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

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

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

Friday 6/7. The same but so different.

I’ve always been that person that can handle stress.  Just take it on, find the positives, and truly believe all the crap like "this too shall pass" and "it could be worse", blah blah. I said it to Mary yesterday, life flows and you have to just ebb and flow with it. Like everyone else there have been some pretty hard stressful times in my life, my first reaction is always to make sure everyone else is ok. We do that as parents, nothing is about yourself...... it becomes all about these humans you gave life to, thats always how I've felt anyway. I know for sure it’s how I managed to get through some really stressful times, because I just focused on them. So now with facing all this bullshit I am at a total loss on what to do, in as much as I’d love to pour a tequila grapefruit, I also know that too is no longer an option so for the first time in my life I find myself with some pretty bad anxiety and I honestly feel its so bad because I’m unable to process it the way I always have. So much focus and attention is on me and I hate it, I hate not being able to make this better for them, holy crap! I always knew I was a little “take charge” bossy but looks like I’m a bit of a control freak too! And the worst kind! The kind on steroids! Also some things I've always loved aren't ideal anymore so time for some new lighting. If you have been to my home you know I'm all about "mood" lighting: ambient tones, fairy lights, and strings of white lights are here and there all year long. Well now that I cant fucking see I have to make adjustments no big deal but it kind of is because its not "me."  I’m hanging onto what I can though cooking of course! Walks with Soph! Hoping to be up to knocking out some granola next week. Michael is home for a couple of days so the boys and I will do some things. Automatic doors confuse the shit out of me now so stores are an adventure.  Addie spoke to the surgeon yesterday and he said he was hopeful that some of the cognitive/perception issues may still improve as the swelling subsides and I was super happy to hear that because seeing things so differently really fucks with you. Robbie is doing great so I’m so relieved about that! Appointments with the radiation Dr and the neuro/eye Dr next week, still researching clinical trials, still waiting to hear back from Sloan, some tele health appointments set. Not to worry though, I am still holding on to me. I’m still cursing like a truck driver, can still banter with the best of them and I still want to feed everyone!! With love, gratitude and sunshine always, Jeanette.

Wednesday 6/5. Shopping for cancer treatment

 Good morning all. First please send a bit of good wishes and positive energy to my Robbie who is having his lymph node removed. Jet took him. 

Ok. So yesterday absolutely sucked for so many reasons. First off one of the things that we were waiting to find out about the tumor is if it was or is methylated or un methylated, I know! who heard of this shit but anyway it’s unmethylated which is the bad one of course so it’s more resistant to radiation and chemo. I knew from the start that chances were better than not that that was going to be the result of the testing. It’s pretty common with brain cancer so it wasn’t. I wasn’t shocked. I was just kind of disappointing to hear it so that sucked.  Let me paint you a picture of the office yesterday. The most lavish, over the top, excessive , in your face expensively decorated, and it really just felt like they were showing off  it felt like walking through a museum more than a medical facility and it was so offputting and it was like the first time I realized that this is like big business I don’t know it was. It was very weird. And it made me feel really sad I was in the room with Jet and Robbie. Addie was zooming in the doctor came in and his two female assistants who kind of looked more like they should be working at Roosevelt Field mall then a doctor office. I doubt they were nurses. I don’t know what their role was but I do know the whole vibe felt very rehearsed.   There was nothing natural or comforting. It was like they were reading from a script. It was eye-opening.  So the doctor started talking about the clinical trial that he’s involved with gave me a lot of information about it which of course you know with my mind being so cloudy thank God for my family and when he’s talking about his clinical trial, it’s not really like a lot of information because so many of these clinical trials I’m learning or you know Stages first stage second stage stage you know who’s eligible who can get in who can’t get in but make decisions because there’s not a lot of clinical trials for everybody. I was not digging the doctor and I could tell that wasn’t either and the whole approach was like going to the mall to buy a pair of shoes and a pair of shoes like at one point the doctor said I remember if it was the doctor that said it or one of his assistance something like you know you have to do your homework , don’t let the Internet make you crazy with what you read and you don’t have to pick my clinical trial I won’t be insulted !  Seriously? Is that what you think I’m thinking about right now insulting you by not picking you a clinical trial? So they gave us a folder with all the information on this particular trial there’s not a lot of people in the country and it may be like a dozen. I think he sees maybe two the success rate is not great but that’s with a lot of these trials I mean, that’s why the trials we don’t know yet I thank God that they are available because they are options, but there’s a lot of research and legwork to be done to try to figure out what the best one might be for me. There was also kind of a little shift in pressure also as we’re talking about his clinical trial, there was mentioned a couple of times by him about I have a little bit of time because they’re not gonna start anything for a week or so cause I’m still healing from the surgery But if I make my decision too late, I might not be able to get into clinical trial   So he sent everything home with us and we scanned everything. Addie sent it to Sloan yesterday so I’m waiting to hear from them today and hopefully get an appointment soon. See what they have to say and offer over there. In the meantime we’re looking at some other clinical trials stuff, I should also be hearing from the radiologist today. I have to go see him and just get it all figured out.   Before I left they wanted to draw blood. So they brought me to this fancy room, sat me down and asked me if I knew if they wanted to use the regular blood tubes or did I have  any they gave me. This is the first time I’m at this doctors office clearly they spent billions of dollars on this place and the girl, drawing the blood behaves more like somebody working the make up counter at Bloomingdale’s then a doctors office it was so bizarre  I have to say for the first time I felt like I was not in good hands and it made me feel really scared . Sad pissed, and just fucking annoyed.  No one working there behaved organically it was like everybody was super trained on what they said how they acted. It was very cold. I don’t like people like that.  So the take away yesterday cancer cancer study these doctors these clinical trials it’s all big base big business and it’s all about money.   And who has the most and the fanciest office. How about use some of that money and hire some people that are real and compassionate. People that actually care. I don’t need some generic assistant dressed to impress handing me a tissu telling me she’s here for me especially because I am so nice!  What the actual fuck!!

The surgeon is in the same office so I’ll be going back there on the 27th but hopefully by then I will have enough information for an alternate game plan. Maybe Sloan. Let’s see. 

Tuesday 6/4 let’s do this!

 Good morning. I had a notification on my phone this morning. It was a “memory “ from Sunday May 5th. Granola on display at the wicked gluten free expo.  Just 2 days before being diagnosed.   It’s wild to think about how quick everything happened since.  First surgery on May 10. Second surgery on May 29. I am feeling strong and ready for the next step.  When I was released from the hospital on Sunday I was instructed to take appointments with my surgeon and my neuro oncologist within two weeks. Dr Samuel singer is the neurology specialist and will be over seeing my treatment going forward.  When I first met with him he said that we would wait a couple of weeks after surgery so I can heal. Ugh  more waiting. Yesterday his office called me. Said he insisted that I go to see him today to discuss clinical trials. I’m assuming this means that they have all the genetic markers results from the original biopsy and that is what they need to determine what will work best for my tumor.  I am so ready.    Love and miss you all so much. The way you all have continued to send love and prayers means so much and I feel it every single day. 

Have a beautiful day 

Jeanette XO

Monday Morning of June 3rd

And I’m finally home!

 

Getting out of there yesterday was no easy task! There was issues with meds, issues with insurance cards, and, since I no longer possess any patient disposition, I was about ready to lose it. Jet waited with me all day. I don’t know what I would do without her. Trust me when I say that my brain tumor is affecting her brain drastically because she has to be the easygoing calm one now! This is a big shift for us and I know that I am a little stubborn... ok... a lot stubborn. The cognitive stuff is so dam hard to explain and deal with. It’s so weird how I interpret things now. Like what resonates in my brain throws me off. Case in point: when they finally sent a transport yesterday to wheel me out we had to first go to the pharmacy to pick up my meds. He wheeled me in and, I shit you not, just outside in the hall there is a small string trio playing the song from the titanic while the ship was sinking! It was aweful and my brain could not take listening to it. Jet went to pull the car around, there’s more then one irate rude ass human also waiting on meds. The transport dude is nowhere to be found and I’m sitting in the middle of the room listening to the titanic sinking and various people being unpleasant and I’m not having it. I am walking out now so I don’t end up killing the chelloist! I am quite the sight right now. The eyesight sucks and my legs were feeling weak from being in bed for the last 4 days. I have a head full of stitches and I am hurting. But I make it through the lobby and outside. The sunshine feels good. Huh. Every car looks the same to me now and it was a zoo so I sat on a bench until jet beeped. She knew I wasn’t going to wait inside. 

I am so happy to be home and just puttering around the house being able to walk around do some things. We have some paperwork to do and lots of mail to get through. I honestly can’t explain how touched I am by all the cards, calls, gifts, and offers of support from everyone. I will reach out to all but here are a few things that madme smile this past week . It was a week of a lot of tears.

It was a real struggle holding it together. I cried a lot more than I wanted to. Of course my kids were all my rock this week and I am so proud of them all. Could not wait to get in my kitchen yesterday to get a pan on the stove with some fresh spinach from Polly’s garden and eggs for dinner! Coffee this morning in this wonderful mug my beautiful niece Kylie made me. She is so talented!

 

 This beautiful blanket gifted to me by someone I am sure I cooked for in a past life. He has one of the kindest hearts and look forward to cooking more for this beautiful couple.

This adorable boo boo card my niece Layne and nephew Tyler made with their Mama. And this sweet card sent from my childhood friend that I grew up with.

 

 Finally my dad made me laugh when he came over! He looked at Sophie and was like “look at this ape”!  Excuse me sir?? This is a bear!! Unfortunately though now that my brain is messed up I can’t unsee it!

I hope everyone has a great day!!! 

Time

 It’s 3:41 am.  Saturday. June 1st 2024.  I’m 4 days post surgery. And in neurology icu.  This place is like the RitZ so no complaints.    Another 60ish% of the beast removed. He aborted the “dig” a little shy of the goal for fear of some neurological issues. I am grateful.   The last few days have been rough pain wise. I had to stay in the dark for 48 hours and now that I can be in the light I can barely tolerate it. It hurts my eyes and gives me a headache. Still no perifial on the left   Chances are better than not that “time”will   not improve the vision issues.  Still I’m glad to have woken from surgery and still be verbal and cognitive (sorta) shit takes a little “time” now.  

There is a John travolta “B” movie I always liked called “A love song for Bobby long”. In the opening scene he talks about time being a thief and this is becoming all too apparent to me now.  I’m fighting for my life so I can possibly have more tim to live, to be with my kids. To be home cooking meals for family and friends. To be together with everyone for holidays but it’s all a little delusional really. Think about it…… who the hell has time?  All we ever do is bitch about how there aren’t enough hours in the day to get everything done. That’s just how it is, for mostly everyone I know. I’ve sat awake most of tonight having a little pity party mostly because I know sitting in the hospital is not how I want to spend my time. I miss my kids but it’s a bit of a mind fuck because it’s not like I would be able to be with them all anyway because they’re busy, I am busy, and there’s never enough time and how do we even change that? We can’t really. There’s jobs and school and bills to pay and a whole long list of responsibilities. My family has been amazing. Renee has been here from North Carolina, my Addie came home from Oregon. My dad and bonus mom from jersey and I’ll see my nephew and niece from North Carolina later today.   Countless friends and family all making the time and I know it’s not easy. I am so thankful.  Time for sure is a thief.  It just really sucks that with my diagnosis not only is it a thief it’s also an erratic bitch that apparently doesn’t tell time.  So life will be constantly monitoring this beastly brain cancer. It will grow. It will shrink with chemo and radiation. (Hopefully) We will find clinical trials it will grow some more.  There could even be additional surgeries although I have no clue how much more cracking into it I could take!  This could go on for weeks to months to a few years. Possibly longer. I came to the realization that regardless of how long I have much of it will be spent in treatment. In the hospital, in drs offices and sleeping from the exhaustion of it all. It’s all.  So how do you actually live life while trying to stay alive? Hopefully I’ll figure it out.  

I hope everyone enjoys this beautiful day!

With love, sunshine and gratitude always 

Jeanette do