Friday, July 24, 2015

Why I Won't Be Toasting My Clean Scan This Time Around

I don't even know where to begin, except we have received exceptionally great news this month (my scan was clean, marking twenty months of no evidence of disease), but the occasion was bittersweet, because on July 10th Chris's mom passed away due to complications from advanced Parkinson's Disease. Damn that disease. And this one, too (cancer is not off the hook, no), but mostly that one right now.

Maryann was a beautiful woman, and bitingly funny even toward the end.


The last time I saw her, just before Father's Day, I asked her how she was feeling. She said, "You want the vacation answer or the real one?"

"The real one," I said.

"Like shit," she responded. Those of you who knew her will chuckle a bit at this. She still had so much fight and spunk and spirit, even as her body was failing her. I won't go into details, but the enormity of her spirit was evident in her last few weeks, as she held on for longer than hospice said was possible. In the end, she passed away at home with both her boys and her two favorite nurses there with her.

I loved her deeply, and worried so much about her these last couple of years as her symptoms progressed and her condition seemed to worsen. I tried to cajole her into eating green muffins (made with spinach) along with Quinn, but she couldn't get past the color. Nutrition was easily her least favorite topic as her appetite declined. But she'd smile widely when I would give in and take her to the Dairy Queen drive-thru for "lunch": always a peanut buster parfait. At least there were calories, I reasoned.

I always tried to reassure Maryann (and myself) that the two of us would get through our illnesses together to watch Quinn grow up. "You and me, lady," I used to tell her.

God, how I want to watch Quinn grow up.

***

Quinn told me earlier this week he's going to be an astronaut and fly to the moon, then asked me what I'm going to be when I grow up, when I'm a grandma.

"I don't know. What do you think I should be?" I asked.

"A nurse!" he proclaimed. "To help people."

I just want to be a grandma, but I don't tell him that.

***

Last year, we turned our one-car garage into a mother-in-law suite in the hopes that Maryann would start spending the cooler months here with us (where it is decidedly not cool.) Together with Chris's Aunt Kathie, Maryann and I picked out furniture, decided on bathroom tiles, and went rug shopping together. We bought a painting of a pig to decorate the sitting area.

This week Quinn announced matter-of-factly that Grandma's room is now the "overnight room for when we have other guests."

"I guess you're right, buddy." I tried not to let my voice crack.

It will be awhile before I get around to clearing her toiletries out of the medicine cabinet or taking her robe down from the hook behind the bathroom door.

***

As a family, we are navigating the end-of-life closure, eventually the going-through-and-then-selling the house she'd lived in for 35 years, a memorial service, and down the road, the spreading of her ashes with Chris's dad's (who died of pancreatic cancer six years ago) over the Pacific ocean.

I am trying again to be there for my husband through unthinkable grief. I feel like I have no idea what I'm doing.

***

I am trying to not worry too much when my oncologist tells me: "Your scan was clean, so no cancer, which is great, but..."

... But what?

"Your liver enzymes are a little elevated. We need to take some more blood. Are you on any new medications? Antibiotics?"

No and no.

WTF.

"We had more wine than usual over the weekend?" Chris offers.

"That could be it," my doctor says.


I blush and feel like a kid caught sneaking cookies from the cookie jar because in the last four years, I hardly ever drink more than a glass or two of wine, but last week I drank more than I should have while visiting my brother because I wanted to be normal again. I wanted to forget everything we have going on for a minute. I wanted to enjoy a glorious summer night in the northwest, breathing mountain air and curled up under a blanket while visiting with some of my favorite people and not worry about saying no when my glass got refilled more than once.

My older brother and I celebrating another clean scan in January 2013.

I'm trying not to worry too much. My oncologist doesn't seem concerned and he is one of the most cautious physicians I've ever known.

But when you google "elevated liver enzymes" and one of the first results is "metastatic cancer," it's hard not to freak out. Especially given my history. So now I wait, and will try to quell my nerves with yoga and deep breaths and probably a Xanax at night. The plan is to retest next week and see where things stand.

***

I also have, I think, a tendency to panic when I should be grieving. My brain gets emotionally confused -- or something -- and with Maryann's passing I can't help but feel vulnerable myself. I feel it every time a friend goes into hospice. As another blogger and friend put it, "Every time one of my online friends dies and I'm still here, I go through this combination of guilt that I'm here and fear that I'm next."

Is this an actual documented phenomenon? If anyone with a psych degree can explain my extra worries to me, I will pay you (in wine if you want. It looks like we won't be needing so much of ours).

***

I'll keep you guys posted on my liver enzymes. And if I'm posting a little less here lately, this is why, in a nutshell: we have entirely too much shit going on. Please bear with me for a little bit.

In the meantime, there will definitely not be any champagne toasts to celebrate my clean scan this time around. It looks like a peanut buster parfait is in order instead.

17 comments:

  1. Sending "good vibes" your way...you two have a lot going on. Love, Karen

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    1. Thank you. I'm hoping things will slow down a bit this fall!

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  2. Jen, I am very sorry you and your family are going through so much at the moment. Please accept my condolences about Maryann, who by the way, was a beautiful lady.

    Try not to worry too much about the liver enzymes (I know easier said than done) as so many different things can cause that. Hold on to the scan news.

    I am sending you positive thoughts and prayers.

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    1. Thanks for your sweet note. My liver enzymes are back to normal, which I think I forgot to mention in my latest post. XO

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  3. Hi Jenn, What a beautiful picture of Maryann. She sounds like she was a wonderful person as well.
    Your liver enzymes may be elevated because of TDM-1. I am dealing with low platelets because of this drug. If your doctor decides this is the cause, your dose could be lowered in an effort to help your liver recover.
    I think I know what you mean about wanting to feel normal. There is a bottle of wine in my fridge just waiting for the right moment to be opened.

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    1. Thanks for the info, Lisa! My platelets have always been fine, but I'll mention this to my team next time I'm in. I hope you get your moment with that bottle of wine soon. Life is short, right (but hopefully not too short). Lots of love to you.

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  4. Hi Jenn,
    I am very sorry about your mother-in-law; this is a huge loss for your family. What a beautiful photo and lovely tribute. It's certainly no wonder your brain is a bit confused. You are dealing with so much right now. Be kind to yourself and try not to worry too much. Who am I kidding, right? Keep us posted when you can. We'll be here.

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    1. Thanks, Nancy. Liver enzymes are back to normal, so I'm breathing a bit easier these days. Still trying to figure out how to support Chris without being too pushy or insistent that he talk about his feelings ;) XO

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  5. I am so sorry for your and your family's loss. A toast to a great lady: Get a milkshake with chocolate, caramel, and sea salt and I will drink your share of the booze.

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    1. Thanks for being willing to step up on my behalf, Tim! ;) I'm still waiting for you & the guys to come visit, you know.

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  6. Hugs from a stranger across the internet! You mother-in-law had a wonderful spirit.

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  7. I am just seeing this now - I'm so sorry Jen! I remember you all putting a lot of effort into her guest suite - it was being finished up when we were visiting. It's a shock that she passed away - I didn't realize she was so sick. You have a lot on your plate, but you handle it all with grace and strength. Amazing. Sending love. - Emily Popp

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