I know that I’ve been quiet for a while about my cancer journey, so I thought maybe it was time for a follow up. The logical place for me to begin is with the question that people ask me every day, “How is your eating going?” There are a lot of moving parts to that question, but I’ll try to answer and cover what I can without going too far into TMI territory.
Here’s a little backstory for those who have connected with me more recently. Two years ago, I had a large portion of my tongue removed due to cancer. I couldn’t speak for about six months or so and it was a year or more before I really began eating anywhere close to what would be considered normal. (Surviving on only protein shakes doesn’t count as eating in my mind!) There are so many factors involved in answering this question that sometimes it’s difficult to explain.
The biggest issue is the burning. The radiation and chemo burned the inside of my mouth. At the height of things, I had blisters, bruises, and all manner of issues inside my mouth that were so bad even cool water hurt. Talking wouldn’t have been possible even if my tongue had worked! Those burns and that sensitivity have stuck with me. (Thankfully the blisters and other issues are LONG GONE!) The easiest way to describe it for people is that it’s like having a sunburn on the entire inside of your mouth. Gums, tongue, cheek – all over. My kids joke that I have super taste because I can pick out SO many ingredients you wouldn’t even realize are there. Not from taste – but from burning! There are items from grocery store chains that will hurt if I attempt to eat them – and it’s not what you might think! Vanilla cake…burning? But there’s an additive that this particular chain uses that causes burning. It’s odd. I can tell you when Red dye #14 is in something – even when it’s not red. Ketchup, BBQ sauce – these are still off the table for me. The vinegar/acid content is just too much. So pickles, etc – they aren’t in my menu anymore either. And I used to love those! What do I mean by burning? Well, imagine someone just blended a serrano pepper into a paste (seeds and all) and painted the inside of your mouth with it. That is how many of these foods affect me. Ketchup can knock out my eating for a day or more because it just ‘lights up’ the sensitivity in my mouth. Some days, I’ll be honest, I suck it up and do it. I mean how can you eat a hot dog dry??? Ugh. So I power through some days.
With regard to my tongue and muscle control…my tongue doesn’t work as well as it used to, so anything with a lot of textures is hard for me. Salad is nearly impossible. Lettuce, carrots, tomatos, croutons, cheese – too many textures to try and control and manage with my tongue. And most salad dressings are painful at this point anyway. Rice dishes are okay but afterward I have to run straight for the waterpik. I can’t control my tongue well enough to get out the little bits and pieces that get stuck in between your teeth. TMI? If so, I’m sorry! One of the things I miss the most is ice cream cones. Can not do those no matter what. 🙁 My tongue just will not handle sticking out far enough to really lick and manage the ice cream well. I’m working on it though, so maybe someday I’ll get there!! 🙂
I am working on trying to stretch my mouth to get it to open wider. Eating a burger is hard because my mouth doesn’t open wide enough to take what would be considered a normal bite. I usually tackle anything like a burger or a sandwich with a fork and knife – for now. Someday I’ll get there!
My jaw isn’t really strong at all, so some things like bagels and heavier/thicker foods are just too difficult for me to manage. I will eat them – I LOVE bagels! But it’s a little like running a marathon. When I’m done, I can’t eat for the rest of the day or I may be sore down through my jaw for a few days afterward. I’m building up my endurance though! Not long ago we did this fabulous event for wounded warriors and their families. I smiled so huge and spent the whole day talking with those smiles that I had trouble for a couple of days afterward. My jaw ached and the muscles were so fatigued, that my lower jaw had moments of shaking (a little like when you have been swimming a lot and your legs feel rubbery…) because they were so tired. But I will take achy, tired, weak from SMILING any day!
Phew – it all sounds so big and huge, but it’s become common place for me and I really don’t have as hard a time with it as you might think. Other people tend to have a more difficult time with it than I do. Especially the wonderful folks at my church. You see, my church LOVES to feed people and so when I come to a church dinner and don’t eat, some can get very concerned. But I’m okay!!! 🙂 I promise! It’s just that sitting down to eat can sometimes be a challenge. I can’t just grab my fork and dig in. Sometimes I’ll sit and look at my plate for a long time before I get started. I need to come up with a plan of attack. 🙂 That plate pictured above is a little like tackling a marathon for me. I have to go about it the right way or I will end up hurting.
It’s all a little odd for me because before the cancer, I ate too much. All the time. I had no regulator on that. Food was my go-to for stress, celebration, depression – everything. I know it wasn’t good or healthy and I am SO glad to have that behind me.
However, I’m the flip side of the coin now. I’m still overly concerned about food but in the other direction. It consumes a lot of my thoughts but it’s always strategic now. There are days that if I didn’t have to eat at all, I’d be happy to skip it. I force myself to eat to keep going – it’s fuel. Not fun. I would love to fall somewhere in the middle between those two concepts!
My speaking is OFF THE CHARTS AMAZING! The doctors told me a year after my surgery that they had not expected I’d ever speak again. In fact they thought parts of my career might be over. The trach I had to deal with, losing so much of my tongue and then chemo/radiation all focused in my mouth and voicebox? Yeah – I can see that now but I’m sure glad they didn’t tell me that. I’m one of their success stories! When talking, you’d never know I hadn’t been able to speak for over six months. 🙂 That’s an awesome praise. I mean I even spent a good portion of the year after my cancer working primarily by phone on the theatrical release of two films! And none of those people I talked to ever knew that the year previous I was unable to speak. 🙂
Oh and my wrist is doing really well. (Here’s a pic for everyone!) This is what they used to rebuild my tongue. They took the whole circulatory portion of it (veins, etc) and covered it in shark cartilage to protect it. (Kids always tell me I need to be in Sharknado and refer to me as a Jedi- after all this is what Luke’s fake hand looked like at the end of Empire Strikes back!) I do still have pretty severe nerve damage in it, so I wear a brace or protective sleeve over it when I go out, but function has fully returned and I couldn’t be happier about being able to type and write without too much trouble. I’m so excited that I can still do that without difficulty. For a long time, I wondered how I could even proceed in my career. There are programs available to you if you are unable to type but those are voice activated. I couldn’t talk either! I wondered if I’d ever be able to tell stories again. I’m beyond thrilled that I still have the opportunity to do that.
My journey continues to be a praise – all throughout. It was difficult and miserable and the hardest thing I’ve ever done, but I refuse to give into anything but praise about it. And please don’t think anything in this post is complaining. I hope I haven’t come across that way. I just get asked so often, I thought maybe if I explained it here, it might help folks understand a little more.
You know, I’ve had people mention to me that they wish it had never happened for me. I sort of wish that too. I mean it would be great to eat an ice cream cone again but at the same time, if it had never happened, I wouldn’t have all of the lessons I’ve learned. I wouldn’t take those back. I’m very thankful for the lessons I learned and where I am. I’ve learned not to take things for granted and to praise in the middle of the storm.
So I’m still here and hopefully for all those that have been asking, I’ve been able to clear up a few things about why I don’t eat a lot or choose to eat out with others. (I can be a really messy eater these days and communicating WHILE eating? I’m not sure how great I am at that yet! LOL!) It’s a great reminder of how the recovery from cancer isn’t just over with your last radiation or chemo treatment. For many who watch that cancer journey from the outside looking in, your surgeries, chemo and radiation are over – it’s over. I wish it were that easy. It sticks with you for a while. But every day is a gift. Every word I speak is a gift. And every script, article or proposal I write is a gift. (Even the ones that don’t go anywhere! LOL!) I won’t ever take any of that for granted again. 🙂
Thank you all for continuing to stick with me and love me through this part of my life too! 🙂 You’re all spectacular and amazing blessings. I’m grateful for all of you.