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Wednesday, July 27, 2016

What the Hell...

Five years ago I woke up one morning and had a painful white patch under my tongue on the left side. I was 8 months pregnant, on steroids every day for rheumatoid arthritis and thought it was surely just some weird pregnancy symptom.  I doctor hopped and ended up at an oral surgeon who did a biopsy to "rule out the very unlikely chance of cancer".  I remember being so hugely pregnant and the nurses being afraid I was going to go into labor when they did the biopsy.  I also remember it being the single most painful thing I had ever done in my life.  Stitches in my tongue when 12 months pregnant and a crazy toddler and a full time job.  It was fun.

But, the biopsy came back negative and the doctor told me it was a callus since my teeth are so crowded and it would go away and not to worry about it.  Cool.

Over the last 5 years, I had that beautiful baby girl, I worked my butt off in my career, my toddler became a little man, and we moved to Oxford, MS for a new job opportunity and to be closer to family in Memphis.  The tongue patch never went away, but it only bothered me maybe 3 times a year when it started to hurt kinda like when your taste buds go haywire.  It always only lasted a day or two and life moved on.

However, this past May I noticed a lot of pain from the area.  I ignored it at first but the pain did not subside.  I gave it a look (not super easy to see the underside of your tongue), and it looked much larger and appeared to be spreading down the back of my tongue.  Alarming.

I had not been to a single doctor in Oxford yet, so more doctor hopping ensued and I found myself at yet another oral surgeon.  He was much more concerned than my previous one 5 years ago and ordered a biopsy again.  He took 3 large sections of my tongue (I am not going to keep harping on this, but SO painful) and found that the displaysia had moved from mild to moderate.  That is a pre-cancer sign and once it hits severe, cancer is likely to form.  To say he was concerned is an understatement and he made me go to another doctor asap for a second opinion.

I then ended up at an ENT and he took a 5 second look into my mouth and immediately made eye contact and said "I am telling you right now that you have cancer and we are going to take this seriously".  I may or may not have burst into tears in his office like a blubbering baby.  You like to think you would handle news like this a bit better, but I guess I am human after all.

Basically, he said all indications are that this will one day become cancer, so why wait for that to happen?  He wanted to be proactive, prove the cancer is present now, and attack it immediately.  I had to say I agreed, as terrifying as it was.   

So, I scheduled yet another biopsy for 2 days later and was told to get my ducks in a row and plan for where I want my cancer treatment to take place. 

Spinning.  I was spinning and nauseous and cold and hot and scared and angry and devastated.  

I went home and cried on Brian. I called my poor mom who was at work and sobbed (literally, sobbed) on the phone to her for like an hour.  I apparently needed to get some emotions out.  

My amazing family immediately jumped into action and by the next day, we had a google drive and calendar set up for all resources and to-dos, we had a group Skype call - 8 people in 3 different states - and I seriously felt wrapped up in a warm family blanket of everything is going to be ok.

I had my surgery on Thursday morning and the official diagnosis came in as expected.  Squamous cell carcinoma.  It sounds yucky.  We decided I would go to MD Anderson in Houston, TX which is the #1 rated cancer center in the country, possibly the world.  I originally thought it was out of our reach due to cost, but my selfless family insisted I go to the best and we would make it work.

This leads me to the part of this whole thing that has brought on the most tears of happiness and gratitude.  My brother set up a GoFundMe account and sent it to friends and family to help with these bills.  As of right now, less than a week since it went live, it has raised over $12,000 and I have even more in personal checks people have sent me directly.  We head to Houston in a week and the flights are covered already and we have totally free accommodations set up for our 10 day stay.  I cannot even wrap my mind around how generous, kind, and supportive people are.  I am humbled and so, so grateful.  I know I will never be able to repay this much kindness, but it will be my mission to do so every day in any way that I can.

I have my PET-CT scan today to see where/if the cancer has spread beyond my tongue.  I will get my Stage and the severity.  I am so scared about what I may learn, but I am ready to get some answers and solid information so that we can move forward.  Whatever we learn this week, the plan remains the same - attack this crap with everything we have and don't look back.  We are going to be aggressive, positive, and informed. It will be hard and yucky and painful, but we are facing it head on and with gusto.  

Thanks for all the prayers, love, and support.  I have already benefited from them immensely.  Here we go!

2 comments:

  1. You've got this. Your family's got this. Your friends have got this. We love you.

    ReplyDelete
  2. I couldn't even sleep last night, because I was thinking about you all night. The warm blanket isn't just a family blanket- there so are many people sending you love and support and that are in this battle with you.

    ReplyDelete