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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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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News I hold on to

panda animated GIF I got the clear on all 25 genes, guys! I couldn’t wait to share the good news with all of you. I felt so relieved.

As of now I only have one mutated gene, ATM, which might or might not have caused my breast cancer. This ATM gene has a moderate risk for breast cancer and a low risk for pancreatic cancer. It has been suggested it could also be linked to other forms of cancer, such as leukemia. However, researchers are not sure yet.

I am aware that just because I was negative for all those other genes, it does not mean I will not develop a new cancer in the future. I still need to monitor myself. But it is less of a burden for me to find out I am not a carrier of any additional genes. I feel a sense of peace I did not have before all these genetic testing became available to me.

They did find a couple of “variants,” one of which is linked to my existing mutated gene.  The other variant is linked to a gene called “CDKN2A,” which is associated with melanoma, in this case. However I am not a carrier of this gene so I shouldn’t worry about it at the moment. I continue to see a Dermatologist once a year – very important, guys!

All this genetic information is important to me not only because I am looking for answers about my breast cancer and my family cancer history, but also because I am thinking of having a child one day, soon. If I decide this is the direction/risk I want to take – and my Oncologist, Dr. Dang, would need to agree with this decision, I will do it through in vitro fertilization. I want the option to test the embryos for genetic mutation(s) prior to insertion. Now, when will this happen? I don’t know yet. I am allowing myself one year to decide whether or not I’ll take a break from Tamoxifen. I am also trying to save money as this procedure can be very costly.

It is still scary for me to stop treatment but I also want to try to have a “normal” life while I still can. Quality of life is important to me.

Meanwhile, I take this good news and hold on to it. News like this is what helps me feel encouraged and to have hope.

Always remember to hold on to the good news. It inspires us to keep going.

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Thinking of Lisa Bonchek Adams, her family and Dr. Chau Dang

Picture from Lisa’s Blog (one of the many things I will miss from Lisa)

I have been finding it difficult to write about Lisa. I still have her link on my page as you can see — not planning to delete it as it was, and still is, a great source of information and inspiration. I cannot seem to find a way to write the words “RIP” next to it though.

Each time I learn about someone’s death due to bc, someone I knew of, it affects me. You would think I should be “prepared” for the news, right? Not me. It hits me hard every time, even when expected. I guess in a way I always carry a piece of hope for those cancer patients who struggle. I had hope for Lisa.

I had another connection to Lisa other than breast cancer. We both shared the same Oncologist, Dr. Chau Dang, at Memorial Sloan-Kettering Cancer Center. I feel for Dr. Dang as well. She must be heartbroken. Dr. Dang tries so hard to keep us strong. All of our doctors do. Although they lose patients all the time, I am sure that, like me, they carry hope as well. Otherwise, why try?

I feel sad for Lisa’s family. Please know you are all in my prayers for inner peace and to find the strength to carry on.

I will miss so much about Lisa: her writing, her poems, her honesty, her willingness to share reality with all of us, her courage, her love for life, the little pictures she always included with her posts.

This is the part I find so difficult to cope with when losing someone to breast cancer, because I feel sad and guilty at the same time. Two very strong emotions I can’t control.

Lisa: I know you were not into the “angel watching” talk. You can call me stubborn, which I admit I can be. If you are watching now, please know you were loved and admired by so many, including me. You probably know by now.

You are already missed.

RIP sweet Lisa.
————
“Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” – Lisa Bonchek Adams

Posted in Loss | 4 Comments

Genetic results are in!

excited animated GIF My hospital called to inform me that my genetic results are in! Originally, I was supposed to wait another 3 weeks. Now that they are available for me, I decided to move my appointment to this coming Tuesday instead of the end of March – why delay it any longer? I would rather get it over with now.

This is a big deal for me, guys. If you recall from my previous post, I feel I need more reasons to make drastic decisions about my life, specifically about family planning. I also want to learn more about my genetic composition due to my strong family history of cancer (no one has tested positive for the BRCA gene). I want to help my family find some answers, too.

I opted to learn about all genes that are linked to all types of cancers. Of course, I am hoping to get “the clear” on these 25 genes they tested me for.

Am I scared?

Strangely enough I don’t feel scared. I am aware there are things I have no control over, including my breast cancer. But to me knowledge is power. I would rather know the facts before committing to something serious in my life such as having a child.

There is one concern floating in my mind though. I am worried how these results would affect my relationships with my family. Cancer has opened up my eyes in so many ways but not everyone wants to experience that form of awakening. Many people feel just fine living their lives in denial – after all, denial is a form of coping with life in general. Not everyone in my family wants to know or hear the answers.

But I can only deal with one thing at a time so today my focus is on learning about these genetic results, process the news and continue to the next chapter of my life. Whatever that chapter may be, I am ready. Bring it on!

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Skydiving

skydivingYou would think that after cancer, not much would scare me anymore, right? Nah! I still have my fear of needles, strangely enough. And, my fear of heights remained the same after cancer too.

And yet — I am contemplating the idea of going skydiving. I’ve been thinking about it for a while actually but haven’t convinced myself that I can do it yet.

I really want 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!

But skydiving sounds so exciting, doesn’t it? And challenging in a good way. The idea of allowing myself to let go and simply let things be, turn me on.

First I need to check with my Cardiologist to make sure my heart murmur will not be an issue.

I have two volunteers that are willing to jump with me. We won’t be jumping off the plane attached to each other since we are all beginners but they will go…after I jump. How sneaky!

I did some research and it looks like I have some options nearby. Locally, there is a place called Skydive the Ranch with great reviews. I can also drive to New Jersey or Pennsylvania to do this. Another option would be to skydive in California (CA) when I go in May. I want to stay conservative though since I am new to this. I want to stay attached to the experienced jumper and not try something out of the ordinary. (As if skydiving wasn’t out of the ordinary enough?)

I need to make this happen for me soon, guys. I want to fly!

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Reasons I kept my cancer diagnosis semi-private

shhhI chose to keep my cancer diagnosis semi-private at the beginning because, otherwise, it would have been too much drama for me to handle all at once. I didn’t want to dramatize my cancer. This was not easy, but to the degree I could, I wanted to control who knew. Taking charge of the situation — doing things my way — helped me focus and in some way helped me feel I was in control.

I am familiar with the emotional toll it can take on a person after finding out someone they love has been diagnosed with cancer. When my grandmother was diagnosed with ovarian cancer, I did not know how to act or hide my emotions. I’m not sure anyone does.

But, I’ve realized that — when dealing with emotions such as sadness, fear, anger and melancholia — I often do better when I’m alone. And with my diagnosis, I needed to build the right environment for me to recover. I needed to create MY comfort zone.

I wanted to take charge of my environment.
If you don’t take charge of creating your own support situation, people might try to build the environment for you. They might call other people they know who have been through cancer so they can reach out to you — which you may or may not want. Some people might bring their own belief systems into the mix, which might not be compatible with yours. Others might try to get too involved and counsel you to take care of unfinished personal business “for your own good,” or even try to take care of it for you! I did not welcome these things, even while I understood why my loved ones were motivated to do these things.

Of course, in excluding some peoples’ attention, I wasn’t completely alone. I carefully chose my support group — people who I felt knew me well enough to know how to approach me. Some had already experienced cancer through their love ones so they had some familiarity about the illness and the patient’s expectations.

I felt I could be myself around my support group. I didn’t have to worry about acting strong all the time so not to worry them. And as it turned out, I handled the emotional part of this experience pretty well.

Too much of the wrong attention.
Having too much attention scared me more than the actual cancer, at times. In a way, having to tell the world about my diagnoses would have forced me to acknowledge more completely that reality. The attention was going to be a constant reminder of what I was going through. I wouldn’t be able to pretend to feel normal sometimes. Having to deal with my illness with a small group of people allowed me to hide at times. It allowed me to feel more normal.

I didn’t want to deal with the difficulty of pushing people away.
Once people knew about my diagnosis, it would have been hard for me to exclude them if they became too intrusive. Plus I wouldn’t have had the energy to do so. I did not want to completely disregard people’s good intentions, but cutting them off would have created a stressful situation for me that could have led to misunderstandings or potentially ended my relationship(s).

Denial is a form of coping.
As I mentioned above, too much attention can be a constant reminder of what I was going through. I was never in actual denial about my cancer – not even before my diagnosis due to my family history – but I believed in my heart I was going to be OK, that it wasn’t my time to die, yet. Being surrounded with only certain family members and closer friends and cancer survivors helped me to go to that one place where I felt I was safe. There were times when I forgot I was “fighting” for my life. This was a healthy situation for me.

Exposure to the wrong information.
You want to believe people’s intentions are good, that they really care about you and your well-being. And I believe most people mean well.

However, most people are uneducated when it comes to cancer. Or, they have a lot of wrong information, based on honest ignorance, fear, superstition, religion, etc. — and they will frequently want to share it with you, even with those good intentions. Being surrounded by many of them would increase the chances of hearing something that might not be productive to listen to: wrong information about your type of cancer or your treatment, confused statistics, stories about other people who died from cancer (with details), bad info about survival rates, for example.

When people hear the word cancer they automatically think it’s a death sentence. I was not a statistic and I certainly didn’t want to be preached at regarding how I should deal with my cancer, especially from someone who didn’t have any credentials.

Pity is not a helpful contribution.
I don’t know about you, but I can identify pity right away. People really do not know how to act around you. They might feel very vulnerable in the face of your situation and their actions might come across as pity, even if unintentionally.

I cannot handle pity very well. I didn’t want people to “feel sorry” for me. I needed someone to act normal with me and to allow me to be self-sufficient, which I was.

I didn’t want to be talked about.
Fact is, bad news travel fast. And some people are always going to gossip. “Hey, did you hear? Such and such has cancer.” While I wanted empathy, prayers and love, I also wanted people to believe I would be OK, not that I was going to die from my cancer. Adding to the difficulty, I also understand that some people who care about, and who I’ve trusted with confidential information, might need emotional support too, and will be inclined to reach out to other people, including people who I might not want to share the information with.

To protect others.
I am aware of how emotionally sensitive some of my friends and family members are. I wanted to protect them. I have one cousin who I told one year later. When she visited me, she cried for a long time and this was long after I was done with my treatments! Imagine how she would have acted if she saw me looking underweight and bald. But that was the right time for me to handle her reaction not while I was sick.

I was scared to face real emotions from others because it reminded me of death.
In my case, it became weird to me to see people act differently around me. People are scared they will lose you so they try to show you how they feel about you. I am not saying this is bad but I felt it was the wrong time.

I also wasn’t emotionally ready to let people face their own fears of death and letting me know about them.

You only know how you would handle cancer and come to understand why we do what we do when you face it. I didn’t expect people to understand why I kept my diagnosis semi-private. I only wanted my wishes to be respected. And to me, that’s a helpful contribution on its own.

I simply wanted to feel I had some level of control in a situation where I knew I really had no control over.

Why am I coming out of the closet about my cancer diagnosis now [on this blog]?

Because now is when I feel ready to do so.

I also want to bring awareness. I found my cancer myself and was determined to confirm if it was despite Doctors telling me “I was too young for breast cancer.” Some Doctors tend to treat your age instead of treating you.

Because now, I feel emotionally stronger.

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