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.

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
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9 Responses to Conflicts of guilt

  1. Thanks Rebecca for the beautiful posting. Even in places that don’t work so well medically people get by on human contact–thrive on it. I wonder if having many choices and options dilutes our senses? Some songs:
    Dana Fuchs Duo performs “Gimme Shelter”

    Buffy Sainte Marie – “Winter Boy”

    AYO – Only you

    • thesmallc says:

      Scott, thank you for your words and for the songs. I liked “Winter Boy” a lot. Listening to other songs by her now. Music heals us.

      Because of all these options, I have almost forgotten how I survived living in a third country for almost 14 years of my life. I too had limited resources yet I remember feeling happier then. Perhaps because we can’t really miss what we never had and we try to make the best out of what we have.

      • Rebecca, I listen to a lot of music to settle me and after the month of no music (dog ate my headphones wire) I was getting pretty snarky. Like Buffy’s “Little Wheel Spin and Spin” when I feel powerless.
        Growing up in Berkeley in the 60s makes it difficult for me to live in right-wing Alberta. Some of the adversity I believe has made me smarter and meaner which is fine. It still sucks that my cancer treatments have involved psychological warfare with the institution but it seems in my nature poke authority in the eye, so here I am, in trouble again:-)
        Reading the accounts of the treatment others receive makes me jealous but I know the seed for survival is growing inside each of us and we survive on our strength first and the kindness of others second. It has to be that way or we’d never make it. I appreciate kindness that comes my way like my new oncologist shifting my infusion day to Thursday when the impatient nurse and the nasty doctor are off-shift. It’s made a big difference to me.
        Don’t feel guilty–lots of other people can take care of that for you.

      • thesmallc says:

        Sweet animals, the best therapy, even when they destroy your entire home. I have a cat and a guinea pig, which by the way, just turned 8 years old last January. (Had three piggies but two died last year.)

        Sadly, we can’t change “the system,” but like you mentioned, we do have the “seed for survival” (so poetic) and that helps us keep going. I still wish we could all share the same resources though.

        I am sorry things seem to be so difficult with your medical team. You hang in there, Scott. One day at a time is how we do it.

        I will call Glenny tonight to ask for an update. Right now I am getting ready to go to Lisa’s viewing. I have a feeling there will be many, many people.

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  3. Carrie says:

    I’m sorry to hear about Glenny. Every few years we hear about a new breast cancer diagnosis in my family and it’s just the worst. And you’re right. Breast cancer treatment around the world is not equal and it should be and that’s not fair.

  4. Pingback: April 1 | The small c

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