Embracing Post Scan Sadness

Today, as I waited on pins and needles for our oncology doctor to call with results, one memory kept playing over and over in my mind.

I was a week or so into treatment at the Carolina House, sitting across from my new therapist, Christy. I was working hard to choke back tears and finally muttered: “I’m so sorry, I don’t know why I am so sad.”

Christy almost laughingly, quickly replied, “I can give you many reasons as to why you are sad and why you have every right to be sad: you are in treatment, during Christmas and away from your family. You are grappling with the fact that you have a severe eating disorder that has stolen years of your life. Your sadness is beyond valid. Feel it. You need to feel it.”

That memory has always stuck with me. It was one of the first times someone flat out told me – BE SAD!

Marjorie’s scan results seem to bring up the same feelings of devastation and sadness, but I outwardly want to say, “I don’t know why I’m sad. The scans were good.” Then I replay that memory – and I embrace the hurt, sadness and utter disappointment.

I received the news today that Marjorie’s scans were the same as the last. No new growth and no regression. Just the same.

So, yes, while YAY for no new cancer growth, my heart is shattered. It is scan groundhog’s day all over again. I want it to go down, I want cancer to be GONE!

Marjorie’s cancer continually proves that life and cancer isn’t always black or white. And I stomp my feet and say, “I want black and white, damn it!” I want the doctor to call and say, “Congratulations, your daughter is cancer free!”

But she is not and yet at the same time she is – it is a weird, weird world. So here is the science of what’s going on, deciphered by me.  I am doing my best to understand it all with my marketing and television background:

Marjorie was diagnosed with Neuroblastoma 4S. Her cancer was NOT in the cortical bone or bone marrow – which was AWESOME! You could even say we got the ‘good’ kind of cancer – but if you tell me that to my face I am likely to punch you. There is no ‘good’ cancer.

Marjorie’s tumors significantly shrank following her two chemo treatments. And because of the huge regression, we were able to stop chemo and let her body fight off the cancer. The scans since our post-chemo scan have been nothing out of this world. Yes, there was a tiny regression on the last scan, but it was still there. This scan – no regression and no new growth.

Our insanely fabulous, kind and caring oncology team completely validate and understand our parental confusion, frustration and heartache. Marjorie’s specific diagnosis seems to carry a wait-and-see prescription.

The question our oncology team will begin discussing is whether we go in and biopsy the primary source – her adrenal gland. We were unable to biopsy it after the initial diagnosis. Her liver was so massive, going after the adrenal gland for a biopsy was too dangerous. Doing the liver biopsy alone was beyond complicated.

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An adrenal gland biopsy would not come into play for a year or so, but if scans continue at these no change pace, it might be an option. There are so many questions as to what is showing up in these scans: What is left there? What is going on? It could be anything from cancer cells to a benign tumor. We just don’t know.

What we DO know is that Marjorie is the happiest, most talkative and loudest baby around (I have NO idea where she gets that from). She cracks everyone up with her. And the minute you meet her you instantly fall in love. Marjorie absolutely adores her big brother and would rather play with a huge garbage truck than a doll. She wants to be in water 24/7 and counts down until bath time. Marjorie can crawl at 100mph and loves to pounce on Lilly, her english bulldog. Marjorie full of LIFE and nothing (not even cancer) can stop her.

Marjorie is so much more than her cancer diagnosis. Marjorie is a daughter, a sister, a granddaughter, a great-granddaughter, a goddaughter, a niece (and a grandniece) and a friend. Marjorie shares my heart with her brother and daddy.

All I know to do at this point is march on. We march on together in laughter and in tears. We embrace the results, as confusing as they are, and march on. We cry it out. We hug it out. We dance it out. We will survive and embrace life until the next scan. Whatever the next scan brings, we will continue to embrace life after that.

We will march on. But before we march, before we take a single step forward, we will be sad. And that’s okay. It is okay not to think happy thoughts. It is okay to sit in the shit and be angry at the fact that cancer even entered our lives.

Today has brought a lot of tears and many memories of those first days after our initial cancer diagnosis. Marjorie and I spent much of today without TV or music on – and if you know me you know that is RARE! I love my music and always have it on and blaring. Marjorie loves it too. Today, I couldn’t bare noise. I didn’t have the energy to talk on the phone and I knew that was okay. I needed to sit in the shit and muddle through the sadness.

Today, I let the sadness slowly sink in. I absorbed the hurt like a sponge and processed through it. I laid in a puddle of tears on my floor, thankful that I had the ability to accept and embrace my feelings. I know that tomorrow will be a new day, but in this moment and on this day, I am sad. So if you need me, I’ll be sitting in sadness and muddling in this scan shit…and that is okay. I won’t be sad forever and it doesn’t mean I am beyond thankful her cancer isn’t growing. It just means I am sad today. Sadness doesn’t mean weakness. It doesn’t mean giving up. It doesn’t mean negativity. It just means sad. I get to be sad – and so do you. Cheers to  sadness.

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9 thoughts on “Embracing Post Scan Sadness

  1. JD Ouellette says:

    Your words exemplify what Glennon Melton calls “brutiful.’ When you blog the cancer-free results, I will raise a glass of champagne to your mother/daughter warrior wonderfulness.

  2. Karen C. says:

    No good cancer, whatsoever . We can land people on the moon but can’t find ways to rid this earth of the evil that is cancer . I just lost my “second” mom to cancer that she, and nobody deserves . Dwelling in the sadness seems the only way to honor her . Most days I push it aside and try not to think about it , other days I’m angry and sad as hell. The only explanation I’ve come up with is only the strongest of people go through these difficult circumstances. Your Marjorie will prevail as she has so many times before and she is hardly a year old. Be sad and proud , there is nothing to be ashamed of.

    Prayers (and cheers!) to you and your family.

  3. Ashley says:

    Thank you for sharing your and beautiful Marjorie’s story. It is ok to be sad. My heart breaks that you all have this in your life but is lifted that you share and see the joy that is your daughter and your life together. Prayers for miraculous healing!

  4. Sarah Grace Brooks says:

    I cry in your frustration only because I know that frustration first hand. Cancer is a fickle disease and the answers they give you are not real answers. I hope and pray that Marjorie continues too fight and with your love she will. I have been fighting this awful disease for almost 8 years and I know that hope when they tell you you are “cancer free” but not really.

  5. Ed Tyson says:

    While Marjorie and you struggle through this, your writing, thoughts, and feelings are an inspiration to others who are in trying times and a reminder of how they got through other trials. It reminds me also of why I always tell my patients to write–the words find a way to help (as Shakespeare described) “knit the raveled sleeve of care.”

  6. Suzanne Luhr says:

    Please think about starting to write a book now and when Marjorie grows up she can see how her family and every one whose lives she has touched has been helped by all of you.

  7. Devon Horne says:

    I know to well your sadness. In March of 2015 my 14 month old son was diagnosed with stage 4 neuroblastoma. They removed the Tumor on his adrenal gland and they thought that was all but then they did a scan and it was in the leg. A small little spot. They decided to do 8 rounds of chemo. He did good with those and after they were done they did another scan It still showed up. How frustrating that was. We have now waited three more months and just got the results that it has shrunk some and it isn’t lighting up bright on the pet scan. Now we get to wait 3 more months. I feel the same way. I just want it gone.

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