Today marks the 1-year anniversary of my cancer diagnosis.
Mark and I were heading to the farm, and we were stopping on our way to get the results. Mark was staying in the car with our puppy, Adrian, and I rushed inside, assuming positive results.
I had a spot on my tongue for years. I noticed it before the covid shutdown, and although my dentist kept bugging me about it, I just brushed it off. But lately, I had noticed a change, and it started to really hurt. Even the thought of the biopsy was scary, not because of the results but because of the pain. I thought if my tongue couldn’t heal this laceration, imagine what the biopsy was going to be like.
Yet still, I was pretty optimistic that everything was going to be fine. Mark and I even talked about how I was going to have to get a crown to keep my teeth from rubbing that spot.
When I sat down in the chair and looked at the doctor, I knew. He opened by saying, “I have been dreading this conversation all day.” Now, if you know me, I am a pretty no-nonsense kind of gal, and I said – “OK, biopsy came back as cancer, right?” He confirmed it was.
“OK, what’s next?” I asked, and as he was trying to delicately share with me the options, I cut to the chase. “Which one would you do?” He recommended going to Cancer Treatment Center of America (CTCA) and told me to talk it over with Mark and tell them where to send the paperwork once we had decided.
I went to the car, opened to door, and told Mark. We reviewed the options in the parking lot and made the decision to drive to CTCA for treatment. It is in Newnan, GA, which is about 1.5 hours away, and we pass the other 2 options on the way. It wasn’t convenient, but that wasn’t what we were looking for.
Since we had made the decision, I walked back into the office and told them our decision and to please send the paperwork to them. Meanwhile, Mark was on the phone with CTCA, and we had an intake interview that evening to get the process started.
Driving to the farm, we did the thing you shouldn’t do – look on Google for a diagnosis. The next 2 weeks were the worst two weeks for us. We were both sure I was going to die tomorrow or at least the day after. It was a very dark time for both of us. We had prepared for years for me to outlive Mark. We never EVER considered the option that I would go first. This could change everything, and quite frankly, it did change everything.
How does a white women in her 50’s who NEVER tried ANY tobacco products, eats clean, and has no family history of cancer get tongue cancer? This will always remain a mystery to me.
We met the doctor for a consultation on the 24th, and I knew we had selected the right place. After much deliberation of the care treatments, we scheduled surgery for the 7th of July. Interestingly, it was my granddaughter’s and daughter-in-law’s birthday that day, so I will never forget that date. It was the day I lost 1/3 of my tongue.
The good news is that they got it all. I am cancer free, and I am thankful for that, truly. Yet, there is not a minute of the day that is “normal” for me any longer. While on the outside, I look 100% fine and healthy. I have lost 50 pounds. I can speak without most people noticing any change.
But taking part of your tongue comes at a price. I have developed severe nerve pain that will never go away but is manageable with a daily pill. I have to spend 64 minutes a day (half in the AM and half in the PM) on a lymphedema machine that I have to carry with me, in its own suitcase, everywhere I travel. I get tired easily. I can’t sing in church as the tongue movement hurts too bad, so I am learning sign language so I can participate. That part has actually been challenging and fun.
Here are the lessons that I have learned this past year. I share these in the hope that the lessons here might inspire you not to wait until you have a life-changing event.
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- Don’t put things off. I waited too long to get my diagnosis. I am not 100% convinced it would have changed my outcome, but being proactive is still wise. Life is precious and short. Make time for the things you want to do & see.
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- Have a backup plan. Everyone relied on me. I literally only took 1 week off from my businesses after surgery. Not a good idea. I really should have allowed my body & mind more time to process and heal. I am happy to say that I now have better systems and much more support.
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- Be thankful for what you have. You have absolutely no idea what it’s like to be able to chew your food without thought. Sing & speak without having to concentrate on every movement. I still must do therapy every day just to be able to function. Thank your tongue – it does a lot!
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- Ask for what you need. This past year, Mark and I have made some radical changes. We are moving, simplifying our life, enjoying each and every moment together, and taking time to just be together. If I don’t love it, I am hiring someone to do it, or it just doesn’t get done. Our next hire is a daily housekeeper & cook, so we can spend more time doing what we want to do. This applies to friendship and family as well. We no longer do things out of obligation. We do things we want to do. Life is too short to fill it with people and tasks that don’t bring you joy.
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- Don’t make assumptions about people. People assume that because I have lost all this weight and look good, I am doing great. Sometimes I am great, but sometimes, I am not. I have learned that you never know what someone is experiencing. You don’t know what they are dealing with or going through. Either ask them how they are doing and mean it, or just talk about something else. I promise, if you ask me, I am going to tell you the truth about it. I am tired of tippy towing around you just to be polite. So don’t ask me if you don’t want to hear that I might be having a crap day.
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- It’s OK not to know what will happen. I had a plan since I was like 8 years old. I can’t even go down the street without an agenda and a plan. I have had to learn to relax a little bit and focus on what is important. This is something I still struggle with, but I am getting better and feeling a lot less guilty about being “selfish”.Funny aside: my granddaughter Aria seems to be like this as well. We were at her house this weekend and were reading the comments from her classmates and 4 of the 10 stated she always has a plan. I just laughed. 😉
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- Love completely. When I think about my demise, I want to leave my mark on this world and leave all who knew me a little better off. I want my loved ones to know that they made me a better person because I loved them. I want them to go out and make the world a better place because I influenced them.
There are probably many more lessons, but I will stop here. I share this story in the hopes that you will examine your life. Do you need to make some changes? If so, please do it before it is too late. You have a lot to offer and I am excited to be here another day to witness it.