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Journal entry by Kristen Carter

Hi all,

Just got back from our mile-long-round-trip walk to the mailbox — that’s a sign of how well I’m feeling. It’s my chemo-free week and if I didn’t know I had cancer I’d never guess. 

My CT scan is Tuesday and I’ll let you know how it goes after I see my oncologist for feedback on Friday.

In the meantime, life is carrying on. Charles was able to go on a five-day business trip without anyone worrying; Sarah was here with me and there were no concerns that something might go wrong or that I was too ill to be left for a while. As you might imagine, this feels awesome to all of us. 

So one thing I’ve been exploring, being in a state where marijuana has been legal for six years, is to what extent CBD and THC might be helpful in alleviating the side effects of chemo. (There are theories that CBD even kills tumor cells but the FDA hasn’t rubber-stamped that yet.) 

My first foray included just CBD. For the unfamiliar, that is the part of marijuana (or plain hemp) that does not make you high. It comes in varying strengths, either in an oil-based tincture or as capsules. This helped with the nausea somewhat but when I was feeling yucky, the combination of the marijuana taste and the oily feeling in my mouth grossed me out. I tried flavored CBD but that was even worse. 🤢

So when a friend of mine, whose boyfriend (a physician and medical professor) endorses a brand of CBD/THC products called Verra, offered me a free sample, I said, “Sure!” You spray this stuff under your tongue and it tastes like peppermint, so yum. The amount of THC in one spray is only 1.25 mg and the recommended dose is two sprays. It has a slightly mellowing effect (nice for the night before chemo, when my anxiety starts rising), reduces nausea AND makes me a little bit more hungry — not the munchies, exactly, but it does help me get more calories in when I’m feeling green.

But the other day I ran out of that stuff (it’s a pretty small container) and happened to be in Nederland, Colorado, where all the hippies lived/still live and you could get pot any day of the past few decades. There are now four ‘dispensaries’ in this tiny town and I stopped into the Silver Stem to see if they had something similar to my spray. Unfortunately they did not, but they had a couple of other things I thought I’d try. One is another oil-based tincture flavored with cinnamon oil, which I might like, and the other is an “edible” — a sort of semi-hard lozenge with 10 mg of THC, which didn’t sound like much. BUT, OMG, did it make me feel stoned!

I was watching an episode of Queer Eye (❤️) with Sarah when I realized I was starting to get a buzz. At first it was just a more mellow feeling, but within an hour or so everything I did felt like it was happening in slow motion under water. I had to put new pillow cases on the bed and it felt like it took half an hour! The two minutes it took my electric toothbrush to shut off felt like AGES. I had a thought about something that worried me for a second and when I tried to understand what was so worrying about it I couldn’t even remember what it was. That cracked me up. 😆 I tried describing this whole thing to Charles but my mouth wasn’t working very well and he was exhausted so I gave up. Then I settled in to fall asleep, which was hard because I had the munchies. I finally drifted off.

This might sound fun to you, but I actually don’t like feeling high! Especially, I realized, now that life feels so damn precious. I much prefer the acute awareness of what’s going on, especially when I’m spending time with the people I love. From now on I think I’ll stick with CBD or a couple of sprays of Verra when I get some more. 

Anybody want the remaining nine edibles?

xoxo K
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Journal entry by Kristen Carter

Hi there —

Happy Independence Day to my American friends and family, and happy Wednesday to the rest of y’all.

Last week’s chemo was routine and my side effects have actually been better than they were the time before, and the time before that. I think what’s made the difference is being healthier; being jaundiced makes you feel cruddy and now that I don’t have all that bilirubin in my system I feel less tired and nauseous.

Friday I have chemo again but only the drug that doesn’t have wicked side effects, and then the following week I’m having a CT scan to see how well these drugs are working. Cross your fingers! 

In other news, we’re having a beautiful summer here in the mountains... Sunday was Charles’ birthday and the kids were both here to help celebrate. We’ve also done a little landscaping around the house and it looks terrific. Please stop by whenever you’re in the area!

xoxo Kris

Journal entry by Kristen Carter

Today I start my next round of chemo — the double dose that made me feel a bit like a battered boxer last time. Knowing what’s coming makes me nervous, so I’m telling myself things like, “You got through it before, you can do it again,” Stay in the moment; right now everything is ok,” and “It’s better than the alternative!”

It’s sort of working. 😉

Journal entry by Kristen Carter

Hello, dear family and friends,

Yesterday and today I’ve had some blissfully normal days. Yesterday I drove myself somewhere for the first time since early May; Charles and Sarah have been chauffeuring me everywhere because of my weakness and light-headedness. I felt sort of like I did when I first got my driver’s license and get to go out alone. 😃 I took myself to a doctor’s appointment (non-cancer-related), got some groceries, put gas in the car and sat outside at Whole Foods for lunch. And it was freaking awesome! I felt like I blended in with everyone else — a normal person doing normal things. And for the most part I felt that way, though the memories of the past two months have made doing normal things so much more precious.

Today Sarah drove me to and joined me for lunch with some of my book-club besties. It was so wonderful to see them and, again, do something that felt so ‘normal’ — meeting friends for a meal. LOVED IT. (photo attached — from left to right that’s Colleen, Terry, Gail, Sara Jo, me, Sarah and Elaine)

The rest of my time these days is spent hanging out at our house in the mountains, doing jigsaw and crossword puzzles, eating little meals throughout the day, going for walks, reading, watching Netflix or HGTV on my iPad, and enjoying time with my family. I’ve been meaning to do a bit more exercise, even if it’s gentle yoga — anyone have a link to some good simple routines online? There are plenty of yoga studios in Boulder but it’s quite a drive...

* * Good advice below * * 

One of the specialists I’ve seen is a Naturopathic Oncologist. This is a guy (Jacob Schor) who has been studying non-chemo approaches to cancer treatment for decades, and he and his wife/co-practitioner have both survived different versions of it. His aim is to help chemo work better, to ward off side effects, and to protect healthy cells as much as possible. Here are two very interesting things he told me that apply to everyone.

The first has to do with turmeric, which you may already know is a good anti-inflammatory, and inflammation is part of most disease processes. But it’s the curcumin in turmeric that’s the real star. While most turmeric has about 2-3% bioavailable curcumin in it, there’s a patented version from Italy called Mireva that has 29 times greater absorption. If you’re taking turmeric already or are interested in trying it, you may as well use this one. Google Mireva; it’s now available on Amazon and Costco even has a proprietary version of it. The one I’m taking is by Thorne; 1000 mg twice a day.

The second interesting bit of info has to do with melatonin, night-time lighting and cancer. Several studies have shown compelling evidence that people who live in very bright cities have greater rates of breast cancer than those in rural areas. The theory is that lights at night (including/especially the blue light from phones, computers and TVs) disrupt melatonin production, which can contribute to genetic instability. SO... take a little melatonin in the evening (3-5 mg is good to start) and set your screens to warm light at night. On iPhones and iPads, this is in Settings>Display and Brightness>Night Shift. We’ve all set ours to go on at sunset and the clever little phone will figure out what time that is throughout the year. 

Here’s to all of us being as healthy as we can!
xoxo Kristen

Journal entry by Kristen Carter

To my great surprise, my gastroenterologist took out my old stents but didn’t put in new ones! He said the oncologist believes the chemo is working to rid my liver of the tumor that was blocking my bile ducts, and when he (the gastro guy) went in there the ducts looked wide open.

That’s some crazy-fast healing! Thank my lucky stars, and the chemo. 🙏💖🙏💖

Journal entry by Kristen Carter

Hi all,

Just a few things to share and wanted to keep in touch.  

First of all, in terms of side effects this week has been GREAT compared to last week. It’s the platinum drugs that whomp my *ss and thankfully I only get them every three weeks. This week there’s no chemo so next week I’ll probably feel aMAzing; anybody want to visit or meet in Boulder for lunch?

This afternoon I met with an orthopedic oncologist to see if he thought the cancer in my left hip warranted a surgically-installed brace. Thankfully the answer is no; while there’s cancer in the hollow part of my bones it hasn’t deteriorated the bone itself. Small blessings. 🙏

Tomorrow morning I’m getting new stents in my liver. The ones inserted five weeks ago have done beautifully but weren’t meant to be permanent. The brilliant doctor who did the last op will do tomorrow’s as well, and I’m not sure if he’ll do another temporary set or insert metal ones that will last longer. I trust his judgment and know he’s discussed it all with my oncologist.

In the meantime, I’ve been wrapping my head around my ‘new normal:’ living in between the moments focused on cancer. There are a lot more of those moments now and I’m honestly not 100% sure what to do with them! When I was first diagnosed in early May, I hung an “out for healing” sign on my website and told the people who get my newsletter that I was taking time off to take care of myself. Self-care + treatment + chemo recuperation is still pretty time consuming, but it isn’t the full-time job it was even a few weeks ago.

Up to now I’ve been watching a lot of HGTV and Netflix and doing NY Times crossword puzzles, but I’m starting to want to do more. I had enrolled in a three-month writing course that started the week I was diagnosed, and am going through the videos and writing assignments at my own pace. Unlike all the writing I’ve done before for clients, blog readers and the companies I’ve worked for, I feel like writing just for myself and am kind of excited about that. I feel like something’s percolating and I can’t wait to see what bubbles up.

I know some of my friends and family felt (feel?) scared about my situation and wonder how I’m able to be upbeat right now. All I can say is that I genuinely believe there’s reason for hope; that I think I’m pretty upbeat to begin with; and that, even if life were to end for me soon, I’d want to spend my last days/weeks/months being happy. No matter what, there’s so much to be grateful for.

To leave you with a laugh, here’s a photo of me today in my hospital bloomers and gown, off to get x-rays. I thought those blue shorts were so hilarious I brought ‘em home with me!

Oh, one more thing: Father’s Day, with three generations at our house, was beautiful and meaningful this year AND we laughed our butts off playing Cards Against Humanity. It was a risk playing it with all those ages and was ridiculously embarrassing at some points, but it was hysterical; I’ve never seen my dad laugh so hard. Priceless. 😊😊😊😊😊

We are so blessed, and I hope that the families torn apart at our southern borders are brought together as soon as humanly possible. No one should do that to children or their parents. 

Journal entry by Kristen Carter

Before each round of chemo, I get blood drawn (“labs”) so the docs can see how well I’m doing on a number of fronts: white and red blood cell counts, platelets, a bunch of stuff I don’t quite understand and, because of my particular situation, three liver function markers.

Thanks to my stents, the chemo and some combination of magic/grace/love/prayers/luck, today all three of my liver function markers were NORMAL. 

> Bilirubin, down from a high of 16.8 to 1.3 (normal = 0 to 1.5)

> AST/SGOT — an enzyme your liver makes that shows up in higher quantities in your blood if the liver is damaged — down from 102 to 26 (normal = 14 to 44)

> ALT/SGPT — a different enzyme as above — down from 145 to 49 (normal = 9 to 52)

There was a big “BooYah” and high fives in the nurse’s office!! 

Chemo went off without a hitch and so far I can’t feel it; side effects will kick in tomorrow when the steroid wears off. 

In the meantime, we’ve just gotten a few hundred drops of rain on our speck of parched Boulder County and there’s more in the forecast. It smells amazing, the wildflowers will love it and it will help protect against fires. Whew and hurray all around.

xoxo K

Journal entry by Kristen Carter

Hi all,

I’m grateful never to have been hit in the head or the gut in the ring, but imagine that afterwards I’d just want to go to my corner and have someone take care of me and say really encouraging things. “You’ve got this!” “Get back in there!” I’d probably be dazed and dizzy and my stomach might hurt.

That’s kind of what the past few days have been like.

Actually, Friday and Saturday (chemo day and the day after) were okay! It’s the steroid they give you with chemo. I even went out for lunch and did grocery shopping. Then Sunday though Tuesday I plopped in my corner — the living room sofa — and let Charles and Sarah take care of me and say really encouraging things. 

So many of you have been encouraging and I’m so grateful — I’ve loved all your notes and texts and cards. Thank you.

Today I got out for some errands and had to sit down a few times but am feeling much better. I’m glad they only give the carboplatin once every three weeks!

I can already tell something is happening; in other words, that the chemo seems to be working. One of the last symptoms to appear before I went into the hospital was numbness on the left side of my mouth and tongue; this was from a tumor pressing on my ‘12 nerve.’ It was difficult to eat or to talk clearly and Rs were really tricky (saying Kristen Carter was challenging!). Well, over the past week or so these symptoms have been easing significantly and I can eat and talk much more easily. Some of the pain I was having has diminished too. This isn’t a guarantee of anything in the future, but I’m a lot more comfortable and figure I may as well think of it as a good sign.

This Friday I’ll have just the gemcitobine without the carboplatin, and the chemo nurse says it has about the same level of side effects as Tylenol. I don’t know if she’s ever had it, and I’ll let you know whether she was right or not. 

:) Lots of love for now,
Kristen 

Journal entry by Kristen Carter

I was diagnosed on May 4, 2018 with metastatic cancer that showed up in scans on my breast, liver and bones. And I thought all I had was hepatitis! (I had turned quite yellow.)

The docs believe the cancer started in my breast but we’re still awaiting final biopsy results two weeks later — I had the biopsy a week ago and don’t know what the holdup is. 

Five days ago, on May 11, I had a procedure to insert a stent from my liver into my main bile duct (which is blocked by a tumor), to try and reduce my jaundice. The oncologist tells me he can’t do chemo if the lever of bilirubin in my blood — which is what’s making me yellow — is above six; three days ago it was 13. 

This morning, May 16, I had an “eyes-to-thighs” PET scan, which will light up all the cancer and show us what we’re dealing with. 

You’re all caught up. It’s early days, we’re still coming to grips with it all. Despite the ginormity of it, we’re trying to stay hopeful, loving each other with all our hearts and looking for the good. 
Kristen’s Story
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