Rocky Road...

 2.23.22

Well, today was treatment #7. Bright and early, I was feeling great and ready to roll. Met with my doc and he is really happy with progress so far...and so I began my 'pre' meds (anti nausea and steroids).

...and then about 45 minutes into my main meds, shit hit the fan. Hives, extreme nausea, stomach ache, sweats, asthmatic cough, and trouble breathing. Apparently, it is not rare at this point for the body to reject one of the 3 med chemo cocktail I receive. In this case, the drug that causes most of the issues is called: Oxaliplatin.

My nurse came in, stopped the drip and called for back up. What happened after that felt like a scene out of Pulp Fiction. Ok, that's a bit dramatic, but I had 4 or so people jump into action. I quickly received a benadryl shot and an Epi-pen jab into my thigh (thankfully it wasn't my chest like in Pulp Fiction).

Pulp Fiction Visual

Eventually, I was able to breathe, the rashes/hives went away, and they were able to finish the cocktail of the other 2 chemo drugs. I was too worn out to go to teach my afternoon classes, so I went straight home to nap. 

What does this mean? Well, Oxaliplatin is a key drug in my fight so the doctor wants me to get as much as possible. That means that Round 8 will essentially be a full day at the hospital where they gradually give me the Oxaliplatin in small doses over several hours - basically a tolerance trial. Hopefully, that will work and I'll still get all of the drugs to fight the battle. My chemo days will be longer, but I want all of the weapons! Not sure what happens if I do not tolerate it and I'm not going to think that way.

To be honest, I am somewhat depressed that I was unable to complete the full treatment. I did everything but only got 1/3 of the Oxaliplatin. As you know, I am determined to win and it is upsetting that the drugs got the better of me today...I'll get over it, but just putting my emotions out there.

Not sure how this will affect the next few days. Oxali is the drug that causes the first bite syndrome pain, so maybe that won't be as bad...and the gradual tolerance trial should minimize the side effects in the future. So that's good. But I still have my pal, the pump and so it's likely I'll still be exhausted and nauseous. But we'll see...

On a positive note, it seems we are 1 "okay" away from launching Grateful Fighters. Today, I saw the embroidered baseball hats prototype and it is freakin' fantastic. Thanks to the folks at Rock Free Love for all of their hard work on this project. I can't wait for you all to see it...hopefully, that will be the next blog post!

In the meantime, make sure you are getting your screenings, make sure you are seeing your primary doc once a year, and make sure you are vaxxed/boosted, etc. I know the colonoscopy prep or the boob smushing isn't fun, but your stories of positive screenings completed still brightens my spirits daily!!

#getscreened
#gratefulfighters

On Cancer and Teaching, Part II

 2.18.22

 

Today, the shit hit the proverbial fan. In Illinois, the governor's executive order mandating masking in schools was overturned. This has led to myriad responses across the state.

In the district where I live, there are reports of anti-mask staff and students bullying and harassing students who choose to remain masked. Whether you support masks or not, this is totally unacceptable. It is a school admin and staff responsibility to keep kids safe - and this responsibility was totally abused today in district 225.

In my own school of employment, we have a 4-day weekend, so preparations for the unmasking next Tuesday are a bit easier. Today, we received a lengthy communication for our administration in advance of informing the community that we will be mask optional starting Tuesday. The email detailed how staff should be respectful in creating a safe environment for all students regardless of their mask choices. I am sure that my colleagues and I will do just that for our students.

But this all means something different for me and my family on a personal level. Though I'm not really afraid of Covid, I am going through chemotherapy. I am immunocompromised. There is a much greater risk to my health. And frankly, I am hurt and offended by my school community's response regarding my personal safety.

Quite simply, in light of my situation and legitimate health concerns, if I could request students mask in my classroom. To be honest, I'm not sure my students would argue given that we have a relationship and they know my situation. However, I was told that at this time, we cannot put pressure to mask or unmask on students. In general, I get it. In my case, I feel like I've just been given a giant middle finger.

For 25 years, I have worked in my school community. Over those years, I have given 100% plus to my students and community. I have sacrificed my own mental and personal health at time in servicing my students. I have sacrificed my family and friends at other time, in light of giving my all to serve my students. And now that my personal health is at risk, I have been given the middle finger. I am hurt and I am offended.

Apparently for 25 years, I've been doing it wrong. I'm not sure it's in my DNA, but this very morning has greatly changed my perspective and priorities as an educator.

Today vs. Yesterday - On Cancer and Teaching

 2.1.22

I noticed a serious difference in myself between Yesterday (Monday) and Today (Tuesday). For the most part, that's no big deal - but for me, it was huge, and I think a lot of that has to do with the fact that I'm a teacher.

This is not a jab at all other professions. It's about being a teacher, and what most non-teachers do not understand about us. We are perfectionists. We feel the weight, every day, of inspiring countless kids - engaging them, entertaining them, helping them grow. When we are not our best or when a lesson doesn't go as planned - we beat ourselves up.

Cancer aside, I think that is what makes the past few years of Covid, so difficult for teachers. Whether what we are doing works or not - eschool, pod learning, or whatever - we feel the burden of success and failure. And when the public piles on, calling teachers greedy or lazy or bad at our jobs, it is soul crushing. Yet, much of the general public seems to be an expert on education and pedagogy and is willing to bash teachers at every turn. It's no wonder that our profession is bleeding teachers at an alarming rate, and that lower numbers are entering the profession these days.

I'd be lying if I said that I never thought about leaving the profession. Over my 25 year career, I have polished up my resume a few times. Ultimately, I've stuck it out because I love what I do. But yesterday was tough. I was still nauseous from Round 5, and I knew I was not at my best. And like I said, when I'm not at my best - I feel bad and depressed. It comes home with me. It keeps me up at night wondering what I could have done to make it better.

I feel like teaching is one of a few professions where you cannot hide a bad day. I have worked in other places at times in my life - in offices, you can 'hide' for awhile and catch up on work. When I was younger, I was able to 'ride out' a hangover at my desk until I was better functioning. My guess is that is possible in a lot of places. But it is not possible in teaching. I cannot tell my 2nd hour to hold tight for a while until my head clears. I have to teach because I have no other options. And I realized yesterday, that in an ideal world, I would have been able to take sick time while one of my awesome colleagues covered my class, so the students wouldn't be cheated. But I don't have unlimited sick time...even during a long-term illness. Truthfully, I should be taking 3-4 days off every chemo cycle [and many people have expressed surprise that I try not to miss any teaching through this chemotherapy], but that's not the way our world works. I can't think of any profession that gets that much sick time, but I know that 3-4 days every cycle, I'm pushing myself to teach my students - and beating myself up when I'm not at my best.

So, yesterday was tough because I really noticed that I was not at my best. Amazingly though, yesterday turned into Today - and there was no nausea, my enthusiasm/energy were back, and I felt more capable to engage and inspire my students. Thankfully, there are more Todays than Yesterdays in my life. And thankfully, I think my students are with me and they are learning to ebb and flow with me so that we can maximize our work together.

So if teaching is so tough, why not switch careers for another 6 figure profession as it seems people are doing based on the article linked above? Apparently teachers are in demand (belying the trite - those who can't teach crap), so why not flee for another career where I might make more and have less stress?

I guess the answer can be summed up within the controversy over the graphic novel MAUS being removed from the 8th grade curriculum in a small county in Tennessee. Many of you know that I taught MAUS for nearly a decade and I was privileged to present about it at an Illinois Assoc of Teachers of English conference years ago, and I was written up in the Chicago Tribune for being on the cutting edge of teaching graphic novels. For years, a colleague and I were contacted multiple times a year by educators from around the country and Canada to share resources on teaching MAUS due to materials we had put online.

And that stuff is cool and great...but it doesn't define why I teach. Over the past few days, I have been contacted by former students who are aghast and upset at the news out of Tennessee. One former student wrote:
"look what TN did....a tragedy! Most memorable class and an important book. What a shame. If we don't remember history we are bound to repeat it ... I still have my book with notes 19 years later."

In a nutshell, that's why I teach. And I want to thank the students who reached out to me this past week to remind me. Sure, the yesterdays are tough...but the impact we can make when the Todays are awesome, is immeasurable. So I will continue to fight through the Yesterdays this spring, while I fight this beast, and I will strive for the Todays that make a difference.

While other teachers may not have an illness like me, please know that they are battling their own Yesterdays and striving for the precious moments. Please support them, love them, send them notes of thanks. Not one teacher is out there trying to ruin kids - whether they are a great teacher or a good teacher. Do not listen to those afraid of teaching real history. Do not fret about those trying to foment panic about some mythical CRT being taught. The fact is that teachers are all out there, pouring their souls into our future. Help us all seek better Todays!

#GetScreened
#GratefulFighters

Writer's Block

1.21.22

It's been a month since I last blogged...for a bunch of reasons, but it's hard to believe that a month has passed. In truth, I have written, rewritten, and decided not to post about being an introvert. I guess part of being a writer is deciding what to share and what not to share, but other than the aforementioned thoughts about struggling with being an introvert in an extroverted world, I have purposely avoided publishing anything monotonous and/or negative.

And there has been a lot of 'negative' in the past month between Chemo and Covid. 2022 has so far been a real bitch. Most of you know this from reading Brandi's last CaringBridge post from 1.12.22 about my ability to go through the 4th round of Chemo as being the highlight of 2022 so far. Since then, I feel like we have continued to struggle with a 'plague on our house'. 2 of the boys tested positive last Tuesday and have been quarantined this week, in addition to Brandi being 'regular' sick and Lucy's ear infections. I long for a healthy household.

Maybe I have had writers' block because I was trying to avoid sharing that it seems like with each subsequent round of Chemo, the side effects are becoming more severe. I knew that this was a possibility, but I was hoping that my body would resist better. Unfortunately, this puts even more pressure on poor Brandi and the boys...as my neuropathy and cold sensitivities last longer into the 2-week cycle. Initially, my main symptoms subsided by the end of the weekend following Chemo - so Wednesday through Sunday were rough, but then I had 9 somewhat normal days. But now, I'm still having neuropathy/cold issues 9 days after Chemo. (Thankfully, first bite syndrome has subsided but that also lasted longer). What does this mean? It means that I cannot help walk Lucy. It means that when I get into work, I have to wait for my fingers to stop hurting so I can do work which is mostly on computer. It means that it is painful to pump gas. It means that if it snows, I can't help clear the driveway. There's more...but I think you get the idea. Not ideal.

More importantly, if the neuropathy continues, I worry that the doctor will have to adjust (meaning reduce) some of the Chemo meds. I do not want that to happen because I want to beat this beast with the strongest weapons we have at our disposal. Brandi's burden and the medication issue are my primary concerns...and I guess my writer's block, inability to sleep well, and somewhat increased 'depression' lately are a result.

Ugh, this post turned into more of a bummer than I intended. I am sorry, that was not my intention. But now, I guess, you know how I have been feeling lately. And I suppose I promised from the get go to 'keep it real.'

But let me try and end on a more positive note. Despite the tough times, I am still buoyed by you all. Not a day goes by without a text or a message or some other sort of inspiration from many of you, and I wanted to share 2 recent things that have lifted me up.

First, I received a note in the mail from a friend from high school. While we have been Facebook

friends for a long time, I am not sure we have seen each other in over 30 years. My friend is not Jewish, but she went out of her way to 'research' and send a hand drawn note written in Hebrew. And she was worried she didn't do it 'right.' Let me assure you - it was perfect, and it was even more poetic that it arrived from Texas the same week that 4 Jews were taken hostage in a Texas synagogue. It is a reminder that even in the toughest times, we stand together as humans in pursuit of peace.

The other thing that lifted me up today was a note I received from another friend - one of the many of you who have heeded our #gratefulfighters call to get screened. Here is the note I received after checking in on my friend after his colonoscopy yesterday:

"Good morning brother! All went well and I am in the clear. Here is my big take away though. Every one of my children and my wife have thanked me for going and getting checked out. They were all convinced that I would never go see any Dr.

My father passed from cancer of the pancreas when he was 59. I grew up with him in the hospital. Kidney stones, operation after operation and pain killer addiction. I have avoided going to the Dr as much as a person can. All until you have shared your experience. Something inside me said to take responsibility and be proactive.

I'm not sure if you want the credit for helping me make a decision for health, but truthfully it belongs to you fighting and sharing! Having my children express how much it meant to them was moving in a way I hadn't expected. I am grateful today for things I was unaware of yesterday! What a powerful connection. I hope you know that you are changing lives brother! I pray that it means everything and more that you need it to. I'm certainly more aware of what it means to me!"

No, I do not want credit. I am so happy for every person we inspire to take control of their health. And yes, each note of this sort means everything to me and to Brandi. It's a big reason why, even as an introvert, I continue to put myself 'out there' during this battle.  As I read this note this morning, Alon turned to me and asked me what was wrong. I had tears in my eyes. Yes, this note and the support of ALL of you means that much to me.

Shabbat Shalom
Have a peaceful weekend!
#GratefulFighters
#GetScreened

One Day at a Time...

 

12.21.21

The truth is, it seems that the weekends after my treatments are going to be rough. I should not be surprised, and no one told me that this battle would be easy, but if I'm being honest, on Sunday I was feeling like I had had enough. The thought crept into the back of my mind that I do not think I can feel like this another 10 weekends. I happen to have a fairly high pain threshold, but 48-72 hours of nausea is no fun and it takes a mental toll...it's a whole different ballgame.

One of the first goals Brandi and I set when this fight started was to be able to find a way to schedule Chemo so that I had a good shot at feeling well enough to make it to my niece's bat mitzvah in Florida. We were not sure that would happen over the weekend. On top of feeling awful, I had the double whammy of watching Brandi take care of everything in prep for our trip. She had to do laundry, pack all of the kids, ensure the house was locked down, arrange for mail pick up, and more.

Long story short, I woke up feeling on Monday feeling decent enough to make the trip and we made it here to be with family and to relax. We all tested negative before we left. We have an airbnb, my brother in law's pool club, and outdoor eating. We aren't playing tourist, we are not doing anything 'high risk" with Omicron running wild and my immune system in flux. We are just hanging out. One day at a time. Enjoying family time.

One day at a time. Like I said, on Sunday, I was down. On Sunday, things were dark. But the great thing about our world is that sometimes, when you need it most, the Wheel of Fortuna spins and things start looking up. And it was while we were sitting in our seats at the airport gate, that an old friend, his wife, and his son rumbled on over. It was so good to see them, to have a hug, to catch up, to chat about how I was feeling. My friend's response - "One day at a time." It is easy to forget, but that is so true. Fight through the bad day or two, move on to enjoy the next. So here I am, 80 degrees, in shorts, with family.

But that was not the only uplifting moment yesterday. Another old friend happened along and was also on our flight. This person was a participant when Brandi and I were madrichim (counselors) on Shorashim in the summer of 2000. We are in touch, but I'd never caught up with her in person - and seen her in mom mode with her 2 beautiful young children. And so, by the time our flight took off, the nausea was in retreat and my heart was full of friends, memories, and the promise of the day.

*I withheld the names of my friends in case they are sensitive to publicity in this day and age.

I should also mention here that even though I was still feeling 'okay' at the time, Laina and Patrick visited me for a few hours on Friday. Friday is the bridge when the 48 hours of chemo drugs are finishing and the nausea comes on. I feel really fortunate that they were in town and able to spend a few hours. I need my people. It makes a difference - and that is true for those I am lucky enough to see in person, and for those that are there that make their presence known in so many different ways whether it be sending a 'heart' text or inviting me to watch football. Y'all are my lifeline.

**I meant to add a special thanks to the lovely people that brought us Shabbat dinner Friday. It was delicious and a big help given the tough weekend!!

Fortuna smiled upon me this week when I needed the wheel to spin. I hope that it also smiles upon you and yours at this holiday season. Live every day - one day at a time - and love and rejoice in each other. And if I don't blog before then, Merry New Year to you all!

#GetScreened
#GratefulFighters

P.S. Thanks, Brandi, for getting us down here. You are everything.

Jinx - Buy Me A Coke!

 12.8.21

Yes, I'm going to jinx it. Well, I don't really believe in jinxes (unless I'm putting the hex on a late game free throw shooter at Assembly Hall in Champaign), so I'm safe...I think.

But first, I was inspired to write today because I received the following message a few minutes ago:

It is so awesome to see people hearing our message to #GetScreened and #EarlyDetectionSavesLives. To be clear, it's not the first message like this I've received, but this one just came at a time when I could gather myself to write a bit. That being said, I love, love, love getting these messages whether they are just telling us that they just got their procedure scheduled or whether they just finished the procedure. This is the type of thing that lifts my soul, and it's also the type of thing that I am writing about as we work on final steps to bring #GratefulFighters to life. We are already making a difference and that means something - actually, it means a shit-ton to me. So please, continue to reach out and tell me your successes with scheduling your required annual physicals, mammograms, colonoscopies, and more!

Oh, yea, I got lost kvelling (it's Yiddish, look it up) about my awesome friends using modern medicine to maintain their health and I almost forgot about jinxes...

I feel good. It took a few days post-chemo, but I feel good. You knew that I would...

Here's what cycle 1 of Chemo looks like so far:
Tuesday Blood Work - Feelin' fine.
Wednesday Chemo Day - Feelin' fine
Thursday Pump Day 1 - Nausea and Exhaustion creepin' in
Friday Pump Day 2 - Steady nausea and exhausted
Saturday/Sunday - Steady nausea and as much bed time as possible
Monday - Rough start, but feeling human by lunch time.
Tuesday/Wednesday - No nausea meds needed, fully at work, kickin' arse and takin' names.
Thursday through next Wednesday (Chemo 2 Cycle) - Continued feeling groovy!

JINX!

Not.

Love you all. Continually grateful for your love and support!

Keep spreadin' the good word on screenings!

#GratefulFighters

PS: Yes, I tried to find the 1984 SNL clip with the Jinx, Buy Me a Coke skit, alas, I was unsuccessful other than finding it on archive.org at about the 20:29 mark with Billy Crystal, Mary Gross, and Julia Louis Dreyfus.

After Review....

12.2.21

I will admit. I wasn't going to post this today. It feels a bit narcissistic, constantly writing about myself.  My apologies for that. At the same time, my original impetus for writing was to make sure that I recorded the memories for me and for my kids/family to have one day...

Yesterday, I was privileged to drive 2/3 of the boys to school - I enjoy those moments even more these days and I have learned to cherish even the 'quiet' times when they are still waking up. If you're a parent - you know how those teens & preteens need their wake up time! Ami is particularly sensitive to what is going on these days. He made sure to tell me that he hoped my chemo went well and that I felt as good as possible. He also got himself a ride to and from his pre-tournament weekend warm-up game at Niles North. Knowing that I wasn't going to make it to St. Louis this weekend to watch him, I really wanted to make it to the game, but Ami assured me that it was okay if I was not up to it. They really do grow up....eventually.

From drop off, I drove right to Glenbrook Hospital for the first treatment. I sat in the parking lot for 5 to 10 minutes, just gathering my thoughts. I happen to know a friend's wife who was also starting Chemo at the same time, and I said a prayer for both of us. I hope to one day be able to celebrate with her!

I knew right away that Brandi and I made the right choice going with Northshore. Everyone was incredibly welcoming, kind, and informative. My doctor enthusiastically shook my hand and shared my desire to get the fight going! I showed him the #GratefulFighters sweatshirt and, without hesitation, he asked me to let him know as soon as they were available. The doc, each nurse, the pharmacist, the nutritionist, and a social worker, each spent as much time as I needed to explain things step by step and to answer all of my questions. I know I won't see all of those staff members once this is regular, but it made me extremely comfortable.

Quick details for those that want to know. My blood work all checked out and so I was cleared for Chemo. The Chemo starts with anti-nausea meds and steroids for 30 minutes. Once that is done, I wait for 30 minutes for those meds to settle in my system. Apparently, the steroids end up bolstering my energy and since they last through the 2 days of the pump, the first two days aren't as 'tiring'. The possibility is that once the pump is out tomorrow, I will 'crash' for a bit.

Next, I spent 2 hours hooked up to the Oxaliplatin Chemo drug that breaks the DNA of cancer cells and prevents growth of new ones. When that is done, the pump of Flourouracil is hooked up to my portal. This is another cancer drug. The pump is about the size of small water balloon. They tape the line to my chest so it doesn't get tugged out, put the pump in a fanny pack, and sent me on my way.

There are a bunch of potential side effects to all of these drugs. I won't go through them all, but I am keeping notes (I'm sure you're not surprised). The relevant one right now is cold sensitivity. The nurses made a big deal of suggesting I have gloves handy because even the cold steering wheel in the car may cause pain. Yesterday, it was not really cold enough to bother me, but I did pick up a few pairs of those little knit gloves at Walgreens on the way home. I put one by the fridge and one in my jacket pocket.

They also warn that the cold sensitivity can occur orally. I was really hungry when I got home and I grabbed some pretzels and hummus. I didn't consider Hummus to be a cold food, but let me tell you - they were not lying. One bite of the hummus and I had shooting pain in my mouth for about a minute. Needless to say, I won't make that mistake again. Later on, I chose a soft bagel to eat. Apparently, the first bite of food can cause jaw pain as well. That has happened a few times over the past day. Subsequent bites are fine...but ouch, that first bite is so painful at the joint of my jaw. But that's it. And if those are the only things that happen, I figure that's a small price to pay for beating this thing. A little mouth pain is NOT going to deter me from my battle. I have too many memories to make with my brilliant wife, amazing kids, family, and friends.

Sleeping with my BiPAP and the pump wires was a bit tricky. But according to my Fitbit, I slept about 6.5 hours. Not awful! And I woke today feeling pretty good. All in all, not a bad first day!

Maybe none of the above is that narcissistic as it's just informative...but here's the part that is most important to me. As you all know, I love watching my sons engage in the activities they love. Right now, Nadav is playing basketball for his school team and will start winter soccer soon. I'm excited to see him play basketball now that his broken finger is healed.

Ami, as I mentioned above, is back playing soccer with his awesome FC Mirage club and they have a tourney in St. Louis Saturday/Sunday. Since I can't go to St. Lou, my goal yesterday was to be well enough to drive to Niles North (about 25 minutes away), to watch Ami's game. Well, I made it there. Ami has grown immensely as a player in the last 2 years. He's stronger and faster, and he's a pleasure to watch when he's focused. I am so proud of him in so many ways, and his play on the pitch is no exception.

Anyhow, during the game, I was having some daydreaming/flashbacks to when I was in high school. Niles North was in our conference and in the Fall of 1987, I played at Niles North and scored a goal there. I imagined how cool it would be to see my son score a goal on the same field. Amazingly, later in the first half, that dream came true. It was a bit surreal because sometimes I forget how fast Ami has become (when healthy). But there he was, flying in from the wing, taking a pass, and powering it past the goalie. I'm not afraid to admit that it brought a tear to my eye. I love seeing my kids find success in doing what they love. I am proud of each and every one of them.

The game ended 1-0.

Game winner for Ami.
Game winner for my buddy, (You know who you are), who had his colonoscopy with a positive outcome!
Game 1 winner for Me vs. Cancer - I'm doing the Chemo and I've got this.

#GetScreened
#EarlyDetectionSavesLives
#GratefulFighters


**The goal linked here was from a GBN game this fall. Last night was a similar play but instead of passing, Ami took the ball more toward the goal and shot.

And there's the narcissism ;) Thanks for indulging my kid brag.