let me finish my sentence when she started giving me details about her friend’s painful death with cancer. I could not help myself. I leaned over her desk, looked into her eyes, and said “you know, you will die one day too.” I know my approach was not the best, and probably a little inappropriate, but I guess the annoyance caught up with me.

I reminded her that everyone will face mortality, but we don’t like to be reminded of it, do we? And of all people, we cancer patients certainly don’t NEED to be reminded of it. Anyway, that was the last I saw of my co-worker.

I’ve read a lot of articles on “what not to say to cancer patients.” I think we’ve all been victims of situations like the one I described above. Often I haven’t responded the way I wished I could have. I get upset with myself for that. But maybe there is no right way to respond.

During my treatments, I didn’t want to use my energy to educate these people while I was dealing with a serious health issue. And, personally, I was afraid to lose the support.

So, when inappropriate things were said to me, I would tell myself “their intentions were good” because I really wanted to believe that.

We all know that many people have a hard time with self-awareness, and most people don’t know what to say or how to act around you when you give them your news. But it gets frustrating sometimes – to the point that we feel alone. So wouldn’t it be better to correct/educate them so they don’t say something wrong to another cancer patient?

I think that just as much as we patients get educated about how to treat our disease, and how to cope with it, there should also be some level of education on how to approach a patient. But whose job is it to educate? Should we incorporate a new curriculum at home to teach our children about empathy and how to behave when others are facing a challenging situation such as cancer? We should already be doing that though.

Should hospitals incorporate new strategies on how to care/approach/communicate to a cancer patient? Or is this responsibility another part of the patient’s burden? After all, we patients are probably best qualified to lead a real discussion and create a better interaction between the patient and the non-cancer people.

I think this communication problem is one of the reasons why patients isolate themselves and don’t feel they receive the right support from non-cancer people (not saying all act in that way). This is why I didn’t tell everyone about my diagnosis in the beginning. I just wish we didn’t have to excuse other people’s behaviors anymore. I also wish they wouldn’t take things personally when we try to educate them.

By the way, it feels just as bad when it’s a family member facing cancer, and someone responds in the same way.

This is exactly the type of situation where you should ask yourself the question: “How would I feel if someone said that to me?” before saying anything.

I am curious to know what other patients think. What’s more important to you: to ignore or to educate? How do you react to people’s ignorant comments about your cancer? Do you use the energy to address it at the time those comments are said, or simply ignore them altogether and move on to the next interaction?

Posted in Awareness, Coping after cancer, Reflections, Support | 18 Comments

April 1

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RIP to one of my childhood treasures: Cousin Glenny.

It was on an April 1 that I received my first chemo treatment. I got a chance.

On April 1, this week, my cousin Glenny — who I wrote about two weeks ago — died of metastatic BC. She did not get her chance.

I know we talk about breast cancer awareness and how we have enough of it here in the U.S. But it isn’t the same for developing countries like where I was born, the Dominican Republic. There is still a lot of ignorance about cancer.

I have a strong family history of breast cancer. Yet my cousin, Glenny, still did not check the lump she noticed years ago. She did not get checked until only a couple of months ago, until her symptoms appeared.

Why wait so long?

I know there are many reasons why people wait: fear, ignorance, denial, lack of health insurance, lack of resources. I get that.

Glenny had the health insurance and the access to information and resources though.

I am speaking out of selfishness and frustration when I ask, “Why wait so long?” I want my cousin here with us. I am not judging her for choosing how she lived her life. Ultimately, it is our own decision how we choose to be treated for our health. But I am judging the system, the culture, the medical teams, and in some way, I am judging us, my family and me. (Yes, I am still dealing with guilt.) I know we can’t make others take care of themselves. I am aware we can’t control what others do. And we will never know why she waited so long to see a doctor and be tested. She must have known about all the cancer diagnoses in her family these past few years. But I am still hurt we didn’t push harder. I also feel sad she didn’t ask for help. There would have been support, from people like me. She deserved a chance.

Fear is something we all experience at one point of another. I am scared at every doctor’s appt. I don’t find any pleasure when seeing my doctors; I doubt that any woman does, really. But, the thought of not checking my health scares me even more. But that’s ME, and I need to accept that not everyone feels the same way, right?

Yes, I received my first chemo infusion on an April 1. While the nurse was inserting the needle in my left arm to administer the chemo I was hoping it was all a joke. Even as I felt the first chemo travel through my veins, I wanted to keep some sense of denial, but that didn’t last for long. It was no joke.

When I received the news that my cousin had died this week, also on April 1, I wished it could have been an April Fool’s joke. But no one would joke about such things, and the news hit me without any sense of denial. Receiving the news on the same date I received my first chemo brought, once again, conflicts of guilt. I received a chance to go into remission. Glenny instead lost her chance. And those tests that she waited too long to do? We are still waiting to receive the results for some of them. This is the medical system we have in developing countries.

My heart is heavy for our family.

I have so many wonderful childhood memories of Glenny and her family. But the one memory I will cherish forever is our last conversation, the one I wrote about in March. It felt like nothing really had changed— that we were back in her backyard searching for ripe mangos. She even called me by my middle name when we last spoke, “Manoella,” she said. Something no one else has done for over 20 years.

RIP to one of my childhood treasures, my cousin Glenny.

 “The Promise” by Tracy Chapman

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

Today I honor them

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My grandparents with me.

Many years ago, when I was about eight years old, other kids my age would ask among themselves, “what would you do if you were told you only had a few days to live?” You must wonder why kids would talk about such intense topics considering we were just that, kids. But you see, we grew up in the Dominican Republic and were exposed to many urgent situations such as hunger, loss, poverty, death, and natural disasters, to mention just a few.

When the question about “my last wish” was asked, my answers were pretty much consistent with those of other kids. And as we got older, our priorities changed. “I would want to eat my favorite meals,” I would say at the age of 7. At the age of 11, “I want to travel all over the country with my grandma,” which to me was a big deal because I never traveled farther than the country side, which was only about 10 miles away from where I lived.

What inspired “the last wish” question was that there were usually two or three funeral processions through our neighborhood each week. The cemetery was one block away from where we lived. This created an opportunity for curiosity, imagination and fear.

When I was diagnosed with cancer at the age of 32, no one asked me what I would want to accomplish before I die. Thankfully, that was not on the list of “weird things people said to me.” Instead, I asked myself:

What would I want to accomplish in life before I die?”

Although my cancer was not a death sentence it sure put things into perspective for me. I was more aware of death than I ever was prior to my diagnosis. It made me examine my life to the extent of wanting to know more about what would make me happier moving forward, and how to create a situation for that to happen. It was time to make decisions, and make them quick, because time also felt shorter for me.

When I was diagnosed with cancer, I instantly felt the need to write my happiest memories: my childhood stories with my sweet grandmother (mama) and grandfather (papa). My grandparents took me in from the moment I was born and raised me until the age of 14. I owe them a lot but, unfortunately, I am not able to care for them today the way they did for me because they died years ago. So instead, I decided to write memoirs about my childhood as a form of my appreciation. My goal is to one day publish a book of our stories together in the D.R. I’ve already picked out a title. It will be a collection of short stories, and I’ve already written a few.

Why did I wait for tragedy to strike to accomplish a dream? I blame the “Big D” (denial) for this one.

Thanks to the Visible Ink program, which is sponsored by my hospital, MSKCC, I was given the opportunity to submit up to two stories for publication and/or staged reading. I submitted one about my cancer experience, “The Misunderstanding,” which they did not choose. In a way I was happy about that because I didn’t want cancer to get more attention than what really mattered to me.

My second story, “Respect,” which is about a beautiful memory I have with my grandparents was chosen for both the 2015 Visible Ink Annual Anthology and a staged reading. Guys, the staged readings feature actors, singers, and dancers from television, film, and the Broadway stage. Can you believe it?! I still can’t believe my story will be performed on stage. I feel extremely fortunate.

Today, at 6 PM, I will be honoring my mama and papa, Nellis Lopez Cornielle and Sigfredo Matos as a form of appreciation for all the unconditional love they gave me growing up. I hope they hear me loud and clear: THANK YOU.

I want to thank my mentor, Sherry Suib Cohen, Judith Kelman, Founder and Team Leader of the Visible Ink program, and my hospital, MSKCC, for providing all these wonderful resources after cancer.

Also, a special thanks to my sweetheart for supporting me, encouraging me and always giving me feedback. Thank you, too, to all the other writers who participate in the Visible Ink program — you all inspire me in so many ways.

I prayed for this wish to come true so thank YOU, too.

Wondering about those kids now, my childhood friends, I hope there isn’t a reason such as cancer for them to be having their favorite meals, or traveling around the country, or to make their “last wish” happen.

Posted in Family, My Wishes | Tagged | 4 Comments

What ever happened to that girl?

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Rebequeneida

My honey always tells me, “be careful posting about your dreams. Not everyone believes that they actually mean anything.” But what does he know?

As a matter of fact, I am picturing him right now shaking his head because of what I am about to share with you all.

I recently had a couple of dreams that I haven’t been able to shake. The reason I am sharing them with you is because they impacted me enough to make me reflect. I also think that everyone might relate to this in some way.

In both dreams, I saw myself at 6 years old and as my adult self interacted with my younger self.

To make this easier to follow, let’s call the little me Rebequeneida (what I was called as a child) and I’ll refer to my adult self as “me” or “I”.

Dream 1-

Rebequeneida is sitting on a bench looking down with her hands resting at her sides. I see her from a distance and approach her.

“¿Cómo estás? I ask.

Rebequeneida doesn’t respond and continues to stare at the ground. I walk around the bench, touching Rebequeneida’s shoulder delicately. The little girl continues to look at the ground without responding. I asked her, “Are you OK?”

Rebequenida says nothing.

“Why are you so shy?

“Why don’t you speak?”

Nothing from the little girl.

“You are here sitting all by yourself. There are others around you expecting you to say something but you don’t speak. Come on, get up and walk with me. Talk to me, si?”

Rebequeneida slowly lifts up her head to look at me, and smiles. I suddenly feel the urge to hug her but somehow can’t bring myself to do it. Instead, I just smile back, still confused at Rebequeneida’s behavior. Why isn’t she listening to me?

Rebequeneida stares into my eyes. The girl does not want to move from the bench, but I continue to insist.

“At least go play.” Then, in frustration,

“You are too quiet. That’s not good, you know? You need to change.”

Rebequeneida lifts her right hand and places her first finger on my chest, where the heart is, and laughs in a very playful way, then says, “You change.”

I hold Rebequeneida’s little finger gently, enjoying seeing the girl laughing and happy, so much that I don’t realize the implications of what Rebequeneida has said.

End.

Why was I insisting that Rebequeida change who she was, the way she was?

Rebequeneida seemed happy just the way she was, and saw who really needed change. Me. I must really be struggling to be taking advice from a 6 year old in my dreams. But what exactly am I struggling with?

I miss simplicity.

I remember Rebequeneida was always a free soul. She felt happy at home. Hardly ever complained. Forgot and forgave quickly. And yet, when I think of her — myself — as a little girl, I often wish that she had been someone else, someone closer to who I am today. Perhaps more aggressive and outgoing…someone who didn’t forget so quickly.

I am sure we all think about situations from our childhood where we wish we could have acted differently. In trying to coax Rebequenida to change in my dream, maybe I wanted to fix history. Maybe she would have been tougher when people judged or bullied her for being shy, or being raised by her grandparents. For being different. But we can’t change history; we can only fix the present — and only to some degree. Is this what Rebequeneida meant when she said “you change?”

I could never become who I was. I am not sure I would really want to. Life circumstances changed me, especially those I had no control over, such as my cancer diagnosis. How can we stay the same when our circumstances have completely changed without our consent?

Dream 2-

I am on an escalator, going up. I see a bright light reflected at the top and turn to the person behind me. “I bet my grandmother, Nelly, will be waiting for me right up there,” I say. “Watch. She’ll be there.” (My grandmother is deceased.)

When I get to the top, I see my grandmother approaching me. Rebequeneida is there, too, approaching at my grandmother’s side. The three of us stop and look at each other. I speak first.

“Mama, hug Rebequeneida,” I say to my grandmother.

“No, mama,” says Rebequenida. “You hug her first,” pointing to me.

Grandma Nelly looks at both of us not knowing what to do.

“Mama, please go hug Rebequeneida, she needs you,” I say.

“No mama, she needs you more,” Rebequeneida says, looking at me and smiling.

Finally, Nelly makes a decision. She hugs grown-up me first. I look over Nelly’s shoulder and see Rebequeneida, watching and smiling.

End.

The second dream is a good reflection of how I’ve been feeling the past few years.

I have been dealing with grief over my grandmother’s death since 1998. As I get older, I miss her more and more. This was a huge loss for me because I’ve never had a relationship like the one I had with her. We were very close because she raised me until I was 14.

It looks to me as if my younger self is trying to look out for me as an adult. Rebequeneida doesn’t only think I need to change, but she thinks I need support as well. Of course it was probably easier for her to deal with circumstances because she was protected at home. I feel I no longer have that protection or at least the kind I felt with my grandmother.

Rebequeneida will always have her grandmother. I, as an adult, never will.

In both dreams I tried protecting my younger self, but as it turned out from both dreams, I am the one who may need protection and coaching. I would love to see Rebequeneida again to have her go into more details. I want to know what it is I need to learn from my self.

———————

“When we are no longer able to change a situation, we are challenged to change ourselves.”— Viktor E. Frankl

Posted in Awareness, Coping after cancer, Reflections | Tagged , | 9 Comments

Conflicts of guilt

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In Peñon, Barahona, Glenny’s yard from childhood. I had access to: papaya, mango, melicoccus bijugatus (loved these!), cherries, oranges, among other fruit trees.

I have been crying lately. In addition to all the sad news I’ve been getting, I am also dealing with survivorship guilt.

Yesterday, I learned yet another family member has been diagnosed with breast cancer, and that the cancer might have progressed because she waited too long to have it checked. This is my mother’s cousin, Glenny — daughter of my grandmother’s brother.

My grandparents raised me and my grandmother’s side of the family was very close to us. I have so many wonderful memories of them, Glenny, her sisters, brothers, and her dad Toño (my grandmother’s brother, my uncle). My grandmother and I used to visit them often because they lived only a few miles away from us. They worked our family farm. They also had fruit trees I did not have in my yard so I was always excited when we visited. Having been raised in the Dominican Republic, little things made me happy.

I left the DR to come live in NY with my biological mother. Last time I saw Glenny I was 12. Our lives changed, and I only kept in contact with my aunts, uncles and their immediate families.

Since learning about Glenny’s diagnosis, I have been feeling guilty for many reasons. But before I tell you those reasons, let me inform you that I called her last night. After not speaking with her for so long, I decided to pick up the phone and let her know I am here for her. That I had gone through breast cancer as well.

When she answered the phone, at first she felt suspicious since we had not spoken since I moved to NY more than 20 years ago.

“Hello, may I speak to Glenny?” I asked.

“This is Glenny, who is this?”

“It’s Rebecca, do you remember me?”

“Ahhhh,” she replied, followed by silence.

She knew what I was calling about, and I was worried that, like me, she didn’t want people acting “weird” around her because of her diagnosis. I know how that feels, so I was careful when approaching her.

“I called to let you know that I went through breast cancer at the age of 32. I am here for you if you ever need anything. I can give you some tips for chemo — I know so many now. And by the way, chemo is not as bad as it used to be.”

I felt she was opening up to me and was actually happy to hear from me. Happy to know someone else from her family had survived cancer – in addition to her dad, my uncle. Happy to know she might have a chance too.

“Oh yea, I know chemo is not as bad,” she said. “My doctor told me. He says I will need chemo before surgery. I can’t eat, you know? My stomach feels hard. My liver is enlarged.”

I took a deep breath, as I personally haven’t dealt with stage 4. So although I knew I could offer some level of comfort, I did not know exactly how to approach her about her cancer stage.

“I am sorry you can’t eat, when are you starting chemo?”

“I don’t know yet, they have me doing scans first,” she said.

I remembered some positive stories and shared them with her. I told her about Ann Silberman, who is now in remission (blogger: Breast Cancer? But Doctor….I hate pink!). I then talked about my friend’s mother who was also stage 4 and only had 10% chance of survival rate and who has been in remission for about 7 years now. I shared other stories too.

I sensed a sign of relief.

“Oh, yea? They survived?” she said to me.

“That’s right,” I replied.

She unexpectedly changed the subject and said, “You are Rebecca Manoella, right?”

That is the part that made me cry.

The fact that after all these years she remembered my middle name, which as you can see, is unusual. Not everyone knows my middle name but she did, and she remembered it too.

“Yes, that’s me!! You remembered my middle name.”

“Yes. I remember you and your grandma Nelly. I used to come by to see you all the time. You don’t come here often, Rebecca.”

Those words hit me harder.

I had visited her family in 2013 but I didn’t see her. She had moved to the capital, Santo Domingo, with her husband and children.

She welcomed me to visit her any time.

More relaxed now, we spoke for a while, about her cancer, what the plans were, how she felt. All I wanted to do was crawl through the phone to hold her hands and say, I am sorry. For so many things:

I am sorry you are facing cancer.

I am sorry I left when I was 12 and never contacted you again. You were my family. You were my world. And I left. To come here. Everything changed and it was hard for me.

I am sorry that, where you are, there are limited resources and limited cancer treatments.

I am sorry you are not at MSKCC, like me. A good hospital. It hits me every time one of you is diagnosed with cancer. I cry.

I am sorry I am not there right now.

I am sorry you were not educated enough about breast cancer, enough to know you had to check that lump back in 2013, when you first felt it.

I am sorry you are now at stage 4 because of it.

I am sorry you have fears.

I am sorry you have no control of the outcome. Neither does your doctor. Neither do I.

I also feel guilty.

I feel guilty that most of my family members don’t have access to one of the best cancer hospitals in the world. I feel guilty about their limited resources. I feel guilty I survived my cancer and others in my family did not.

How does one cope with survivorship guilt?

So I went from feeling terribly sad about Lisa B. Adams death, to getting good news at Genetics on Tuesday, to now dealing with a stage 4 breast cancer diagnosis in my family. Welcome to the rollercoaster that is cancer.

Please keep Glenny in your prayers for me.

I also ask from you that you pick up the phone and call someone you haven’t spoken to in a while from your family. They’ll be happy to hear from you.

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