Meet Piper!

The newest addition to my family is a sweet, spunky, fearless, tiny girl that I’m already madly in love with. Piper is a little firecracker and she’s going to keep me busy!

There is nothing better than a sweet warm puppy snuggled up to your face. She is amazing!

So most of you know that I did not get into the TDM-1 arm of the clinical trial. I’m part of the 1/3 of participants that instead get “physician’s choice.” My oncologist has chosen Navelbine and I will be starting that drug tomorrow. Navelbine is a fairly tolerable chemotherapy. Hair thinning but not loss. Most patients experience fatigue, mouth sores, headaches, and neuropathy in the hands and feet. Low white blood cell counts and platelet counts are common, so most patients also need to get Neupogen shots once a week, which cause a lot of joint pain. I won’t tell you about all the GI side effects.

This is not fun. But what else can I do? This is a drug that is so caustic it will burn through the skin if dripped. Yet tomorrow they are going to inject it right into the port in my chest. It’s totally crazy. But at least I’ll be able to come home after and snuggle with my pups!

Bye-Bye, Bone

Bone biopsies are not fun. I did have some sedation, but was awake and aware while they used a giant needle to drill into my pelvic bone. The target was a small lesion, so it took several tries for them to hit the right spot and then get enough of the bone out. Not fun. Not fun at all. Today I just feel bruised and achy, like someone drilled into my butt. Oh wait, they did.

So I heard from the trial coordinator today and I’m annoyed and frustrated at all the tests I now have to repeat so that they will be within 30 days of enrolling. Even though I just did all these tests last month, now I have to go back in and repeat the CT, MUGA, bone scan, and brain MRI. Another brain MRI, seriously? It’s ridiculous. But I asked my oncologist and she really thinks this drug is important for me and that we shouldn’t wait for it’s approval next year. So I have to do it all. Stupid cancer. Stupid, stupid cancer.

Road Trip

We had a great time in Montana, but the drive was long and I am glad to be home. I drove first to Yellowstone and met up with my friends Steven and Scotty. One night of camping was enough– I spent the next 2 in a hotel! Then I drove through the park and over the Beartooth Pass to Red Lodge for the family reunion. We had a great place to stay there on the creek and Finnegan got more attention than you can ever imagine. 

The drive home was long, hot, and boring. A bright spot was my first morning in Missoula, MT, when I got to catch up with a childhood friend who is living there now. Hadn’t seen her in 20 years! How did we ever get to be an age where that is even possible?

So now I am at home and enjoying petsitting. This morning as I type, I have 4 small dogs running around the couch. They play play play and are the cutest. It just makes me so happy to have all these little wagging tails around. I actually am excited to get up in the morning because they are all here!

I am still waiting to get all my tests done to enroll in the clinical trial. Because my original invasive cancer was so tiny, there isn’t enough left to test. So on Wednesday I’m having a bone biopsy so they can take a little piece of the cancer that’s in my rib and use it to test for the trial. Then I’ll have to repeat the CT, bone scan, and a bunch of other crap. It’s taking way longer than we thought and I’ve now been off chemo for almost 4 weeks. I feel good, but need to get started on this new plan.

My oncologist is having me do a dose of Herceptin tomorrow so that I’m not totally unprotected for all of this time. But it’s still getting a little weird. I can feel 2 more lesions in my ribs and something in my lower spine. But despite these little burning spots, overall I feel really good not being on chemo! My feet are almost totally back to normal. I can eat whatever I want. And some days I don’t even take a nap! 

Bye-Bye, Xeloda and Tykerb!

I’m focusing on the positives that will come out of my cancer being more active. This is two scans with increased tracer uptake and there is one new lesion on my spine, so we need to change things up. The first plan is to get me on the trial for TDM-1, finally open here at SCCA, also called the “Theresa Trial.” It’s going to take a few weeks to get a brain MRI, MUGA heart scan, EKG, etc. to actually get into the trial and then to get randomized.

There is a 2/3 chance that I would be randomized into the TDM-1 arm, and this is what we want. It would be an infusion every 3 weeks where the chemo is bound to Herceptin, so it targets just the cancer cells and not all the cells in your body. Way fewer side effects than regular chemo. If I’m in the 1/3 randomized into the non-TDM-1 arm, then I would get the new drug Perjeta. This would be fine, but Perjeta has to be given with the chemo Taxol, which I’ve had before and isn’t fun. No hair, fatigue, etc. The kind of side effects that you think of when you hear “Chemotherapy.”

There is a chance that my insurance wouldn’t approve Perjeta because it’s only approved as a first-line drug. You’re only supposed to get it if you haven’t had any other chemo in the past. If this happens, I would start on Navelbine.

So, the next few weeks will be a lot of tests and waiting around to find out what the exact plan is going to be. But I’m focusing on the best part: I AM STOPPING THE XELODA AND TYKERB!!! I’m very excited about this. Yes, they are good drugs and they have kept me going a year and a half. But man am I sick of the side effects. Maybe my feet will heal. And my nails might grow. And my face might stop breaking out. And the mouth and scalp sores might go away. And the fatigue might be over! I might actually be able to walk up a flight of stairs and not have to stop and rest at the top. 

So no matter what the treatment plan, I get to be chemo-free for the next 3 or 4 weeks while we work everything out. Hooray for a break! Especially just in time for my trip to Montana. So while it’s not great that my stupid cancer is growing in my bones, this is very manageable and the new treatment might be better than the current one. 

Keep your fingers crossed for me that I’ll be accepted into the trial and get assigned to the TDM-1 arm!

Lisa

She passed away about half an hour ago. The plan was for her to go home yesterday, but she got worse and they had to move her from the hospital to a hospice in Kirkland. Friends and family coming in to say their goodbyes did not make it in time.

I’m so angry

I have never met her in person, but emailed once and have heard about Lisa– a 34-year-old woman living here in Seattle with breast cancer. Her husband died of CF  about 2 years ago. She worked hard to earn her law degree, but had to quit work. Her blog has mirrored so many of my own thoughts and feelings about being young and having Stage IV cancer. She has gone through 5 different chemo regimens and none of them have worked. Someone just posted on the YSC Facebook page that she has entered hospice. It’s not fair and it makes me so angry I just want to throw things. Young, smart woman loses her husband, has to face cancer treatment on her own, and now is dying. It makes no sense at all.

Jackson (May 2000-July 2012)

I still remember the day I brought him home, he looked like a little teddy bear. He was a good dog and we had a lot of great times together. The house still feels strange without him, and I miss his “talking.” 

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Me and Jackson at Whidbey, when he was about 5 months old

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Hiking in Sun Valley. . . Jackson loved hiking, camping, swimming

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Such a handsome boy, such a great smile

Catch-Up

Summer has finally started and things have been busy. It’s been way too long since I’ve posted, so here’s a quick recap of what’s happened in the last month.

Hawaii! Those of you on Facebook saw all of my fabulous tropical drinks. The wedding was fantastic, our condo was super nice, and everyone had a great time. I took a little chemo break for the trip, so I felt pretty good and was able to go snorkeling and to the luau with everyone. I am so very lucky that my generous parents took me on this trip!

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Me and the newlyweds!

I’ve unfortunately been dealing with stupid blood clotting issues that are annoying and frustrating. I have a DVT in my left leg that still hasn’t resolved, so I’m injecting a blood thinner into my stomach area every night. It burns for a good 5 minutes afterwards, so it’s not my favorite thing. In the last week my leg has been twitching and feeling weird, so now I have to wear compression stockings every day. Not a great fashion statement and super hot in the summer! Oh well. This is all just a reminder that cancer and chemotherapy damage the body in many different ways. 

I went up to Whidbey for the 4th of July and then friends came up for the weekend. It was fun to hang out with everyone and the kids were hilarious. But frustrating that I couldn’t do all the things I wanted to, like walk down the path to the beach with everyone. I’m trying to appreciate the things I do get to do– like catch up with friends at a beautiful beach house. But sometimes I just want things to go back to normal.

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Storytime on Whidbey Island