Happy Memorial Day and thank you veterans!
I don’t have anything particularly inspiring to say today so instead I will ramble a bit about politics, philosophy, and love–why not?
First thing on my mind is love. I am writing this blog as a love letter to my daughters and husband. I want my daughters to know me fully since I doubt I will be hanging out with them in 20 years drinking wine and giving unsolicited advice. Tim and I have adopted a 3-5 rule. We are hoping I will be here with you all for another 3 to 5 years. This was randomly picked because it makes us breathe. Got nothing here.
I realize I have posted some things on social media and not here and it can be confusing if you know half the story. I realized this when several people asked me what the symbol is on the silver necklace I wear. It is an Icelandic rune for the word “love”. When Tim and I were in Iceland he found it in a gift shop along with a man bracelet with the same rune. There were many words to pick from but we settled on love. Man jewelry–it’s a thing!
Since I am on the topic of love, I would like to say it is a great day to be Irish. Congratulations to Ireland for being the first country in the world to recognize marriage equality! They are “a beacon, a light to the rest of the world of liberty and equality, so it’s a very proud day to be Irish.”
I wanted to point out that I do not use people’s full names when I mention them in the blog because–hey, they didn’t ask to be here and I don’t have their permission. I will refer to my docs only by their first names because I have complicated medical and emotional issues. My experiences with them are unique to me and your experiences with the very same docs could/probably would be far different. Just wanted to clear that up.
Speaking of my new doc, Rachel, I was telling her that I have sort of lost control of my typically conscious way of eating. With a full-time job, kids living at home, and cancer, I have lapsed in my attention and grabbed stuff in a hurry– potato chips and other junk I wouldn’t normally eat. She looked thoughtfully at me and leaned over and said “it’s okay to eat the potato chips.” I knew I liked her, she had me at hello, but that sealed the deal for me! This week I am getting back on the wagon–protein shake for breakfast, Greek yogurt and humus with carrots for snacks, fresh foods etc. I have bought caramel calcium thingys since I can’t stand the big pills, watermelon amino acids and electrolytes to add to water since I have to seriously amp up the water levels now that I am flying on one kidney. Gummy vitamins and chemo meds and high blood pressure meds–see I told you it is full-time job managing all of this but I think I got it. Hey, we all fall off track, I just needed to focus in on this again.
Also it helps that I am not having as many side effects this time out and will actually finish my first full chemo cycle on Wednesday. Biggest and most annoying problem is fatigue as my white blood cells continue to plummet. Bridget used to say I moved around like a cat on a hot stove. Now I can do things but have to sit down for 10 minutes before I go on to the next thing and conserve when I can. It’s a kind of fatigue that is not ameliorated by sleep but I am doing plenty of that too! Speaking of Bridget, she called me yesterday and asked how I was feeling. I mentioned my white blood count and she responded “I thought blood was red?” Yup, no one listens to me.
In another random aside, I posted this on FB. I suggested “Gravity” by Sara Bareilles as our special song for Kelsey—-she looked positively mortified and said “you want our song to be about addiction?” Google it on “So You Think You Can Dance”. Now I am mortified but awed.
Speaking of dancing,Tim loves Sia ( I do too but I am totally annoyed that she wants me to buy her music but won’t show her face). We do not watch” Dancing with the Stars” (The Voice has worn me out), but go to Youtube and see Sia singing Elastic Heart live while Julianne and Derek Hough dance side by side with a little boy and girl. Heart breaking!!!!!!!!!!!!
I told you I was rambling…..I think the chemo might actually be working. What empirical evidence do I have you ask? My hair started shedding in the first cycle but now I realize it is not growing! I have not had a haircut in like, a really long time. Also I like to have gel nail polish applied but invariably peel it off once my nails start to grow a few days later. This week I managed to keep it on for 7 whole days—because my nails were not growing!
Another aside: I am not allowed to have blood drawn or blood pressure cuffs put on my left arm or garden without gloves or have a manicure. Trust me the gardening thing does not bother me so much. If I could go back in time I would have had a port put in my chest to give my poor right arm a break. It has seen a lot of action—-surgeries, transfusions, IV chemo, blood banking etc. Why you ask can’t I use my left arm? Twelve years ago when I had my first breast cancer surgery, the cancer had spread to my lymph nodes. I had a sentinel node biopsy followed by ancillary node dissection. That is a fancy way to say they took them all out of my left arm and now the risk of infection leading to lymphedema is too great. My sister Mary played around with a rose-bush and pricked her fingers—-she developed terrible lymphedema that plagued her until the end. I take it very seriously!
Speaking of nail salons, I go and they just apply the gel to my nails without using any tools. They are Vietnamese. It bothers me that we have such a communication barrier. I want to be able to talk with them and ask questions but the whole experience feels depersonalized and I worry that they feel dehumanized. Of course it also reminds me of my favorite Seinfeld episode when Elaine brings George’s father to her nail place to translate because she thinks they are talking about her in Korean and yup, they are. Hilarious. Just leave a big tip people.
BIG NEWS: Kelsey and Bridget are moving out!!! They have a swanky new apartment in South Boston and plan to leave us in the dust on June 1st. I don’t know how all of their clothes and shoes are going to fit and they are sisters–let’s see how that pans out! Bridget will probably die of starvation! Girl needs regular feedings, just sayin.
So, summer vacation is around the corner. Where would you go next with advanced Stage 4 cancer? Of course! We are going to Central America! Let’s see how my new doctor handles Belize.
I’m A Believer”—-get it? The Monkees circa 1966
Love from the Monkey House xoxo