This is such a mental disease as well.
I dropped off my kids at lunch, went back to my room and had a banana. I finished more pills then had hot flashes. Took some excedrin migraine because a headache was starting and continued to drink water.
I ran to the bathroom in the room and got sick.
That’s when the panic attack happened and I started shaking and wondering if it was the liver crapping out on me. The phone rang and it was my assistant principal. She could tell right away I was having a tough time and came right down.
God always sends me the right people when I need them. She helped me breathe, I cried it out, said I want to live a long life, then I dried my face, took a deep breath, and we walked to the playground to get my kids.
All in about fifteen minutes.
I’ve gotten good at my game face.
We did all sorts of fun L day activities, then I dropped them off at gym and left for the hospital.
Some days I’m strong, and some days I’m not.
I sat in the waiting area where I go for labs and injections, and rob held my hand. I said to him I wished I could fly far far away. I wanted to be a bird that I saw outside the window. Just fly, and not worry about injections or port or petscans.
That’s when God sent me more people in the form of two of my favorite nurses. You become family with these people and it’s comforting, even as you get long needles stuck into your skin and have to do things to get the blood to come out of the port.
I got the hot packs and stuck them into my pants to ease the injection pain, then headed downstairs to my oncologist.
Everything was running late, but I dont mind, because I know that when I need extra time with her I get it. When she walked in she said it had been a hard day and I better be good. That’s when I had to tell her about throwing up and the liver pain. Unfortunately the labs weren’t back, so we couldn’t check my liver panels, but she did a physical exam and didn’t feel my liver edge. My breast also felt a little softer which was a bright spot.
It all comes down to the petscan.
I’ll get results by Wednesday next week, and if everything is stable or decreasing, we will order ASAP more of the same chemo.
If there is progression, I will then have an emergency appointment and go Thursday to discuss the next step. She is still thinking xeloda, and side effects are pretty nightmarish, with hand and foot issues and skin peeling off and women can’t even use Touch ID on their phones because they lose their fingerprints.
I had higher hopes of information coming from the ASCO conference, but nope. Even the monalisa breakthrough trial doesn’t seem to be one for me. She mentioned she is hoping I can hold until she goes to another conference where more information will be released on another trial she is looking at for me.
I didnt get the huge zoladex shot, and she asked me if I’ve gotten a period or any bleeding. I’m hoping the ovaries have finally shut down and I won’t need that shot anymore. Three is more than enough for me.
She finished our appointment and told me to stay as positive as I’ve been because it’s important. I also have to eat better and exercise more.
Rob and I left and came home to Digger Odell’s to eat. They have a great salad that is one of my favorites.
Once again God put people in my path, a man I used to work with and was robs good friend in high schoool, and another man I used to work with and now teaches music to my nieces. More healing hugs.
I came home and the kids stayed close by. My parents always get them on hospital days and my kids feel safe with them. I fell asleep off and on as they finished homework and played.
Then we all went to bed.
I actually slept a solid five hours last night, and haven’t done that in days.
I needed all of my energy for field day.
A day when I throw on a smile and cheer on my kids as we do all sorts of activities. It’s like a kitten rodeo, getting them to focus while tons of parents scream and cheer and they run around a field.
It’s exhausting on a good day, so I’m glad it was a on Friday.
I’m looking into a peloton bike, and have some money still from the fundraiser. We’ve been very careful with it, saving it for emergencies, and now seems like a bit of an emergency.
Exercise is the missing piece, and it’s hard when joints hurt and exhaustion is constant. My brother rob said it’s changed his whole outlook on exercise. It’s worth a shot. This summer I hope to do walking with friends, yoga, and possibly this bike.
My brother said you can watch the video and feel like your riding the streets of Paris, or along the beaches of California.
That was my sign from God.
I had just wished to be like a bird, and fly far, far away. This could be the next closest thing to it.
I survived field day yesterday.
One would think after field day I would have been able to sleep.
But getting the oncologist labwork back with the results sent me for a loop.
Yes, I’m thankful my liver functions are still good, as are my white blood cell counts.
But the huge jump in the tumor markers is not good.
From 14.6 to 40.7.
The CA125 is actually a marker for ovarian cancer, and seeing her write that she has to take a close look now at my ovaries is what keeps a girl up all night.
The words of the genetic doctor who told me that due to some crazy rare mutation I have, multiple primary cancers were on their way repeated over and over all night long.
There was one little line of hope where my doctor wrote that it could be consistent with a great response or progression was the little light. I’m confused as to how sure a huge jump could mean a great response, but that’s what I’m holding onto until i get the results. My other tumor marker stayed in the same range, so it’s confusing.
Which is par for the course for me.
Field day was great and exhausting as usual. I was able to see Quinn’s class do the tug of war, and seeing him and his friends all jump up and hug each other when they won made my day. Kindergarten went straight through the whole morning, and we finished around 12:45.
When we went to take a picture for all of the parents, our gym coach dumped a huge bucket of water over my head.
The old me would have been embarrassed, but yesterday?
I laughed, told the parents I was just glad I had hair this year to worry about if it looked good, and smiled for the pictures. I love coach, and we have bonded a lot this year. He can dump a bucket of water over my head anytime.
A girl on fire always appreciates baptism with water.
I managed to see a little more of Quinn’s afternoon activities and saw a lot of parents who have become friends. I gave out a lot of cooling hugs with my wet shirt. Our school is so special, and we truly are a family, staff, students, families.
I came home exhausted planned to lay on the couch and rest, as I was exhausted from the hospital the day before and field day all day.
But then rob told me about my labwork, and he had to go to tennis with quinn.
I decided I wasnt going to sit home on the couch and let my mind take over, so I threw on a wig and a hat and went out to the Giving Rooms first “Sober Nignt”. Some may think that ansober night is for people in recovery from addiction. It could be.
But it could also be for people who can’t drink anymore due to medical
Issues or medications they are on,
or people who are trying to become healthier and have cut out alcohol,
or people who don’t drink for religious reasons, and people who want some awesome fruit juices served in fancy glasses.
It was their first night, and I was the first guest. It brought me back to my bartending days at Claudio’s seeing them muddle fruit and mint and using a shaker. Paula had me sample all of the offerings, and man… they were delicious.
Presentation changes everything, and I felt like I was in a speakeasy. We took our drinks outside to her stoop and laughed with other people who stopped by. She also has operation, cards against humanity, and plans on bringing out Twister one time.
Last night helped me hang onto the ledge.
Paula is trying to figure out which days would be best to have more, and we were thinking “Mocktail Mondays”, or Wednesday’s… or Friday but more of a happy hour. I know I’ll keep going to them. Socializing is important, and sometimes cancer takes that away because you don’t drink, or your too tired, or you feel sick.
This was perfect.
Sitting on a stoop, sipping a summer beverage and laughing while watching the world rush by was just what I needed.
I also saw video of a young man I’ve been praying for finally get to ring the bell after a year of chemo. His whole school came out and he rang the bell. I cried watching it, and will continue to pray for him as he now moves on to radiation. He has so much support, and that’s so important and beautiful.
I’m in a detox bath, trying to help my aches and pains.
Then I’ll get up and take my chemo and pills and potions, and go for a walk. The it’s laundry, house cleaning, and getting ready for our Joe to come
home. The kids are excited and it’s going to be a great summer. My friends amy and emily also took on Tomcats, and I’m looking forward to summer nights watching our Joe and getting to see friends.
My friend Donna invited me over this afternoon and I’m excited for that too. I may seem super busy, but I’ve made my world so small. I usually am just with rob, the kids, Paula and my parents if I’m not at work.
It’s a big beautiful world full of beautiful people.
Today may my aches lessen, my mind be still, my body be healed, and soul be at peace.
In Jesus’s name, amen.
In Jesus’s name, amen.
“Cheers to great results coming my way”