I went to work yesterday.
Yes, I got yelled at by several colleagues, but they also all get it. If I can save a sick day I will. If I am able to function, I’ll go. I was still in pain all day, and couldn’t take deep breaths, but we are just starting to get the kids to follow one step directions and answer their names. Plus, I do love my job, as challenging as it is lately with so many children and so many who don’t speak English. I’m starting to get the hugs out of the blue as well, and the love bonds are starting.
So why would i stay home and let my mind bully me all day?
I sent rob to the Yankee game he had planned to go to with a friend. He was supposed to go to a golf outing the day of the hospital emergency room trip, and i felt horrible he missed it. He never gets to relax or have fun, and doesn’t have much support. The friend he went with has been a true friend and gets it, so I felt he needed a break from cancer land.
I picked up the girls and decided to go pick up the Percocet to help me manage the pain and sleep. The drugstore didn’t have the prescription, which meant I had to look through my discharge papers to find the name of the doctor and call the emergency room. Turns out they never sent the script, and they sent it again. The doctor from yesterday wasn’t surprised i went to work and he said he could tell I’m a fighter. I called the pharmacy and they never got it. Then? It was late and the pharmacy closed. So Motrin to handle the pain.
Looking through the papers was a mistake.
I saw it mentioned damage to the s1 and a new lesion in the t7 bone. It also mentioned multiple liver lesions measuring larger than before. But i looked for the bright side and it didn’t mention any on the heart, lungs or kidneys. So today I head in to the PETMRI mostly concerned about brain, bones, breast, lymph and liver.
I got an email from Donnie and he still wants me on xeloda and adding faslodex. He said the liver is the main concern and the caris biopsy showed an esr1 mutation and faslodex (shots in the ass) were down regulators. Dr stopeck read his email and wants men to hold off until we get results on Monday, but if i really want I can take xeloda and celebrex again. She would rather I not in case I need a new treatment as she wants my blood cells to be as healthy and high as possible. Donnie also suggested a coffee enema. Lots of people in the natural world do them. I even bought the kit but haven’t had the oooomh to do it. I’m more of a Starbucks girl than a starbutts girl.
There has been comforting signs.
I’m being flooded with Leila love. Her mom found a card Leila bought for me before she died and never got a chance to fill out. So her mom finished the task and sent me a beautiful note.
The same day I saw a new post from her husband their son. Her little boy has Down’s syndrome and she made her husband promise to keep her instagram page going so they can see that people with Down’s syndrome are just as beautiful as anyone else.
And Milo is.
I’ve missed her updates on her little boy, and the Down’s syndrome community lost a huge advocate when she passed. Her husband is picking up the torch, and I’m so proud of his ability to move through the pain of losing Leila and be a great dad. It’s always in the back of my mind how rob will be should the worst happen. Just last night Quinn said it was weird without rob home. I caught my mind going to the dark place and stopped it.
I checked twitter and there was a message from an aunt of Leila’s. Then? Her grandma commented on my post from her page. Leila’s mom Terry said i have her whole family praying for me, and yesterday they showed up big time.
Thank you, Leila.
I also got my phi sigma sigma sweatshirt for the big football game everyone is going to. It’s in my birthday and I’ve been afraid i won’t be able to go. My friend kittles sent me the shirt and it was a reminder to keep pressing forward.
I also got a book about Jesus and Buddha. The week I was sent another email asking and questioning my faith. Now I have something to read when I’m in solitary at the hospital this morning.
I ordered metavivor shirts for when October comes and the color pink vomits all over stage four breast cancer patients as we are shoved in a corner because we are scary to everyone else in their tutus.
I’m up and taking Motrin and water bombing to get my veins ready for the test today. I go at 8:3″which means vein stick around 8:45, radiation injection around 9:00 solitary until the 10:00, then?
I’ll ask Wayne my tech to turn on Nat King Cole Christmas music and I’ll try to breathe while looking at the upside down boat on a beach scene in a tight tunnel with my head and body strapped down.
Madison said wouldn’t t be nice for me to get good news? That maybe the hospital was cancers last gasp at trying to take me and I fought through it and will get the miracle and be healed by Halloween. I hate that she daydreams about the cancer, but love that she makes happy endings.
Morgan is doing great at field hockey. I’m so proud of how she is also coping. Quinn is extra snuggly, extra emotional and tells me he loves me all the time. I tell them all that too.
Please pray for me today, and also for my friend Johanna who has had a very hard time and needed more surgeries on her brain. She is over 100 surgeries, and her mom and I keep texting each their support.
Sometimes when your breathing underwater you hold someone else’s hand in the dark.
May my scans be not as bad as my mind is telling me.
May my pain lessen.
May Morgan have a great first game, and my kids all continue to move through their day with grace and compassion and peace.
May rob be filled with strength to help me through another scan, as I’ve lost count now how many it’s been and it never gets easier.
In Jesus’s name, amen.