This will be my third attempt at trying to do this post

 Between my eyes and my brain everything is difficult. Things have changed. The dynamics in the house have changed drastically. I can’t do anything without anyone standing behind me because I lose my balance easily. We’re still waiting to see what the doctors can do about the lightheaded and dizziness. There’s a burning and a pressure in my head that I can’t get rid of. It’s not painful like it has been in the past, but it’s almost like a wound pressure. So far nothing has worked. Next step is going to an ENT to see if something is happening in the inner ear that would explain the dizziness. In the meantime dealing with some serious depression and anxiety.

I’m thankful all my kids are here to help me get through this.

Thank you to everyone that has reached out wanting to come by. I’m hoping by next week I’ll be up to having company.

September 27th 2024

 I’ve been home about six weeks now, have completed 30 rounds of chemo and radiation, and the treatment has taken its toll. I feel like I’ve taken a step back after getting home from the hospital because I can only walk with a walker. 

I’m learning as we go that there is a lot of different aspects to this recovery that I didn’t anticipate. Something I didn’t realize is the depressions that comes as a side effect of the radiation, and I’m struggling with that now.

Dr. Iwamoto believes the ST101 clinical trial is working and I have an MRI scheduled for October 15th.

Thank you to everyone who’s reached out, sent cards and gifts. It means a lot. I’ve been a bit phone challenged because of my eyesight and am often tired. I’ll work on getting back to you all soon. I miss being with you all.

With love,

Jeanette

August 13th ~ Still moving forward

 Hello all,

I’ve been missing everyone so much. I am in the hospital at New York- Presbyterian in Manhattan. I ended up having 2 more surgeries over the past month due to more growth of the tumor. That makes a total of 4 surgeries so far! I have made the decision to not move forward with any more surgeries at this point. My 3rd surgery was extremely rough and the pain and recovery process was beyond anyones imagination. And due to unforeseen complications I needed to have another surgery. Therefore they are going hard with radiation and chemotherapy. I am confident that I am where I need to be. Currently at rehab at the some hospital and they think my projected go home date is the 18th. Every day I am getting stronger and stronger. My biggest issue is my eyesight. Unfortunately I feel like it has gotten worse and not better. I just want to say thank you to all of those who participated in the fundraiser and everyone who helped my children make it as success.

There are so many phases of fighting this cancer I could have never imagined how hard it can be. But I am bound and determined to do what I need to do to fight. My goal right now is on August 18th to walk into my home and to be able to be home with my children and my Sophie. We have so many memories to make and we will do just that.

Life will look a little different going forward and that’s okay. As a family we will adjust accordingly.

My diagnosis has been unreal. I often wake up and think to myself “Brain cancer!? Are you fucking kidding me? Okay, let’s get this shit outta my head. Let’s do what we gotta do.” Easier said than done but not impossible.

I look forward to getting back to life on the 18th. Thank you for all your prayers. I love you all and I hope I can see you all soon.

Saturday July 13 th. Need to get emotionally stronger

Good morning.  Spent the day in the city yesterday with Addie for all the pre op tests.  Bless her heart.   I am not easy the whole being guided and not leading is just so hard for me and naturally hard for whoever is with me to know what works best for us both.   I need to chill so I find myself apologizing a lot for being short tempered. This seems to be my biggest challenge so I’m trying to adjust.  Having all my babies here this past weekend and cooking and celebrating them was so fun I am so aware of how precious every day with them all together is now that it just rips my heart apart.  How do I get past this?   I just want to be happy and live in these beautiful moments and I find myself feeling anxious and sad.     I’m hoping after the surgery this week I will have a better perspective on things.   

Thursday July 11th

 Today is a day to celebrate and make memories.  Addie and Ispent the day together yesterday planning for our celebration fest today and it made me so happy to have her with me.  Today we will all be together along with other friends and family that have been so incredibly supportive and kind and really have become family.     I’m sitting here having my first cup of coffee and I’m already trying to figure out how I’m going to get through this day without tears.  I mean seriously! I need to get my shit together!  These are precious days that need to be fulfilled with laughter and joy.  I’ve got this. I mean eventually I’ll run out of tears right?   Trying to get it all out of my system now before the celebration starts!   We’ll be busy cooking eventually which is always a great diversion for me.         Busy week ahead too.   Back to Columbia Friday for a lil the pre op.    Then back on Monday for an infusion and will be admitted afterwards for the surgery on Tuesday morning    Positive thoughts they get the rest of the tumor out. (3rd times a charm!    Will probably be in hospital a few days afterwards. Our celebration today is for Addie receiving her masters degree in psychology/social work and Robbie s birthday.  But I’d like to say it’s also for me having all 3 of my babies here with me.  There are no words to describe how full of pride my heart is for each of them. On a daily basis they make me feel like the luckiest person ever. It’s the most important thing that they need to know just how wonderful they make my life every single day.  

Monday July 8th

 Good morning all. No appointments today.  Infusion tomorrow at Columbia.  

Had such a nice visit yesterday with Jean.  Thank you to all who sent goodies with her.   It meant so much Jean that you took the time to pick up the Granola baskets for port.  I know how rough this heat is on you so please know how much I appreciate you.   Your encouraging words and your kindness.  

Friiday 7/5. Working through stuff

 I hope everyone enjoyed the holiday yesterday.  It’s always been a rough one since 2016 because prior to my brother’s passing it was his holiday.  He’d load up on fireworks and had a great time shooting them off.  It’s a day we miss him most.  It’s also a day I watch jaws on loop as tradition!   The last couple of weeks I’ve definitely been feeling a shift in how I’ve felt emotionally.    I am still feeling incredibly grateful for the endless support and love my family and friends have provided and received.  Knowing we have so much support is indescribable.  And of course I can’t say enough about how proud Iam of everyone of my kids as we navigate this bullshit together.  The last week has not been easy and they just continue to support me and each other.  

If I’m being honest when I first got my diagnosis I knew before strong and positive was super important for everyone and I still feel that way but it’s not as easy as it was before because as more time passes it becomes more and more evident that life as I knew it is done.  I’ve become that person with brain cancer that spends most days in drs offices and getting treatment ( not who I want to be).  I want to be at the markets with my friends slinging granola.  So some days suck and some days are ok.  This morning as I have my 2nd cup of coffee I’m feeling pretty happy.  Addie is flying in Monday 7/10 which is also Robbie’s birthday!   So it’s a great time to plan a celebration which always helps me feel happy!  I can’t wait to have Addie here as we have a lot to work out as she and Colton make a transition to be able to be here as my treatment plays out.   

Surgery 3 has been pushed forward to July 16th so that’s 1 less week to have to wait as im anxious to get the rest of the tumor out.  Also it will mean chemo and radiation can start early ( generally around 2 to 3 weeks after surgery and I am healed from it.   In the meantime the st101 infusions will continue weekly at Columbia leading up to and after the surgery.  I’m having an MRI soon and I’m hoping that there hasn’t been much tumor growth.  Have I mentioned there is not enough xanex to deal with all this anxiety????  Hence why it’s 4am. I can’t sleep and I’m now on my 4th cup of coffee!   I have had a few telehealth appointments with the insurance companies as I try to navigate through disability and services that are hopefully available to me.  So they.  Ask a lot of questions and often I am puzzled by them because they seem very redundant.  The last one after speaking about my situation asked me if I was depressed or feeling sad. And I’m thinking isn’t yes just the obvious answer for anyone recently diagnosed with brain cancer?  Then she asked if I felt lonely which I do not.  SH asked if I cry due to the situation and if I do when was the last time.  I cry daily because I feel like I’m mourning the lifestyle I no longer have.  But that’s ok.  I’m working through it day by day.  And I can’t help but think all these emotions are normal.   Ohhhhhhh and let’s not even start talking about the concoction of meds that contribute to emotional side effects. Addie having recently discovered one of the least ones I was put on actually causes depression (fun).   Another thing that keeps my spirits up is that I feel great    Im not having any trouble handling the st101 infusions so that’s a big plus! I’m not feeling much pain   Headaches now and then unfortunately the only issue is my veins are not cooperating so there is still a possibility I need a port which I don’t want  y’all enjoy the weekend!  Sending love and gratitude always 

Jeanette XO

So it’s just a little more of an effort to keep my shit together but there really are many blessings that help me do so.  

First and foremost my kids!   Robbie and I spending lots of time together driving to the city and various appointments.  My frustration with myself makes me kinda bitchy at times and he has caught the brunt of it which I find myself apologizing for but Robbie being Robbie gives me a pass.   Michael comes weekly for a day or 2. And I always look forward to that.   Over the moon to have Addie home in a few days so we can start to prepare the logistics of being together.  Planning a birthday/graduation party for Robbie and Addie will be fun!  Planning a Cajun seafood boil because they both love it and its always been a birthday dinner request for Robbie 

I hav so many friends and family that check in on me every day and it’s so comforting knowing how much we here are thought about and loveed.  The fundraising. The food, the prayers push us forward every day.    But most of all, more than anything that even though we have some bad days I have no doubt we as a family will continue to lean on each other and figure things through as we always have together.  It will be a great time having everyone together and a good diversion figuring it all out.  Boredom has been a major issue for me.  I try to keep busy but fatigue is a major problem as well.     I am trying hard to be more conscious of my words and in expressing myself in the right way.  I know that we all here are going through some tough times and big changes.  Addie said the other day that she fears all the things that have changed us will change our relationships with each other I get why she’s feeling that way. The distance is hard but once she’s here I know that she will realize that even though we have all these changes we will make it through together stronger than ever before no matter what.  We are so blessed to have this time together no matter how long or short it is.