Before I was diagnosed with brain cancer, our family had planned a Disney Cruise vacation. Before my surgery, my doctors told me I’d need chemo and radiation so we thought we’d have to cancel our cruise. But with all the good news following my surgery, the doctors have said I can go! We were planning to drive to Port Canaveral to make the trip cheaper (the Cruise itself was “free” since we are Disney Vacation Club members, thanks to a gift many years ago from my parents) but now the drive would be pretty difficult for me, so yesterday we […]
Join The Society! In my book, When the Whistle Blows, Jimmy learns about The Society, an organization started by his great-grandfather, Patrick Fineas O’Cannon. Members of The Society promise to do kind deeds for others – sometimes total strangers – in order to honor family and friends who have passed away, and for whom they can no longer do kind deeds. I’ve decided to start The Society from When the Whistle Blows in real life. Every so often – maybe once or twice a month – I am going to offer an opportunity here on my blog for those who wish to become […]
I took Hannah to see Elton John last night at the John Paul Jones arena. It was a splurge, but also a phenomenal mother-daughter bonding experience and a night neither of us will ever forget. Although I was super-tired by the night’s end, I made it through, even with the (potentially seizure-inducing) strobelight effects! But between the water and the ear plugs and the high skewing age of an audience that liked to sit as much as it did stand, I held my own! (Not to mention a terrific husband who not only dropped us off but also picked us […]
My oncologist was very happy to give me my pathology report two Fridays ago (March 11th) when I went to see him at UVA. It was not just good news, it was “great” news – the kind of news neurooncologists wish they could tell all of their patients every day of the year, but can’t. Because the news that neurooncologists generally have to tell patients is pretty hard stuff. The bottom line is that my brain tumor was what they thought it was. The dog barked. The prognosis is much, much better than it could have been. It’s the best […]
I am in “my” corner office at the Emily Couric Cancer Center at UVA, waiting to see my oncologist, Dr. Fadul. I was supposed to see him next Friday, but I’ve been having some pressure in my head this week, along with some unusual fatigue and water weight gain that made us all want to move my appointment up just to make sure I am okay. I’m feeling okay today – better than yesterday – but sluggish. I definitely overdid it in terms of activity this past week and I think I am just paying for it now. I […]
Food and Cancer. As you can probably tell by my constant focus on food lately, I believe that what I do, nutritionally speaking, is going to matter a great deal in terms of how well and to what extent I heal and recover from my brain tumor surgery. I don’t mean that what I eat will totally dictate or control my prognosis or life expectancy, but I know it will have an impact – an important one. Thus, what I choose to put into my mouth at each meal is becoming increasingly important to me. I now know: I need […]
My nutritionist says I should be eating gluten-free. Right at this moment, this sounds scarier than having brain cancer. I don’t mean to sound flippant in any way. Brain cancer is serious stuff. But eating “gluten-free” has also always sounded like a big mystery to my little mind. It means I cannot eat any wheat. It also means I should not eat many (any?) pre-packaged foods anymore either, which actually dovetails quite nicely with my new healing-cancer eating routine. But I need to explore exactly why I need to be gluten-free. Why do I need to do it now? What […]
It was a nightmare.
I just wanted to eat some grass-fed, organic cheese. But we didn’t have any of the kind I can eat in the house: grass fed, organic, gluten-free.
I am not supposed to eat many animal based products – actually, it is debatable whether I am supposed to be eating any animal-based products at all, but this is a bridge I haven’t crossed yet during my recuperation from surgery. The other night I just wanted some of that yummy cheese. And we didn’t have it.
Oh, we had other cheeses – the kinds that I can’t have but anyone else in my family can decide to eat whenever they want to. But that didn’t help me. Marshall and Hannah started chowing down their crappy old cheese. But there was none for me – the person who wanted it more than anything else – and it really rankled my tail feathers.
The evening devolved from dinner into a spinning pire of curses and rants – mine.
It was pretty pathetic. No one seemed to understand what I was trying to say. I can’t drive. It’s not like I can just go out and grab “my cheese” whenever I want to so I can eat it whenever I want to. I can’t even get out of this stupid house without pre-planning the whole thing with someone else. I have very little autonomy at all, as a matter of fact. It’s a real pain in the ass.
Okay, maybe not most days, but the other night it was a real pain in the ass. I was so pissed. And no matter how I tried to say it (and I used some real flamers, I’m sorry to say), no one in my family seemed to be able to understand that this had nothing to do with them or their needs or wants or abilities to eat whatever they chose – or chose not – to eat.
That night, it had everything to do with ME – what I should or should not be eating in order to create an anti-cancer environment in my body so that I can live a longer, healthier life; whether animal products are going to be okay for me or not; just how critical is going gluten-free going to be for me and my immune system functioning?
I’m sorry, but I have no clue what the answers to these questions are. Neither do my doctors, frankly – their first opinion was to just “eat whatever you want to eat” – don’t do anything any differently. I’ve learned very quickly that this is utter hogwash. What I eat matters very much in terms of how healthy – or unhealthy – the rest of my days will be. There are many scientific, food-based studies that bear this out – jillions of them. Do I have time to read and process them all? No.
So what am I going to do?
Two days before my surgery (which was two weeks ago today, by the way), I met with a nutritional counselor at Nutritional Solutions, a cancer consulting, nutrition-based company in Utah. I need to tell you how highly unusual it is for someone like me to have the opportunity to have a meeting like this prior to having surgery to remove my brain tumor. Most people get started with nutrition as it relates to cancer much later in the diagnostic process, so I count myself very lucky.
As a result of my counseling session, I was able to get nutritional supplements ordered so I could begin them as soon as I arrived back home from my surgery. I want to be clear that these are NOT “alternative” treatments for cancer, but are very scientifically-based, well-researched aides for creating an anti-inflammatory mileau inside of my body to prevent my cancer from coming back.
I’ve been on these supplements – and I’ve changed my diet drastically – thanks to you wonderful friends who have been plying me and and my family with all of the healthy foods I’ve learned about so far. Honestly, I do not know what our family would do right now without all of your support and care, so that we can continue to figure out what is going to work for us as we move forward. I am truly eating us out of house and home right now – but this is exactly what I need to be doing in order to figure out what is going to work for my body’s particular needs.
The next step is for me to have another meeting with my nutritional counselor, probably early next week, in order to “fine tune” my nutritional needs, figure out exactly why “gluten-free” is going to be so important for me, iron out my supplements now that we know I am not going to be having chemotherapy or radiation, and try to figure out whether going totally animal-free in terms of protein will be important – or not.
It’s a lot to deal with, no doubt.
Now that everyone knows my “prognosis” it feels very much like everyone thinks “well, that’s the end of that.” How untrue, from my perspective. It is only just beginning now that my surgery is over.
Here I am at UVA’s Women’s game vs. Clemson! Score is 29-23 right now with UVA up by 3 with 45 seconds to go in the first half. Here’s a picture of me and Hannah: Here’s a picture of me and Marshall, taken by our favorite daughter, Hannah! I can’t even begin to tell you just how wonderful it is to be here with my whole family. When I first sat down in my seat, my own tears surprised me, and I realized I couldn’t see the court for my eyes. It is amazing how I can be […]
I am really, truly, here at home! I got home at about 4:00 p.m. yesterday (Valentine’s Day) afternoon. This is just going to be a quick show of some of what I’ve experienced since I’ve been home and at the hospital, but mostly I want you to know that I am actually typing this myself at about 11:30 p.m. tonight – Monday. (I know, I should be asleep in bed – that is my next stop, I promise!) Here’s what some of today looked like for me: Hannah helped me with my Elf Hair today. Good thing we’d had a […]