I Won't Back Down

Updates and news for friends and family about my life with Stage IV cancer

Be Brave

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Yesterday was the memorial service for my friend Gwen, who was part of my MBC support group. Gwen was just 38 and left behind a husband and two daughters. There is just no way to understand or explain why she got this disease, why no treatment ever worked, why someone with so much life would lose it so quickly.

Gwen and I clicked from the beginning and I learned so much from her. But the biggest lesson was definitely about bravery. She had a tattoo on her wrist with an arrow and the words “Be Brave.” At her service yesterday, there were temporary tattoos of this for everyone. To be honest, at first I didn’t understand or agree with all of these “bravery” references all over her Facebook page. I hate the battle/war metaphor we use for cancer. There are no winners, the fight was rigged from the start.

But what Gwen was talking about was not the bravery patients show when we continue treatments that suck. It’s not the bravery of tolerating pain or discomfort. It’s not battling to win against the unbeatable. Gwen was talking about the bravery of continuing to be open and loving and happy despite the cancer. She didn’t shut herself off from family and friends. Her example encouraged them to not shut themselves off from her, either. It’s not easy to stay close to someone with terminal cancer. People want to protect themselves from the inevitable pain of loss. But Gwen inspired the people in her life to continue to show up for her. To check in with her, to laugh with her, to share even more of themselves. That was how she would “be brave.”

The program at her memorial included something she wrote on Facebook last Autumn. It’s simple but so powerful:

Reminding myself this morning that bravery doesn’t mean you are without fear. It simply means that you find courage inside to keep on keeping on in spite of that fear. Cancer sucks. #bebrave

I’m going to try harder to follow Gwen’s example. To keep showing up for my own life and the lives of my friends. To reach out more. To take every opportunity to tell people that I love them. I’ve never been a very emotional person and I have an even harder time being demonstrative. So folks, be prepared. I’m going to hug you when I see you. I’m going to say “I love you” when we part. I’m going to email you and text you and ask you about what’s happening in your life. And I’m going to expect you to tell me. Just because I have cancer doesn’t mean that your problems aren’t important. So complain to me, ask me for sympathy, expect me to support you. I want to be there for you. I want to have closer friendships in my life. I want all of us to be brave enough to risk the pain that will inevitably come when we say goodbye someday. I want to be worth that to you, and to myself.

Thank you, Gwen. I’m going to do you proud. #bebrave

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Chemotherapy Looks Like This

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Three rounds of Taxotere, Herceptin and Perjeta have knocked my cancer out. But it’s also ravaged my poor body and I feel about 100 years old. This is what I look like today, and if you can imagine I feel even worse. I’ve got a few eyebrow hairs holding on. The eyelashes are gone, which makes my constantly watering eyes even more irritated by everything in the air. I look like I’ve got 2 black eyes. My nose constantly runs and my lips are so pale. My skin looks kind of gray. Nobody offers make-up to match a gray complexion. My fingernails and toenails are lifting off. And this is my “good week,” the last few days before we do another infusion of poison on Wednesday.

Luckily, I only have to make it through three more rounds. I can’t really imagine it, but I keep telling myself that I can do it and it will be worth it– really burn those cancer cells out so I can buy myself a bit of a break. And in the end, a little more time. Though I have to admit the the time I’m getting right now isn’t of the best quality. But the cancer is on the run. Those little cells are getting their asses kicked and hopefully won’t be brave enough to grow again anytime soon. I’m trying really hard to be excited about the latest great PET scan results. But it’s difficult when I’m just so tired and I feel like crap.

At the moment, my biggest struggle is my eyesight. Besides causing watery eyes, Taxotere actually leaves the body in your tears so the skin around my eyes is constantly irritated, stinging and itching. My vision is blurred from the tears but also it seems the eye muscles themselves are tired. I can’t drive at night anymore and I can only look at the computer for short periods of time. Even if I make the text huge on my Kindle, reading is really difficult. You all know how much I love to read and I spend a few hours each day, at least, absorbed in a book. Losing that is a huge blow and I am hopeful that the problem will reverse itself when I can stop the chemo for a bit. In the meantime, it looks like I’m going to have to try some audio books. Anybody into those? Recommendations? I subscribed to some podcasts, too. It feels so passive and boring to just lay around and listen to something, but maybe I’ll be pleasantly surprised. I do try to just listen to the TV without looking at the screen too much, but it’s not very exciting.

I’m happy my treatment is working so well. I’m frustrated with the side effects. I grieve for my other Stage IV friends that aren’t doing as well right now. And the ones we’ve lost. I mourn for the life I feel like I missed out on. This is not how I expected things would turn out, for sure. But none of us get a perfect life, right? I have a wonderful family and friends and house and the best dogs on the planet. I have fewer worries that a lot of folks. Overall, life is good. I just need to be reminded of that sometimes! Six years is a long time to live with cancer.

Three more rounds. A few more months. The damage will get worse, but then it will get better and better. I can get through it easier when I know it’s working.

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The Chemo and the Kidney

The transition from Kadcycla to Abraxane has not been an easy one. First, I had trouble with my platelet counts being too low to get chemo. Suddenly, I was seeing problems with my WBC counts and neutrophils. I would go in for chemo and be sent home to “wait one more week.” When it finally seemed like things were going to get on track and I’d had a few doses of Abraxane, my creatinine went sky high which meant that something was going on with my kidneys.

After 9 hours in the ER one day, we were sent home and told to drink more fluids. Um, okay. I got a dose of Abraxane the next week after my creatinine lowered, so we thought it was a fluke thing. But the next week was worse– my Creatinine was 4.9, when it should be around 1.0. They gave me 2 units of blood and arranged for me to be admitted to the hospital the next day. 2 days in the hospital got me fluids, magnesium by IV, another transfusion, and no answers about my sudden renal failure. Again the creatinine was lowering on it’s own, so they sent me home.

After much investigation of my entire medical history, the best they can come up with is that Abraxane was causing problems to my kidneys. The weird thing, though, is that this has never been reported before and Abraxane is processed by the liver, not the kidneys. But it’s the only thing that seems to fit right now, so we are reporting my case to the FDA and my oncologist is working on what to do next. In the meantime, I’m getting my fluids, got one dose of Herceptin, and am still planning to go on my trip to Hawaii next week. I’ll get to see my oncologist the week of Thanksgiving and hopefully by then she will have a plan ready and my creatinine will be back to normal.

This has probably been the most frightening episode since the discovery of my brain met. I find myself worrying when I try to fall asleep, wondering if my kidneys are now going to have this response to every chemo. I need my kidneys, and I need them working well. But I also need chemo. If I cannot take chemotherapy, then I’m looking at a long, slow march of trying to keep the cancer at bay with things like radiation and finger-crossing. I need systemic treatment to keep the cancer from going back to the organs.

I cannot control any of this, and once again it’s just a waiting game. If I have to wait around, I may as well do it in Hawaii. I leave next Saturday for Kona, the big Hilton Waikoloa Resort that Alex and I stayed at last year. The group includes 7 friends and one practically brand-new baby. I think the baby and I will be on about the same nap/bedtime schedule. I have my own room, we’ve got a couple of rental cars between us, and we are going to have a great time. My wonderful friend Maggie has a temp job in Bellevue that week, so she is going to stay at my house with the dogs (they LOVE her). So I am going to pay extra for the shaded, cushioned pool chair and read my book and drink some mai-tais and enjoy being with friends. The Kona coffee festival is on during the week that we are there, so that should be fun. I’m a little nervous about how uncomfortable the plane ride there is going to be… nobody likes six hours in a coach seat of a totally full plane. Because I paid for my ticket with miles, I don’t think there is any kind of option to upgrade. So I’ll just have to take my ativan, bring a seat pillow, and hope that once we get there I can walk off the plane without being hunched over in pain.

Stay tuned on Facebook for my fabulous tropical cocktail photos!

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Summer is Over

I’ve been struggling the last several months, the Kadcycla side effects got worse and worse and my body is so worn out. I did get some relief from Palliative Care and learned more about how they can support me. I’m on long-acting Morphine now daily to manage pain, and I’m taking Ritalin every morning so I can stay up most of the day. Otherwise, I sleep about 20 hours a night.

My markers are rising any I started showing some signs of allergic reaction to the Kadcycla, so we are onto a new plan. Tomorrow I start Abraxane and Herceptin. Abraxane is a chemotherapy in the taxane family. My very first chemo was Taxol, this is the same drug but it’s in a different suspension liquid and so steroids are not required with it. I’m very happy about that!

I’ll be going in for infusion every Wednesday, three weeks on and one week off. That means more time at SCCA, but at least the infusions are only a half hour each. With blood draw, waiting for the drug to be mixed and delivered by the pharmacy, etc., my trips to SCCA will probably be about 3 hours each time. If they are behind at the pharmacy, sometimes it will be 4 or 5 hours. But still, not a full day and then I can come home and snuggle with my sweet dogs.

Today I am trying to catch up on things (like this blog!) and prepare as much as I can. It’s the only thing I can control, so I spend my time organizing groceries, making sure I have all the meds I could possibly need, doing laundry, etc. I’ve gone a little crazy buying new fall clothes, but I’ve lost 40lbs on Kadcycla and need new things that fit. I’ve also got all of my scarves and hats ready. I should keep my hair for 2-3 weeks after we start the drug, I think last time it was about 3 weeks.

Fingers crossed that Abraxane works and side effects are minimal. Send good thoughts, please!

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The Break

So it’s been a long time since I’ve posted! I’ve been having a good time on my chemo break, busy with trips and fun. In February I went to Hawaii with my best friend, Alex, and our great friends Tracey and John joined us for 5 days of the trip. We stayed at a big resort on the Big Island and it was an awesome way to relax and celebrate Alex’s birthday. There was a lot of walking to get anywhere at the resort, but I enjoyed the covered cabana chairs and bar service!

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It was difficult to leave after only a week, but that just means that I need to go back again soon. In March I went to Arizona to visit my parents while my Aunt and Uncle were there. We had a great time playing cards and going out to some great restaurants.

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Looking ahead, I’m thinking about a trip to Santa Fe in April and another trip to Carmel again this June. And there is a possibility of meeting up with my cousins in San Francisco in July. But I’m not buying any tickets yet because April 1 I have to start back on chemo again. . .

I had 5 months on just Herceptin and Faslodex, that was quite a good break so I’m happy about that. So while the news was expected, it was still a bummer to hear that my last scan showed growth in the cancer in my bones. There is both more activity in the spots we knew about and new spots that have popped up or returned, so there’s no getting around going back on some kind of chemo. Because Kadcycla (TDM-1) never stopped working for me (I stopped it because the side effects had become too much), we are going to go back on it with the hopes it will continue to do it’s job. At least I know what to expect from this drug. But I am a bit nervous about it. . . remembering the debilitating fatigue, the gruesome nosebleeds, and the pain everywhere. But hopefully it won’t start out that badly and I’ll get some time before it builds back up.

I have more than 50 cancer mets in my bones, from my collar bones and arms down through my ribs and spine, and into my pelvis and femur. It takes my body a lot of energy to fight it so I have still been really tired the past few months. The pain I was having in my tailbone that sparked going on morphine hasn’t bothered me much lately, but the pain everywhere else is exhausting. My ribs hurt, my hips hurt, I wake up every few hours and have to change positions because everything just hurts so much. And that is while on narcotics. I probably need to increase the dosage, but I’m just not mentally ready to go there yet.

I have almost two more weeks before Kadcylca starts, so I’m hoping to have some fun. I might just go up to Whidbey for a few days or I might stay in town and go shopping and eat out and try to see friends. Call me if you want to meet up!

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Gosh, it’s been awhile!

It’s been a strange few months and things seem to change so quickly. Autumn was not the best season for me this year. Side effects and pain took over and there were moments that I actually thought about stopping all of the chemo because I didn’t want to live that way anymore. Then came 2 miraculous events: a meeting with palliative care that brought me complete pain relief, and an offer from my oncologist to take a break from T-DM1.

The transition onto morphine was difficult both physically and emotionally. I felt drunk or drugged, I slurred my words and stumbled around and didn’t remember conversations I had with people. I could not drive my car this way, obviously, but my friends really stepped up and helped with rides, meals, and visiting. I am so lucky to have such great people around me. Mentally, I struggled with the idea of getting palliative care and morphine. I’ve always associated these things with end-of-life and hospice.  But working with my counselor, I’m learning to embrace palliative care as one part of my care team, the part that is focused on helping me have a very good quality of life and no pain while I go through treatment.

So along with having far less pain in my life, I’ve also stopped taking the T-DM1. My doc agreed that I needed a break, so I stopped the chemo in late October. HURRAH! HURRAH! I am still doing some treatments to help encourage my cancer to stay stable. I take Herceptin every 3 weeks as an infusion, Faslodex every 4 weeks as 2 shots into muscle, and Xgeva every 6 weeks as an injection into the stomach. I end up being at SCCA quite a bit. But I feel so good, it’s amazing. There are many days when I don’t even take a nap! I can walk the dogs, I can sit long enough to watch a movie, I can eat most anything that I want. My first scan, 2 months after stopping chemo, showed mostly stability. I have more than 50 bone mets in my ribs, spine, pelvis, sternum, even my arms and legs. But we’re keeping them in check and that’s what is important.

Christmas was fun this year with another Christmas Eve dinner at my place, cooked by Tara.

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After Christmas, my parents and I went to Cannon Beach to meet up with Matthew, Danny, Emma, Jeremy, and the kids. We got the kids and the dogs matching pajamas, which was adorable!!

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Next up is a trip to Hawaii with Alex. It is going to be fabulous! And it’s fun buying new stuff and getting ready for the trip. I’ve been to Hawaii 3 times since my cancer diagnosis. This will be the first trip where I’m not on chemo– I’ll be able to walk places, snorkel, go on a whale watching trip, etc. There will also be plenty of relaxing with swimming pools, cabanas, the spa, and mai tais. I feel so, so lucky I just can’t believe it! I’m not even going to feel bad if I spend my savings on every thing I want to do while I’m there. I’m going to splurge on a fabulous trip and enjoy every minute, We are staying at the Hilton Waikoloa and it’s so beautiful!

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Starting a Caring Bridge Website

I’m not abandoning this blog, but I am trying out something new. Caring Bridge lets you keep a journal to update folks on how you are doing. It also has a calendar when I can request rides, meals, etc. Since I’m not driving right now, I need more help than usual.

I am taking a break from T-DM1 and going to spend some time on just Herceptin and Falslodex. Faslodex is injectable and it is supposed to block the estrogens from helping my cancer grow. Now, no other hormonals I have taken have ever worked for me, so I’m not totally confident in this one. But we will be scanning every 2 months and if the cancer acts up, I’ll go back on the chemo.

I need a break because it just has gotten overwhelming. I’m so tired all of the time and there is so much pain. The worst pain has been in my low back and around the tailbone. I want to use this break to get the pain under control and get some good sleep. I’m seeing a Palliative Care Team that is wonderful and the first drug is working. But it is long-acting morphine and it makes me feel really stoned and out of it. As my body adjusts those side effects are going away. Hopefully I will be able to get back in the driver’s seat soon.

If you want to check out the new site and scan the planner to see if there is anything you would be able to help me with, please do! You do have create a login to post.

http://www.caringbridge.org/visit/karenkasonic

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40 is Fabulous!

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I had a wonderful birthday celebration at Agua Verde on Lake Union. It was so special to have so many friends and family come out to celebrate with me. A big thank-you to my Mom and Dad for hosting such an amazing event!

My Aunt Mary came to visit all the way from Florida, so we had a whole week of special events. My actual birthday included dinner at The Barking Frog. My Aunt Mary made me some super cute pillows with photos of the dogs. So sweet!
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It was a whirlwind week and it was worth the sore feet and exhaustion that followed. Unfortunately, I had to return to chemo on Wednesday and have scans the same day, which was tiring. I felt okay for a few days but yesterday the side effects hit me like concrete. The pain feels like someone is grabbing my bones like wet washcloths and wringing out the bone marrow. It’s much better today, but after bloody noses several times last night and nausea and pain, I’m still home in my pjs for at least one more day.

Many thanks to everyone who donated to The Pink Daisy Project!

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The Pink Daisy Project

Not everyone has the support that I do. The Pink Daisy Project provides groceries, gas, etc. to young women undergoing breast cancer treatment, focusing especially on single moms. Find out more about what they do and consider dominating by going to my fundraising page!
http://www.stayclassy.org/karenk

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The Awesomest Vacation

For our trip to Northern CA we stayed at a gorgeous place, the Carmel Valley Ranch. Lavender growing everywhere, lots of deer and wild turkeys, a great swimming pool and hot tub. We could have just stayed at the resort all day and been very happy. But, there were adventures to be had! We went to some really beautiful places.

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Point Lobos State park. We hiked out to the end of these rocks.

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That’s me out there!

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We did the 17-mile drive through Pebble Beach

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And we did all this while rollin’ in a brand new yellow Camero convertible. Whoot!

 

There was also a spa day and a lot of napping. But I was able to do something every day, which was great. I also got to see my friend Maggie in Monterey and my friend Laurel on the way to the airport– I hadn’t seen her in like 15 years! The time has all gone by so fast. There are so many things I still want to see and do. But for now I am back at home and in the routine, doing laundry and getting my iron infusions. I’m glad to be reunited with the pups. But man, do I miss driving a convertible!

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