Yesterday showed me something so important.
Your surroundings matter.
I took off yesterday morning so I could vacuum, mop, wash sheets, catch up on laundry, and clean the kitchen.
I decided to put away all of the Halloween decorations and autumn lights… and set up for Christmas.
I said to myself that if the tumor markers were bad and went up, at least it would look like Christmas. While I’m sick on the couch this weekend, seeing Christmas lights would make me happier. If I had to tell my kids bad news, seeing Christmas when they came home would soften the blow.
Your environment matters.
We went off to Stony Brook and I was anxious. They finally opened their huge new wing in the main hospital. Going for chemo is always stressful, then add on a new place and new procedures…anxiety rises.
But man oh man.
It was fantastic.
They have valet parking for patients. Do you know how amazing it is to have your car called for and waiting for you after sitting in a chair for hours getting chemo?
There is artwork everywhere. The lighting is amazing. It feels like an art gallery or museum.
The security guard welcomed us and walked us to the elevator and pressed the button for us. There were dolphin balloons right where the elevator opened, as the pediatric center is there too. I saw several children with bald heads in wheelchairs, and lifted my palms out toward them quietly and sent them prayers. I’m lucky it came at 43 years of age. Ill never get why it hits children. We need research now to fix this.
The people at the check-in desk now wear uniforms and look like flight attendants. You get a tracker so they monitor your wait time and know where you are. That was great as we were able to leave to get soup and drinks in their new Panera right… down.. stairs. There is a Jamba Juice too! They accessed my port in a nice Spacious room and it worked like a charm. The waiting room has floor to ceiling windows and is beautiful.
I was called in to the infusion area and I couldn’t stop smiling. When I was showed my chair spot?
I couldnt believe it. It was almost as big as a hospital room. My chair had seat warmers!!!Rob even had a little couch! I looked out a huge window instead of staring at a nurses desk.
The paint was a light cream instead of mustard yellow. They had hanging lights. There is even an area with a fireplace for goodness sake!!!
I had a brand new nurse for me this time and I threw her off because I was smiling so wide. We talked about how fancy it was and laughed as we spoke fancy to each other.
The most comforting thing though was the faces. I saw all of my friends. They aren’t my nurses anymore. They are my friends and sisters who I can cry with and get hugs.
Jean kept coming over and checking on me, and she is family now.
Dr Stopeck was away and her assistant was called out on an emergency, so we saw her nurse Mary and discussed a new blood tumor test Donnie really wants me to get. OncoDNA is the name and he feels it will give me a better look at options down the road.
Hermina stopped by, and I also met another patient of Dr Stopeck’s. It was amazing. She is a teacher too, stage four from the get go, started at Sloan and was told to go home and get her affairs in order. She fired them and found Dr Stopeck four and a half years ago. As we talked, I kept feeling like we would have a connection, so I mentioned chinese herbs, Dr Snufflufogus, Donnie Yance, Rick Shapiro, Annie Appleseed, Nalie Augustin, Stephanie Seyban, books and movies…I kept talking because I knew I would say someone.
And then she asked how I met Donnie and Snuffy..
I told her because I taught a boy and his name…
And she said…”Wait, from the Golden Earthworm??? I get my CSA from there and my cousin used to work there!!!”
Hermina and I looked at each other and I said, “There it is! Six degrees of separation!”
After we exchanged contact information, my nurse came over with the tumor markers.
I sobbed and sobbed and cried like a baby.
They went to get Jean and we hugged.
Rob and I took our picture and I let my family know, then I texted my nurse squad, then I put it out for all of my prayer warriors on social media. You have no idea what that meant to me.
It means more time.
It means that as I am so sick this weekend and feel like I’m going to die, I know I’m getting more time to live.
Jean and Hermina also discussed my pain. I told them how I cried all night one night and felt like my back was literally breaking. I’m hiding it well, but I’m in constant pain in my back and legs while exhausted and nauseous. Jean had Hermina turn around and she she pointed out on Hermina where my biggest bones are in my body… the sacrum and thigh bones. That’s where the neulasta is hitting the hardest, and forcing the marrow to produce mature white blood cells faster.
It’s not cancer growing.
It’s the body fighting.
We finally finished and as we walked out, Rob and I stopped by the fire place to take a picture.
We gave hugs goodbye, turned in the tracker, met the valet attendant and left.
Then I called my mom and cried.
Rob was hungry so we went to the mall to eat, I pounded more water, and we took a picture by their huge Christmas tree. If I wasnt so tired I would have tracked down Santa in the mall and sat on his lap for a picture.
My dad texted me when he brought the kids home that they were so excited and surprised to walk in and see Christmas set up in the house. They had spent all day knowing their mom was in the hospital and not knowing what the markers would be when they got home, which is traumatic for a child, and came home to a clean house and Christmas. They were thrilled for the good news.
Here’s the thing about yesterday and what it did for me.
You see, our district has put up a bond. Our schools are overcrowded and I believe one building has the same toilets from almost one hundred years ago when the building was built. I’ve gone to Eastport for NYSSMA and I walked around in awe. I’ve gone upstate for swim meets and walked around in awe in those buildings. Then I come back to riverhead and think… “I wish we had that”. But we are land rich and people poor. Politicians have never done their job or done right by us or helped us.The initial proposed bond was pie in the sky and a dream. It’s been cut and cut and cut again to bare bones. Yes, there is a track and some athletic additions. Can they cut that too? Yes.
Here’s the thing.
I went into chemo yesterday and felt so at peace, so happy, so comfortable… because of the care the hospital put into making the surroundings good for the patient.
Imagine if society does the same for children?
I busted my ass and got donations for a courtyard this year while going through chemo, and every time we walk by and look outside we see beautiful and colorful mums, straw bales, corn stalks, scarecrows… and every single child smiles.
Your outside surroundings change your inside makeup. When you are surrounded by chaos, overcrowded, it affects not only your education, but your physical and emotional and mental state. This in turn affects your hormones, your immune system, your inflammation, even your DNA. It literally changes your cells. What are we doing to our children?
If your surroundings show you are important, you are cared for… that you matter…
You can do anything.
There are numbers going around and misconceptions being spread. People need to call the district office and find out their own tax increase. I’m expecting mine to be about $500 or so a year. Is that going to be easy? As a stage four cancer patient whose money goes to treatments? No. But if this bond fails, I shudder to think of what will happen. Split sessions? Cut sports? Music? Clubs? My kids deserve the best. So do yours. I cant afford private school, so that’s out of the realm of options.
Riverhead is all I have.
Riverhead is all I want.
The teachers are like my nurses in the infusion center. They are the heart and make it work no matter what. They are the best. Just look at my kids, thriving through their mothers cancer diagnosis. We couldn’t do this without them.
Your environment matters.
It mattered more than I thought it would yesterday. It made yesterday even better than I dreamed.
We can do the same for our kids.
I’ve been up most of the night. The neulasta machine on my arm is uncomfortable and blinks a green light every few seconds. Morgan had a nightmare and was calling out “Dad!!! Dad!!! I woke up and saw blinking light and thought the police were outside… but it was the neulasta light blinking on my arm by my eyes. You don’t go back to an easy sleep after that…at 10:45 pm.
I’ll go to work today, and keep tissues handy as the sweats began pretty intensity when we left the hospital. Literally dripping down my face into my eyes. Remember the movie airplane? Yup.
The heartburn also began so Prilosec and Claritin for bone pain will begin on top of all the other pills and potions.
It’s purple day, so I’ll wear my purple hair… which will look great as my face gets redder and redder as the day goes on.
I got a message from Erin that Donnie likes the idea of doxil as a possible next step. She also said Donnie’s wife jen saw the movie yesterday and she said it was amazing. They are excited I’ll be at the premier and asked permission to acknowledge me in the program and at the show where it will premiere. I cant wait to meet Donnie and hug him and the staff in person.
Please pray for me today as I enter the next hard few days. My family and friends have all stepped up and offered to keep my kids busy so they don’t have to see me on the couch sick all day. I’m going to head into the detox bath in a bit to begin to try to help lessen side effects while keeping my arm and the naulasta contraption above water.
May we all have a peaceful day.
Stay warm, friends…
In Jesus’s name, amen.