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.

IMG_1612

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!!

IMG_3258

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!

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

40 is Fabulous!

kb51

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!
008

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!

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.

Image

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

Image

That’s me out there!

Image

We did the 17-mile drive through Pebble Beach

Image

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!

What Cancer Has Taken From Me

This is not the life I had imagined for myself. Not even close. Maybe even without cancer I never would have married or had kids, but the cancer certainly took those options away from me. I used to go to work every day and feel like there were some things I did really well. Not everything, but some things. I had good relationships with students and colleagues. I feel respected for the work I was doing. Other people counted on me for things, and that felt good. Now the option of a career is gone, too.

I live off the kindness and generosity of my parents. When I buy them gifts for holidays and birthdays, it’s really them buying these things for themselves. I will never be able to surprise them with a party or a trip or anything great for milestone events. Of course I wish I could throw them a big anniversary party and pay for it all myself. It’s not some kind of choice I’ve made not to. I don’t know what kind of mother I would have been, but I have no doubt that my mom would be a fantastic grandmother. Cancer has taken that option, along with any kind of independence I thought I would have as an adult. I didn’t choose any of this. It’s not how I want things to be.

As the years go by I have less and less in common with my friends. They are raising kids and building careers. Even in my Stage IV breast cancer support group, I’m the only one that is single, the only one without children. It is isolating and I feel like no one really understands what it is like to live day to day all alone with this disease on my back. There is pain every single day. There always will be.

Cancer has taken my peace of mind. There is always an upcoming scan or treatment or blood work. There is always the wondering when it’s going to return, in what part of the body, what will the next treatment be? Will I be doing gamma knife again this summer? Will my chemo be changing next month? And then there is the big anxiety. When I wake up in the middle of the night and wonder what it’s going to be like to die. Will it be brutal and filled with suffering like it has been for some of my support group friends? Will there be unimaginable pain? Will I have to make everyone around me feel better by telling them that I am at peace with what is happening to me? Will cancer take the last shred of my honesty and my dignity?

Cancer has taken some really good people. I’ll never understand why those women are gone and I’m still here, almost 5 years later, beating the odds and still responding well to treatments. I know that I am lucky. I know I should be thankful. But sometimes, like today, I’m just not grateful for all that I have. Instead, I’m really angry that this has happened to me and I feel like a giant failure. I want my job back, I want a career, I want to be a regular adult.

I want to stomp my feet like a two-year-old because I can’t have what I want and it’s not fair. Life is not fair, I know. But cancer is a sneaky little cheat that won’t even give me a chance at anything even close to fair. And that really sucks.