What a shock it is to go from being seen and confident to feeling invisible and helpless. It truly is like being in another dimension. The crazy part is that I’m the same person! My mind is the same, my opinions are the same now as they were before my last surgery and I can still provide plenty of value. The difference is before people would listen to me and follow me and now they either ignore me, pretend to understand me when they clearly don’t or worse yet patronize me! I’ve spent the last 20 plus years working in the human resources field for fortune 500 companies making it to executive status. I’ve led large teams across multiple countries and traveled internationally presenting to large audiences. I was the officer and managing director of my company and held a board seat. I was on top of my game all by 38 years old. I felt great and had confidence in myself and my skill set and took pride in having a seat at the table in an age where it was a mans’ world. I was killing it at work and at home too! A bit before that when I was still working my way up in HR and was expecting my first child at 27 years old I found out I had tongue cancer.
Tongue cancer….who me?
It was a total shock being young, pregnant and never a smoker. I was confused and in shock and just wanted to focus on getting better for my new baby. After long discussions with my now spouse we decided I should be aggressive with treatment. We met with some doctors and landed on a treatment plan and it was off to the races!
Time for action
I had a tongue excision while awake (so I could stay pregnant) and after delivery I underwent more tongue surgeries, a neck dissection and 35 rounds of radiation. I was lucky to bounce back pretty well after learning to talk again and keeping my speech and eating ability long term. In the following 9 years I lived a great life working up the ranks in HR and having two more children.
Round 2
In 2018, I noticed a spot on the opposite side floor of mouth. I went to the oncologist and the ENT both who thought it was a simple dry mouth sore from radiation that wouldn’t get better. I stayed on them with my concern and wanting a biopsy just to get an MRI that showed ’all clear’. Two doctors and a scan….I thought let it go and stop being a hypochondriac even though in my gut I just knew it was cancer. Worst mistake of my life. Trust your gut is the lesson learned here! It was indeed cancer and it went undiagnosed until August 2020. By that time it was out of control and it had grown quickly and had thickened under (like a root). I underwent 4 CT scans with contrast (painful) and more waiting. I finally harassed his office for results and was told ‘nothing concerning’. I just knew that wasn’t the case. I could feel it. That’s the problem here, as a survivor every pain you have you think, cancer! You basically get viewed as a hypochondriac because normal pain happens too especially after all the treatment already done. But for OC survivors we know if something in the mouth doesn’t heal on its own in 14 days it’s cancer. Well, the ENT put me on a lovely cocktail of powerful antibiotics, antimicrobials and steroid cream for my neck (maybe some skin cancer here too just for added fun). Of course that 3 week concoction did nothing and the spot was unchanged. Finally the moment I’ve wanted which is biopsy. We survivors love these because you finally get real answers based in science and not the ‘ol hey it’s ok’ crap. So yes, cancer again the same squamous cell carcinoma but this time it’s on my healthy (right side) so that’s now being invaded. It’s also spreading and has reached lymphatic structures which means another neck dissection on my healthy side which is simply inhumane. I was told I need a total tongue reconstruction, probably something with my gums and maybe mandible and some good old fashioned chemo. This was my worse nightmare coming to life.
On September 17, 2020 I underwent the following:
– Total reconstruction of the floor of mouth and base of tongue area including flap
– Removal of skin, arteries and blood vessels from my left inner wrist to put into my mouth reconstruction (this became my floor of mouth).
– Removal of skin from my thigh to put over the wounded left inner wrist
– Loss of five teeth in the back of my mouth on the right side, with exposed bone but some of the tissue from my wrist was added to provide some protection
– Jaw bone was shaved down under where the teeth were
– Right neck dissection to remove all the lymph nodes and take blood vessels from here for mouth reconstruction. (I’ve already had this done on my left side in 2009)
– Hospitalized for two weeks
– Trach and feeding tube for entire hospital stay
All of this was followed by 8 weeks of targeted infusions (chemo, erbitux actually) and I underwent a second session of 60 rounds of radiation 5 days a week for 6 weeks.
Round 3
I wish I could tell you after all this and rehab that I was clear but it came back in April 2021 and I did another tongue surgery that left me more impaired with speech. It was a smaller surgery and just an overnight in the hospital. I was concerned that it was back after all that treatment but I was still optimistic that they caught it when it was a small area.
Round 4
They thought they got that little bit left behind but nope….it came back again in December 2021 on the other side! This time I knew it was really life or death and that my treatment plan had to be the best as I was ’all in’. I also found out that one of my ovaries lit up on the PET scan so I went ahead and had that removed in May just a couple weeks after this last tongue surgery. Luckily, the ovary was benign so we could focus on the next huge battle with the new cancer.
On February 28, 2022 I underwent the following:
– Left neck dissection (this is number 3) -Removal of all my bottom teeth
-Removal of my bottom jaw
-Total removal of my tongue
-Fibula free flap where they took the fibula bone from my leg and made a new lower jaw with it, titanium straps, screws and staples to hold new jaw together
-Skin graft from my thigh
-Skin graft and tissue graft from my leg to build a new ’tongue’ that I will never be able to move
-Another trach
-Insertion of a g tube for feeding that may be permanent and probably other horrible things I’ve put out of my mind!
This surgery had me down for a good 6 months with physical therapy, in home nurses multiple times a week, permanent speech and eating issues, mobility issues and more. The metal holding my jaw together is rejecting and pushing through exposing the hardware and my new bone and is requiring constant nurse wound care and will require another large surgery in Feb/April of 2023. I have to deal with the exposed bone and painful hardware for another 7-8 months. I can’t catch a break!
The Aftermath
I suddenly found myself wheelchair (then finally walker) bound, unable to advocate for myself or my kids given my severely impaired speech, unable to fully take care of basic hygiene for myself and not able to cook or clean or drive for my family. I was able to bounce back three times before and keep working even with a speech impairment and this time I realized I was down for good on the working/speech/eating front. That’s a hard pill to swallow! This is what made me feel invisible and made the world around me which was once colorful and vibrant turn black and white. I’m still not ‘in the clear’ and my life is what it is….the joy of food and conversations gone….the pride of working and being a bread winner gone….the fun of being an energetic parent cheering on the sidelines and running to all the games and volunteering…..gone in a blink of an eye. What now? This is what I will explore on this blog….how to move forward and control the things you can and work with the things you cannot. I hope you join me on this journey!
