It’s been a rough few weeks. My oncologist had a death in her family, so I haven’t spoken to her in a month. I was assigned a substitute oncologist who wanted to take me off one of the drugs due to the severity of the reaction last time and I said no. Then she wanted to to give me a pre med dose of a heavy steroid and I said no. She finally agreed to let me have hydrocortisone which is fast acting and leaves the system quicker as well as fifty mg of Benadryl, which could probably knock out a horse. She also made sure to make sure I was aware that if I had another reaction it would be worse. Good times, as I felt like I was dying alone last time for about thirty minutes.
I’ve been in a lot of liver pain, so much so that I cried on and off on Monday.
Which made walking into the cancer center that much harder yesterday.
My liver is of concern right now.
So are my calcium levels.
I am still waiting for tumor markers to come back from yesterday. I emailed my herbalist and Donnie as soon as I saw the numbers.
Donnie didn’t have his usual Tuesday meeting with Erin to review current patients as she emailed he was too busy yesterday. That never happens.
My herbalist was concerned, and wants to also see the tumor markers when they come back. Unfortunately the sub oncologist didn’t order all of the same ones from last time so we won’t have a good comparison when they cone back.
The one thing I’m sure of is that I am not crazy and it wasn’t all in my head why I am in pain and can really and truly and actually feel my liver on my insides.
Tomorrow I have a teleconference with my oncologist as she is back. Based on what I’ve read, it’s either the start of liver failure or I’m praying that the liver is inflamed because it’s being attacked by the drugs.
Not sure why the calcium level keeps going up, but instead of the possibility of the bones being eaten away I’m saying it’s the cancer coming off all of the spots in the spine, hips and liver.
How’s your quarantine going? Sleeping well?
It was definitely more packed at the cancer center in Southampton. A lot of my stonybrook nurses were there and we air hugged. To give you an idea of how serious this is, my infusion chair wasn’t ready for another twenty to thirty minutes, and they wanted me to go back to my car to be safe so I wouldn’t be exposed longer than necessary, and I would have to go through screening again. They checked again and decided to move me to a chair far away from others that wasn’t being used.
Then they reviewed my meds and I had a new nurse who said she was already informed about me and the reaction I had, and knew how severe it was and that it surprised everyone with how long it lasted, so she would be keeping a close eye on me. Then she took my blood pressure and it was 180 over something. I explained that it’s never that high and the sub oncologist had said a second reaction would be worse and I probably was just anxious, so maybe give me a minute. She did, and I got it down to the 160’s. I said maybe we should go ahead and do the port, because I’m anxious about that part. So we did, the port gave us trouble, and I ended up having to lay back, cough, throw my legs and arms up, then roll to the side and get a bunch of heparin flushes until it worked.
I said maybe we should wait a while on the blood pressure again.
While I waited for my labs, rob came to my window and just seeing him calmed me down. This is so hard to go through alone. He stood by the glass and we just looked at each other.
Listen, I’m only by myself for a few hours. I cannot imagine what the covid patients are living through. It was finally time for me to start and they moved me to my chair, so I could only look down at rob in the car. He was alone for hours in that car. The battery died and luckily a friend works next door at buzz chew and came and gave him a battery jump. Angels around all the time. It became stormy, and Quinn called him because he was scared at home with the girls when hail came down. Usually they would be with my parents during treatment time as my parents have been their security blanket. They are always checking on them and telling them how much they are loved. It’s hard leaving them alone and them knowing I’m at treatment.
The herceptin went in along with the hydrocortisone and I had also gotten fifty mg of Benadryl. When it was time for the perjeta, it was decided to push it in over an hour instead of thirty minutes. I was right by the nurses station and my nurse was near me the whole time. Turns out her daughter goes to my sons school and they are in orchestra together. I said I looked forward to seeing her at concerts for years to come.
The perjeta finished and they kept me for an hour long observation period. At the end, they de accessed me and I saw my labs. I wanted to throw up. Even my lymphocytes to neutrophils went to crap, as the ratio should be 1:3 and it was 1:5. That is a sign of a lot of inflammation. Not good.
I kept myself busy while there by looking at everyone’s prayers and messages. You really don’t know how much they mean to me. Every single person who hits like or leaves a message or texts me gets me through a day like yesterday. I woke up, had a meeting with my principals and Kindergarten team, then another meeting with my kindergarten team, checked in about 50 or so assignments before leaving for the hospital, then had my TA check in the rest during the day. I’m friends with a lot of women with metastatic breast cancer, and some are younger than me. One was diagnosed at 18, and is now in her early twenties. She had several brain mets but they are down to just one. She makes tik tok dances during treatments and told me to make one. I’ll do pretty much anything for my mets sisters, because I know what it’s like to be in this arena with them. Why it means so much to see someone find a way to dance when the world keeps throwing piles of shit on top of them. Another one always reminds us to dance.
So I danced with my pole in the background and my tubes connected to chest, and don’t care what people think of a 47 year old mom/kindergarten teacher dancing to tik tok. The judgy people can go to the cheap seats, I’m surrounded in the arena by warriors.
Then I saw a picture that made me want to vomit. Literally. Listen, I know this all sucks. We all want to to go back to work, make money, stop having to teach our children and leave it to the professionals, and make this all go away. I don’t get the protestors. When it was spring break with college kids a month ago, everyone was up in arms. Although wanting to party is different than standing up for freedom, they still gathered. The picture of the nurse standing in front of a car reminded me of tienamen square with the tank and the protestor. A man was yelling at the nurse, another woman was screaming at him to go to China, and all I could think of was that in a few weeks, that man or woman could need a nurse, and the very nurse they were screaming at would simply be a professional and whisper words of comfort. I’ve got a friend who is a nurse and she sent me a picture of herself in full gear. We need to check on the medical staff, because the things they are seeing and doing they can’t say because of privacy. But believe me, they will need to somehow deal with the trauma they are facing every day.
But the sign that made me sick was a woman holding a sign that said we should sacrifice the weak and reopen her state. I’m not going to hold it against Tennessee, I’m sure there are people there and nurses and doctors who feel differently. But man, to openly discuss being ok with people like me dying so you can get your roots done, your hair cut, go to work…’
what kind of person makes a sign like that? Meanwhile, I just made a sign for my second round of treatment for a brand new type of cancer I’ve morphed into after three and a half years of a different type.
We will never know who she was as she had her face covered. But with the cancer levels rising, chances are she will one day end up like me, and I hope she is ready for the slaughter she is calling for right now, and that the medical staff isn’t burnt out and still able to give her the care she would need.
I’ll be keeping close tabs on the liver pain today and pray it begins to lessen. I posted at 3 in the morning in my new her2+ groups for hope, and one woman said she had 75% of her liver covered in mets and has been NEAD for seven years now with this drug combo. That’s what I’m praying for.
So since all of your prayers worked yesterday, please pray the liver pain is simply cancer die off, the calcium levels begin to drop, the liver markers start to drop, the lymphocytes and neutrophils go back to a perfect ratio, and the body is completely healed for years and years to come.
In Jesus’s name, amen.
ps. The nurses and doctors should all be given a lifetime supply of face moisturizer because just a few hours left my face all sore and bruised up from the N95 mask.