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.  

Wednesday July 3.

 Just wanted to catch you guys up.  It’s been drs appointments and infusion appointments almost every day.   We had a telehealth visit today with the team at Columbia and they decided to move my surgery up a week    So I have an infusion scheduled for the 15th anyway and then they will admit me and do the tumor removal on the 16th.    They will schedule an mri and pre op as well.    

I am completely confident in this decision as I just want to get the rest out and move forward.  

Infusion 101 over that hurdle

 It’s Tuesday 6-26 and yesterday was my first clinical trial infusion.  Robbie asked if I was nervous when he was driving me there. I said I wasn’t because I didn’t want him to be. I was anxious about it.  All I could imagine was some mad scientist like gene wilder in young Frankenstein  making his cocktail that will now be dripping in my veins for the next few hours. Luckily I had no adverse effects and slept through most of it because they drip it with Benadryl.  This weekly routine is going to be a lot but I feel very lucky to have Columbia and Dr iwamotosteam in my corner.        The whole system is professional and they really take great care of you.  I struggle with being a burden on Robbie though.  It’s a long day and he is the kindest person but I hate his life is so changed by his.  He’s so good natured. This is not what I want for him.  It makes me really sad and I can’t fix it.  I’d feel so much less dependent if my eyesight was better so hopefully when I get the glasses there will be an improvement.  No appointments today   Stitches out tomorrow   Back to Columbia Friday for a quick blood draw   

Yall have a great day  

With love and gratitude always 

Jeanette 

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