First off, I'll be happy to make a signature block once I can figure out what all of that jargon down there means (and some of it I'll have to look up in my medical reports I guess). But in plain English
this is my story:
I'm a 36 year old female, never smoked, never drink,
HPV- person that doesn't really understand how this happened to me
I bit my tongue (I think) overnight in July 2015. The spot never healed correctly, a first visit to my dentist got me an antibiotic that cured the inflammation, and a second visit in October sent me to the Oral Surgeon over concerns it wasn't healing. I had my first surgery right after Thanksgiving - it was a small, outpatient surgery done at my local hospital, and they removed the damaged tissue. Upon biopsy, they determined I had squamous cell carcinoma in my tongue and I was referred to another oral surgeon at a somewhat-local University hospital. After an MRI in January 2016, it was determined that 50% of my tongue (thankfully not including the tip) would need to be removed. I had that surgery, which included the removal of tongue and a major neck dissection to replace the tongue tissue with tissue from my neck and also to remove 160 lymph nodes. Waking up from that surgery was the scariest thing I could ever imagine. I couldn't see well (no glasses on), I couldn't talk, I couldn't breathe (I had a ventilator and nobody described "how" to breathe with it in), and I was chained to the bed (so I wouldn't wake up and start ripping things off of me) without any family near me. The week I spent recovering in the hospital was also scary. Waking up in the middle of the night, not being able to breathe (my trach clogged regularly, they finally put me on some form of asthma-type meds that helped immensely) and not being able to talk was SO SO scary. Fortunately my husband (we had only been married 6 months) and mother-in-law took turns staying in the room with me so I was never alone. And they quickly learned that if I woke them up by flashing the room lights on and off, that they needed to call a nurse immediately. My own parents lived over 5 hours away, and my mother was undergoing chemo and radiation for her breast cancer (she died this past April from one of the tumors in her brain while I was in my own chemo session) - and weren't able to come stay with me.
I was sent home with a feeding tube in my nose (quite a lovely experience) for 2 more weeks until the hospital got a swallow test scheduled so I could have it removed. After that was done, I was quite happy to finally be able to shower and get the last of the dried "stuff" out of my hair from the surgery 3 weeks prior. I also began to eat and speak again for the first time in 3 weeks. I healed up well, and was back to about 95% of my abilities before the follow-up treatments began.
I started simultaneous radiation (32 treatments) and chemo (once a week) in March. While this wasn't nearly as scary as the surgery, the effects were much worse. I dealt with the first couple of weeks fairly well, but then the chemo began to make me sick. It was hard for me to eat much and keep it down, and things began to burn the inside of my mouth. I survived all of my treatments, completing them in mid-April 2016. The following weeks were also a nightmare. I stopped being able to speak during my last week of radiation. For the first 6 weeks post-treatment I was only able to drink Ensure and Water. The Ensure burned my mouth badly, and it took me about 30 minutes to consume one bottle. I believe I was only getting about 1000 calories per day. I ended up losing 50 lbs. (which took me down to about 130lbs - a healthy weight for my size anyway).
Finally, after 2 months, I was able to speak without pain (although my tongue still wears out of the course of the day, I can hear myself slur as I tell my husband goodnight) and I am still seeing a speech therapist (my "s" sounds are still fairly bad, but I'm happy to be intelligible). I can chew well, but I struggle getting my tongue to move food easily, so I take about 45 minutes to eat a meal. I still prefer soft foods (potatoes, pasta, milkshakes). My biggest eating issue is that food gets stuck between my teeth and is very painful to my gums. I struggle the most with meats as they're all stringy and I end up having to floss after every bite.
I have my follow-up scans scheduled for early August (a MRI and a PET). I hate the MRI machine; it’s quite scary to be in for 45 minutes. I’ve never had a PET, but the dietary restrictions for it mean I’ll almost have to fast for 24 hours before. I just pray that those come back clean and I can be done with this phase of my life and move on. My husband and I would like to be able to start a family now!
Glad to have this group around and I’m happy to help anyone I can! I have many good “lessons learned” from this journey!
