Treatment 2 and I Didn’t Die… Yay Me!

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.

He Loves Us to the End

I did not feel well at all yesterday. Was it an anxiety attack? The virus? Side effects of immunotherapy? Side effects of working at a computer for hours a day? Guilt at the disarray of the house and neglecting my kids?
I turned off my computer at 3 like I said I would.. and read the Bible.
Specifically a passage in John.
It brought me such comfort.
“Having loved his dear companions,
he continued to love them right to the end.”
Yesterday was Maundy Thursday, the last supper. So many important things stood out to me.
He washed the disciples feet.
Back then, that was a servant’s job. But Jesus took the water and washed his disciples feet. The disciples had been once again arguing over who was His favorite. Even after hearing how the meek shall inherit the earth, it was still a contest. Jesus got up and showed them that no one is too good for any job that is of service to others. We are all to humble ourselves to help our fellow man. If the situation of the current day doesn’t show us how we all need to help each other, I dont know what will.
He told the truth about what was going to happen, even if none of them understood it very well. He knew he was about to die, he spoke of this being his last meal.
He was open emotionally, and they could see he was greatly troubled. Jesus knew one of them was going to betray Him, and they kept falling asleep while He asked them to keep watch. He knew the prophecy was about to be fulfilled, and that He was about to die.
He told them to stick together, to love each other and to cling to the Vine.
He told them it was going to be tough, but the Comforter would come, and there would be a Place at the end, to be safe and together again.
He told them to really, really stick together, and then they went out into the Garden, where they all fell asleep, then ran away. Even after seeing His miracles, they left. One denied knowing Him. One betrayed Him.
And all through that, Jesus continued to love them right to the end.
He had just given his last command, to love one another.
As he was dying on the cross, he asked his disciple to care for His mother Mary.
Love once again.
As he was dying, He gave promised the criminal dying next to him life after death.
Another act of love.
He asked His Heavenly Father to forgive the very people who nailed Him to the cross.
Forgiveness and love.
Humility and love.
Even in His own suffering, Jesus showed love for others.
It made me think of what so many are doing today.
The hospital staff, caring for the ill despite exhaustion and fear of the disease. The delis and restaurants feeding those who are caring and feeding others. The emergency responders helping those in crisis. The supermarket employees still going to work so others can eat. The teachers working and making sure the children are cared for and learning. The nursing home staff caring for other people’s mothers as Jesus commanded his disciple to care for Mary. The decision makers and military moving supplies to where they are needed. Everyone who is staying home to help this end.
These are all acts of love.
We’ve suddenly become a society that no longer cheers and adulates athletes and movie stars, but instead nurses, doctors, janitorial staff of hospitals.
A society doing all we can to protect the most vulnerable.
Being of service to others.
Today is Good Friday.
I’ve always thought it should be called something other than good. In Germany it is called sorrowful Friday. Whenever I see the story of Jesus’s death, I cry every time He is suffering on the cross. It’s hard to see anything good about His suffering.
It’s where God’s wrath meets God’s mercy.
It’s where Jesus pays the price for us all, so that we may also have eternal life.
He loves us to the end.
He loves us in the good times.
He loves us in the hard time.
He loves us.
That’s why I read the Bible yesterday. I was feeling sick, anxious and sad because we won’t be seeing family on Easter, exhausted from working, I got my blood biopsy report and it’s one more thing to try to understand, with a new mutation I didn’t know about, while a pandemic is raging and we have no idea about school this year or now even next year.
But He is with me.
We lay it all at His feet.
We take comfort in His everlasting love.
He loves us to the end.
In Jesus’s name, amen.



Tree Pose

The hours and hours spent on conference calls and training and communication with families yesterday was crazy.
I’m burnt out on a Tuesday.
I think we have one more week of unsettled routines and insane work hours, then I am hoping to hit my groove, along with everyone else.
The NY Board of Regents cancelled the regents exams yesterday and are releasing information today. I’m hoping this relaxes the amount of work and pressure on the kids because I am tired of seeing my girls tied to the computer all day and the added stress of schoolwork compounded by a pandemic, depression over being isolated, and constant fight or flight mode waiting for new assignments being added all day long and into the evening.
I received a message from my friend Alyssa’s daughter yesterday. I told Emily that all of my friends were holding her in their hearts. Last night I heard of another person I know who has died. We are in day 2 of the “the next two weeks will be our Pearl Harbor and 9/11 moment”. I’m really praying it isn’t going to be a death a day of people I know.
I’ve got no idea what Quinn is doing in terms of work. I was in conference calls from 8:15 until 4:30 yesterday. I texted my girls to bring me water. Once again I missed lunch. I dont know how the nurses and doctors are working the hours that they are and the trauma they are experiencing. Every single nurse and doctor should have their college loans wiped clean.
And get a free trip to Disney.
I forced my kids to go outside for a walk with me around 4:30. We all needed to see the sun.
I’m hearing that colleges are now only doing online learning this summer as well. One of my friends who is a professor feels that it will continue to be online learning in the fall. Are colleges not announcing this so parents give down payments and then are stuck? As if having your senior year end like this, having the start of your college up in the air is making it worse. Spending thirteen years for graduation and then having it all end like this…
I didn’t even realize Morgan was upset that her middle school graduation may not happen.
In NY they don’t even want us to go to the grocery store or pharmacy for the next two weeks. They’ve doubled the fine for gathering with others. I remember hearing about this in January and February in China and then in Italy saying I couldn’t even imagine what that would be like.
Remember those days?
I was talking to my mom and said we have to do all we can to find the good parts of the days. Just like the dad in the movie “Life is Beautiful”. My principals send messages every day to the kids, and yesterday gave them a challenge to do a tree pose. I have some kids on my Remind app, and a bunch of other families I have to text separately. I sent them all the picture of my principal and asked them to send me the picture of themselves. All day long I got pictures of my kids and then shared them with the others. It was beautiful and I felt their excitement as more and more sent pictures. I made one big collage of all of us and sent it at the end of the day.

Community and communication is what will help us get through this.
Do what you need to do today to find the good parts and make something special. Either a memory, or a painting, or dance around your house with your loved ones.
Those moments matter.
May we have many more beautiful moments in the days ahead.
In Jesus’s name, amen.



Her Death Should be Counted. Her Life Mattered.

My friend died yesterday.

I’ve been up through the night.
I felt nauseous and so sad over finding out my friend died. I feel angry too.
She was a teacher in a NYC public school. Her posts looked like mine. Railing against the mayor and Cuomo for not shutting down the schools earlier. Trying to figure out how to teach remotely. Posting how people should be staying home. Angry they took away her spring break. She got sick. Last Thursday she posted she was finally starting to feel better, her fever was dropping, and she was finally able to start tasting and smelling again.
They would not give her a covid test even though she had all the signs.
Which means… her death will not count.
Which means that whatever Cuomo and trump were saying yesterday about deaths going down yesterday was a lie, because my friend was not counted.
How many others are dying that were not given tests?
She had just posted the night before. Then? A former teacher of hers who I am also friends with sent me a message. I frantically looked on her page and saw her post from yesterday but nothing else, so I sent her a message. I clicked in her comments and then her friends pages until I found them.
The posts about her dying.
I burst into tears. I gagged and felt sick.
Morgan ran and got me water, and rob told them what happened.
Then the president was on and a reporter asked Dr Fauci what his thoughts were on a drug combination and the president refused to let him answer. It was embarrassing and horrifying to watch. The president spent most of the time saying to get ready for a horrible week, then was nasty with reporters, as I sat there saying, “But she was getting better… she was getting better.”
Another expert got up and said we should not even go to the grocery store for the next two weeks.
Rob had just gone to get us supplies.
My friend did not have cancer. She sent me prayers and messages. She was kind. Her death matters. Her life mattered more.
Stay home people.
Her 19 year old daughter who was the light of her life is now motherless.
Stay home.
Today I have to get up and spend from 8:30-11:00 on a video conference for special education transition meetings, then an 11:00 zoom on a district grade level meeting where we still have to figure out how we are going to continue to teach this new way, then a 1:00 zoom meeting on a digital learning platform. I have to release new assignments for today on a platform, check work turned in throughout the day, and start to think about plans for next week. I have to try and somehow help Quinn log into new programs, and keep Madison and Morgan calm because their workload is insane. They are starting to say why bother, because the regents will probably be cancelled and the AP exam is now a joke.
All while mourning my friend.
All while exhausted from my first dose of immunotherapy.
All while hearing politicians play politics and be nasty and spiteful and reporters saying over and over how bad it’s going to get.
All while worrying for the safety of my sister and other police officers.
All while worrying about my parents and especially my mom who was just in the hospital two weeks ago.
All while hearing from my nurse friends how this virus is like nothing they’ve ever seen, they have anxiety going into work because it’s like a war zone, their ICU beds are running out.
All while hearing the next two weeks will be horrible as the week begins with my friend dying.
So, parents…
Keep your kids home. No play dates. No letting them go to the beach or park to meet up with friends.
If your child is overwhelmed with schoolwork, email the teacher and tell them.
Have patience with teachers. I’m not the only one trying to figure this out with so much other stuff happening. We are still here for the kids.
I’m praying the news and politicians are all wrong.
We will see.
Please keep my friend Allysa’s daughter Emily in your prayers, as well as her family and school.
Her death should be counted.
Her life should be remembered.
May today be a peaceful day and everyone stay home, healthy, and happy.
In Jesus’s name, amen.



Palm Sunday and How to Be Like a Donkey

It’s Palm Sunday.
Today is the day where Jesus was hailed as the King as he entered Jerusalem on a donkey. The people took off their garments and laid them down and waved palms as they cheered “Hosanna!” They had heard about what Jesus had just done with Lazarus. They had read the prophecies from 500 and 1,000 years earlier that the son of David would come on a donkey. It’s the first time Jesus allowed the adulation.
But He knew what was to come in just a few days.
Why was it a donkey that He chose to ride into town? Maybe it’s because they are known to be stubborn and stupid , yet the animal immediately surrendered its will when called by Jesus.
How quickly the people turned on Him, in just a matter of days. The mob that cheered for him with palms ended up sneering at Him as he was whipped and had thorns digging into His head days later.
Yet Jesus still said as one of His final words, “Forgive them, Father, for they do not know what they’ve done.”
I pray He still is asking His Father to forgive us.
I’ve been working ten to twelve hour days trying to figure out how to teach kindergarten online, keep the children calm and happy, make sure my own children are ok, and now research what being triple positive means all of a sudden after being her2- for the past three years. Having some PTSD from the side effects Tuesday and thinking I was dying alone. Living through a pandemic. Worrying about my parents.
So I decided to take a walk to the beach. Sometimes I go the the sound, and sometimes I go to the bay. I never go to where the people are, instead I walk on the private beaches where I spent my summers on the sound, or sit by the boat slips on the bay because there is never anyone there.
I didnt want to waste a surgical mask, so I made my very own lularoe leggings no sew masks I figured that would be safe as I always walk across the street if I see someone coming, and stay away from people in general.

I was shocked when I got to the boat slips. There was about ten teens or so, having a party. Music, being loud, screaming. They were all hanging out at a picnic table. I made sure to walk down the boat slip next to them so they could see someone was there. They got even louder. I know these kids. They are local kids. I know their families. I was angry. I then debated if I should text their families and ask if they knew what was happening, or should I call the police? But I also know the police are overwhelmed with covid cases and dealing with stupid kids is the last thing they need.

It became clear to me that families who allow their teens or children to party or even if they just hang out do not care about my life.
I am collateral damage.
Entitled and privileged are the words that came to mind.
I know it’s hard. I know it’s sad.
Believe me, I’ve been living hard and sad for years. But you all have a light at the end of this covid tunnel. People like me? It’s just one detour in the long dark tunnel we’ve already been in.
So now, I cant take a chance anymore and go to one of the few places I found peace. It’s yet another thing I give up because those who won’t die don’t care.
If you don’t live with the person, you should not be with the person. Period. It’s like the sexual diseases lesson. If you have unprotected sex with someone, you are having sex with every other person that partner had sex with. You don’t know where they’ve been or who they’ve been with.
Since there aren’t enough PPE for everyone, (condoms in the sex scenario), use abstinence. Just don’t do it.
On the walk home, I prayed out loud for Jesus to protect me and my family and especially my parents. I asked for protection for the police, especially my sister. I asked for protection for my nurses and doctors. My feed is full of my nurse friends coming home crying and exhausted, and then going back the next day full of fear and anxiety. Then? A red bird flew by. I am praying my prayers are answered.
A bright spot yesterday was when one of my students from last year put up little tiny hand signs in his front yard thanking the essential workers and also reminding people about staying safe. His mom asked for people to honk, so I decided to go honk. He was outside when I drove by and we talked from across the street. It made my day. My sister was working and she met him last year when she visited my class. He loves the police, so she decided to stop by in her patrol car. I texted my principals and his teacher a video the student made saying how he misses them… and my principal decided to drive by the house too. Three visits by a teacher, police officer, and his principal. It made his day.

This is going to continue for a while, especially if people don’t listen. My state has the most cases by far, and Long Island is not slowing down. We need to listen. We need to force our kids to stay home and away. It’s not that we are stuck at home doing nothing. We are staying home and saving lives.
That’s doing a lot more than nothing.
Some teens in decades past had to go to war to save lives. Now? Just stay home and play video games or FaceTime and eat warm meals in your own bed and do it for your country. It’s ok to be sad or upset about it. It’s normal. But please, don’t take chances because you’ll be ok. It’s not about you.
For the first time in a long time we are not getting palms. That’s ok.
Our prayers aren’t always answered, but the promise to always be with us rings true now more than ever.
Today, may we all try to be like the donkey, and surrender our will to serve Jesus and others.
In Jesus’s name, amen.



Keeping Normalcy and Positivity at the Center

Yesterday was another very long work day, full of lots of different emotions. However, today I am just going to write about the good.
My kindergarten team had a zoom meeting with my principals and having a grade level meeting where concerns were heard and little victories were shared was helpful. Having principals who listen on their tippy toes, have empathy and take notes is a blessing, especially during times like these.
The meeting after the meeting is always a good one too, and having colleagues who you can laugh and cry with makes it possible to keep going and not feel alone and lost.
My school had shirts made for April for Autism awareness. I wore mine yesterday as we would usually wear the shirts on Thursday. Keeping traditions during challenging times helps.

Having parents who are patient and try new things with their children is amazing. Many are using google classroom, but that is not a platform that is user friendly for kindergarten. We made an executive decision to use seesaw, and yesterday? It made me smile all day long. Each morning I post new activities for my students. They can use their phones, tablets, computers and listen to stories, complete a math problem and draw a picture on the screen, build words with letter tiles, write stories, take videos of themselves, and record their voices explaining what they did. Then I can respond by typing a message or record my voice praising their work and giving them extensions or teach a quick lesson based on what I see them doing. This way if there isn’t a parent at home who is literate, the child still understands what I want them to do and get to hear my voice. I also added my teaching assistant, ELL teacher and librarian so they can add comments as well.
I’m still learning how to use it, and am taking three more classes on it, but more kids are signing on each day, and I feel like there is a glimmer of normalcy in their day by them hearing the voices of their teachers.
I also heard from three members of my team. Madame swoosh emailed me and will not be coming this spring. She will be back in the fall. I love her, and her daughter, and look forward to their energy work in the fall.
My herbalist called me to check on me. He is sending my new formula today and said to take his tea at least three times a day. He feels confident still we can get this under control.
I also got an email from Erin, Donnie’s assistant. I laughed because Donnie is happy i had such a serious side effect as it means it is working, and he is even hoping I get the rash as well. Erin said he agreed with my decision to not take steroids as a pre medication next time as it will lower the immune system and we are trying to raise it with the immunotherapy.
She also told me that the film they made about me has been nominated for an award in the New York Film Awards. I’m happy for the Mederi Center as well as for Jared, the filmaker. He was amazing to work with and I hope he wins.
I was looking through my phone for a picture and saw a tik tok video I did for my friend Sharon at my echocardiogram. It seems like it was longer than four days ago.

It’s challenging to keep the kids out of a depression at times. The girls still have a ton of work, and become anxious all day as assignments come at different times of the day. It’s like living in a constant fight or flight response checking emails. I’ve made a suggestion to have all assignments posted by a certain time and that’s it. I’m hopeful that clear communication can ease this challenging time.
The state needs to let these kids know about the regents. Working so incredibly hard and being worried about a state test is not good for their mental health.
I had my kids talk to my parents on the phone. They miss them so much. I took a picture of Quinn’s face as he talked to my mom. My nieces also face timed my kids. Connection is everything.

My wall is becoming more and more somber. Cancer patients having trials stop. Treatments postponed. Friends who have parents in ICU and on ventilators. Friends worried and having panic attacks of just going grocery shopping, something we didn’t even think to worry about a month ago. People missing human contact. I’ve shut off all the news during the day. It’s for my mental health. Hearing over and over about immune compromised people dying after seeing my white blood cell count number this week was scary.
Today is another work day. I’ve got assignments i just posted so they are ready for my students. I’ve got a zoom meeting to learn more about seesaw as well as another zoom meeting. I used to laugh whenever I used the work zoom in writing with my kinders. Now?
I can’t believe my work life revolves around zoom.
It’s Friday, and Disney plus is releasing the movie onward. I’m not sure a movie about kids trying to reconnect with their dead dad is best for a family with a mom who has terminal cancer during a pandemic… but we will try it.
It’s got to be better than Tiger King.
For all the frustrated parents out there, I get it. I see you. Do what you can to keep sane and keep your kids happy. Email your teachers because they are dealing with a lot and may not be aware of your struggles. Communication and working together as a team has never been so important. Don’t rely on rumor mill. Get direct answers.
For all the parents still having patience with the teachers, thank you. If you only knew what is going on behind the screen… I want to cry every time I get nice words from my families thanking me for what I’m doing. So go ahead and send a thank you if you feel like it. A little encouragement goes a long way.
Especially during a pandemic.
In Jesus’s name, amen.



We Are All Doing the Best With What we Have and Where We Are.

I got pretty angry yesterday.
It was after I got sad.
Which was after I had spent ten hours in front of my computer working on answering emails, sending out remind messages, responding to seesaw work my kindergarten students submitted and making little voice recordings for each child on every piece of work, talking on the phone to colleagues because I can’t just walk over to their rooms and ask questions, texting all day about what comes next in our plans which we are working so hard to make simple yet challenging and equal for all, and didn’t eat lunch again because I realized I hadnt eaten at 3 and by then it was too close to dinner, while also occasionally calling out, “Are you kids still working?”
I took a “break” at six thirty and went to check on my three children who I haven’t sat with or checked on since last Monday when we were told to come up with something in two days time to give to students, and haven’t stopped working since.
Quinn is ok, but misses social interaction with friends. Maddie is frustrated, because she loves school and challenges and is now doing work all day long with no clue how her AP modified tests will count, if she will even take regents, and no matter how hard she works on assignments, her grade may just end up as a P for pass.
Then? I checked on Morgan. I sat on her bed, we talked, and I remarked her hair is getting long. That’s when she showed me.
She has another bald spot. Her alopecia is back.
I asked why she didn’t tell me, and she said I’ve been so stressed with work she didn’t want to get me upset.
Not I was so stressed because of the cancer…. but freaking work.
Then we ate dinner, and my kindergarten team continued our communications and worked on something to cheer up the students to send to them each day for the next few days. Then I cried on the couch and my colleagues said they’ve been tearing up too.
This is after seeing all over Facebook parents who complained that their kids had no work for two weeks, and now complained their kids have work. Some districts told teachers exactly what to do, and some said just do something and do it fast. Some districts have communities that are vocal about supporting teachers, and some have people posting to email the BOE and Superintendent if you don’t hear from your child’s teacher.
During a pandemic.
How about, email your child’s teacher and check in? If you don’t hear from them, email the principal? If you don’t hear from the principal, then email the Superintendent?
Even better, if your child’s teacher has been staying in contact during a PANDEMIC, go ahead and email the BOE and Superintendent and say how thankful you are that in this unprecedented time, this person is still taking care of your child.
I have several colleagues who have lost their parents during the past two weeks. People I know and love. They are STILL working through their grief. In normal times they would have taken off to process this huge loss in their life. Instead? They are trying to get through their pain and learn a whole new way of teaching.
I dont understand how people can point fingers during a worldwide crisis, and still try to make teachers look like the bad guys?
My children’s teachers have been communicating with them. My middle schooler and high schooler have been self sufficient. Quinn’s teachers have all been fantastic. They are all riverhead teachers. They have all been fantastic. There is no one else I would want to work with my children right now.
Yes, there are a ton of sign ins and codes and platforms. If you think signing in to them is hard and a pain, try figuring out how to retrieve everyone’s log in codes and passwords and then explain it in English and Spanish and try to give step by step directions for virtual log in to families whose children are FIVE. I even printed them all out, cut them out, wrote alternate codes, taped them to paper, took pictures of each one and texted them individually to each family.
For fun, let’s add side effects from immunotherapy, and still shaky from having the rigors attack during infusion the day before and being afraid you were dying alone.
So please:..
Everyone is stressed.
It’s hitting everyone that this is going to be longer than anyone wants.
Everyone is trying their best, and sometimes people who point fingers should instead put their hands together and clap for the very people they are trying to attack. Praise does so much more for people than pointing fingers.
I went to bed feeling exhausted, and a failure as a mom and a teacher in this town.
I got another email at ten o’clock or so from my principals. I was almost afraid to look.
it was a picture of a handwritten card.
Thanking us so beautifully for all we did, and simply stating they “see” us, even though we aren’t in the same space. It said a lot more, and I cried again.
We are going to get through this.
It will be easier if we take deep breaths, stop when you are overwhelmed and remember to live even when life seemed to have come to a stop.
If you are overwhelmed or your child is overwhelmed, email your teachers instead of complaining on social media. Social media won’t solve your problem, but the person you email and have communication with probably can. No one wants this.
So let’s work together to try and do whatever we can and whatever we are able for ourselves and our children.
Today is a new day.
Let’s try again.
In Jesus’s name, amen.



Rigors, Mouse Power, and the Cloak of Immunity Immunotherapy

Once again, yesterday was a day that was both beautiful and scary.
I have anxiety every time I go for treatment, so add on a new therapy in a new place and without rob by my side and everyone in masks because of a pandemic that they say could kill me if I get it so stay isolated…
Deep breaths going in.

The Southampton Phillips Family Cancer Center is beautiful. I had my own cubicle with a skylight and glass wall dividers with a scene of beach grass.

It turns out that my nurse knew a friend from high school, one of my secret nurses, a mom of a young man who both helped with my fundraiser at Jeni’s Main Street Cafe, as well as my sorority sister who gave her a heads up I was coming.
God always puts people where and when I need them.

It started out smoothly, we accessed the port, and waited for labs to begin the infusion. I walked to my window and there was rob in the parking. I called him, he got out of the car and sent me an air hug and love.
Every girl who grew up in the eighties wanted a John Cusack moment from Say anything where he holds the radio up.
That was my moment.

The situation was not one I ever dreamed, but let me tell you, seeing him in the parking lot and as what I needed to breathe.
The herceptin was administered over an hour and a half. I did a Facebook live video to show my friends I was ok. I sent a video to two friends.

I called another. I spoke to my mom and dad. My four year old niece snuck a call to me in her bedroom, and we giggled together.
It wasn’t too bad.
The perjeta was administered and when it was almost done I felt like I was going to die.
I had spent most of the day feeling warm, so warm that I didn’t take a blanket and took off my sweater. Suddenly I started to get very cold and put on my sweater. It didn’t help. Then i asked for a heated blanket and my nurse Laura looked at me shivering and said she was just going to sit and watch me. Then I asked for another and another blanket.
I could not stop shaking. My whole body was out of my control. Laura got another nurse and they stopped the infusion. I was 95% done with it. They decided to give me steroids. That didn’t help quick enough so I got 25 dose of Benadryl right into the port. Usually I would get it piggybacked with saline because it hits you hard when administered alone. Then they gave me another 25 of Benadryl. They tried to get me to drink hot tea, but by the time my shakes subsided enough it for them to hold up to my mouth it was cold.
I thought I was dying. That an allergic reaction was going to kill me and I was alone without my family. I tried to call rob but couldn’t figure out my phone. Finally I got hold of him and Laura explained I was having a reaction.
Imagine how rob felt knowing he couldn’t be with me.
They kept monitoring my blood pressure and it had spiked high, and they kept the oxygen thing on my finger. I worked and worked to get the shaking under control, but couldn’t. It lasted a long time, about forty minutes. They called my doctor and she said i would not get the rest of the dose. My breast also started throbbing, so badly that I wanted to cut it off.
They need to watch me for an hour after my body calmed down, and since I was the only patient left in the place, and because it was so severe, they let rob up with precautions.
I was so out of it they had to use a wheelchair to get me to the car.
I cried all the way home.
Apparently what happened is called “Rigors”.
The perjeta has mouse protein in it and my body may have recognized it as an invader and reacted. Spider man got bit by a spider and got spidey powers… I wonder what will happen to me? Will I like cheese more?
Immunotherapy also revs up your immune system. My immune system has not been able to see the cancer cells so they kept in growing. Yesterday the Harry Potter cloak of invisibility was ripped off the cancer cells and I am saying the immune system began to unleash full force and fury at the cancer invaders.
Like…”What the bloody hell? How did those guys get in? ATTACK!!” All the pain in the breast was my immune cells kicking the crap out of the cancer cells.
The hardest part was walking into the house all drugged up and out of it. My kids saw me like that, Maddie went to her room, Quinn looked scared and went to his room, and Morgan stayed on the other couch by me. Rob went and explained to the kids I was ok and had a reaction and just was drugged up.
Seriously. Today starts distance learning for them, I have to start distant teaching and we all just had a traumatic day… during a pandemic… after being isolated for weeks now and still have weeks to go.
The Benadryl wore off hours later but then the steroids kicked in around 11 and I had some more side effects.
I also spent last night praying so hard for a riverhead police officer who was in a horrible car accident while in pursuit of a criminal . Please continue to hold him, his family, and all of the officers and first responders who went to the call as well as know and love him.
My sister had been in an accident years ago and her patrol car flipped. It brought me back to that moment. I texted her late into the night as she stayed with her officer that I loved her.
It was not a stellar day for the women of my family.
Today the distant learning plan is being released. We were given two days to prepare a plan and handed it in a week ago. Today parents will see it. Please be patient. It may have been “spring break” since Thursday, but my whole school has been working long days trying to teach ourselves learning websites, contacting families, and so many zoom meetings and texts and emails that I have lost count.
I was in a zoom last night for an hour and half with my colleagues. I was still out of it, but I can tell you there isn’t anyone working harder than the teachers. We are the invisible ones lately, but I’m taking off the cloak of invisibility and telling you… we have been working non stop to track down families, making sure they are getting food, and wondering how this will all work while working blindly and remotely.
I love my colleagues, and we are fighting for the ones who don’t have access to technology, the ones who will be left behind in all of this mess. Education in America means a fair and equitable education for all. FOR ALL. No matter your skin color, income level, language, or ability.
Even during a pandemic.
Today it begins.
The distant learning.
The homeschooling or “crisis learning” as I call it.
I’ll be dealing with side effects and trying to teach my own kids and keep track of their learning while also working and doing the same for 23 other children.
Pray for us all.
And please… stay inside. I wore an N95 mask yesterday for my own protection and now know why medical staff have bruised and red faces. It hurts your ears with the band, it hurts your nose where it is fitted.

And feeling like you are dying and knowing your loved one is in the parking lot is an experience you never want to have. Trust me.
So stay home. Stop the driveway drink hang outs. Stop letting your teens get together. The sooner we do this, the sooner we get back to our lives, and the medical staff and first responders can rest.
They are all heroes. My nurse knew I was religious, and when I was shaking and crying and wrapped in a blanket cocoon she held my hand and prayed over me.
Thank you, God, for sending me Laura yesterday.
I’m going to try and sleep another hour or so before getting the kids up and ready for school and myself ready for work.
May it be a peaceful day.
In Jesus’s name, amen.