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.
