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Journal entry by Kristen Carter

Hi all,

It’s been an amazing couple of weeks. As most of us are friends on Facebook, you may have seen the posts from my trip to Illinois, New York, Connecticut and Pennsylvania, where I visited family and friends and strutted my stuff on a catwalk, of all things!

Then I came back to wonderful news about my health: my body seems to be reacting well to my new medication, meaning the potentially toxic effects aren’t bad enough to make me stop it, my tumor marker is down within a ‘normal’ range, and my liver markers are all back down in the normal range too.

In other words, it looks like I’m going to be around for a while. My doctor said that women in my situation often live for years — there are no guarantees, but there are also no immediate causes for concern.

It was six months ago that I started this CaringBridge journal, and I/we had no idea what to expect. Expecting the worst was pretty practical then, in fact. It’s been an incredible journey and I couldn’t be more grateful to be where I am today.

I’ve decided to stop posting here and to rejoin Facebook and re-engage my blog instead. My blog won’t be just for parents of unhappy teenagers any more; it’ll be for me to write about the wonders and challenges life brings, and how I’m trying to meet them with love, courage and creativity. It’s at www.kcarter.com if you’d like to check it out.

Thank you SO, SO, SO much for being with me through this wormhole. It’s meant the world to me.

I love you,
Kris xoxoxo
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Journal entry by Kristen Carter

Hi all,

Just saw my oncologist and have three good newses to share:

1.  My white counts are up again. After a stop-start routine suggested by the manufacturer of one of my oral medications, my numbers are back up to the low side of normal. For me, that’s good. :) 

2. I can continue to take that drug. It’s called Kisqali and is a new oral chemo that my oncological pharmacist called “a game changer” in breast cancer treatment.

3. I can travel today! I’ve been planning a trip and was cleared to go. If my immune system had been too depressed I wouldn’t have been able to.

So, I’m starting in Illinois for a few days with Sarah, then going on to Connecticut for a Breast Cancer Alliance fund-raising luncheon (complete with fashion show and me as one of the models, cha-cha-cha), and then to Pennsylvania to see my brother Tom and his kids and help celebrate his birthday.

I’ve had a pretty simple, safe routine since May, centered around our quiet little spot in the mountains and the cancer center. It unsettled me a bit to get ready for traveling — sorting, packing, etc. — and to imagine shlepping around the country with a suitcase; but I am amazed, grateful and excited that I even have the opportunity to do it. What a long way I’ve come since that hospital bed in which I began writing to you here on CaringBridge.

Yay. 

Please do me a favor and cross your fingers that I don’t get sneezed on by anyone incubating a virus. 🙈😁🙏

xoxo Kris

Journal entry by Kristen Carter

Hi all,

Today I had bloodwork, an EKG and a meeting with my oncologist to see how my new drugs are working. After two weeks it’s too soon to tell if they’re effective against the cancer, but it is possible to see their initial impact on my heart rhythm, liver function and immune system.

The good news is that my heart rhythm and liver function are normal. However, my neutrophil (a type of white blood cell) count was WAY down. There are two ways to deal with this: stop taking one of the drugs for a week and see if my neutrophils pop back up, or reduce the dosage. I’ll stop beginning tomorrow and have a new blood test next Thursday. Fingers crossed.

In non-cancer news, it’s been a marvelous couple of weeks. Three friends have visited from out of town, all gals I worked with in Washington, D.C., thirty years ago. We talked and laughed and caught up; it’s the kind of love and friendship that makes everything feel better.

Weather-wise, we’ve had three seasons in the past few days — from highs in the 80s to cool and breezy and then three straight days of cold and snow. It will be wonderful to get more snow than we had last year, but it does seem a little early! 

I’ve also been writing a bit more; I was enrolled in a writing class with Martha Beck and Elizabeth Gilbert that began the week I was diagnosed in May, and have been catching up with the recordings and writing assignments. I’m even contemplating starting to blog again... Regardless of what happens, it’s felt great to be creative again.

I hope the weather and life are treating you well and that you’re finding joy in every day. Despite the politics, wherever you are.

Love you,
Kris

Journal entry by Kristen Carter

Hi friends,

I haven’t started my new oral hormone/chemo regimen yet; that starts tomorrow after delays with insurance approval and needing to get a baseline EKG so we can monitor the effects of one of the drugs on my heart rhythm.

This is just a note to say thank you for the enormous love and support you’ve given me since this journey began back in May. I’ve been reflecting on the many lessons I’ve learned since then, and one of the biggest is how many wonderful people I know and how generous they are with their kindness and wisdom.

So thank you. I love you too.

xoxo Kris

Journal entry by Kristen Carter

Hormone therapy! 

The tumor board unanimously agreed that an estrogen blocker coupled with a new-ish drug (a CDK 4-6 inhibitor, for those who know) are likely to be as effective as a next-stage treatment option for me as alternative chemo treatment. Technically, I’m told the estrogen blocker is a kind of chemo, but it’s oral rather than IV. I start taking both drugs as soon as they’re delivered, which should be in the next few days.

I’m curious/concerned about the new range of side effects I can expect, but I’ve handled what I’ve been given so far, know that I’m pretty capable of dealing with whatever happens, have the support of a great oncology team as well as my amazing family and friends, and — haha — don’t have a choice in the matter, so I’m gonna take what comes. 

The chances that the new treatment will be effective are about 70%, and I plan to be one of the women who responds positively.

So, following up on my last update, I started seeing a trauma resolution and “somatic processing” therapist this week and already feel so much better. Her amazing approach is rooted in both the mind and the body and it’s a powerful way to unwind the physical impact of trauma as well as think of it in new ways. She’s someone I’ve known and worked with for a couple of years and love her; if you’re interested in learning more about her work, let me know. (❤️ To Cheyenne).

I also discovered a wonderful book called, “From Heartbreak to Wholeness,” written by the widow of the guy who wrote those “Don’t Sweat the Small Stuff” books. He died suddenly at age 45 and the book tells her story of choosing to be the hero rather than the victim of her circumstances; it’s very much in line with the kind of coaching I’ve done for other people and it’s resonating as something for me right now. I can highly recommend it if you or someone you know is dealing with a loss or shock of any kind.

I had a thought about this whole experience a while ago and shared it with my dad, who loved it, so I’ll share it with you too: Cancer might affect how I die one day, but it doesn’t have to affect how I live. It might even help me live better, knowing how fabulous life is and helping me prioritize what really matters.

❌⭕️ Kris

Journal entry by Kristen Carter

Hello friends,

Life-wise, it’s been a lovely few weeks since I wrote to you last. Having Sarah home for the summer was a huge silver lining of this whole experience and we made the absolute most of it. The past few months didn’t have to be fun, but they were in so many ways. 🙏 She left for school on Friday (she’s on trimesters so starts later than most colleges) and although it was tough to say good-bye, I‘m mostly just grateful for having had her here. 

We’ve seen quite a bit of Max lately too, as the four of us got together as much as possible while Sarah was here. Having us all in one place is one of my favorite things on the planet and I’m so thankful.

Health-wise, I’ve just finished Round 5 of chemo and some changes are coming. While the drugs I’ve been on have helped slow or reverse tumor growth, my doctor feels that other drugs might be more effective and would be safe for me now that my liver is in better shape (smaller tumors plus no bile duct blockage). The two options he’s considering are hormone therapy and a different chemo regimen; he’s presenting my case to the tumor board — a group of other oncologists — on Tuesday and I should find out their recommendations by the end of the week. 

There are advantages and disadvantages to both options. The chemo works faster but has more toxic side effects; the hormone option is less toxic but can take three months to start working. We’ll see, and I’ll keep you posted.

Spirit-emotion-psyche-wise, I’ve had a bit of what I can best describe as a combination of PTSD and an existential crisis. Getting such a hectic diagnosis out of the blue and then being so sick for a while was wild; in hindsight it feels like the medical equivalent of being plopped on an open raft just above the rapids. Loooonnnngggg rapids with a bunch of big boulders in the river. And a whirlpool or two. You get the picture.

And now that the waters are calmer, I’m kind of still holding on with white knuckles and not sure it’s safe to relax.

If I am going to be in calm waters for a while (my doctor says people live for years with this kind of cancer; some for a very long time), what do I do? To break out of the metaphor, do I go back to the same coaching and writing I was doing before? Narrow my focus even more closely to what I absolutely love? Wait a while to see what happens? Do all or some of the things I’ve always wanted to but didn’t get around to, because I thought there was no hurry? Finally learn to meditate? Do more yoga? Eat more pizza?

So that’s what’s new with me; I’m in a bit of limbo and it is kind of uncomfortable. 

Have you ever been in a position like this? What helped you?

Much love,
Kris

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

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

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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