Friday 6/21 Yup! Life has changed but I am still who I’ve always been

 Happy Friday everyone! Hope everyone is doing good and keeping cool. Getting ready for the markets this weekend?   I actually made granola yesterday and will make some more today.  It feels good to get back into it but I’ll be honest, I’ve been feeling tired and stressed. Shit just takes time now.  I have plenty of help but I was determined to get it done on my own.  It took me 20 minutes to get the damn food processor to gether properly and was very close to throwing the whole thing out the back door! My brain has been through a lot!  Sometimes it takes a little to do what used to take no time.  It’s gotten better but I am thinking I will probably have a little set back again after surgery 3 on June 23rd (ish).   Clothes will be worn backwards but so far I haven’t left the house naked so that’s a plus!!  

A lot of time is spent figuring out appointments and emailing about medications and scheduling. Addie, Robbie and jet all help with that and I am so thankful.  Later today I have a virtual visit with the radiologist at , finally getting the stitches out of my head on the 27th and. On Tuesday ay morning I will have my first ST101 infusion at Columbia    They sent 2 additional prescriptions to take in preparation for it. They will do weekly infusions until the surgery and then a few weeks after surgery they will start chemotherapy and radiation 5x a week at Sloan in addition to the weekly ST101   I’m nervous because I have still been feeling good.  Strong.  Up to fighting and really want to continue feeling good.  I’ve been thinking a lot about doing what makes me happy and also trying to do what is best for this whole situation. There is so much information and so many different options and perspectives. Some very positive things.  Many people believe certain foods like sugar feed cancer.  I’m not in disagreement. In fact in 2015 I went on a whole food plant based rampage when we were told by Sloan that they were pretty sure he had lymphoma.  He had infected lymph nodes and his blood was destroying his platelets.  They removed and biopsied 2 nodes and both came back inconclusive.  He had some immunoglobulin treatments for the platelets which worked but the whole inconclusive answers were not acceptable for me.  I began to research and found a lot of information. First off lymphoma is one of the most curable/ treatable cancers. All this inconclusive shit just pissed me off so I started to eliminate everything processed from our food. No sugars except for dates (this is how the Granola started) I was soaking cashews to replace dairy. We were making our own oak milk. Buying organic everything and watching every plant based YouTube channel I could find. This was a huge learning curve for me and I was literally trashing the kitchen every night. Robbie was a trooper they never had any answers other than the body just does these things and since has been treated for ITP which is an autoimmune condition characterized by a low platelet count. It’s monitored by a local blood specialist.  We don’t do the plant based whole food diet like we were but on an overall I try to incorporate good food. We eat little processed food, fresh fruits and veggies and whole grains. I’m still frying up chicken cutlets now and then and we made some damn good burgers on the grill last night. So here’s why I’m telling this story at 4am while enjoying my 2nd cup of coffee. Addie asked me yesterday why I wasn’t putting in the same diet efforts for my diagnosis as I did for Robbie.  My answer was harsh but it was true to how I feel at the moment. I truly felt at that time with Robbie it would be helpful in his healing and recovery. I’m not so sure all that matters when it comes to my glioblastoma , but it’s more than that too. I’ve always been a foodie. I love to cook, I love to feed others and I love to eat! That allbrings me happiness and comfort. I’ve been “fluffy “ most of my life and walking Sophie is about my exercise speed these days and if you know soph you know there is absolutely zero speed involved.  I am that person that thinks about what I want to make for dinner while having breakfast. The highlight of my day when I was working every day was calling the kids before leaving work to see who was around and if anyone had any dinner requests. I loved when they did but sometimes it was just me going to the market to see what looked good. I’d usually make a cocktail, put on some tunes and that was my favorite part of the day. My zen  my happy place. So the bull and I went at it a little yesterday and while I totally understand for right now I need to have some normalcy in as far as what makes me happy. Sitting here at 5am thinking about what to make for dinner makes me happy (so would ordering a pizza by the way). Making more granola today will also make me happy because I have decided that this will be a way I can give back. I am going to bring baskets of snack sized bags to the infusion center at Columbia and to the office at Sloan and wherever else I can play granola fairy.  I know once treatment starts my appetite will change (watch, I’ll be the only person on chemo and radiation that doesn’t lose weight!)   We touched on some other things too, like support groups and other mental health stuff. I suppose it made me defensive because I f I must say so myself I think I have a very positive attitude and in staying true to myself right now I’m not open minded to a lot of that. Being able to be home and seeing friends and family makes me happy. Addie coming home on July 10th makes me happy planning a little graduation celebration for her when she comes also makes me happy. Already thinking about that to make. Eggplant parm is her favorite. Ohhhh and I have to find the most amazing coconut cake for her!  

Here’s the deal. No matter what anyone else feels (although of course important to me) will always fight this fight my way without fear we don’t know how long it will be manageable and that is the reality of glioblastoma.  Hope is good!  Hop can be healthy and great for your mental well being but so is facing the reality of the situation……for me anyway. Jet comes over and we still laugh at the stupid stuff we always have. 

Someone asked me the other day if I was depressed. To be honest I do not feel depressed. I felt sad and shocked    I know not everyone in my family feels exactly the same way and that is ok. For right now 

I hope yall stay cool today. Sending hugs. 

With love sunshine and gratitude Always 

Jeanette XO

Father’s Day 6/16/2024

 It’s a beautiful Sunday morning and it’s Father’s Day. A perfect opportunity to tell yall about mine and how lucky I am that for my whole life I have had the privilege of being his daughter. 

My dad turned 91 this year. He was raised in East NY Brooklyn, joined the Marines and served in Korea.  He and my mom married, had 4 children and raised us in bethpage. My parents split when I was 5  but let me tell you something, the father he was through it all was what makes him the greatest man i know.  

He called us everyday at 4pm. A quick chat hello, I love you but we knew he was thinking of us. He worked for the phone company and did side jobs. The man can fix or build anything. He maintained the house we lived in and every other Sunday we would go out to my grandparents for dinner and he would take care of whatever needed to be done there too.  On the alternate weekends he would take us to the park or beach or to farmingdale college to feed the cows. Dinner was usually hot dogs, Mac and cheese and jello made in recycled plastic yogurt cups.  He showed up for every choir concert and Girl Scout square dance and when he came to the house he day of my senior prom and I was running around half naked, hair fizzy and having a total meltdown I’m pretty sure he was ready to call a priest to do an exorcism. Luckily jet showed up.  

He somehow managed to take us on vacation every year to New Hampshire. A little cabin on lake winnipesauke. Years later when he and my stepmom married they created a home upstate for the big extended family we had become. Long weekends with all the littles at papa and nanas. Memories for us all that we are so lucky to have. 

I could go on and on but the most important thing to know about this man is that he was always kind. Never yelled or was in a bad mood with us and I’m sure that there were many days he felt the weight of the world on his shoulders.   About 8 years ago a coworker said to me after answering a phone call from my dad “ya know you still call your father “daddy”. I said yes  I do. That’s who he is  

One of the hardest things about my diagnosis has been knowing how much it hurts his heart. Like any of us as parents would feel. But because I’ve always had your hand to hold I am stronger than most. And whether you realize it or not it’s you that taught me to dance through the hard times. You’re an amazing role model for all your grandchildren and you are so loved. 

A very happy Father’s Day to all the wonderful men i know that put their children first in their lives. 

Sharing treatment plan

 I have been so blessed to have some pretty amazing people in my circle that have helped me make treatment decisions.  People who have knowledge most of us do not in this situation. People that have relatives that are in the field of medicine, healthcare and clinical trials.  Because of all of these individuals and invaluable resources I have a game plan that I am very confident in.  

I will start a drug called ST101.  https://sapiencetherapeutics.com/patients/st101-clinical-trial/

This weekly infusion will begin in 2 to 3 weeks.  It will be administered at Columbia Hospital. I will also be receiving radiation and chemotherapy at Sloan in commack 5 days a week for 6 weeks.   A third surgery is scheduled for around July 26th. The surgeon, Dr McMan will remove 90% of what is left. This surgery will be at Columbia Hospital.  After the surgery I will continue with the st101 on a weekly basis along with the chemotherapy and radiation at Sloan.   Sloan will handle all reoccurrence as well as any additional clinical trial opportunities for that stage.  

I share this information because of the research put into it in hopes it will be passed along to others who are not as fortunate as I am. ❤️

It’s going to be an intense few months but I’m ready 

Thursday 6-13 my little bull

 Today I was supposed to be catching a plane, traveling to Oregon to attend Addie’s graduation. This weekend she will receive her masters degree in social work. I can not even begin to describe how proud I am of her. I suppose as parents we all feel the same as our babies accomplish their goals/dreams but for me, her, us this is something she fought hard for and won. 

Addie was born May  1991. My first born. My only daughter. My Taurus  my little bull.  Offfff she was tough.  I remember when she was little thinking I was glad she was so tough and head strong, even when we locked horns because I was not at all like that as a child. I was always very timid and quite and although at that point I had no idea the journey I would hold her hand through in 2001 on a whim I went to a tattoo artist to have a custom piece drawn up.  I wanted a bull. A little girl looking bull. (Yeah…..don’t come at me. I’m aware bulls are all males) but mine isent).  He drew it up and a week later in 1 7 hour session it was on my back.  I didn’t tell anyone I was going and really had no explanation when asked why the bull   I always knew what it symbolized but I really didn’t give a ahit what any one else thought or if they knew the reason. 

As the years passed and struggles ensued as a mother I faced some of the hardest times in my life.  To be honest it was harder than this brain cancer bullshit.   I’ll tell you this, what Addie fought her way through and survived took amazing courage and strength. The strength of a bull. Throughout those years my life was centered around making sure she knew she was never alone, that no matter what I loved her and how much we all as a family needed her.  I would tell her to just keep fighting.  I knew she had it in her but this badass tough girl turned out to be so much stronger than I ever imagined. No, that’s not true. I always saw it in her.  

So flash forward to my diagnosis and now she’s holding my hand and helping me save my life. She flys in for the first surgery. She flys back to finish her intern hours, her grad school assignments and becomes a research machine for me and my diagnosis. She’s setting up appointments. Finding out about treatments and clinical trials. She’s handing emails and phone calls  , virtually attending Dr appointments locked and loaded with all the right questions that many a doctor has been impressed with. . Filling out paperwork and forms an alliance with Polly to get the best possible information together.  It’s incredible and I am so very lucky. 

I wanted so much to be at her graduation this weekend. I wanted to ugly cry and yell the loudest and I still will and watch it virtually and will plan a party for her next visit but i think for the first time since being diagnosed I’m pretty pissed off and sad. So I will just channel all that crap into how fucking proud I am of my little bull. My girl. My fighter. The strongest human I know. My sweet Adeline. 

Appointments at Columbia today. Riding shotgun with Robbie. Hopefully will get a schedule for the ST101 infusions and the 3rd surgery. Or at least start the process  started  

Have a beautiful day 

With love, sunshine and gratitude always 

Jeanette XO

Wednesday 6-12 3rd surgery

 Good morning 🌞. It’s been a busy few days. Had a great visit with the neuro eye doctor and he and his staff were amazing.  He was so knowledgeable and really helped me understand what my eyes were doing in relation to my brain. I felt like he went above and beyond. I should have 2 pairs of glasses in a couple of weeks. 1 for inside and 1 for outside. 

Jet and I went to Sloan yesterday and met with a great Dr from their glio team.  I have always been a huge fan of Sloan. They are top notch and we are so lucky to have them in our backyard. Dr Nelson can also be seen in comack which is great.  He spoke about more testing on the tumor and biological testing and treatment as well as immunotherapy testing and treatment. Both of which would be for reoccurrence and tumor growth which is inevitable.   I then had a second tele health visit with Dr Iwamoto from Columbia late yesterday afternoon.  He received all the reports and scans and was able to meet with his team and they are very confident that a 3rd surgery would give me the best possible chance of survival. I would receive a drug called ST 101 for a few days a week for a couple of weeks and then have the surgery at Columbia. I would then start radiation and chemo at Sloan in commack.   I’ve been up most of the night thinking about what to do. When this all started one of the doctors asked me what my goal was and I said “to live as long as I can”  well that hasn’t changed. Does having a 3rd surgery scare the shit out of me?? Hell yeah it does!  I mean I always knew I was hard headed but it’s crazy to think they can crack it open again.  But what’s even more scary is having regrets down the road if I don’t have it done.    We emailed the dr at Sloan last night to see what he thought.  I still have to talk to Michael and my family but honestly I want as much of this fucker out as possible.  I did so well through the first 2 surgeries I feel confident.  I know that there could be deficits and risks but seriously no matter what 

glioblastoma will reoccur and if we can prolong that now what do I have to lose that I’m not eventually going to lose anyway.  It’s stressful. And I’ll have to go to Columbia for a couple of weeks and then for the surgery.  I asked jet what she thought about it and she said it didn’t matter what she thought because it was my decision. She’s right yet so wrong. It deeply matters to me the one thing I have never felt through out this whole process is alone. I have the most amazing support system and although I’m still going to make my own decisions while I can I want my family to understand.  

So physically I’m still feeling good.  No pain.  Some headaches here and there.  Bad night sweats and anxiety so sleep is eh and nights suck.  Just tired but I hear that’s going to get a lot worse so I’m not complaining. 

Basically just waiting for Columbia to let me know when to go and start the ST101. Could be within the next few days.  

I’m happy to be seeing my friend this morning for coffee but I am over the moon excited to see my nephew Joseph who is here visiting from Arizona.  I’ve got some London broils marinated and will do a baked potato bar     Joe is the oldest of the cousins. Renee’s first born so the first baby on the scene. Like a shiny new penny!  Jet and I would scoop him up and take him out all the time.  We took him one day to a park In massapequa to feed the ducks.  He was probably around 2 maybe 3.  In the blink of an eye we were surrounded by geese and ducks. Like so much so we totally lost him in the mix   It was a sea of geese and ducks and where the fuck is Joseph?!  so Joe if geese are a trigger in any way I apologize  

I hope you all have a great day 

With love, sunshine and gratitude always 

Jeanette XO

The market life

 Good morning 🌞when I decided to blog it was basically to keep my friends and family up to date with what was happening here on my end.  I have since reached so many new people that read this blog and have reached out which is really amazing.  I get asked a lot of questions about my life BBC (before brain cancer) so I thought well it might not be the most exciting story but it is a very big part of my life.   During covid I decided to start a granola businesses after reading that the local farmers markets were open. It was totally on a whim. I hadn’t a clu what I was doing.  There is a long business story to be told here but maybe it’s for another day.  What’s more important is this whole vendor world I never knew existed prior to June 2020.  Beautiful people from all walks of life. Sharing their heritage with others with food and crafts. People so different from each other. I found it all so interesting and inspiring. It’s early Sunday morning right now and I’m missing my drive out to Southampton. I’m just missing driving period!  This summer would have been my 4th year at the Southampton Farmers Market  every Sunday May through September  so let’s talk about some of the unexpected bonds that happen with people that you honestly have absolutely nothing in common with and  that has to  start with Rachel  one of my first market friends   She is the owner of Sweet woodland farm located on the north fork of Long Island   She grows medicinal plants, herbs, crafts teas, elderberry and so much more  this to me is just beyond comprehension because I can’t grow anything  If you need a plant killedm your girl     We raised our children totally differently and have very different personalities       I tend to be a little too warm and fuzzy and Rachel is (lol was) guarded and  cranky  we ended up doing multiple markets side by side   Me always being too early and her sliding in just in time. She knew I was ready to help get her tent up.      I turned her into a hugger and we shared our lives during the countless hours spent together at good markets, crappy markets, hot days, rainy days and cold windy days    Most of all we laughed  that has always been our common denominator,   MKeep the faith Rachel  you may have to start helping me get my tent up straight but I will be back with my terribly inappropriate comments that I know still makes you cringe    Check her out here:  www.sweetwoodlandfarm.com

Saturday 6-8 let’s keep it as normal as possible

 I’m realizing how weird this whole situation is on so many levels.  I know i would tend to overthink it so maybe this will be helpful for my many friends.  Don’t be worried about what to say or getting upset or keeping your shit together when we see each other.  Letting your heart feel what it needs to feel is healing.  Don’t feel like you can’t bitch and complain about all the stuff we always have because now it seems so petty.  I want to still have those conversations. I want to hear about the pain in the ass vendor you got stuck next to or the rude customers.  The last thing I want is for people to feel bad about their lives being normal and mine being pretty much fucked.     It’s ok to cry and be sad with me too. And it’s ok to laugh and joke.     

We had a great zoom meeting with a Dr at Columbia yesterday. We spoke about some clinical trials but what I really loved about him was how positive he was. He also is going to do some further studies on the tumor because he said that  there’s a chance that the unmetholated result could be wrong.  That he’s seen different results almost 20% of the time!  It made me feel hopeful. His name is Dr Iwamoto and I will be speaking with him again.  

Nothing today or tomorrow. Radiation Dr Monday and Tuesday morning I have appointments at Sloan. 

Every one have a great weekend!  

With love, sunshine and gratitude always 

Jeanette do