Chapter 11: My friend NED.

The sun had already set, while dusk accompanied by a hazy mist made the cold beach even colder. We’d spent the day on a bus, finally arriving at our hotel in the Normandy area of France. This was the second stop on our High School Band Tour. We had checked into the hotel, unloaded our stuff, then a group of us walked the two blocks to the beach. I’d never been on such a depressing beach. I slipped my shoes off anyway, because sand calls for toes to squish it. I watched as couples paired off, walking further down the beach as I took to finding a shell to take home. After a few minutes I found a bumpy yellow and brown mollusc shell. I tried to pry the two shells apart, but having been a nail biter my whole life I couldn’t get any leverage and the shells remained firmly together. Just then Brandan approached. I held up my  closed shells. “Look what I found!”

He held his hand out and I put it in his hand. “Yep, looks like a shell.” He shrugged then started to hand it back to me.

I scoffed. “Do you think there’s something in it?”

“Maybe.” He then started trying to pry the two shells apart. Suddenly I felt my heart drop as he yelled in pain and held his finger! I screamed for fear he’d been hurt…. and he started laughing.

I had really been freaking out when he revealed he’d just pulled a fast one… and had not in fact been bitten by a mollusc. Dumb-butt.

He handed me the two shells – empty – and I looked them over before handing one back to him. “So you can remember being a jerk to me.”

 

We still have those shells. One with nail polish dried inside of it hides in my jewelry box. The other sits in a vase full of shells in our guest bathroom.

 

This memory reminds me that the man I live with is not the man other people know – to them he’s funnier, more sarcastic, witty. But I have this one memory, before he was mine, that reminds me that he has not always been mine. At home, with me, he is gentle and cautious. He has slowly pulled me away from my overly sensitive self and taught me to have a broader appreciation for humor. Sometimes I forget he was ever not mine, because I cannot imagine my life without him.

 

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This is not the end of my cancer journey.

 

In fact, it is precisely the middle.

 

I still have three treatments. Nine weeks. I’m going to get sicker, more tired. More exhaustion, more nausea. But the end is in sight, and I have a new perspective.

 

 

Today I heard words from my doctor that I could not process. I spent the hour long drive home viscously vacillating between guilty pleasure and confused tears. I should be happy. This is happy news. Unexpected, blindingly happy news.

 

 

While going through the check-in process my doctor passed me in the hall. She smiled and said “Your scan looked good.”. I had seen the scan and responded “But there’s still something on it!”. She said we would talk about it in a minute and I went to let the nurse take my blood. My red count is still nominally low – that’s why I’m so tired. But nothing troubling.

Then Brandan and I sat in a room. It was kind of a weird room. The exam room had a couch in it… I called it the party room, for those patients who bring enough support to fill a couch. But it was just me and Brandan sitting there. Thinking now I don’t even remember the doctor examining me, but I’m sure she did. Instead I remember her words. It’s almost like my brain was taking in data and spitting out “DOES NOT COMPUTE!” over and over again.

 

On that scan… that picture right there on the right… there is no cancer. My scan showed No Evidence of Disease. NED.

 

Those black spots are my healthy, functioning kidneys. Due to the Neulasta shot parts of my bone marrow lights up, like my shoulders, but that is also not cancer.

 

I still have to finish chemo. There could still be cancer in my body, but it is so small that it does not show up on the scan.

 

A quick response to chemo means I’m more likely to have a complete, long-lasting, remission.

 

We left the office and in the hall the sticky, emotions rolled over me. Confused tears. Then smiles. Then more tears.

 

//Everything that kills me makes me feel alive.//

 

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For the curious: This is what the PET scan machine looks like.

 

Think of it like two donuts. I lay on that table on the left, the first donut is a CT scanner, then there is a space, and the second donut is the PET scanner. It takes about 30 minutes to scan my whole body, and it’s done in sections, about three inches at a time. I just have to lay still, listen to the mix CD Brandan made me, and wait. There’s a fan blowing nearby to keep the air moving, and taking my own music made the time go faster, since I could count the songs, think about the lyrics, and have that distraction. Last time I didn’t have my own music and had to listen to the instrumental music that was supposed to be “relaxing” but ended up making me feel like I was listening to the background music of a sad movie where a family’s dog dies. Depressing.

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I’m thankful for medical advances. Chemotherapy, though toxic, is an amazing, incredible thing.

I’m conflicted and feel guilty that it worked so well. Blame my guilty conscious – I feel like I haven’t suffered enough.

I have to remind myself: As much as getting cancer is not something some one can “deserve”, getting rid of cancer is not something that is “deserved” either. It just happens. Both of them.

I have been crying off and on all day because I could not have hoped for this kind of result. In fact, the night before the PET scan I told Brandan “I want to hope that it’s just all gone, but I know I can’t expect that.”. Then it happened, and I… I wish I could say I feel relieved. Instead I feel broadsided.

am excited. I promise. But of course, I’m still anxious.

I’m anxious because I still have 9 more weeks of chemo. I’m still going to feel like crap. Crappier than I have yet felt. It makes me nervous. It’s hard to explain how exhausting this is, and it’s infuriating. A week ago I was banging my fists on the table in anger over how tired my body felt, and yet I couldn’t begin to try and help you understand. It is not a kind of tired I’ve ever experienced before, but it’s the kind of tired that makes you want to lay down and never wake up, because you know waking up will mean feeling this soul sucking exhaustion yet again. Unfortunately this kind of exhaustion is complicated by medication that doesn’t lend itself to sleep. So I spent a lot of time laying in bed wishing I was asleep, unable to sleep.

Needless to say, I’m not looking forward to that.

I still need help. And love, and support, and now I feel guilty for needing it. I’m so thankful for all of the help we’ve received thus far, from help with our bills to the wonderful people who’ve brought us dinner and sent care packages. Each action carries me through the long days. And there are several more months of long days ahead. I’m at the 50 yard line of the football field of giant jumping spiders.

And lastly, I’m hopeful, but this isn’t over. I can see my life again, like the sun on the horizon… my normal life. The one where I have enough energy to spend the day with Ginny and not need to take a break or ask Brandan for help. The life where we spend every day at a park or the museum. The life that doesn’t involve doctors and blood draws every week. I can see it. I can’t feel it yet. I can’t count on it, and I don’t know when it will happen, but I can see it… and it looks good. 

 

 

Celebratory pizza!

 

 

13 Comments to “Chapter 11: My friend NED.”

  1. Glad to hear the good news, and hope all of your progress reports in the upcoming weeks, months, years are positive. We’re still here for you.

  2. Jessica, these are such good news! :) I’m so happy for you and your family that you can already see the sunbeams at the horizon! :) Still praying for you and still writing down your name in the Temple – tomorrow we’ll be there again, since my son’s wife (Simon’s wife Sarah) will get her endowment! Some more news from our side: Alice will visit us with her whole familiy (3 kids) in about 3 weeks! ;D And Lucie will return to SLC in order to finish her studies at the University of Utah! Well, then she’ll be gone again… :( Valerie finishes her education/apprenticeship and then decides whether she’ll serve a mission or – - well, there is a young man somewhere in the middle of Germany… Who knows!? And Isabell’s little girl is now 8/9 weeks old already, starts smiling and loves to watch her big brother jump around… And Roland and I are getting older and our bones ache but we still move around busy as ever, just a bit more slowly ;) We love you! The Bertuleit Clan xoxoxo

  3. OMG THIS IS GREAT NEWS!!!!!! I’ll call you later

  4. Great news!

  5. Such wonderful news!! Prayers for strength as you finish out your chemo and go about your life WELL soon!

  6. This is a good start to a great life. Keep living every day of it. Much love to you.

  7. Fantastic!! I know there are struggles ahead, but you can do it. and it’s ok to lean on us for support. You’ve been there for us, now it’s our turn. I have tears of joy for you!

  8. This is the best news! Cautious congratulations on being in remission!!!

  9. I’m so happy for you and your family! ?

  10. Oh Sweetie, that’s WONDERFUL ! My tears are flowing down my face as I sit at my desk at work & I really don’t care if anyone sees me or not!! As a cancer survivor, I’m here to tell you, you will value each day much more than other people. You will see someone on their phone at the park while their children are playing & think “do you even realize what you’re missing?”. You’ll take the time to brush your darling Ginny’s hair even if it doesn’t need to be brushed, just to be close to her. And one day, you will hold your grandchild & cry when you think “is this how MY grandmother felt when she held me?” This doesn’t have to define you, but it will contribute to who you are. …and, CONGRATS! :)

  11. So so happy for you!!! Still praying for you… for the next 9 weeks to go smoothly for you and B and G!

  12. This is fantastic! Sorry you still have some energy sucking chemo ahead, but I’m glad there is reason to hope.

  13. Wow…we are just so happy for you!! Keep fighting and stay strong! You are a hero to all of us! Keep celebrating these amazing milestones in your journey…our prayers will continue for more future successes!

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