May 28th. Preparing for what’s bext

 Not an easy task when you’re not even sure what the next step will bring. How did we even function before we were able to google everything!  It’s a blessing and a curse all at the same time so I stopped doing it.  I mean the shit you read about and how others handle their lives, treatments and even death are all over the place. There are supports groups, message boards, facebook groups , blogs and it can very easily consume your time.   Don’t get me wrong, it’s amazing. The information is super useful and important.  Of course there is also a good deal of sadness in reading it all as well and I am not going down that path.  

Here’s the thing…… you come into the world, you live your life however long that is and you die.   It’s the one thing we are all guaranteed.   You can’t live life afraid of dying because then you’re not really living  I was reading about a woman who after receiving her terminal diagnosis of glioblastoma she spent hours writing letters and cards for her children to be given to them throughout their lives on special occasions like wedding days and such.  That’s all very sweet but seems a little odd to me.  What if you hate who your kid has decided to marry? Is there an alternate letter for that?    I’ve come to the conclusion that you can’t micromanage a future you may not be around for.  So I’m just staying present and for me that means letting the people I love know just how much they mean to me.  Love hard throughout your life so it’s enough to last once you’re gone. I think I’ve done that    I’m a hugger. Addie just recently told me she loves how I rock her a little while hugging her and I didn’t even realize that I did that. I hug my boys every chance I get and I have to stand on my toes to reach.  They are both master huggers 💙💙. My dad is one of my favorite people to hug. I mean it’s my dad! Is there anything better than that!   Then there’s my  sister’s. Renee will give you a hug that can stop your breathing. She loves fiercely and for my whole life I always knew she was just a phone call away. . Jet and I don’t even have to talk to communicate. There’s not a lot of hugging but there’s always been a lot of laughter.  Like pee your pants laughing. Our whole relationship is one big inside joke and we just get each other. One of the best parts about starting my granola business 4 years ago is how much time it allowed her and I to spend together and for that I am so thankful.  The friends that I have had in my life for years know I love them and would do anything for them. They have stuck by my side the last few weeks and have all made me feel so lucky to call them my best friends.  And what about all of my new friends??my market family  we sure do come from all walks of life and are a bunch of characters.  I love them all and they know it.  What that whole community has done for me and my family to help us is nothing short of incredible   My heart is full with gratitude and love for each and every one of you. 

So for now I’m going to just say I’ll talk to you all soon.  My family will keep you posted throughout.  My surgeon texted me this morning! Said we are all good to go and he has every confidence that all will go well tomorrow so I’m feeling calm.  

With love gratitude and sunshine 

Jeanette XO

May 27th. Mama bear is pissed!

 There is a running joke in my family.  They call me “Switzerland “.  I’m the neutral one. Jet knows I’m the first to get out my Pom poms to cheer on her hubby when she’s on his case and I try really hard to keep the peace.  I just don’t do conflict well and I try to both avoid it and not instill it.  I’m not sure this has always worked to my advantage.   I married at 24. Had 3 babies in 3 years and would not have changed a single thing about that. They are my family. My life, my pride, my heart and soul. The 3 of my most favorite people on this planet.  I’ve been a single mom since 2006. I tried my hardest and for sure made mistakes but we somehow managed.   As you get older you begin to realize that certain things/ people/ situations that surround you really don’t have a place in your life anymore.  You figure out that it’s all just too negative snd you step back and wonder why you hadn’t done it years ago.  I made a very conscious decision to do this about a year ago and it was the right choice for me.  Well…..yesterday those “leopards” showed their spots at the expense of my son Michael and I am fucking pissed.  I can’t say I’m surprised but I am disappointed. Disappointed in the fact that they showed a total lack of respect and compassion for all my  son has on this plate right now.    I’m sitting here thinking about how many adjectives I could use to express how I feel but what I really want to say is this, I pity you guys.  You’ll never have the family unit we have.  In this house.  no one walks around thinking they are better than the next person.  People talk to each other….. not at each other.  We forgive and forget.  We speak kindly to each other And more than anything else we have each other’s backs.  

I always wanted this home someplace my kids wanted to be…. Not someplace they wanted to run from.  I am damn proud to have achieved that.   Bottom line: DONT FUCK WITH MY CUBS!  

I’m excited for the next couple of days   My beautiful sister Renee drove from North Carolina to New Jersey yesterday to be with my dad and stepmom through the surgery  I’m happy she is here and they are coming tomorrow to spend time together with me   I’m going to cook something I know my dad will love and we’ll celebrate both his and my stepmom s   Birthday      today I’m making a big pot of sauce and meatballs and I’m expecting family and friends in and out to grab a bite and get a hug before Wednesday   All are welcome!  

I am pretty nervous about the surgery  there is so many ifs and unknowns    I am trying to just compartmentalize it 

   Here’s some facts: not having surgery gives me the least chance of survival weeks to months     )This rapid growing glioblastoma will likely worsen rapidly if nothing is done     For us this is not an option   Rapid growth can also happen due to the surgery  seizures are a big risk during and after and I want to come through it strong enough to come home to recover and not have to go to a rehab 

Surgery is risky   My tumor resection will take hours   They are aiming for an additional 70% removal however this will be determined once they are doing the procedure   Could be more, could be less   After the surgery I am kept under for possibly 48 hours    

I’m really nervous about what could happen neurologically during the surgery.  The idea of not being able to think or talk or care for myself is devastating.   It’s the reality of taking a risk that may or may not give you more time   My life is in the hands of some pretty amazing Doctors and I am grateful. 

Wishing you all a beautiful peaceful day 

With love, gratitude and sunshine always 

Jeanette XO

May 25th post 6. . Living in a bit of a dream

And it’s not necessarily the fucking nightmare you’re thinking. 

First off.      busy day yesterday. Had my last MRI and  Addie had a virtual meeting with a surgeon from Lennox hill who is involved with a trial that actually involves an implant of sorts during the surgery. (Which is in 4 days). His name is Dr Bookvar   He is a leader in clinical trials at Lennox hill Hospital.  It would have meant moving the surgery to Lennox hill and having both surgeons do the tumor resection. After numerous consultations with all involved I made the decision to keep to the original plan for the 29th. Proceeding with this trial prematurely could result in exclusion from others down the road that could be more beneficial for my particular glioblastoma. How incredibly fortunate I am to have this team in my corner?!  I’m trying not to overthink how my head will be cracked open for hours while they try to remove as much as possible but I am confident that I am in the best hands possible.   But wow!  My sweet Adeline!  This amazing daughter of mine is truly a warrior. She is back on the west coast, wrapping up her internship hours and the last of her assignments before receiving her masters in psychology    She is also working at night and all the while researching treatments and doctors and statistics on the diagnosis we are facing as a family.  I call it “survival mode “. I’ve always functioned best in this mode   We’ve been through it, her and I and maybe some day we’ll share that story but this strong badass human that had emerged from inside her I always knew existed.    Family is everything and as far as that goes I am the luckiest woman alive 

My dad’s birthday is Monday  91 trips around the sun for this handsome man  I’m 58 and still call him “daddy” and he still calls me “mishy muffin”   I know this whole situation breaks his heart because like so many of us as parents we want our babies to be ok   He hugged me last week and said “ hunny you haven’t had an easy life “ and to be honest I’m not so sure I agree with him without a doubt there have been some hard times but you deal with it and move on  and in the meantime do what makes you happy and for me it was always being in the kitchen cooking and having a full table to cook for.   The front door was and is still always open and   the kids all knew to just come in and they also knew the first question I would ask was if they were hungry      The floors were dirty and there were shoes everywhere    They played video games to all hours and the girls practiced cheers on the front lawn   It was chaos and I loved it    It truly is magical the conversations around the table at the end of the day and more than anything it made life feel happier  

   So about that “living the dream “ part     Well it’s a beautiful day   Saturday morning of a holiday weekend and I’m sitting outside with my Sophie and Robbie   The clematis Is beginning to bloom      The birds are picking at the Granola I fed them and the stray kitten I’ve been feeding for a few months now keeps popping her head up from under the bushes   This type of morning never happens for me   I’m always too busy working so this is feeling a little like paradise  a gift really and I am beyond grateful  I’m feeling a little bit like Snow White ! And if I decide to dance around on the front lawn I can just blame it on the rumor!!!

I can’t wait to hear all about the markets today!  

Love and sunshine to all! 

Jeanette XO

May 24th. Post 5. Thank the blessed mother I’m not the sharpest tool in the shed

Jet and I went to my first meeting with Dr Samuel Singer yesterday.  He is a neuro oncologist and will be overseeing my treatment plan.  He has nothing but positive feedback on the situation so far. He has had numerous conversations with Dr Eichberg regarding my upcoming surgery and is confident that doing so will give me the best chance of survival.   I feel incredibly lucky to have so many resources so close by. This $560 million neuro surgery tower complex at north shore Manhasset was completed just a few years ago patients come from all over the world to be treated there and all I have to do is hop on the LIE!  He begins explaining about how they are still studying the piece of the tumor removed  for genetic mutations  we talk a bit about clinical trial research / treatment stuff but until all the labs are in its kind of premature   

He asks what I do for a living.  Oh! I make granola….im a pro at just the right amount of cinnamon!  

Vehicles are becoming super confusing for me. I stand next to the car and it takes a bit for me to figure out the whole front seat/ back seat and where I’m supposed to be getting in.  Ah! The steering wheel! I know that’s NOT where I go.   Poor Jet!  She’ll get used to me. I don’t want help. Just make sure I don’t get into the wrong car!  

It’s been a little over two weeks since my diagnosis. I understand things a little better now. Glioblastoma / brain cancer is something I will have for the rest of my life.  Some people live just months after diagnosis and some live years. It will be constantly monitored and treated and I’m ok with that.  I’m not crying over it because it just gives me a headache.   I’m sad about not being able to kick off the market season with everyone this weekend but know I’m cheering you all on !!  The kids will be around and I am thinking a big pot of sauce and meatballs on the stove Monday so I hope to have a houseful of people to feed. 

On my way with jet to have my final MRI before the surgery. 

Sending you all love, sunshine and gratitude 

Jeanette XO

May 23rd. Post 4 my last born. My Rob

 My last born. My Rob. His life is becoming a driving miss daisy scene and it’s pissing me the fuck off!  Robbie and his beautiful girlfriend Laurie live together here in the home I raised my family in.   It works.  Everyone gets along. I have people to cook for and we enjoy each other’s company.  Financially it makes sense.  Robbie has had some health issues in the past so we’re kinda each other’s rock.  If you know Rob I don’t have to tell you that he is one of the funniest, kindest most adorable guys on this planet.  He drove me to preop Tuesday night and i insisted on walking from the parking garage into the hospital.  I didn’t want the cane   He held out his arm and said “I got you mama” and for the first time in I don’t know how many years I held his hand.   I may have to get him one of those hats Morgan freeman wears just to fuck with him. 

The sudden loss of independence has been the hardest thing for me. How do you go from doing everything on your own to no longer being able to drive and ease through daily tasks??My eyesight is wonky at best and I literally had to look at the calendar 15 times yesterday to figure out what day it was.  But I’m dealing with it and it’s ok.  I am able to get these posts out (run on sentences, bad grammar and all)  make a delicious cup of Italian roast coffee   and feed all the animals   Twice pouring the cats dry food into the water bowl and she looks at me like “what is wrong with you “????

I see the neuro oncologist today.  I have some preliminary pathology that says the beast is a WDH wild type grade 4 glioblastoma. It also says it’s infiltrating (thank you captain obvious) Friday morning another MRI and on Friday afternoon Addie set up a virtual visit with Lenox hill about clinical trials for treatment options   We are learning so much and we will not let the statistics stop us   We are keeping it real so that together we can make smart decisions   I am grateful for all the information being relayed to us and ask that y’all share what I post in hopes of helping someone else  

I’m still feeling strong just a little tired   The night sweats are no joke 

I hope you all have a great day 

With love, sunshine and gratitude always 

Jeanette XO

May 22rd. Post 3. As with everything else in life…..it’s a process

The word is out. I need to call my very best friend Mary. We’ve been best friends for over 30 years and she is the most no nonsense, cool headed lady. She’s ridiculously smart and she’s an attorney. She knows exactly what I need in writing and before my head is cut open she will have everything in order. And she does. And I am relieved. We don’t hug and cry about it. She hands me her favorite pen. I sign. We have witnesses sign and We both just agree that this is all so fucking  crazy. We raised our children together, went through a lot of good times, bad times and everything in between.   in 30years we never argued. We always had each other’s back no questions asked and we just always accepted each other without judgment. 

My family is making plans to be with me for the surgery and friends are popping in to say hi (or goodbye?) it all feels very strange because of the way my brain is now functioning. Again, the way my eyes are seeing is not making sense at all in my brain so when our normal routine is setting up tents somewhere I can’t comprehend now being in a hospital room with y’all.  It’s overwhelming and just weird, but at the same time I feel so much love from everyone and that is such a blessing.  

Dr Jin begins explaining about the surgery. This aggressive form of brain cancer is rapidly growing. He feels confident that immediately removing 20% of the tumor will both elevate the pressure and provide a good chunk for labs. The labs will be key in the genetic makeup for when they plan a chemo/radiation treatment schedule.  I straight out ask him if I m supposed to get a second opinion and he quite honestly feels that there isn’t time. I’ve got an army of people researching and we are learning and this first step makes sense.  I feel strong and ready.  My second born. Michael stayed with me all night after the surgery. “My Michael “ every time I opened my eyes I got to see his handsome face smile at me and it gave me such comfort (. By the next day I was up and about and 2 days after I was home and walking around.  I want no part of a cane, walker or wheelchair  I’m coasting the kids are all here getting shit done so Iam comfortable   But I’m struggling with the comprehension problems  the whole house smells like a hospital   I feel helpless   

Fun facts: my glioblastoma has caused me to have an extremely high sensitivity to scent  I don’t seem to have an issue with most food smells (go figure) or Sophie’s grinch feet  but cleaning products, perfumes, normal bath and hair Products and laundry detergent are rough and give me a super bad headache   Which leads to another fun fact: wTF with the nurses! Guys and gals  god bless them all but there needs to be some kind of rule that says they can’t wear layers and layers of perfume  even my family members found it hard to be around   

Daily annoyance: steroids! Although needed to help treat the swelling these fuckers suck   They give me a “short fuse” and make you feel like you’re going to snap    They make you  super restless  

Next appointment is Thursday to meet the neuro oncologist…….  I feel like I should be making granola and giving it to all the doctors   

Thank you so very much for reaching out to me, sending prayers and love and for just being the absolute amazing support system I could have ever asked for  i hope you all know I would do the same for you all  .  you have all given me and my babies peace of mind as we fight this as a family  I feel super strong and ready to fight!

It’s a beautiful day today  sending you all love and sunshine 

JeanetteX

May 21st post #2 - diagnosis

Let the scans begin. Jet and I are people watching in the ER and both thinking “what a crazy place to work “. I’m told the initial head scan is not good so they want to do a second with contrast and while they are at it just scan the whole body. Great! My left hip has been hurting so can we get a look at that too? I mean I’m here. Let’s get it done. Scans are done and we meet a neurosurgeon, Dr Jin We immediately have “P” (more on this beautiful wicked smart angel later)researchingthis dude. He is top notch. He is calm, thorough and direct.

My first questions? Is it dementia? Did I have a stroke? No to both and I actually say to him “oh thank god. That’s good news. So other than the brain 🧠 scans everything else is clear. Ok, so that’s good news right? Well , not so much……

First and foremost there is a brain tumor. Generally if it is a metastatic tumor from another location the odds are more likely it’s NOT glioblastoma OH! New word! Jet and I immediately start to google it. I very clearly remember looking at her and saying “fuck……this is not good”. Talk of surgery to relieve the pressure and get a culture start. Time to take a deep breath. My 1st born, Adeline lives on the west coast. We face time, text and talk several times a day. I have always promised her to tell her everything that goes on here. she is just a few weeks away from receiving a masters degree in psychology and there is no one word to describe how freaking strong she is. I know it’s a decision she has to make about coming before the surgery which they schedule for Friday 5/10. Addie arrives Thursday night. My boys are of course by my side as well and although the circumstances suck having all 3 in the same room at once is and will always be my greatest joy but having them all so worried about me really really really sucks.

The dynamics of this beast invading my brain 🧠 “ heterogeneously appearing intra axial lesion centered in the posterior temporal lobe, right occipital lobe and the right occipital horn.

Pre op later today.

Love and sunshine ☀️ to all

Jeanette

The First Steps

Good morning to all

I thought I would begin a series of essays to keep everyone up on my current journey because shit is about to get crazy!

My babies and I are absolutely blown away by how many amazing people have asked what’s happening and I wish I could take the time to speak with you all individually but truth be told it’s all pretty overwhelming. I’ll do my best while my eyes are still semi-behaving to share with you all and hopefully along the way help others with all we are learning about terminal glioblastoma brain cancer. I am so blessed to be surrounded by friends and family that are doctors, lawyers, investigators, and researchers. I know not everyone is as fortunate so I would like to share what I’ve learned as knowledge is the best tool. Please feel free to post wherever you feel would be helpful to anyone.

🟡How this Bullshit started:

Well, the best way I can describe it is about 3 weeks ago I felt like my automatic pilot was “off”. You know how we all go through our busy daily routine and just get stuff done? To me it seemed like everything was an effort. You make excuses. Lots going on, preoccupied, getting ready for the new market season, money stress, blah blah blah. Ya just keep going. I felt tired (but aren’t we all?) and I had a minor headache (allergies !right ?). Just keep swimming, girl. You’re fine.

🟡Things that make you go “huh”:

Why does everything seem so different? Like the neighborhood? Or the local market? I wasn’t feeling lost. I knew where I was, I knew what I had to get done but it felt like what my eyes were seeing wasn’t completely computing to my brain properly. I drove right past my house on my way home one day. My thoughts? Oh sweet Jesus I have an early onset of dementia! I made an appointment to see my regular doctor and kept busy with my granola business. I also decided to not drive as I felt some indecision while driving that I couldn’t quite understand and I didn’t want to take any risks. On May 4th I saw my GP and she ordered some tests. Said to have them and follow up in 2 weeks. 2 days later, On Monday 5/6 while out with my son Robbie I lost my peripheral vision on the left to about midline… crazy how the brain works or in this case doesn’t! I immediately called my doctor and was told to go straight into the ER. Let’s make sure that you aren’t having a stroke. A stroke!?There is no time for this crap.

🟡Today’s chuckle:

My sister Jet is my sidekick, my granola packer and we are always together. At the ER the dr asked her if she noticed I was acting weird, clumsily, or banging into stuff. We both laughed. If you know me well enough you know I am a teddy bear in a china closet. I am constantly banging my toes on the furniture or bouncing off shit. “Graceful “ was never part of my playlist. So it was not an easy question to answer for either of us. More tomorrow on how the next few days went leading up to the 1st surgery. Oh fun fact: Putting your pants on backwards is a classic brain tumor symptom! My neurological team told me it’s one of the first things they learn! Seriously! WTF!

🟡Closing:

Finally, thank you for everything you have all done to embrace my family and I. I have always known just how blessed I am to have 3 of the most beautiful humans on this earth call me Mama and it gives me so much pride to share them with everyone through this. Please continue to share my journey.

Sending you all so much love and sunshine

Jeanette