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Journal entry by Kristen Carter

Hi all,

As of yesterday I am through round four of chemo and doing fine. The routine has become routine, if you know what I mean.

My bruises from my fall into the rocks are just about healed and I can use my right hand again, hurray. Honestly, that was not fun.

This is the weekend of my 40th high school reunion (!), but between chemo yesterday afternoon and going to visit Max in Fort Collins tomorrow I didn’t make it to any of the events. I would have gone this evening but there are no plans; instead there was a plan to walk or ride a float in the annual Western Welcome Week parade through downtown Littleton, Colorado. I woke up about the time people were gathering to start, and it’s an hour and a half away, so so much for that. Tomorrow they’re golfing.

I’ve only made it to one reunion, our 20th, because I’ve lived out of town or out of the country for the others. I was seven months pregnant with Sarah at the 20th, so I didn’t have to worry about looking thin or anything, haha. She would have been my date this weekend as Charles is in South Africa, and that would have been fun.

Honestly, high school was kind of a mixed bag for me, and I didn’t feel a very strong pull to attend. I’ve only kept in close touch with a couple of people over the years, again because of all that moving, and I’m having breakfast with one of them on Wednesday. The other lives in Tennessee (hi, Fred) and we keep in regular touch. The other people I really loved from those days weren’t planning to attend, or I would have been there in a minute. 

I was not one of the ‘popular’ girls in school — the cheerleaders, the ones organizing dances or excelling at tennis or dating the quarterback. I sang in the choir, got good grades, hung out with my friends, drank beer on weekends, etc. For a while yesterday, back in the mindset of a high schooler, I was thinking how nice it would be to show up to the reunion and show people that I’d done well in so many ways — that I married a lovely guy, had wonderful children, had a great career, and am really happy despite being ill at the moment, that I’m even thin! (Thanks to cancer, but still!)

And then I realized that knowing this myself is enough. It doesn’t matter who else knows, especially people I wasn’t close to anyway. I think being content is such a gift.

Thanks for being one of the people I’m close to now. 

Love you. 
Kris
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Journal entry by Kristen Carter

Since my last post I’ve had a marvelous two-week break from chemo (until yesterday’s double infusion). I continue to grow stronger and have more endurance — now my standard walk is a mile, not just the length of our driveway. From the front steps to the mailbox and back is .98 miles, so a quick return trip to the garage makes it a mile. I’m so pleased at that progress and enjoy the feeling of being stronger and, ironically, healthier than I’ve been in the months since the cancer started making me feel ill and tired. Huzzah.

Unfortunately, three days into my two-week hiatus I stumbled off a step in our garden and fell downhill into some rocks and the side of our deck, banging up my arms and spraining the ring and pinkie fingers of my right hand. Fortunately nothing was broken, but it hurt like h*ll and my fingers still aren’t working properly. Thank you, Charles and Sarah, for all your help doing the normal things I haven’t been able to. (I couldn’t type, which partly explains my absence from CaringBridge.) Never a dull moment!

One of the blessings of feeling better has been connecting with buddies I haven’t seen or talked to in a while. My lovely book club friends came all the way up to our mountain house for lunch — and brought everything with them! We ate, caught up, sang, laughed and hugged. It was epically wonderful. Last night my cousin Mark and his daughter Izzy, along with my brother Paul, were here for dinner. Izzy’s exploring colleges and CU is on her list; I’d love to have her nearby if it works out. 

Sarah and I continue to love The Great British Baking Show and I even broke out my mom’s recipes and baked Apricot Bread, one of my favorites. It’s actually more like apricot cake baked in bread tins; delicious! I sent a loaf home with my dad the other day and Paul loved it too — one of those tastes from years ago that takes us right back in time. Yum.

I’m now on my energetic post-chemo steroid day, so I have lots of energy. Knowing that in the next few days I’ll feel low-energy and vaguely nauseaus, I’ve done the dishes, taken a trip to Nederland with Paul, plan to do some laundry and finally touched base with y’all. 

Lots of love, and ciao for now. Please keep in touch!

xo Kris

Journal entry by Kristen Carter

Well, friends, it’s not all fun and games here, but thank goodness for games... I’ve played several hours of solitaire and Candy Crush today and can’t imagine having done much more.

If you’ve known me for more than a minute, you can probably imagine how challenging it is for me to be couch-bound and to have very little control over how I feel and what I can do. My body feels tired and yucky, my mind is kind of mushy, I’m not accomplishing anything (other than healing, which, okay, is the main goal now, but it’s very passive), I am not fully present with those around me and I don’t feel like I’m being useful to anyone or anything.

I have a shelf full of books behind me, my journal and drawing stuff on the table to my right, and videos to watch from an online writing class, but they all seem too mentally demanding. HGTV is about all I can manage. I’ve thought about knitting but it would take too much energy.

Sigh...

It’s all very character-building, as my dear friend Mary and I have been saying to each other in tough times since we met as single working girls in Washington, D.C., decades ago. For a long time now we’ve wondered if we didn’t have enough already, but I guess not! We’ve been through careers, moves, boyfriends and husbands, houses and kids, but illness and aging are biggies that still have lessons to teach. I’m going first.

I’ve had worse side effects this round than from previous chemo days, perhaps because the bone-strengthening drug they added has similar side effects — nausea, fatigue, etc. — and/or because the drugs are beginning to add up in my body. One of them lasts six to eight weeks and I get it every three, so there will eventually be quite a lot of it in there.

So, knowing that more of this is coming, what can you recommend in the way of lazy, non-demanding pastimes? TV shows you love, apps that soothe or amuse you, fun podcasts, or anything else you suggest for days like today? 

Xoxo as always.

Journal entry by Kristen Carter

Just saw the oncologist and got my scan results and the good news is:

> No new lesions anywhere

> The tumors that were visible in May have either shrunk a bit or are stable

> There are places in my bones where new bone (calcification) is growing where there were previously tumors

Decent progress, although I’ve been feeling so good I thought the news might be even better. 

Seeing my initial PET scan again was almost shocking — there are so many bright spots where cancer lights up in my body. An internal Christmas tree. On the CT scan I got this week, those places show up as darker gray compared to the lighter tissue and bone around it — still visible but less alarming. It’s a little easier on my nerves. 

I’m now in the infusion room getting my three-weekly dose of two chemo drugs plus a new drug (Zometa) to help strengthen my bones. 

I think I said in an earlier post that this was going to be a marathon, not a sprint, and I’m starting to feel the truth of that. After the flurry at the starting line, I’m now somewhere along the route, continuing to put one foot in front of the other, doing the best I can physically and mentally. I’m determined to finish but I wonder what the rest of the route will be like and how long it will take me to finish. 

(Note from Charles: this may be more of an ultra-marathon, like the uphill Comrades or the Hardrock 100. 😶😄)

The image of us hugging at the finish line is keeping me going. 😊❤️ Thanks for cheering me along the way. 

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

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

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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