Observations from 5A....

We are back in the hospital.  We are on the 5th floor, A Building.  We missed our nurses.

Well we didn't actually, though they are lovely, P-M's stupid cancer cells are as stubborn as he is and they did not respond to the first round of chemo.  So we have to start a second, more aggressive regimen that will hopefully be more successful at attacking the lymphoma.

In the meantime, we have lots of time to think, chat, sit, sleep, and observe.....observe things like this:

• It is true that there is an alarming number of doctors who are Indians.  It's like my people have joined together to cure my guy.  

• We have two doctors.  Dr. El- Shami and Dr. Lari.  Dr. El-Shami is our oncologist.  He's awesome.   He calls me Natasha and Pierre-Marie, Mr. Lasseron.  I don't know why, but he does.  I make him hug me and he does.  Dr. Lari is Pakistani. But I don't think he's ever been there.  He has a girlfriend, really curly hair, rides a motorcycle and reminds me of a very special man who lives in the Nilgris.  I have decided to knit everyone scarves and hats.  And I told Dr. El-Shami that I am adopting him into our family.  He didn't seem to balk at that. 

• Time in hospitals is a weird thing.  I usually get here for rounds in the morning at about 8:30 and leave once P-M is settled for the night.  Those days feel like they fly by.  And yet, they are the longest days of my life.  I have no idea what day of the week it is and no sense of what I do all day, but I am busy and everyday feels like a Monday.

• There are other families on the floor that you begin to recognize. You eye each other as fellow comrades in arms but don't get too close.  A woman in room 504 is named Mumtaz.  I see her family in the family waiting room.  They remind me of my family.  Indian and loud.

• I will never eat at Au Bon Pain again.  Ever.  In a million years.  It is the only shop here.  We eat there often.  Clam chowder, chicken noodle, avocado BlT, the good egg.....never again.  I mean never again after we kick this cancer. 

• My heart has never hurt as much as it did watching P-M in pain.  Breathing through his mouth and hoping it will pass.  Twisting and turning on his bed looking for a position that he feels comfortable in.  Hands gripped on the side of his bed.  The cancer is breaking his body.  His pain is breaking m heart.  

• Dilaudid is great.  Medicine is great.  Chemo can be magical when it works and a fickle friend when it doesn't.

• P-M had his first big breakdown. He had a spinal tap that was very painful.  When he came back I could see that he was tender and fragile.  He cried, I cried, I held him and whispered that we were going to be ok.  That he was going to be ok.  ...we were our own Hallmark movie.  Maya, who happened to be visiting, was trapped in the corner....Poor girl.  

Chemo 2.0

• I have never had more appreciation or admiration for nurses.  They do some terribly icky things with much grace, care and empathy.  We have had a few interesting run ins with some of our care takers.  The "Over Sharer" who lets us know about her dates.  The "Demander" who insists on having everything done their way without discussion or explanation.  But more than anything we have had the "Empathizer" who makes sure that P-M and I are ok.  The "Reassurer" who makes sure that we have all we need.  The Nurses of 5A are amazing and keep us grounded and taken care of. 

• I think the robes are really ugly.  Someone should make softer and more attractive ones.  I think I would make them in a variety of warm neutrals.  There are socks too.  That have treads on them. They come in yellow, green and blue.  The are the better f the two, and yet, they lack imagination.

You know that song "What a Difference a Day Makes".  Well with cancer it is so true.

• Tuesday - We came in to start Chemo.  Dr. El-Shami did not like the fact that his stomach was distended and he was short of breath.  

• Wednesday-  He had a spinal tap and one lung drained.  His pain was severe and the emotional weight of it all was heavy.  He cried and I cried. 

• Thursday- More pain killers, more draining, more pain.

• Friday- More pain killers, chest tubes inserted on either side, more pain.

• Saturday- We went for a walk.  He ate a yogurt.  And drank an apple juice.  A small victory...a huge step.... 

The Natural Haircut

Pierre-Marie and I have lots that we quibble about.  We're both stubborn opinionated people so of course we have things that we argue about over and over.  He hates that I will make a late night snack and leave the kitchen a mess.  I think he rambles on incessantly sometimes.  He consistently nags me to not put my purse on the table, "you put that thing everywhere and then leave it where we eat".  I hate that he won't throw out old t-shirts or buy shoes that don't make him look homeless.

But the one fight we have, religiously, every three months is the the HAIRCUT fight.

It starts like this.

Week 1
Me:  Honey, think you should get a haircut.  (it's looking a little rough around the edges)
Him:  It's on my to do list

Week 2
Me: Babes, so, I'm thinking maybe you should just schedule a little clean up this week.
Him: Yeah, yeah, I know...it's on my list

Week 3
Me:  Ok, seriously, you have to get your freaking hair cut.  You look crazy
Him:  I know...I know...it's on my list

Week  4
Me:  Get a haircut or else....
Him:  👀

We're clear for a month or two and then start it again.

P-M and I were on week 2 of our haircut fight when he was diagnosed.  At that point, he thought, what the hell....I don't need to get a haircut because my hair is about to fall out.  And I agreed.  So we started chemo and were told from the beginning that with this treatment he would lose his hair.

The beginning

And we waited.  Sarah had finally convinced him to let her trim his hair with the electric razor that Simon had brought to the hospital.  He didn't look as scruffy and I stopped talking about the hair.  I'd come home from work and attempt to slyly run my hands through his hair to see if anything came out.  He always caught me and said, nope not yet.  And we'd laugh.

Last Thursday, I came out of the shower and P-M said it's starting.  Not sure what was, I asked and he showed me his hand full of his hair.  I asked him if he wanted to shave it, but in case you weren't aware, my husband is French, so he said, in great earnestness.  "No, there's no need.  It will fall out when it's ready."

And.....it's coming off

Psychologically, I was not ready to watch strand by strand to fall out.  Logistically, I didn't want to have to clean that up.  But I left for work and hoped for the best.  Coming home that night he had on a cap.  He said a lot had fallen in the shower.  Our friends, Kelli and Sebastien, had invited us over that evening and with a few words from Sebastien, our Man was convinced to shave the rest of it off.  

And so in week 5, he got the haircut that  I had been hankering about, but for all the wrong reasons.  

I, too, wanted to get in on the action

This is not because of the haircut....he normally look like this!

He looks concerned....

Oscar Wilde said that a man's face is his autobiography, for my man, his face and hair shows that he is ready to kick cancer's ass!

Father’s Day

Growing up, my brother and I never celebrated Father’s Day. Not because we don’t believe in it but because my father never felt it necessary (according to him it has fascist roots and is capitalistic). I’m sure we gave him some art projects here and there created in class when we were younger, planned by our teachers. But as a family, we never went out of our way to make a celebration out of Father’s Day.

As my dad says, “Every day is Father’s Day.” I agree with that statement! As children, we have a responsibility to say thank you and be appreciative of what our parents have done. Oftentimes, we fall short because we lose sight of the big picture. Since becoming a teacher in NYC, I have also noticed that some children don’t have parents worth thanking.

Although I did not celebrate Father’s Day this year, the day itself definitely brought on a different meaning for me. I’ve always appreciated my father, but my perspective on our relationship has majorly altered since his cancer diagnosis.

Simply put, my father is a wonderful human being. He loves hard and sets very high standards. When growing up, this was difficult for me to handle. Mostly because I am very much the same way. Him and I would argue all the time and it took me leaving home for college and then for the Peace Corps to let my heart grow fonder as the distance grew longer. My dad is a pusher but I give him so much credit now because he helped me grow into the strong person I am today.

My father is worth celebrating every day, and it was beautiful and overwhelming to see how many others have been feeling the same since the news broke of his cancer. Living in NYC, therefore away from home, is challenging because I am removed from this journey. Knowing that he has people in his corner to support him gives me comfort. Love heals and that is what you are all giving him, healing. It also gives me comfort to know that Simon and Natasha are not alone – cancer has become part of their daily routine in a way that it hasn’t for me. They are in the thick of it, along with my father.

My father is worth celebrating every day not because he now has cancer but because, simply put, he is a wonderful human being. I give thanks that I get to call him papa and look forward to many more days of celebrating him.

Dad using the electric razor that Simon bought him. I had the pleasure of giving him
a nice "clean" cut in the back, and Natasha was appreciative of the final results.
It's a team effort! 

Chemo is Like a Box of Chocolates

Forrest Gump mentioned that life is like a box of chocolates...you never know what you're gonna get.   Little did mama Gump know that life is not the only thing that is a box of chocolates.

In fact, chemo is like a box of chocolates.  And each side effect a different flavor of frustration, surprise, humor and disappointment.

The Milk Chocolate Caramel-  Leg swelling is a common side effect of chemotherapy.  One minute you find yourself walking around on lily white legs (P-M's legs are achingly white) and the next you're related to Bilbo Baggins.  Besides the fact that hobbit feet are quite unattractive, the swelling can possibly be caused by a blood clot so off you go back to the ER.  And when you get to the ER, Monica, one of the nurses from your last visit comes by to say "hello" and check on you.   And you both hug like long lost friends.

Cherry Cordials- Day to day life changes.   Schedules shift and activities take on a slower pace.  Our normal late night suppers are relegated to the Early Bird Special of 7 o'clock; nap times become events of the day and showers a production.  Outings are limited and fatigue the dictator of the schedule.  I finally had to figure out where the trash cans are and am so thankful for Instacart.  Mika is getting used to hanging out Simon and has finally come back to sitting near P-M.  Flowers are not allowed, processed foods eliminated, and broth making happening at home...So we're learning that change is the constant. 

The Dark Chocolate Raspberry Parfait- Needles are a commonplace tool when dealing with doctors and hospitals.  For many a stick here and a prick there is something that occurs once in a while.  For Chemo patients, a PICC line is inserted into your arm.  This is often done when multiple other shots have already been inserted into arms and legs but the need for access to a vein becomes consistent.  The tattooing that comes from this is purely unintentional and the marking left behind waxes and wanes and creates patterns of blues and grays.  And then one day, after many days, we expect them to vanish only to be replaced by a new design.

Pecan Delights- Visitors....A total side effect of chemo.  And when you're lucky (like we are) you have many of them.  And they show up and and they bring food and flowers and good wishes and hugs, lots and lots of hugs.  Kids walk dogs and take out trash.  They come down from NYC and plan outings.  Sisters clean homes and friends, dear friends, bring chowders and quiches.  They, the visits and visitors, are delightful.



White Praline Heart- Chemo and cancer changes your heart.  I don't know if does from a scientific perspective but it does from a symbolic one.  P-M and I remind each other that it's ok to cry, that work is not what defines us (who knew), that we love each other, that we have a caring and supportive community of people around us, that cancer sucks, that we are not cancelling our trip this summer but rescheduling it, that we are scared and emotional, that life has to continue on.  We know in our heart of hearts that we have a choice to either manage this lymphoma or let it manage us.  And we have decided that our hearts and spirits are stronger than to let this manage us (at least most days we do).

So, for now, we sit with our box of chocolates.  They (the wise ones) say that sugar feeds cancer.  In this case, I am finding that these "chocolates" remind me of our humanity, feed our soul, frustrate the daylights out of us, comfort us when sad and show us when to celebrate.  Our box of chocolates continues to grow and some of them I want to gobble up and others I want to put back after taking a nibble. Though my mama always told me that you can't put a chocolate back once you've taken a bite!  So, I'll keep the ones I have and hope for more Pecan Delights!!!

Thank God It's Lymphoma

Pierre-Marie called me while I was at a Middle School Music Performance and told me that he needs to go to the ER.  He had fluid in his lungs.  That was May 23rd.  That was the "pre" life where words like cancer, transplant, chemo and T Cell didn't exist.  It was a time of school, work, vacation planning and counting down the days to summer.  That was the "pre".

The "post" life came after an ER visit yielded a preliminary diagnosis of lymphoma for Pierre-Marie.  Or rather, we were told,  there were markers for lynphoma.

It was life altering and world changing and Pierre- Marie and I left the hospital reeling from the news that was handed to us in the same way someone might tell us that we need new brakes for the car or our bathroom had mold.  We left the ER knowing that there would have to be more doctor appointments and more waiting and even more fear that our lives had been changed unequivocally.

Today, we are grateful for the fact that we have a lymphoma diagnosis.  To be accurate, P-M was diagnosed with stage 4 T-Cell lymphoma.  Stage 4 lymphoma is curable, possibly.  Stage 4 lymphoma is better than a solid cancer that has reached stage 4.  Stage 4 lymphoma gave us hope.

Always thinking! 

We are back home.  In the week that we spent at the hospital, my guy was poked and prodded, reminded of the importance of community, scared and hopeful.  Days were long and nights felt short with constant interruptions.  We went from a pretty dire situation last Monday to a more hopeful one on Tuesday.  There was a bone marrow biopsy and spinal tap.  He did well with the chemo only vomiting once and he most definitely enjoyed the prednisone.   So much so that I was asking for some just so I could put up with his manic talking....

He looks the same....

As for me, I cried a lot and spent time at the hospital.  For the first time,  I pushed work to the background and apparently, they were fine though I am not sure how I feel about that.  I put on the coat of a new normal realizing that for now our old normal is a thing of the past.

At this point, the cancer has not spread to nor did it originate from the bone marrow.  This is excellent news.  We wait to hear about what the sub type is and if there are cancer cells hiding in his brain stem.  In the meantime, I have him home.  He is a bit of a pain the ass asking for all sorts of things, but I am so glad that he is here bugging me for stuff and even more glad that this is Lymphoma....

After all, everything is relative!!

And we're off!!!