Survivorship: my life illustrated

Posted on August 29, 2015 by thesmallc

Can you relate to some of these?

Me waiting to hear from my Oncologist office about my test/scan results, because I refuse to call.

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Half celebrating getting good test results right before wondering how accurate they are.

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Me explaining to my Oncologist that I need to see her more than once a year.

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My reaction when people tell me I need to move on after cancer.

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Me when someone tells me I need to live life to the fullest because I survived cancer.

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My reaction when people tell me my cancer was a gift.

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When my friends ask me to hang out late.

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When I read social media threads on miracle cancer cures.

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How I feel about winter because of cancer associations.

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My state of mind 24/7 because of Tamoxifen.


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What I really wish I could be doing at my oncologist’s office.

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Posted in Coping after cancer | Tagged | 28 Comments

Missing my spontaneity

Posted on August 23, 2015 by thesmallc

but…Ever since my cancer diagnosis, I find myself having a hard time planning too far ahead. I’ve lost a sense of spontaneity and often have to check my calendar for any upcoming doctor’s appts. before making plans. That didn’t use to be an issue for me because I always thought I was a young, healthy woman. So timing didn’t matter. I am not saying I am not healthy today but once you’re a citizen of cancer-land you feel less confident. At least I do.

Also, priorities change.

Let’s talk about vacations, for example. I schedule all my doctors’ appts. before I go on vacation, because I don’t want to think about them while I am trying to enjoy myself. I even postpone making travel decisions until after my appointments.

When I originally found my breast lump, I saw my GYN right away. I had already booked a trip to go visit my family in the Dominican Republic for Christmas. Three days before my flight, the doctor told me I needed a biopsy because my lump was a solid mass. Of course there were no appointments available for me before my trip. I did not know what else I could have done. I went on my vacation trying to believe that what they had found was a fibroadenoma — my GYN suspected that’s what it was.

But something didn’t feel right. I knew it was something more serious. What prompted me to feel this way was the look on the sonogram technician’s face. She did not say a word to me about what she thought the breast lump could be, since technicians aren’t supposed to give patients a diagnosis. But the look on her face gave it away — it wasn’t a look of fear but a look of “this has to be cancer.” She looked like she was very familiar with cases like mine. And those clicks! She didn’t stop taking pictures of the lump. And after all the weird dreams I was having prior to me finding my lump — yes, I take dreams seriously — I just felt something was about to change about my life. I knew I had cancer.

I had a terrible time while I was away. I didn’t sleep. I had the ocean a few steps away from me and didn’t even go in. The resort was so beautiful and peaceful but that didn’t matter. I had no peace of mind. I couldn’t even smile because I was worried about the biopsy. And of course, I spent countless hours in my room reaching out to Dr. Google about breast biopsies. It was awful. I felt a sense of desperation — a loss of control.

I refuse to experience that feeling ever again while on vacation. So now my travels depend on when those doctor’s appointments are. I also make sure I get the results before going anywhere.

My daydreams about relocating have also been affected by my lack of spontaneity. The thought of experiencing life someplace else, like living on a farm, has always turned me on. Now, because my doctors are here, I find it hard to envision myself ever living outside of NYC and I can’t stand it. I fear losing my medical team at MSKCC. I am aware there are good doctors everywhere, but I am still feeling like a baby bird who doesn’t want to leave her nest — reason why I continue to see my Onco 2x a year despite her telling me this is not necessary.

Another thing that has been affected by my lack of spontaneity is when and how late I stay out. I used to spend late night hours with friends. I hardly ever felt tired. But I don’t do that anymore. By 10PM I am sleepy. Now my joints are starting to hurt from Tamoxifen too. Some friends call me “old lady” but I know they mean well. Cancer treatments can make you feel older.

One of the expectations people have of cancer patients is that, once you’ve done cancer, you have to live life to the fullest; otherwise you’re doing survivorship the wrong way. I find myself attacking these expectations because it’s the wrong perception. We are regular people and only we know how to handle our challenges the best way we can for us. I am not ashamed to admit I am not a people’s pleaser. I like to stay true to myself especially when it’s related to my health.

But here’s one thing I’ve discovered about me: I am who I am. Recently, when I was at my GYN’s office the doctor said to me, “no matter what I tell you, you will always worry. And I guess that’s OK because it’s who you are.”

To think of it, I remember my student chapter advisor repeatedly telling me during college, “poor mother of yours! You are such a big worrier!” Others have said this to me too.

I’ve realized that the way I handle my cancer has a lot to do with the kind of person that I am. I like to have control over situations — and who doesn’t? Knowing about my health before making plans has nothing to do with “giving power” to cancer, as some people say. It has to do with the fact that I am a worrier and I’ve always been. Peace of mind is extremely important to me.

In a way I wish I could plan my vacations without having to think about my oncology appts. I also wish life circumstances hadn’t drastically change the way I function but I’ve adjusted as best as I can. Although I’ve lost my sense of spontaneity, I didn’t lose my desire to continue living. And that has to count for something.

Do you have a hard time planning too far ahead ever since your cancer diagnosis?
Do you find yourself making more plans than you used to because of your cancer diagnosis?

Posted in Coping after cancer | Tagged , | 23 Comments

Caregivers need support too

Posted on July 24, 2015 by thesmallc

I sometimes wonder how intensely people worry about me when it comes to my health. Often, others don’t want to show us their real emotions during cancer – and even during post-treatments – so as not to overwhelm us. I am so caught up with my own cancer mess, finding ways to cope and moving forward, that I forget that others around me are also trying to do the same. I am referring to those who hold our hands when we walk the cancer path. We often lean on them, but who do they lean on?

I will always have so much respect for caregivers. It’s a very difficult job and, when someone commits to doing it, it’s not only a sacrifice but a big act of unconditional love. Sometimes the commitment of being a caregiver goes beyond cancer treatments. My fiancé was and continues to be my caregiver.

I often wonder if caregivers get dismissive comments about their emotions and fears, the same way we cancer patients do. My guy does. His loved ones have wondered why he – we— haven’t fully moved on from this cancer mess when treatments are now behind us. But I am not done with cancer and he continues to be my caregiver.

Unless you’ve been a caregiver, I am not sure you fully understand their level of commitment and fear, because they’re scared too. Lately, I’ve been trying to ask more about my partner’s feelings. I don’t recall us ever talking about his emotions because we’ve been focused on my well-being. What I know is that he hasn’t moved on after my cancer diagnosis because he can’t. He struggles the same way I do at times. Every oncology appointment I go to he experiences anxiety with me.

He hasn’t been himself for quite a while now but neither have I. What really prompted me to question his state of mind was something that happened in the middle of the night while we were away recently. We were trying to sleep but the room was chilly. I was too tired to move. He covered us both with the blanket. I still wasn’t moving but I was awake. I noticed he gently touched my shoulders as he leaned forward to see if I was awake. When he saw I didn’t move, he placed his fingers in front of my nose to feel my breathing. He did this for a while too, to make sure. I eventually moved so he would know I was alive.

This made me reflect about his fears and how he really feels about being with someone who has been diagnosed with cancer. Although I have my assumptions, I am not sure I fully understand the complexity of his emotions because I am too busy trying to understand my own.

I worry about his state of mind because he basically doesn’t have anyone to talk to. I am lucky that I have other patients who provide me with a lot of support and understanding. I am also not afraid to reach out but he is the type to keep things inside which can be unhealthy. Could this be a testosterone effect? I don’t know but I need him to be mentally well. I may need to help us reach some level of confidence.

Thinking about my partner’s fears, I’ve come to realize I didn’t know them all – and how intense his feelings were. He is the type to not want to burden anyone with his problems but this isn’t helping us.

I’ve also realized that I have abandoned him in some way. I have even suggested he doesn’t have to be part of this cancer mess if he chooses not to be out of my own frustrations. These words hurt him.

I feel guilty because I am not sure I am there for him as much as he is there for me. I depend on him emotionally and he is so focused on me but I haven’t been able to offer the same level of support. I sometimes hide through my blog and my writing because I guess in a way I am also scared to reach a level of normalcy and get too comfortable in a situation that isn’t promised. Ever since my cancer diagnosis, I am afraid to hold on to anything too tightly. And I am afraid of what might happen to my guy, holding on so tightly to something that may not be there forever.

My guy is afraid of losing me. Everyday. I wasn’t even noticing his deep fears. He says that even when we are home together, I go away. I am often absent from him. I hide on my computer. He is right. I do. This isn’t helpful to our relationship. After some reflection I’ve decided to try to not be afraid to live a normal life with my partner. To hold his hands the same way he held and continues to hold mine.

Do you currently have a caregiver? What things have you done to support your caregiver?

Posted in Coping after cancer, Reflections, Support | Tagged , | 35 Comments

15 Random Facts About Me

Posted on July 11, 2015 by thesmallc

Nancy Stordahl just shared her 15 random facts about herself and challenged her readers to do the same. I enjoy a good challenge so I decided to join in. Plus this should switch things up a little bit.

So here are 15 random facts about me:

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Bigwig

1. My fiancé got me an animation cel of Bigwig from the movie version of the novel, “Watership Down.” Bigwig, who was the toughest rabbit of all, is my inspiration in life. I look up at him on my wall, every time I feel like giving up.
2. I am scared of coming down escalators and steps. I imagine myself falling into the abyss.
3. I am fascinated by dreams, and treat them as if they have real meaning. I even yell at my guy for things he does in my dreams.
4. I was raised on an island…and I can’t swim.
5. I want to produce animated films based on my own fiction stories. I sometimes act them out when I am alone at home.
6.  Arrogance is my least acceptable attribute in people.
7. I want a pet rat and to name him Templeton.
8. I love cartoons and still watch Looney Tunes. My favorite cartoon character is Sylvester. My least favorite character is Tweety.
9. I met my dad for the first time when I was 26.
10. I dislike drinking cold water. I only tolerate room-temperature water.
11. I am shy, but I am not shy about confronting the inconsiderate people who smoke in the hallways of my apartment building.
12. I don’t want to live in NY anymore. I want to live on a farm, far away from the city, and have a lot of animals—especially goats.
13. I fear vomiting more than just about anything. This was the #1 thing I was afraid of during chemo. I lost 30 pounds during chemo because I hardly ate. My mother told me I was going to disappear and I told her that sounded better than throwing up.
14. GYN-related stuff creeps me out. A lot! I fear ovarian cancer the most because my mama died from it.
15. My inner child never died. I just hide her to protect her.

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Marionette

What the heck! I’ll include 3 more:

  1. I collect all kinds of dolls. I love the hand-carved marionette I found in a flea market last year.
  2. Any time I eat finger food— french-fries, chips, toast—I never eat the part that touches my fingers. I leave the french-fry crumbs, toast crumbs, etc., in a pile on the table, even at restaurants. And yes, I clean after myself.
  3. I love ambient music. I am obsessed with the video from the track “Breathturn” by Hammock. It reminds me of my childhood so much, and I use it as inspiration when I write stories about by childhood. And because of my obsession, I am playing it again, here:

Marionette asks: Please share some things about yourself in the comments. I would like to learn more about you.

 

Posted in Reflections | 33 Comments

“Culturally Disturbed”

Posted on July 2, 2015 by thesmallc

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 , | 20 Comments

In loving memory of my pet Layla

Posted on June 22, 2015 by thesmallc
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

Posted on June 17, 2015 by thesmallc

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 | 31 Comments

My sixteen chances

Posted on June 6, 2015 by thesmallc

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.

 

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