These are such strange times we are navigating, especially in my life.
Yesterday was a harder day emotionally for the kids. It was supposed to be the opening night of Les Miserables. The girls had been working so hard, Madison on stage and Morgan helping with stage crew. Their director sent out a video yesterday of former directors and members of Blue Masques that was full of encouragement for them.
Then we got the email from Camp Kesem. This is a camp my kids have gone to for the past two years free of charge. Our chapter is run through stony brook university, and it is a support group camp for children dealing with a parent with cancer. They love it, as they are surrounded by other kids who “get it”. The counselors are all amazing college students, they have a full week upstate with all sorts of fun activities. They also have one night where they light candles and share.
It’s been cancelled this year.
Yet another disappointment for them.
So I pulled out my construction paper and they made hearts for a big heart rainbow in my window. There’s this thing people are doing for kids, that they can go around town on drives and look for rainbows.
A rainbow is a reminder of Gods promise.
I was tagged in a picture by Kelly Thomas, a triple negative advocate. She has a great informative Instagram page called “Talk is cheap”. For every selfie posted with the hashtag #stayhomeforcancer there will be $5 donated to support women with cancer. I’m exhausted and in some pain, but I did it.
I also did a Facebook live video for all of my teacher friends who asked what I grabbed from my classroom during the supermarket sweep grab and go. I have no clue what I’ll do with this, but I’m prepared for anything.
As for me, I had my video conference with my doctor. She said she was so surprised by the results of the biopsy, that she actually called the company. The company confirmed the results and said this only happens in 2% of cases.
She is very excited that there is now immunotherapy for me, and we discussed side effects. The first dose will be the hardest, as it will be a “loaded” dose. The next dose will be half the amount of one drug. Once again, it’s a blessing to be home during this time. I can work from home while dealing with side effects.
My herbalist actually wrote to me that he plans on having this new treatment buy me some time and then he can slowly use his herbs to bring me to remission.
That’s the holy grail word in stage four world.
We are hoping to start treatment soon. My oncologist was adamant i stay isolated from the world, as she already has some cancer patients with covid, and she said it is scary.
Although it is technically spring break, I also spent hours yesterday helping some of my student families. Everyone is frustrated that there has been no word on if school will will continue to be cancelled past April 1. It seems inhumane and cruel to make families wait anxiously for more information. I know my own kids ask about thirty times a day if we are really going back next week. I think it is once again a waiting game based on Governor Cuomo. Add on the stress of regents exams not cancelled yet…
mental health is important here, and everyone should be doing all they can to help ease anxiety of others.
I’m concerned that districts with strict schedules already in place may eventually do more harm than good. For example, if a Thursday and Friday are going to be beautiful sunny days, and the weekend will be rainy, there should be wiggle room for students. Give them Thursday and Friday off to go outside and get fresh air, and exercise, soak up vitamin D, then work during the weekend when stuck inside. If this isn’t ending soon, emotional and mental health must become just as important as the educational assignments.
Today was supposed to be the North Fork Breast Health Coalition Gala where I was being awarded the very first Medal of Valor award for advocacy. It’s been moved to June 5th for now. We will see what happens. But I’ve got even more to share to everyone about how important it is to be your own advocate. By pushing for this biopsy, i went from no more viable good options to a whole new path. How many women have sat quietly in exam rooms and not advocated for themselves? Maybe I’m part of the 2% but the number should be higher… because women aren’t asking for this test more.
Today I’m going to try and really organize the house and clean. Once treatment starts and I’m working every day from home as well as making sure my kids are staying on top of their work while dealing with side effects…
Knowing the house is clean and organized will help.
I threw the kids in the car and we drove to every family members house for a porch visit. They all stayed on their porches and we stayed far away by the car as they got to see each other and catch up. The kids needed some cheering up, and it helped their spirit.
Today I’m praying that someone makes a decision and let’s families in limbo know that they will not be going back to school next week, as well as prepare everyone for distance learning will look like. I’m praying the Stony Brook Phillips Family Cancer Center gets me an appointment quickly for early next week so I can begin this new treatment.
Happy Friday everyone… make a memory❤️
In Jesus’s name, amen.