That Rogue Outlier

I’ve had another scan. Two actually. My world was rocked a little, but I’ve been searching for answers, I’ve been still, and I’ve kept living my life.

Turns out the new chemo I’ve been on has kept the cancer away from the brain, the lungs, and put the bulk of the cancer in the bones, breast, liver and lymph nodes to sleep.

However, and there is always a however with me it seems… there is a new enhanced lesion in the liver. My oncologist calls it “The rogue outlier”. I have grabbed onto that name, and my kids have understood it all. Huge Star Wars fans here. I’ve even brought their Star Wars toys to chemo.

I spent Christmas Eve in the hospital getting chemo. New Year’s Eve too. But I’m grateful for my nurses, and we laugh at my tik toks and props that I bring with me. It’s hard mentally and emotionally going there, as many are very sick and sleeping. I close my curtains and dance to keep myself occupied, plus I’m lonely. My husband hasn’t been with me to an appointment now in almost a year.

In one of the support groups, a newly diagnosed woman was nervous.
She asked me to explain my treatment history, as four years out seemed impossible to her thanks to doctor google and cancer muggles.
“Oh, my aunt had that. She died in two years. Be strong!”

Womp womp.

I remember pouring over the cancer group stories lookin for hope. Some would share and not even realize the hope they gave to others.

I’m sharing here as I now have even more newly diagnosed women that have been sent to me recently.
Here it is…

Stage four denovo ER/PR+ HER2- with one met to sacrum at a major hospital in NYC.. That oncologist said I had weeks or months, maybe a year or two.
Fired her.
Went to stonybrook.
Ibrance which is a targeted CDK4/6 therapy with lupron injections for hormonal therapy, and soon switched to zoladex.
Pushed into early menopause.
Achieved NEAD in five months
Five months later appendix acted up and need laparoscopic appendectomy
Cancer woke up two months later
Went into a clinical trial.
Then had a spot in the liver
Port was inserted into chest for infusions.
Treated within taxol/carboplatin and the liver exploded with mets
Had liver biopsy
Went to a major cancer center in Boston to see specialist in genetic issue which was discovered through genetic testing for mutations. She said “You do know how this is going to end, don’t you?”
Fired her.
Stayed with my stony Brook oncologist
Blew through the following treatments.
Everolimus with tamoxifen
Did adriomycin “red devil”
Then switched to doxil
Had a chemo overdose/reaction with upsets down throat and in mouth and rash all over the body and was hospitalized again. Unsure if it was Stephen Johnson syndrome and had a biopsy done in my thigh.
Just an overdose and reaction.
Also was doing xgeva for bones and also switched from zoladex injection with coils in stomach to two faslodex injections in muscles in lower back/upper buttocks.
The pandemic hit and I asked for them to test her2 to see if cancer flipped.
The test came back that I was now her2+.
Did Herceptin and perjeta. Kept getting worse.
Then Navelbine was added.
Switched from xgeva injections to Zometa infusions for hypercalcemia.
Ended up with mets out of control in bones causing severe calcium issue and was hospitalized twice in two weeks, and second was for over a week. They said if they didn’t get it under control I would die from that.
Did adriamycin again.
They said I had more adriamycin than any other patient they know and can’t believe I’m still walking.
I asked for a bone biopsy as that was the biggest issue. The her2 was actually only slightly positive.
We switched to a new therapy that was just approved by FDA, Enhertu.
We then got a message that the initial result from the beginning of covid with her2 flip could have been wrong as the lab admitted they used an expired testing agent.
(I could have been on the wrong chemo with Herceptin and perjeta…)
I was relieved I had the bone biopsy done recently which showed there was some her2+.
We retested and now the her2 is in regular range which shows the chemo is working.
Latest scan showed most of cancer is under control except a new outlier in the liver that lit up.
Not sure if it has switched again and is resistant to this chemo or if that area of the liver has issues absorbing the chemo.
Hence the SBRT we are now looking at, but insurance has to cover.
I am considered oligoprogressive and insurance may say there is no benefit to outcome surgical and not enough data to show it is going to be good.
However, I am a clinical trial of one.
I have never missed work and worked through all treatments.
My life has value.
I plan on continuing to go for years and years.
Told her to learn as much as she can about the cancer, even if it’s scary.
It’s their job, it’s her life.
They work for HER.
She is the CEO of “Save my Ass, Inc.” and gets to decide who she is hiring to sit at her conference room table.
I also use chinese herbs and supplements, breathe, was fanatic with diet but now just try to make healthier choices, organic, juice, still eat meat. Try to move more.
Believe and pray to Jesus.
He is my secret keeper and has a great story for me.

Donnie Yance at Mederi is a Master herbalist and helping me.

That’s my story so far.
Here’s to hope and research carrying me on for years and years.

In Jesus’s name, amen.



Farewell, 2020


It’s been a year.
I started the year with ulcers down my throat, my tongue swollen , a rash all over my body, and soon ended up in the hospital. They took a biopsy from my leg, as they were afraid I had a disease called Stephen Johnson syndrome which would kill me.
Turns out, it was a chemo overdose.
And that, my friends, is how 2020 began.
I should have known.
On March 12 I told my principals I would not come in again. There was a disease that may close our schools, and I couldn’t chance it. It didn’t matter, as schools closed the next day…
For the rest of the year.
In April I was told there wasn’t anything else they could do for me chemo wise, and we put my life solely in the hands of my herbalist. We went for a blood test, it said the cancer flipped, we cried it was a miracle, and I began a new line of chemo.
And got worse.
And worse.
Hospitalized again.
Got out.
Got worse.
Hospitalized again for over a week, had multiple doctors say I would die soon, cancer was all over, calcium was going to shut down my organs and began the red devil chemo again.
Lost my hair for the third time.
Had another bone biopsy from the spine. Was awake the whole time and heard the drill as it drilled into my bones.
Discovered a new chemo we could try that was just approved.
Discovered the other test in April was probably wrong.
Found out my neck was broken but couldn’t have surgery.
Started new chemo.
Set up my classroom, then emptied it and gave my room away all in one week.
Started a new job as a virtual teacher and had children from all four buildings, and was maxed out. Never worked so hard in my life.
My daughters senior year was non existent. The budget failed, and I will forever remember the people who were behind the big push to have it fail. They will never be forgiven.
Or forgotten.
They and the town know who they are.
Anyone who hurts kids… including mine…
Will always be known as such.
That’s the scorpio in me.
Lost several friends to cancer and covid.
We have been alone in the house for almost a year now.
An ugly election.
Confusion over vaccines.
It’s been a year…
And today I start the last day of 2020 once again in the hospital, getting fluids for dehydration from chemo.
How am I feeling?
Believe it or not….
Despite everything, I can still say it’s been a beautiful year.
I’m alive.
I AM ALIVE, damnit.
Despite the ugly toxic people who voted down the budget and relished in badmouthing this district which has helped raise my children, my kids are still full of hope.
And they are better people than all of them combined.
Madison is getting scholarships because of all that Riverhead offered. Morgan is finding her little tiny tribe, person by person. Quinn is too. Some kids care more about being popular or social media or being cool. My kids care about their mom staying alive and safe, and the friends they have now wear masks and understand. The people who check in on us are the ones to keep.
I said maybe this happened to our family because other families wouldn’t have been able to handle this all. Other kids are drinking and vaping and partying with other kids, and their parents are fine with it.
My kids?
They are alone most of the time, but happy because I’m still here. They’ve learned early what’s important.
As a teacher I’ve discovered that it’s possible to love children through a screen. To teach them to read without ever holding a book in their physical presence.
During hard times, you learn lessons.
But you also unlearn.
My friend Nalie wrote about that.
Lessons unlearned.
“Seeing is believing”.
Sometimes you have to believe first in order to see.
“Crying is a waste of time”
Crying makes space. It’s a release, then makes room for the breath.
“The more the merrier”
Sometimes less is more, and the people who you surround yourself with matter. The ones who show up will show you that you matter. Especially if they wear masks and let your children know that they respect their mom’s life too.
“It’s better to give than receive”.
You are worthy of receiving, and by allowing others to give, you give them the gift of being able to give.
“Be happy. Be this. Be that.”
Sometimes it’s ok to just be.
Just… be.
“It will be better when…”
Nothing is promised. So make it better now.
There may be more cancer in this body now at the end of 2020 than there was in the beginning of 2020, but there is also more of other things.
I don’t know what 2021 is going to bring. Every stage four patient wonders if this is the year that will be the year engraved on their tombstone.
I know, morbid.
But also the truth.
Yet I know this as well.
This past year, 2020, is not the year that will be engraved on my tombstone.
After several close calls when we thought it might be, 2020 will fade and gets smaller and smaller into a tiny particle…
It will become part of the dash.
The first date is the date of your birth, the day that was full of joy.
The second date is the date of death, a day full of sorrow.
But that dash, that line…is all the days in between.
Today, this year, 2020, which was so hard for so many, becomes part of that dash.
That line.
A blip.
For all of us.
I don’t know what 2021 will bring,
But I’m all in.
I’m here.
I’m alive.
I’m grateful.
I’m ready.
I’ll walk out of the hospital today for the last time in 2020.
Ready to walk into 2021…
Still expecting miracles.
So friends, in 2020, some have learned to be kinder and gentler to others and ourselves…
May 2021 be kind and gentle to us all.
In Jesus’s name, amen.

Four years…

I’m still here.

Turned 48 yesterday.

Still teaching full time, virtually, out of a small room in my house with puppets and 27 amazing little souls that keep me laughing all day long.

I almost died this year. But I didn’t.

A worldwide pandemic, my own children pivoting every day between virtual and hybrid learning in a district with a failed budget is hard. Throw in a senior who has no senior year memories now while trying to apply to colleges… it’s hard.

I’ve had so many more people sent to me it’s a bit overwhelming and I stopped blogging. I hope none of you went searching obituaries. If you miss me, think of me living and dancing. I found tik tok, and now do tik tok videos during chemo. My nurses think I’m nuts, but sometimes they dance with me.

Even when it’s hard, we keep dancing.

My kids..

My husband …

All of us.

Someone asked me the secret to not going down the wormhole all the time after a terminal diagnosis.
Here’s the secret.
Some days you are the starfish, gasping for air, having been suddenly thrown out of your life and thinking death is a breath away.
Some days, you are the person walking the beach, seeing the thousands of starfish, knowing you can’t save them all, but even just picking up one, putting them back in the water and whispering, “Keep breathing, keep swimming…” makes a difference.
When I got the call four years ago today, I was totally the starfish. I didnt even know it was stage four, just the thought of chemo and surgery and radiation had me sobbing all night for weeks once we put the kids to bed. Once we heard the words from the first doctor that it was terminal, and time was now measured in weeks or months, a year or two if I was lucky, there was no peace.
But then people started coming… or I went and found them.
People who told their story, and by telling their story, they gave me hope.
It wasn’t easy to find them. Many want to forget about the issue, and by taking about it, it stays in the mind.
But I found them.
My lighthouses.
Ann Fonfa was my first lighthouse. The annie Appleseed foundation is amazing, and she is amazing, and because of her and my miracle maggie, I still drink three packs a day of brown muddy tasting Chinese herbs from my secret chinese herbalist, one of the most brilliant herbalists known in the world. Dr Snuffolufogus as I call him, as we meet in the alley like big bird and snuffy in Sesame Street.
Rick Shapiro is another. He went out and wrote a book called Hope Never Dies, and it’s full of people living for years and years with a terminal diagnosis.
The Mederi center and Donnie yance, one of the most brilliant minds you’ll ever find, who have always kept pushing me and educating me on supplements, chemo, targeted therapies.
All of my nurses and medical team who never gave up on me. This spring I had doctor after doctor in the hospital look at me with the death look. When my own doctor came in the fourth day, I cried and told her about the looks. She said if she didn’t know me, she would also feel death was coming, but she knows me, and has faith I would somehow make it through.
I’m the only one if her patients to ever live through that crisis.
I’ve made amazing friends, women I’ve never met… and then spent nights crying when they passed away, full of grief at the loss, fear I would be next, and guilt it was them and their children who lost a mom instead of me.
Stage four survivors like me who advocate carry an invisible backpack all the time, and inside we hold the memories of the ones we’ve lost, as we pick up their flame and keep going.
My backpack is so heavy some days.
I get whispers from God. Either you think I am a whack job or you believe, and I’m finally at the point in my life where I dont care. Another gift from age and a terminal diagnosis.
I got a big one yesterday.
It literally woke me up on my birthday. I had someone sent to me recently who was an early stage breast cancer survivor who has suddenly found herself in stage four land. She has been waiting and waiting for a clinical trial to start, and I get the anxiousness to just begin, yet it’s an unknown. I kept seeing her face and a clip from a kelly Clarkson show. The clip was the man who invented herceptin and perjeta twenty five years ago. Then? They had a woman stand up in the audience and introduce herself. She was told she had stage four breast cancer, mets all over the liver, and go home to make final preparations. She found this trial… and she is still kicking it twenty five years later.
That’s the thing.
We never ever know what coming, and we tend to believe the worst is on its way.
But think.
What kind of life would that woman have lived if she spent twenty five years of this amazing gift crying every day it would stop working?
I was busy yesterday . Literally nauseas and live all day long, but that clip kept coming to my mind and her face, so during my fifteen minute break I sent it to this new friend/stranger a month ago that I get God whispers and here you go.
Her response?
She literally just heard.
The trial is beginning.
There you go.
Listen, it’s not easy. On top of stage four denovo, I’ve got a rare mutation which makes me a unicorn in the cancer world. I cant have radiation. I’ve had multiple biopsies, appendix removed, spent weeks in the hospital, almost died twice, been on eleven therapies, lost my hair three times.
But I work every day to not waste a single day.
I’m on a new drug. I mean… just approved. I’m following scientists in twitter and also clinical trial phase one patients who are sharing their story. One woman is now on treatment 38 of a once every three week cycle. Why can’t that be me? And why can’t I become like the twenty five year survivor from kelly Clarksons show?
That’s how you keep going. And if you find yourself gasping for air, stranded in the beach, hang on. Look for the ones who will run to you and put you back in the water.
Just keep swimming.
Thank you everyone for the beautiful birthday I had yesterday. You ALL helped me get here, by throwing me back in the water every day by praying for me, sending me love, and believing in the hope that this story will go on for a long time.
Here to many more years of believing the good story is coming, and that no matter what, we are going to be ok.
In Jesus’s name, amen.

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.