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