Celebrations

 

It was Julia’s 5th birthday party this weekend, and her brother Will turned 2. Julia was about 6 months old when I was diagnosed. I remember thinking how much it sucked that I wouldn’t get to see her grow up– that I wouldn’t get to see any of my friend’s kids grow up.

I may not be here for her high school graduation, but I was here for her 5th birthday. I’ve seen her grow into her own little person, I’ve had adventures on Whidbey with her and many many hot cocoas. I’ve been there with her to visit Santa at Christmastime. I know how much she loves candy. And Hello Kitty. And I know that when she grows up, she wants to have her own Finnegan and Piper.

It’s really special for me to be included in these kinds of celebrations, so thank you Ben and Katie for always letting me be a part of things! Your kids are great and you are amazing parents!

A New Look for the Blog

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I’m tired of the Pink Chick and it’s time to move forward. Not only have I given a new look to the blog, you may notice that the website address has changed. If you go to the old link thepinkchick.wordpress.com it will redirect you here, so no worries about updating your saved links. But the new address is just http://www.karenkasonic.com. Easier to remember and feels better to me that this blog is about ME, not just the cancer part.

Things have been going very well. My last brain MRI was good and my CT scan this week was really good– no growth of the cancer at all. Unfortunately, the chemo is starting to cause some peripheral neuropathy in my hands and feet. This is really common, and part of the price I’m paying for being on T-DM1 for so long. But it’s working on keeping my cancer at bay, so we are better off trying to treat the side effects and stay on the drug. I started gabapentin yesterday which should help the nerve pain and help me to get better rest at night. I haven’t noticed any change yet in my feet, but my pinkies were almost constantly tingling and going numb, and that has stopped. I also got a giant bottle of oxycodone to use for the pain I am having in my ribs, which is from cancer lesions.

So, I’m adding more pills into the pillbox each week. But, with good scans and tumor markers that are down to the lowest they’ve been since I was diagnosed, it looks like I’m going to get to enjoy another Seattle summer. I’m looking forward to getting outdoor furniture for my backyard patio, and maybe a fire pit out there. I hope to take lots of local trips with friends– there are so many beautiful places to go in Washington in the summertime. My 40th birthday party will be August 10, I still can’t really believe that is happening. Hooray for 40!

I will try to do a better job with keeping up the blog. I do update quite a bit on Facebook, so feel free to add me there. Now I am off to plan a June trip to Carmel, Monterey, and Big Sur. I have always wanted to go to the Monterey Aquarium and to see that part of the California coast. If I can swing it, I want to rent a convertible for the drive. Wouldn’t that be fun? Other goals for this summer are visiting the San Juans, spending time on Whidbey, and maybe renting a place in Winthrop or some other fun town. If you know anyone that owns recreation property that they would rent to someone with really cute dogs, let me know! My other big goal is to pay off my last credit card and be debt-free by the time I turn 40. I’m not sure how that is going to work when I’m planning all of these vacations, but I’m trying!

Travel Break

I am so glad I went to Florida and met sweet Annalisa. But traveling across the country like that was difficult and I felt so tired most of the time. I think the travel and the jet lag is just too much for me. . . better now to stay in the West, I think.

IMG_0003Sharon, Annalisa, and John

I also took a short trip to Arizona to see my parents and my Aunt Sue and Uncle Gary. We ate great food, played cards, and went out for coffee. After that was a weekend at the Semiahmoo Resort in Blaine, WA to celebrate Alex’s 40th birthday. We had nice rooms and wonderful spa treatments and got to stop at the outlet mall for a little shopping on our way home.

It’s nice to be home again, I’ve been doing some spring cleaning/organizing and napping with the pups. My last brain MRI was really good, showing the lesion has shrunk as much as they think is possible and there are no new spots. We are waiting 5 months until the next brain scan, from now on just to make sure the spot isn’t growing again and nothing new shows up– just routine check-ups. My next body scan is just going to be a CT because I’ve been doing so well and my tumor markers are stable. All good news!

The fatigue has been getting worse, and I don’t think it’s just the traveling. It’s probably a combination of things. I’ve been on Kadcycla over a year now, and the side effects can accumulate. Long-term chemo has damaged blood cells. So besides taking blood thinners, now I’m having trouble keeping my iron stores up. I’m anemic and it doesn’t seem to matter if I take iron, my blood just doesn’t know how to hold onto it. Not much we can do about that but live with it.

So, I’m tired. And I spend a lot of time at home, just resting but also getting restless and bored. It’s been almost a week since I’ve seen or talked to anyone that wasn’t a nurse or doctor. I’m feeling kind of isolated here and I know that I need to reach out more, even just for coffee dates or something. I think part of my problem is adjusting to daylight savings and more sunlight. I know most people love this, but I preferred it when I could put on pjs at 4pm when it got dark and then go to bed at 8pm. It’s staying light so late that I’m having trouble sleeping, which makes the fatigue never-ending.

 

Making Plans

I sit here with my calendar and my plane ticket to Florida next week and I wonder what I should be planning next. My 40th birthday is in six months and we are planning a big party. I’m thinking about summer weekends and trips and all the stuff I want to do. I am feeling good and treatment is going well, so why not do everything I can to have fun?

And then an online friend from the message boards passed away today. And I’m thrown again, wondering how these things happen so fast. Michelle and her husband finally got an RV in June, her dream for their retirement. She was on Gezmar and her tumor markers were dropping. In July she was driving around the country having a great time. She was feeling good and optimistic. And now, six months later, she is gone. 

This is a story that I hear over and over again. My wonderful real-life friend Michelle Nelson should have been in Tuscany and not in the hospital last Autumn when she passed away. It just turns around so so fast. And it’s not fair.

I don’t want to borrow trouble. I don’t want to worry about what may or may not happen. But I also don’t want to naively plow through my days as if I have all the time in the world. And planning things 6 months in advance makes me anxious. I don’t know what the answer is, I don’t know how to walk this line of being optimistic yet realistic. I don’t know how far ahead I should be looking and planning and hoping for and sometimes I’m just plain scared. I guess that’s what Ativan is for, right?

I’m leaving for Orlando on Friday and after spending some time with family there and meeting the new baby Annalisa, I will be going to the Young Survior’s Coalition conference. Hopefully I will meet some other young women there that I can relate to and attend some good sessions, which might help me start making sense of things again. And if not, the conference is at Disney World so maybe Micky Mouse will have all of the answers for me.

Reaching Out

One of my best friends and biggest supporters is gong through the most terrible thing I can imagine– having to testify at the trial where her parent’s murderer will be sitting just yards from her. It’s taken more than 7 years to get this trial to finally happen. I am going with her so that she’ll have a friendly face to look at in the courtroom and she won’t be there all alone going through this trauma. 

Why am I telling you this? Well, last-minute travel is expensive. The prosecution pays for her ticket and they’ve put her on Southwest Airlines, so I can’t use my Alaska Air miles to get a free ticket. If you have Southwest Air miles just sitting around, even just a few, please think about gifting them to me. It’s easy to do through their website, just transfer them to me at kkasonic@mac.com.

I’m not very good at asking for help, but here I am. I’ve got enough savings for a petsitter and a hotel, but it seems crazy to spend $800+ on a ticket to New Mexico. If I can scramble points together from friends, it would be a big help. Thank you!

Happy New Year!

December went by so fast, but it was a lot of fun. Christmas Eve was at my house this year, Tara did all of the cooking and Danny&Amy did most of the singing. 

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After Christmas, I went to Cannon Beach for our annual New Year’s Celebration. My parents came for a few days, Miranda and Tammy surprised us on the beach, and the regulars were there so it was about 10 total. Lots of fun with the kids and Elsie was especially cute now that she’s talking up a storm. I’m really glad I was able to go and celebrate another New Year’s Eve with good friends.

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Next week I have a PET/CT scan, I think it will be number 24. If I actually counted up the PETs, CTs, MRIs, MUGAs, bone scans, bone density scans, x-rays, etc., I’m sure that it’s well over 100 now. I’m so tired of it! I shouldn’t complain, I am lucky that I’m still here to be getting these scans. But it’s been 4 years now of drugs and procedures and cancer cancer cancer cancer and I’m sick of it. I’m stuck in this endless loop of medical appointments that is never going to end. It’s exhausting to even think about sometimes.

The best distraction from all this stuff is the pups. They are the sweetest and cutest– I can’t tell you how much I love them and how grateful I am to have them in my life. How can you not feel the joy when you look at this pic?

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Radiation Rules!

I’ve been suffering through hip pain for several months now. I try not to complain too much, which I am learning is stupid– it just makes it so that no one takes your pain seriously. Despite that I knew it was bone mets and I know the kind of pain bone mets cause, I was told that “lots of people have hip pain as they get older” and “let’s try physical therapy.” So I sucked it up and went to PT, where after my assessment the therapist shrugged and said there was nothing she could do, exercise and stretching wouldn’t fix bone pain.

So finally, after many emails and calls to my oncologist’s PA, I got my films sent to Dr. Kim in radiation oncology for her to take a look. When I went for my first visit, she said she thought it was referred pain from two spots of cancer on my sacrum. She walked over to me, pressed a spot on my lower back, and BOOM THAT WAS THE PAIN. I almost jumped off the table.

So Dr. Kim, a total rockstar and the most compassionate, kind doctor I’ve ever met, mapped out a plan and started radiating two spots. Within the first 3 treatments, the pain was gone. It is completely gone! I can even walk up stairs without getting a single twinge. It’s amazing and wonderful and as thrilled as I am I can’t help but be a little annoyed that we didn’t get this done 6 months ago.

Radiation therapy is easy and not at all painful. But the process is tedious and you have to go every day, lay half-naked on a table, have them line everything up with the tattoos they give you during planning, get drawn on with markers every day, etc. My SCCA team was great, though, always cheerful and fun. They played my favorite Tom Petty songs and we all sang along as the machine buzzed and rotated around me. They picked a most appropriate song for me, too: “And you don’t know how it feels, to BE ME.” We all sang loud and off key to those last words.