Back From the Brink

Back from the brink.
That’s what I am.

I’ve had hypercalcemia since April. If you look it up, you find this fun little nugget…
“Eighty percent of patients will die within a year, and there is a median survival of 3 to 4 months. The main pathogenesis of hypercalcemia in malignancy is increased osteoclastic bone resorption, which can occur with or without bone metastases.”
Hospitalized twice.
Once for a whole week with over thirty injections into my stomach.
Had my oncologist tell me she never had anyone as bad as me that survived.
Paid out of pocket for a medicine that paper pushers in an insurance company deemed wasn’t approvable so I took it off label… and spent a crapload of money during a pandemic on it.
But yesterday?
My nurse angel walked in and said she was sorry she had to stick me in the hand because the port wasn’t working fast enough for us, but it was worth it because my calcium was 9.8. The lowest it’s been in months. It didn’t even have the “H” next to it which was essential a middle finger to me saying “tick tock” on my hypercalcemia clock.
The entire ward of nurses became excited when they heard. I knew from their faces and non answers the past few months when I begged for stories of people who lived through this that they didn’t have any.
Now they do. We even danced a dance I do with my kindergarten.

Pop Si Ko from GoNoodle group KOO KOO KANGAROO!

My oncologist does too.
Even the oncological pharmacist came out and said their office cheered when they saw the calcium come back.
Yes, I still got hammered with the heavy chemo yesterday. We are still waiting for further biopsy results to confirm the third line of cancer, which will change the therapy I receive in two weeks. It will be a hard few days, and I was up all night from the steroids.
I did some school work and looked at other district’s reopening plan. It’s an impossible task. But teachers always seems to do the impossible, dont we?
I also messaged the leader of our sewing mask circle for the kids in our district. We’ve got people donating money and masks, and people donating time to sew masks. Our goal is to have enough cloth masks for all the students in the district, and maybe even two.if you can’t sew, you can donate money or time by cutting fabric and prepping for the sewers.
I also am in a group of parents trying to help the students in our district. Our budget failed again. The only one in Long Island. For each one of the angry toxic people, we’ve found two who want to help build up constructively instead of just tear down.
My daughter is a senior. Yes, covid might take it all away this year for her. She is a three varsity sport athlete, musician, in theatre, and this year had a packed schedule of electives she will need to help her with college. We are relying on scholarships because all of our money is in cancer care. Other kids in other districts should they get some sort of a year will get a leg up over the kids in our district now when it comes to scholarships. The inequity hammer keeps hitting our kids.

Two days after chemo I rallied for my kids…

Yet there was still hope she could salvage some of her year. If the virus receded spring was our beacon of light. The community voted it down and took it away. For the children being tossed about in the waves, the lighthouse light went dark. My heart is broken for her. She has dealt with a mom with stage four cancer, her junior year cut short, and now her senior year destroyed. Thank God for the NJROTC. They are funded by the Navy, and she was named Commanding Officer. She has already zoomed with her instructors, has a weeklong virtual planning session with units all over the eastern seaboard, and is gearing up to give kids who had to much taken away a glimmer of community. You don’t have to enter the military when you graduate, but those who do have done well. One of my former first grade students is actually the recruiter for the marines. It’s amazing to see this little boy I loved grow into a man who changes other students lives.


God bless them.

Madison and my former first grader. God bless them both!

Every other community during a pandemic voted yes. This vote was based for many on sending a message to adults, and the children are the ones left with the bottle of dreams on paper being tossed into the waves.
Thank God for the helpers. The ones who always work to bring the positives out.
Those are my people.

Today we may see my school district’s plan they worked on all summer that they had to send to Cuomo, all while doing a budget revote and a transition in administration with community uproar. Talk about being in the brink. God bless everyone who worked on this plan… and knowing that no matter what…No one will be happy. The only way people will be happy is if the virus disappears and we go back to how it was. That won’t happen anytime soon. And no matter what the district releases, Cuomo has to approve and then can still close us down. I’ve said we are starting before Labor Day, when people gather and celebrate. I wouldn’t be surprised if he closes school and goes virtual for two weeks to start as a preemptive measure due to Labor Day parties and travel.
It’s all so much.
We are all on the brink, arent we?
Feels like we are on a cliff, some feel like we are already falling.
But listen…
After being so incredibly sick the past three months, isolated, feeling like a crazy person keeping my kids isolated, having multiple doctors and residents on rounds looking at me like I was on my death bed, working harder than I ever had in all my years as a teacher even while in the hospital on the so called death bed…
I’m here.
Back from the brink.
You know how?
God put people in my life who BELIEVED in me.

I am in no way saying that the others before me who didn’t make it didn’t have the same.
I dont know why they didn’t make it.
But maybe because I did…
Insurance companies won’t tell patients that a drug that costs $1600 a month that their doctor said is their last chance and to pay whatever it takes… maybe they will cover it.
And others will come back from the brink.
Our district is on the brink.
But maybe the ones who work with compassion, civility, kindness, empathy, love… maybe we will begin to drown out other voices and show action is louder than words, and pull our district and students from the brink.
So no matter what comes our way, know we can always find a way out of impossible situations.
And slowly…
Come back from the brink…
In Jesus’s name, amen.



Still here…

It’s been almost two months since I last wrote. There have been a few reasons.

The calcium crisis was serious. I ended up hospitalized twice. The first time was at a local hospital and only for two days. I fought them on releasing me, as the hospital was not at all prepared for a cancer patient or knowledgeable about this situation. I actually taught my nurse how to use my port for blood draws. Always a teacher, I guess.

Three days later i was admitted to Stony brook hospital. I had my second covid test, which feels like a qtip is swirling on your brain. It was a long eight days of isolation, multiple injections, multiple specialist and residents. Nurses are my heroes. They became my family and support and held me as I cried when i was told the cancer spread even more. Being alone with no family is so hard… thank God for my nurses.

We have the calcium somewhat stable today. My oncologist only saw a case like this once, and she wasn’t able to save the patient. I told her that I will be her first. And I will.

We aren’t sure where we will go next with treatment. We are looking to do more biopsies as my doctor and Donnie Yance feel there could be two or three different cancers happening. Waiting for insurance to agree to doing two biopsies at once. Insurance won’t cover my calcium medicine, so that’s another expense. At least we got the cost down from $1600 a month to $600 a month out of pocket… on top of herbs and supplements and copays. Cancer is expensive.

I finished out the school year. When i was hospitalized I had my computer with me and worked all day. My nurses were amazed that I kept working as well as how I was able to send voice messages to my students all day long. I worked ten hour days many days. I had families texting me early in the morning and late at night. Some of the conditions and situations happening to them would break your heart. No one knows what will happen next. We have to come up with three different scenarios and no idea which one will be used. It’s impossible. Add in the fact our budget failed, the only district in all of Suffolk county. September will be hard no matter what. Thank God for my colleagues. We hold each other up.

The kids are alright. Madison started her Emerson college program and loves it so far. Morgan and Quinn are staying busy at home. Rob is working and supporting me every step of the way. We also got a puppy. Her name came to me one day, then we found her, and then she became a part of our family. Welcome Remi… short for remission.

That’s the update. If I dont update again soon, just envision me healthy and healed and living my best life.

Because I am.

In Jesus’s name, amen.



It’s been a while…

I know it’s been a while. I’ve been in crisis. My calcium levels have been at an all time dangerous high. This can cause kidney failure. My liver function numbers have also been at a dangerous high. My tumor markers keep climbing. I’ve started a new chemo called navelbine as well as added more injections of xgeva to try and get the calcium under control, and faslodex injections to manage estrogen. I’ve been couch ridden, short of breath, in pain, and felt like I’ve been dying for weeks. Throw in working ten hours a day or so with distance learning, my own three kids and their work, a husband whose business is not considered essential… it’s been a rough few weeks. The bright spot is that the film they made about me back in October was nominated for the NY Film Festival PR awards. It was up against billion dollar pharmaceutical companies such as Merck, Bristol Meyer Swuib and Red Bull. I got a call last week that it won. Donnie Yance and his wife Jennifer were shocked. Their little Mederi Center in Oregon beat out these giants. The other companies had huge budgets. They just had me, Jared Cruce and his small crew, and they showed up at my house with no set or script and we just told my story. Amazing.

Yesterday was the biggest treatment day ever. Here is my post from today I put up on my wall. Here’s to better days ahead.

Even my nurse couldn’t believe the amount of drugs I was getting in one sitting.
It is so important to know every single thing about your treatments. Apparently, I was given 100mg of a strong steroid when I had the rigors reaction for the first H&P infusion. I had asked for it it be cut in half and was told it would be. At the time the mix up between the two hospitals was still going on, and orders weren’t received. So the second time instead of half… I received the full dose. I kept wondering why I’ve been so bloated and gainin weight. Now I now.
Which meant that yesterday when I was checking before every drug was administered, there was concern because they said 50 mg of steroid was supposed to be pushed and I said 25. Which meant calls back and forth to my doctors office. I was told it would be too dangerous to go to 25 at this time… so 50 it is.
I did the dance for my kids and my friends who always talk about dancing through life with cancer. My nurse loved it. Cancer patients try to find joy even in the darkest of days and we support each other whenever we can. I’m friends with a 21 year old metastic breast cancer thriver with brain Mets. She dances during treatment and I dance for her. My daughters taught me a hard one to learn and I practiced on the couch the night before. As soon as the port was accessed I knew the Benadryl would be coming soon, so I closed the curtain and did the dance. My kids loved it when I came home, and it showed them that even when times are hard… we can still dance.

I ‘m a renegade…

Then she pushed the Benadryl and it was on. The hardest part is seeing so many people laying and sleeping all around me, so I like to close the curtains. Yesterday a woman was moaning and crying constantly next to me, and was in so much pain, just moaning over and over how she wanted to go home and crying. That is so hard to hear when getting treatment, and I know how she felt because that was me two weeks ago. Her husband was by her window too and a nurse was outside discussing things and comforting him.
For every person who is still complaining over wearing a mask… oh how I wish you could have seen the heartbreak and anguish on this mans face, and heard this woman’s pain. Maybe you would be a little more considerate in your posts and not so flippant about how sick people can just stay home.
Empathy is everything.
My labs are always hard to get, and getting them while sitting alone in a chair doped up on Benadryl is hard. They told me when they gave me the labs that I would need another injection of xgeva because even though calcium dropped a little… it wasn’t nearly enough. Another phone call was made because the pharmacist on site didn’t want to give the dose my doctor prescribed saying it’s too much in a three week span. Also, insurance may not cover it and it’s thousands of dollars. My doctor however, came out of her meeting to take the call and she has written papers on this specific drug and flown around the world to give presentations on it. So I got the full dose.
They gave me perjeta first, then herceptin. That was two hours. Then the navelbine chemo push over fifteen minutes my hand. Rob has the same anguish on his face when he watched me get the injection in the stomach of xgeva. When it was time for the double injection, they got the extra nurse and they let me stand and lean over the couch and face the window. Rob put his hands on the glass and I put mine on his. The pain shoots down the legs and this time one nurse finished before the other. It takes a long time to slowly push the drug in, and I just try to breathe through and not cry.
I wont forget robs face when I stood up.
He wears a mask.
For me.
But his eyes showed everything.

In your eyes…

This covid is horrible. I wish everyone who was healthy and complaining about wearing masks or being stuck at home or kids missing out on things could have seen rob’s face yesterday. He is a tough guy. But his eyes… showed pain that he can’t be inside with me. He is the strongest man I know.
I got my hot packs to put in my pants and gingerly made my way out. I felt beaten up and like I ran a marathon. Rob was right at the door when I pushed the button and I leaned on him as he helped me get to the car.
I took my mask off in the car and my face was swollen and red.

When we got home, the kids met us at the door soooooo excited that the sweetest most giving woman I know, Mary Maki, had dropped off pizza and donuts to them while rob and I were away. They were so excited that she stayed and talked to them. They haven’t spoken to anyone in real life other than when we did driveway visits to my family when I was well. Morgan was supposed to have a graduation from middle school and celebrate becoming a high school student. An eight grade awards ceremony. Madison’s junior prom was cancelled. Her NJROTC awards dinner was cancelled where they name the senior commanding staff. Awards night. The musical. A night is strings where all three of my kids were playing together. Quinn’s first pulaski concert.
They haven’t complained at all.
They’ve got perspective on what’s really important in life.
I also got a message from Bunnii from Ellen’s on Front in greenport. I met her when I took morgan to get her nails done as a treat this past winter and Bunnii is the one who met me and then gave me a wig. She sent over dinner for me and rob last night.
The amazing thing about it?
I had just gotten an email from Donnie that he is now worried about my sodium levels being too low as well. He suggested miso soup, seaweed, Himalayan sea salt and soy sauce. The dinner from Ellen’s on Front ?
Chinese style green beans with soy sauce.
Exactly what Donnie told me to eat in an email.
(And man. I’ve never even heard of this restaurant before. Rob could not stop talking about how good the dinner was and kept saying, “Where is this from???” It was good to see him happy after the day we had.)
I didnt sleep too well. The Benadryl wore off and steroids had me up, and when I slept I dreamt I was Fontine from Les Miserables. The Night before I dreamt my house was on fire. No peace in dreams either.
Today I have a meeting on zoom with my principals. I last checked my seesaw last night before bed, and woke up to 19 assignments I have to check. Distant learning is a nightmare for everyone. The governor keeps saying he may cut budgets mid year. I hope everyone remembers how this feels now. If the budget fails… or if we have to do rolling closures or split sessions… there will be layoffs as well as teachers leaving the profession in droves.
Everyone loves to bash unions and teachers, especially around budget time. Just remember how hard this has been when you vote.
Today I hope my students get my own version of Flat Stanley. I mailed then out yesterday with a version of myself and my teaching assistant. It’s like a little paper doll. I have a list of suggestions, and they can make us a home, take us on walks, build a fort, read to us etc. I also made a virtual classroom with clickable links for the kids to hear stories, songs, play games. I even gave us a puppy. That’s one positive of virtual learning I guess.

We are working so hard to keep them engaged. It’s not easy. Hopefully this will help. I have more surprises to mail in another two weeks or so to space it out.
Thank you for all your prayers yesterday. But even though it was hard, I had many blessings with Mary, Bunnii, a bracelet someone anonymous sent to me, a husband who held my hands through glass, and my three children to come home to after a long day.
Count your blessings today.
You may find you have more than you know.
In Jesus’s name. Amen.



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.