I know it’s been a while. I’ve been in crisis. My calcium levels have been at an all time dangerous high. This can cause kidney failure. My liver function numbers have also been at a dangerous high. My tumor markers keep climbing. I’ve started a new chemo called navelbine as well as added more injections of xgeva to try and get the calcium under control, and faslodex injections to manage estrogen. I’ve been couch ridden, short of breath, in pain, and felt like I’ve been dying for weeks. Throw in working ten hours a day or so with distance learning, my own three kids and their work, a husband whose business is not considered essential… it’s been a rough few weeks. The bright spot is that the film they made about me back in October was nominated for the NY Film Festival PR awards. It was up against billion dollar pharmaceutical companies such as Merck, Bristol Meyer Swuib and Red Bull. I got a call last week that it won. Donnie Yance and his wife Jennifer were shocked. Their little Mederi Center in Oregon beat out these giants. The other companies had huge budgets. They just had me, Jared Cruce and his small crew, and they showed up at my house with no set or script and we just told my story. Amazing.
Yesterday was the biggest treatment day ever. Here is my post from today I put up on my wall. Here’s to better days ahead.
Even my nurse couldn’t believe the amount of drugs I was getting in one sitting.
It is so important to know every single thing about your treatments. Apparently, I was given 100mg of a strong steroid when I had the rigors reaction for the first H&P infusion. I had asked for it it be cut in half and was told it would be. At the time the mix up between the two hospitals was still going on, and orders weren’t received. So the second time instead of half… I received the full dose. I kept wondering why I’ve been so bloated and gainin weight. Now I now.
Which meant that yesterday when I was checking before every drug was administered, there was concern because they said 50 mg of steroid was supposed to be pushed and I said 25. Which meant calls back and forth to my doctors office. I was told it would be too dangerous to go to 25 at this time… so 50 it is.
I did the dance for my kids and my friends who always talk about dancing through life with cancer. My nurse loved it. Cancer patients try to find joy even in the darkest of days and we support each other whenever we can. I’m friends with a 21 year old metastic breast cancer thriver with brain Mets. She dances during treatment and I dance for her. My daughters taught me a hard one to learn and I practiced on the couch the night before. As soon as the port was accessed I knew the Benadryl would be coming soon, so I closed the curtain and did the dance. My kids loved it when I came home, and it showed them that even when times are hard… we can still dance.
Then she pushed the Benadryl and it was on. The hardest part is seeing so many people laying and sleeping all around me, so I like to close the curtains. Yesterday a woman was moaning and crying constantly next to me, and was in so much pain, just moaning over and over how she wanted to go home and crying. That is so hard to hear when getting treatment, and I know how she felt because that was me two weeks ago. Her husband was by her window too and a nurse was outside discussing things and comforting him.
For every person who is still complaining over wearing a mask… oh how I wish you could have seen the heartbreak and anguish on this mans face, and heard this woman’s pain. Maybe you would be a little more considerate in your posts and not so flippant about how sick people can just stay home.
Empathy is everything.
My labs are always hard to get, and getting them while sitting alone in a chair doped up on Benadryl is hard. They told me when they gave me the labs that I would need another injection of xgeva because even though calcium dropped a little… it wasn’t nearly enough. Another phone call was made because the pharmacist on site didn’t want to give the dose my doctor prescribed saying it’s too much in a three week span. Also, insurance may not cover it and it’s thousands of dollars. My doctor however, came out of her meeting to take the call and she has written papers on this specific drug and flown around the world to give presentations on it. So I got the full dose.
They gave me perjeta first, then herceptin. That was two hours. Then the navelbine chemo push over fifteen minutes my hand. Rob has the same anguish on his face when he watched me get the injection in the stomach of xgeva. When it was time for the double injection, they got the extra nurse and they let me stand and lean over the couch and face the window. Rob put his hands on the glass and I put mine on his. The pain shoots down the legs and this time one nurse finished before the other. It takes a long time to slowly push the drug in, and I just try to breathe through and not cry.
I wont forget robs face when I stood up.
He wears a mask.
But his eyes showed everything.
This covid is horrible. I wish everyone who was healthy and complaining about wearing masks or being stuck at home or kids missing out on things could have seen rob’s face yesterday. He is a tough guy. But his eyes… showed pain that he can’t be inside with me. He is the strongest man I know.
I got my hot packs to put in my pants and gingerly made my way out. I felt beaten up and like I ran a marathon. Rob was right at the door when I pushed the button and I leaned on him as he helped me get to the car.
I took my mask off in the car and my face was swollen and red.
When we got home, the kids met us at the door soooooo excited that the sweetest most giving woman I know, Mary Maki, had dropped off pizza and donuts to them while rob and I were away. They were so excited that she stayed and talked to them. They haven’t spoken to anyone in real life other than when we did driveway visits to my family when I was well. Morgan was supposed to have a graduation from middle school and celebrate becoming a high school student. An eight grade awards ceremony. Madison’s junior prom was cancelled. Her NJROTC awards dinner was cancelled where they name the senior commanding staff. Awards night. The musical. A night is strings where all three of my kids were playing together. Quinn’s first pulaski concert.
They haven’t complained at all.
They’ve got perspective on what’s really important in life.
I also got a message from Bunnii from Ellen’s on Front in greenport. I met her when I took morgan to get her nails done as a treat this past winter and Bunnii is the one who met me and then gave me a wig. She sent over dinner for me and rob last night.
The amazing thing about it?
I had just gotten an email from Donnie that he is now worried about my sodium levels being too low as well. He suggested miso soup, seaweed, Himalayan sea salt and soy sauce. The dinner from Ellen’s on Front ?
Chinese style green beans with soy sauce.
Exactly what Donnie told me to eat in an email.
(And man. I’ve never even heard of this restaurant before. Rob could not stop talking about how good the dinner was and kept saying, “Where is this from???” It was good to see him happy after the day we had.)
I didnt sleep too well. The Benadryl wore off and steroids had me up, and when I slept I dreamt I was Fontine from Les Miserables. The Night before I dreamt my house was on fire. No peace in dreams either.
Today I have a meeting on zoom with my principals. I last checked my seesaw last night before bed, and woke up to 19 assignments I have to check. Distant learning is a nightmare for everyone. The governor keeps saying he may cut budgets mid year. I hope everyone remembers how this feels now. If the budget fails… or if we have to do rolling closures or split sessions… there will be layoffs as well as teachers leaving the profession in droves.
Everyone loves to bash unions and teachers, especially around budget time. Just remember how hard this has been when you vote.
Today I hope my students get my own version of Flat Stanley. I mailed then out yesterday with a version of myself and my teaching assistant. It’s like a little paper doll. I have a list of suggestions, and they can make us a home, take us on walks, build a fort, read to us etc. I also made a virtual classroom with clickable links for the kids to hear stories, songs, play games. I even gave us a puppy. That’s one positive of virtual learning I guess.
We are working so hard to keep them engaged. It’s not easy. Hopefully this will help. I have more surprises to mail in another two weeks or so to space it out.
Thank you for all your prayers yesterday. But even though it was hard, I had many blessings with Mary, Bunnii, a bracelet someone anonymous sent to me, a husband who held my hands through glass, and my three children to come home to after a long day.
Count your blessings today.
You may find you have more than you know.
In Jesus’s name. Amen.