“So Keri, what did you do first week of summer vacation?”
Well, I waited for a PETMRI scan, was told the cancer was worse but there is now actually hope I can be “cured” and am some weird miraculous oligometastatic small minuscule percentile patient, but that means I have to now have IV chemo, get really sick, lose my hair, possibly amputate my breasts, then do more chemo…. and I need to start immediately because the window may close on this chance . Then I had to go home, prepare my kids and summer son who we somehow love like he has been ours forever, stay up all night researching tips to manage horrifying side effects, run around like a nut getting kids haircuts and forms filled out for cancer camp, go to Target and have a kind employee follow me around to make sure I found the plastic ice cooler and smaller bags of frozen peas and blueberries and largest socks for my hands and feet, drop off my kids, then get a phone call the hospital wants me early, gulp down more steroids and any allergic reaction meds because apparently it can kill you but they monitor you so closely the nurse sits in front of you the whole time with monitors so they can stop it as soon as you have trouble breathing or your heart races.
I have a beautiful soul of a friend from my SUNY Cortland days who held my hand the entire day. Lisa prepped me and was fierce. The peas and blueberries and socks and changing them every twenty minutes.
Then I took a moment, went to the beach, and prayed to Jesus to heal me, and thanked Him for my life and family and friends and love and this small window that He has opened.
Lisa also told me to forget the healthy eating and eat like I was preparing to go out and drink downtown. “Soak that shit up.” So I ran to the deli and ordered my first sandwich in a year and half, and got a hug from one of my secret nurse Society moms. Then lisa told me to get hard candy to suck on. I didnt see any but knew across the street at my school there was a bowl.
I called and Vanessa answered. She may be my assistant principal now, but she is my sister from God always. I knew I needed to get a hug from her before starting this journey. I ran across the street and into her arms. I hugged Phil, my principal, Mirta, my secretary, and Vanessa and cried. At work you work with people. I work with family. We took a picture together so I could look at it and remember all the love they filled me with on this day.
Then we drove to the hospital and i had the best turkey sandwich ever.
I drank and drank and drank water.
We got to the center and lugged in my cooler, carry on luggage, and water jugs.
So what’s it like to get chemo the first time?
I sat in a waiting room looking vibrant and healthy and hair and tan and gulped an entire bottle of water, surrounded by very sick people.
When it was time to go in, I was in a unit with everyone hooked up to monitors and IVs with curtains separating us. Lisa told me to tell them to use a warm pack to find my vein and they did, first stick. Then they ran fluids.
Then they said since I had hyperemesis with all three pregnancies, I should expect the nausea to be worse.
They ran two anti nausea meds.
Then it was time for the taxol.
They hooked up a blood pressure cuff to monitor me constantly so I made a game of breathing and trying to make it as low as possible. It worked.
Rob was amazing and kept changing the veggie and fruit sock packs every twenty minutes. He held the ice pop and gently put it in my mouth because i felt like i had the Elephant Man hands with the socks and couldn’t hold anything.He held my hand. He told me I was going to be ok. He told me he didn’t care about hair.
I’m so lucky.
My friends and family sent the most supporting and loving texts.
Lisa told me everyone naps and rests when they get chemo for the four hours. Not me.
She said I better get up and “pee out that shit” constantly. So I did.
In my travels I saw a woman with a cold cap. She was just diagnosed last week with colon cancer and was trying to save her hair. She said the radiation people told her to stop eating kale because it causes gas. I told her all about what I did and how it probably has helped me this whole time. She said she is going to look into reiki next. I told her I was a level two reiki master and would be more than happy to send her distant reiki from my chair. She said yes, so I did.
She actually fell asleep as I did it.
Then it was time for the carboplatin chemo. I never knew how long it took.
Hours…. and hours.
The patient advocate came and I told her immediately about the sailboat painting and how hard it is to be in a tube with your life turned upside down and have to look at an upside painting from a mask with a mirror strapping your head to a board to keep your head down.
She said no one ever brought that up before.
That’s because everyone is so busy in shock and treatment it’s just a little thing.
But the little things matter.
Everything matters, and yet nothing matters anymore other than saving your life.
Near the end of treatment the exhaustion and stress and insomnia caught up with me and I dozed off. My friend Joanne got me a blanket with pictures of my family and it covered me with love as i slept. I woke up with a feeling and looked at the foot of my bed. My friend Cathy sent me her friend Heather who is a nurse there. She always meets me now for hugs.
She said she felt my energy and prayed over me when I slept.
I felt it.
It ended, and my chemo nurse Jackie unhooked me. We were both so happy it was her. She had given me injections before, and is so kind. I even talked to her about meditation. She said she couldn’t meditate. I asked if she could take in one breath. She said yes. If you can take in one breath, then let it out… you can meditate.
We got to the hospital at 1:20 and left at 5:30. We were told it will be longer next time.
We ran to the car to check out the wig and head wrap place. I was told hair usually falls out around day 21, but many lose it before as well. I knew the wig place was closing, but wanted to see if it was too scary to bring my kids. The first time I was diagnosed and thought I was getting chemo I wore head wraps at home to prepare them. I threw them out when I was told stage four and also gave them away. The kids told me it scared them after that.
There is no going back now, so if I can make this somehow fun, and if I end up with silver surfer superhero hair, but it makes my kids less scared.., I’ll do it.
I’m doing it all for them.
I came Home and took a detox bath as I had lisa and Annie Appleseed in my head .
“Get that shit out as fast as you can”.
I texted Vanessa and she helped me breathe through wigs and haircuts. I think I found a short one to try as a preparation for total hair loss.
Listen, everyone says it’s no big deal. But to me? I’ve had a love hate relationship with my natural curly hair forever. When I got my weave, “Blair”, I only got the joy of her for two months before I was told cancer. Then every time I put it on it became a way to feel beautiful before the eventual bald day came. Wigs are expensive and hot. There are synthetic and real hair wigs. I love my hair. Everyone who knows me knows how much I love my hair.
So this is going to be hard.
It already is.
They’ve told me my scalp may hurt as the hair falls out as the follicles will be sensitive.
I’m going to finally apply for the North Fork Breast coalition grant. They give you $1,000 for whatever you need. I’m going to need help with the emotional part of appearance. My insurance will give me $1500 towards reimbursement. Wigs can run from $200 to $2500. The cancer center is also sending me someone to do a chair sitting with a donated wig.
This is hard.
We will still meet with Donnie Yance, but now won’t fly to him. Instead we will skype. He is expensive, and we are using along the money from the benefit last year for him. Thank you to everyone who went last year. Because of you, I can add more experts to my team during a critical time.
I also gargled with salt water and baking soda.
I cant talk this morning as my throat is on fire. I’m hoping more detox and water and gargling will help.
I still have hot flashes, but no more coil with trigger ginormous needles. My oncologist said the chemo will take away the need for that.
I asked if that means it’s killing my ovaries. She said she didn’t want to say it but… yes.
So I’m praying it doesn’t kill any of my other organs, and only the cancer.
My friend Jodi dropped off three fun fake wigs to add to the growing collection.
I looked up shorter haircuts, as they said finding smaller chunks of hair seems to be less scary than finding longer chunks.
There is a wonderful stage four speaker named Nalie from Canada who has rocked the different stages. I may go for her look… or the Robert Plant Simply Irresistible woman from the video.
I may have a spur of the moment night at the beach with women who want to be with me and hold me in sacred space and prayer as I cut all of my hair off. I see the sun setting, women each taking turns cutting some hair and praying as the hair is removed so is the cancer, and then letting the wisps go to the wind and the water and the sun as it sets the sky on fire. Then we will dance under the moon and thank God for this beautiful miraculous life and the window he seems to have opened.
We will see, I may wake up one day to half of my hair in my pillow and just cut it. But it’s a lovely thought, and if my courage rises and the weather helps and my friends are free…I’ll throw it out in Facebook and whoever comes, comes with a candle and a prayer and a towel and love.
Wish me luck today with the kids, Quinn especially. He had a birthday party to go to but chose to stay with me. In a way it’s good Summer is here, but I miss having his teacher and counselor and friends around him all the time to occupy his mind. We will look into camps and activities this week.
Then we have my nieces third birthday, then a graduation party. It’s good to be busy, as they have warned me tomorrow is the toughest day.
Thank you all for getting me through yesterday.
And every day that comes…