Shame on you, Komen.
Readers, I won’t ever ask you to give money to this organization again. Instead, I’ll fundraise for the Young Survival Coalition, which provides support to women diagnosed with breast cancer under an 40, including programs for spouses and children. Also the Pink Daisy Project, which provides grants and gifts to breast cancer patients for things that aren’t covered by insurance– rent, housecleaning, gas cards, groceries, etc.
First, the great news: Tara and Milt had a baby girl yesterday! And I got to go to the hospital and hold her when she was just 2 hours old. I’m so happy for them, they are fantastic parents and everyone is healthy and at home tonight.
Looking at the photos from yesterday, I am again finding myself asking, “Who is that?” I hardly recognize myself. I’ve never been a vain person– I don’t wear make-up usually or care much about my hair, etc. But holy crap, I can’t believe how much different I look than just a few years ago. Is it the grey hair? The weight gain? The instant menopause making my skin change and wrinkle faster? I don’t know, but in these pictures I look like I’m about 45. My mom and I are starting to look more like sisters than mother/daughter, because she looks so young and I look so old!
My nose is driving me crazy and I woke up this morning with yet another bad nosebleed. At least this time it was 9am and not in the middle of the night like before. It’s disorienting to wake up at 4am with blood all over your face and pillow!
We had lots of snow last week and Mr. Finnegan had some fun playing in it. I got a little stir crazy and have to admit I was happy when I could get out again. I am feeling a bit restless so I’ve been thinking about and planning some trips.
The most exciting one will be going to Hawaii with Matthew and Danny in June. Yay for mai tais and warm weather! I can’t wait to sit by the pool with my kindle and a tropical drink. I’m also trying to figure out a trip to San Diego. It would be really nice to see some old friends and be someplace warm for a few days.
I’m getting frustrated with the chemo and having all this downtime at home just makes it harder to distract myself from the side effects. I’ve been on the Xeloda now for about 10 months. The blisters on my feet are under control, but now I think I’m developing some neuropathy in my right foot. It sometimes feels like someone is stabbing my foot, but there is nothing there. The sores on my scalp are so bad that I haven’t had my hair cut in forever. This past week I got a few mouth sores again, those are always a pain. And while I’ve had one nasal sore for almost two years now, for some reason in the past week I’ve developed several others. I’m trying sinus rinses and humidifiers all over the house, but I end up with a near constant runny, bloody nose. It’s quite lovely.
And I’m tired. And I’m tired of being tired. And the idea that I’ll be on chemo of some kind forever just makes me really, really tired. While I know that I am lucky that chemo works for me, it’s exhausting to think about moving from one to another to another. I need to just think about today, tomorrow, maybe this week. I need to plan more trips and things to look forward to. I’ve hit the two and a half year average life expectancy for my diagnosis, and in some ways that knowledge is tiring, too. Hooray for being above average! But gosh it makes it seem like the time is going by too fast and with every event I can’t help but wonder if it’s the “last time.”
I do remember thinking that my trip to Maui last spring was going to be my last time going to Hawaii. So going there again this June feels like a bit of a victory. I’m beating the odds and sitting in the tropical air by the pool with views of palm trees and sunsets is going to be a great celebration.
I had a great time over the holidays, but am glad that things are getting back to normal. Before Christmas, Tara and I went up to Whidbey for a few days to relax and do some cooking and baking. Christmas Eve we had dinner at my parent’s place with the Farrells, which was even more fun this year now that Charlie is 2 and was excited about Christmas.
Christmas Day we went to the fancy movie thither to see War Horse. Glad we had the comfy seats, because it was a long movie!
For New Year’s Eve, I spent a long weekend in Cannon Beach with friends. We had the best time and it was not nearly enough time. . . wish we could have stayed a week!
Finnegan, blowing in the wind!
This week it’s back to regular life and I have infusion tomorrow. I’m glad to have a chance to rest, I feel like I can’t get enough sleep. I’m so tired all the time, and even the smallest things exhaust me. A few pajama days will make me feel better, I’m sure.
We had a great time in Portland, eating and shopping and checking out some of the xmas decorations. Oliver loved all of the attention he got from so many adults, and Elsie is the cutest baby ever. I feel really lucky that I was feeling good enough to go on this trip and do so much walking around the city. We actually walked very little. . . but for me, it was a lot! My hips and ankles were sore for two days.
This week was a triple-whammy. I started my oral chemo week on Wednesday, plus had infusions of Zometa and Herceptin. I was also run-down from the trip and my immune system was probably on overdrive trying to fight off germs from the train. So I’ve spend the past few days doing a lot of napping.
I’m grateful that I’m doing so well right now on the Xeloda and Tykerb. It’s nice to have hair and eyebrows and eyelashes. Even my feet are doing pretty well, all things considered. But there are times that I wish I looked a little sick. As much as I like moving through the world without everyone I encounter thinking “cancer patient” the moment they see me, I do find it’s hard for people to understand my limitations. Going to the grocery store is exhausting. I love doing it– I like to get out, take care of my own errands, etc. But I have to plan one or two things a day, then take the time to rest. I often feel so tired and achy, like I have the flu, but I can’t actually fall asleep. I get restless and bored. It’s a good thing I have Finn and Jackson around to entertain me.
I’m also getting uncomfortable about how to respond to people I meet who ask “so, what do you do?” Two of the people on our Portland trip asked me that and I had no idea how to respond. I don’t want to be a bummer and respond with “Oh, I’m not working, I have terminal cancer.” That just makes everyone uncomfortable. I just laughed and said I was retired early, which of course makes no sense since I look like a healthy woman in her 30s. I should just start coming up with fake, crazy occupations. Or say I’m an heiress.
It’s very, very strange. But the little nails on my toes are getting smaller and smaller and now they are barely there. The big toe nails look normal. It doesn’t hurt, but it feels weird. Oh well.
I’m back on the Xeloda today, it’s only day 2 of the cycle and I’m already so tired. But I’m super grateful that the cleaning service was here today so I have a clean house, clean bathrooms, and clean sheets on the bed. I’m not sure that there are many things better than slipping into clean sheets at night.
I just heard that some of my favorite people are going to be able to join me for New Year’s weekend in Cannon Beach, OR. So far there are 5 adults, 2 kids, and 3 dogs. What fun! We’re going to the same resort I went to last year, where my 1-bedroom suite had this view:
I have the best pets ever.
Nothing much new is going on. We had a nice Thanksgiving up on Whidbey Island and I can hardly believe that it’s almost December. We’re doing a gift-free Christmas this year, so I’m happy to be able to focus on baking and relaxing. No shopping!
I have some really fun plans for the month. I’ll be taking a train trip to Portland with Emma and 3-year-old Oliver. Then I’ll be going to “Cinderella” at the 5th Ave Theater with Katie and little Julia, who will hopefully love it. And for New Year’s weekend, I just booked an oceanfront room at the Surfsand Resort in Cannon Beach. I’m super excited for that and it looks like some friends will be able to come, too. What a great end to the year.
My feet are doing better on the Xeloda, but the fatigue is really getting to me. I’m tired of being tired. And I’m often feeling so tired but I can’t actually fall asleep, which is frustrating. The good part is that I’ve had lots of time to read and I’m just starting my 91st book of the year. I may just hit 100 books in 2011. I’m looking forward to Book Club at my house this Sunday, where we are discussing “The Marriage Plot” which is a new novel by one of my favorite contemporary authors.
