That Was Hard To Say Out Loud

It’s time to break the silence, mine and yours.

Earlier this month, I was diagnosed with cancer.

[insert long silence]

As the receiver of that news, you’re probably just as stunned as I was when my doc first mentioned the “C” word to me. I know the cat has got your tongue, so you don’t have to say anything. In fact don’t say anything because you risk saying something insensitive that will make yourself look like an ass but please listen…

Many women who get pregnant, get a baby at the end…. I got cancer.

I’ve been diagnosed with Gestational Trophoblastic Disease (GTD), a type of cancer caused by pregnancy. When a woman gets pregnant, she either expects to have a baby or have a miscarriage (yet another thing people don’t want to talk about), but I am the unlucky lucky one to get cancer instead. There are many risks that a woman takes when she decides to get pregnant but never did I think getting cancer was one of them.

As hesitant as I am to write and share my story, I realized that sitting quietly, smiling and pretending that everything is ok when asked “how are you?” or when having conversations with people who have been untouched by the gravity of such things makes me feel more ill. I am not sharing to elicit sympathy or apologies… I am sharing because I want to share with you, folks on the other side how to respond kindly when someone shares news that is heavier than gravity. I want to bring light to this rare disease that no one knows about. I want others to talk about difficult things like cancer and miscarriages and break the silence so your heart can heal.

Up until now, I have chosen to be silent because I was sick of telling my story over and over again and I didn’t want to have to explain myself to such questions as “but why? You’re so healthy,” plus I didn’t want that awkward moment when the other person didn’t know what to say. Mostly I kept quiet to protect the other person and myself from stupid insensitive comments (although said with good intentions I sure).

A little about GTD

A cancer cell is a cell in the body that begins to grow out of control or it can be a result of cells that didn’t die properly in it’s natural lifecycle. GTD is a rare tumor that grows inside a woman’s uterus and is formed from cells that would normally develop into the placenta during pregnancy. GTD begins in the layer of cells called the trophoblast that surrounds the embryo and eventually develops into the placenta that protects and nourishes a growing fetus/baby.

I was 8 weeks pregnant before I had a miscarriage on New Year’s Eve. It was not any old miscarriage, it was due to what is known as a molar pregnancy, which is a type of GTD. In my case, I had a complete molar also known as hydatidiform mole which resulted in having a minor surgical procedure called Dilation and Curettage (D&C) to remove all the tumorous cells from the uterus. This is my first time ever speaking about my miscarriages. Yes, I’ve had more than one. In fact I’ve had a previous molar pregnancy before that was a partial mole. So you can say I have a history of GTD. How does GTD occur? In a complete molar pregnancy, the complete hydatidiform mole develops when an empty egg (an egg with no nucleus or DNA from the mother) gets fertilized by either 1 or 2 sperm cells. In a partial mole, 2 sperm cells fertilize a normal egg.

The cause of why these things occur is unknown but there were times when I couldn’t help myself and allowed my mind to think about things like “why me, I’m the healthiest person I know, GTD doesn’t run in my family and neither does cancer, etc…” and the inevitable, what did I do to piss karma off? What did I do to deserve this? And I think…. I’ve done some bad things in my life but was it so bad to warrant cancer? And I think… haven’t I already endured enough pain with all the other unlucky and painful things that was dealt to me before? So I sit here and wonder.. maybe this evens things out with karma. And I say, “OK… I can handle this… you took my unborn child, but you’re not gonna take me….”

The first time I said the words, “I had a miscarriage and now I have cancer,” not only sent chills down my spine for it was finally real, but it was also very relieving. Sure it was difficult to say out loud but it was also equally difficult to keep it inside for there was a deep screaming happening inside of me. I realized that keeping quiet and private about it left me to slowly whither under the power and pressure of taboo things like miscarriages and cancer. It was affecting my sleep, my ability to connect and trust others, my ability to believe in anything joyous again. When I did break the silence to a circle of people, I was also not prepared to be met with such insensitive comments. Lucky for them, I knew they meant well. I knew it was equally hard for them to receive such information. I knew it was meant to be supportive. Lucky for them, I’m not a person who takes these things personally and I’m very forgiving… but it didn’t mean it didn’t make me more sad to hear those words and made me withdraw from them a little bit… at least until I felt a bit stronger inside to endure those comments.

Random thoughts on what to say and what not to say.

When someone shares with you they had a miscarriage, don’t blurt out “at least you already have two healthy kids.” Other insensitive comments along those lines are: “at least you’re still young and you can try again… at least it was in the first trimester… good thing it passed quickly…

And when someone shares with you an even more devastating circumstance such as cancer or news about death, don’t be quick to speak any words that start with “at least…” such as in “at least it’s stage 1, at least your type is curable, if one were to get cancer, this would be the best type to get, at least you still have your mom (if their dad died)…” etc.

A crisis is a crisis… to the person experiencing it.

It may not be for you because you can see the bright side but a crisis is devastating to the person experiencing it.  Sure, looking on the bright side helps us cultivate gratitude and inspire a positive attitude BUT now is not the right time. When someone shares a difficult situation or crisis with you, know that it was already difficult for them to choose to even share the info with you in the first place. They chose to share it with you because they trusted you to support them so don’t f*ck it up and say something stupid because you’re uncomfortable hearing the news. It’s ok to not say anything. In this case a moment of silence is better than some awkward comments. It’s ok to say “Thanks for sharing that with me… I really don’t know what to say but I’m here to listen. How are you feeling?” Then shut your mouth, open your ears and be slow to speak and RESIST THE URGE, BITE YOUR TONGUE until it bleeds so you don’t resort to using any type of Hallmark apology, “I’m so sorry to hear you’re going thru this and wish you blah blah blah.” You don’t have to apologize cause it’s not your fault and please don’t feel sorry for us.

There’s no need to fix, offer advice, or remind them of the bright side.

When someone is facing a tough time, they don’t need you to fix them, or provide pat answers,  offer empty cliches or remind them of the bright side. Doing so shows your lack of empathy, presence, connection and friendship. Rather, give your friend your complete presence, show them you are with them and for them simply by being, by listening and offering your genuine love and support… and I’m willing to bet that if you behave like this instead of like an unintentional jerk, there will be some laughter and lightness that will naturally occur following such grave news.

If you want to be a better friend, take a look at this video on empathy: http://omeleto.com/218551/

As for me… I’ve read this post over and over again before deciding to publish it because it’s not characteristic of my writing but decided to let it be because it’s characteristic of what’s storming in my mind and my heart… a flurry of thoughts, nothing of any order, both positive and negative, grave and light as well as cynical yet optimistic and honest. None of it makes sense but it surely brings a whole new meaning to “an emotional roller coaster,” a ride that has forced me to look upon myself, my living, and my life with a harsh and urgent clarity than I have ever done before. It has shaken me, some days still has left me still shaken but definitely much stronger. Maybe I’ll share more in subsequent posts and maybe they’ll make more sense and maybe they’ll be more organized. But until then, it is literally day by day, one test at a time, one doctor visit at a time.

I believe in positive thoughts and prayers so please send me an abundant of yours as I pray, “Dear Divine, only you know how much I’ve endured in my life so far and yet here I am to face yet another battle. Please give me strength to do what I must. Be my strength, be my eyes, and be my ears so I can find the light once again, so I can continue to be a vessel of love.”

15 thoughts on “That Was Hard To Say Out Loud

  1. Anna Jorgenson says:

    Nikki, I’m with you friend and here to celebrate every drop in numbers, your bravery, your successes. Thank you for opening your heart through this trial. I have not been able to express a lot of my own feelings and fears while going through my CMP so I really appreciate your giftedness in your writing, communicating, and expressing your feelings – I can relate and it touches my heart. Praying with you until betaHCG zero, and friends beyond that ❤️

  2. Sarah Tricomi says:

    This is heartbreaking to read, thank you for opening up and expessing your feelings and thoughts. I will be thinking about you Nikki. You are so strong and courageous. Sending love your way.

  3. Poornima Seshadri says:

    Nikki, just read this and I want to send all the positive thoughts and prayers for you. Please take care. Poornima(Anirudh’s mom)

  4. Gayatri Gopalan says:

    Dear Nikki,
    Very selfkess of you to open up! Eagerly following your blog for any good discoveries you make along the way for side effects. My son is undergoing aggressive steroid treatment for epilepsy and weight gain, grumpy mood, digestive issues are all part of the parcel. Please do share anything that works to combat fatigue or any of the above side effects. We are all rooting for you!

  5. Vikki says:

    Dear Nikki,
    Thank you for sharing this and I want you to know you are in my prayer. I will be here and send loves and hugs to you. I had also been to a major surgery last year and I understand the feelings of not trusting self/others and don’t believe I can be happy again…I want to say you are not alone and your article sure inspires many people as well. I will try my best to be strong again and I am sure we will both do!

    • Thanks for sharing Vikki. It’s not a walk in the park, definitely an inconvenience but nothing that I can’t conquer. I hope you are surrounded by people who love you and have a support network. I’m here as well.

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