August 23 was just 59 days ago. Just a blink of the eye in the scheme of things, really. I had taken John to a routine dental cleaning, and always trying to make good use of my time, decided I would go ahead and get my never-have-had-a-cavity teeth cleaned, too. It seemed like a sensible thing to do, rather than just idly sit in a waiting room. My practicality may have saved my life.
Near the end of my cleaning, the dental hygienist asked me if I was aware of the spots under my tongue. Nope. No pain, no discomfort, no symptoms. She suggested the dentist come and have a look. He did and wrote a referral to a local oral surgeon. They were calm. I was calm, yet the suggestion that I follow up on this “right away” was clearly stated and heard.
The earliest I could get an appointment with the oral surgeon was September 6. He took one quick look — and I do mean a quick look — and agreed the “suspicious area” needed a biopsy. It was scheduled for September 9. On the morning of September 9, I received a phone call saying the doctor would not be in and that I would have to wait until September 15. Without any quicker options, that’s the best I could do.
So, on Thursday, September 15, I nervously went to have the biopsy. I have had other biopsies – all small, none comfortable, and all tolerable. I was totally unprepared for what happened next. Under local anesthesia, a rather large tongue biopsy was excised, large enough that five stitches were required. It was packed with gauze, and still bleeding, I drove myself home after a stop at a local pharmacy to pick up pain meds and antibiotics. I assure you that the local anesthesia had worn off long before I got home. The sample would be sent off for pathology reports. And now we wait.
I canceled piano lessons the following week because, although I could talk, I sounded pretty odd and it was truly uncomfortable. Almost 10 years ago, I had a very bad fall which resulted in biting my tongue in a way they called “through and through.” In addition to a couple of cracked ribs, and a mild concussion, that trip to the ER earned me 6 or so stitches across the top of my tongue, about midway back, and a matching set on the underside of the tongue, plus 2 more between my lower lip and chin. So, yeah, I’ve had experience with stitches in the tongue before so I knew I could handle it this time.
In the midst of this difficult story, there was a great joy. Genevieve River, daughter of David and Lisa (my youngest daughter), was born on September 27. Vivie’s entrance into this world was not an easy one, but everyone was soon doing fine and we give happy thanks and praise. I was present at the birth of my first two grandchildren and had hoped to be in Tucson for Vivie’s arrival, but because of the biopsy and other complications, this time it simply was not to be.
My appointment to receive the pathology report was Wednesday, September 28. The doctor walked in and began, “I’m sorry. It’s cancer.” He went on to say it is invasive squamous cell cancer of the tongue, felt we had caught it early, and referred me to an oncology team and surgeon he described as a “rock star” in this specialty. My knees were weak, but again, I drove myself home and tried to get my head wrapped around this news.
My first meeting with the surgeon at OSF St Frances (Peoria) was on October 4. He was encouraging, felt this would be a surgery-only solution and I would go on with my life. The exam was thorough enough, and he could not detect any swelling of lymph nodes and such. Alrighty then.
If additional (radiation, etc.) treatment seemed likely, I considered transferring to the University of Iowa for care. It simply was the practical solution since I would be relying on my daughter Laura for transportation and additional care. Besides, in addition to being an excellent facility, U of IA is more convenient for her. But, since we were looking at a surgery-only treatment, I opted to continue in Peoria.
Waiting for the surgery to be scheduled was very, very difficult, but on Wednesday, October 12, I was informed surgery would be Monday, October 17. There was an absolute flurry of things that had to be completed prior to the surgery. I was and am impressed with how the entire OSF staff at three different locations all pulled together to make it happen. It was a beautiful thing.
Laura drove me to Peoria and, of course, stayed during the surgery. The day began with Sentinel Node scans. There’s an entire additional medical story that could go with that one, but the short version is it was one of the most difficult things I have ever endured. Four injections of a radioactive tracer went into four different tumor sites on my tongue to show how the tumors drained into the sentinel nodes. The node locations were marked on my neck for removal during the surgery.
Surgery began around noon and took about an hour and a half. I have never had major surgery before so I really didn’t know what to expect, yet it was somehow mostly as I had anticipated. Well, almost. I knew a large portion of my tongue would be removed, and it was. From my two previous experiences with stitches in the tongue, I knew there would be a lot of swelling, and there was. What I didn’t expect was the over 2″ incision in my neck to access where the sentinel nodes were removed (ominously called a neck dissection), the pain associated with that, and the most horrific headache I’ve ever experienced in my life.
I was in recovery for about 3 1/2 hours, but Laura was able to come and visit briefly, which helped a lot. Finally, moved to my room, I was given morphine, but it absolutely made no difference to the headache. I had an ice pack for the neck incision site, but used it and asked for more to cover my head with ice. Swallowing was impossible, and suction was only allowed after I really wouldn’t give in. It was a miserable night. Around 4am, I didn’t feel good at all but finally felt like I would survive.
The big hurdle to being discharged was the ability to swallow, so I worked really, really hard to accomplish that goal. A lovely speech therapist patiently showed me how to take pills using applesauce, and accepted my word that only liquids were going to make it past the swollen stump of my tongue. By midday, with great effort and concentration (and pain), I could swallow broth, tea, and melted sherbet. Jello was still not happening because I could not move it around. But she agreed I could go home and by that time I was ready.
So, where are we now?
While I was waiting for transport to take me to my car, I snapped a quick picture. Not the most flattering photo I’ve ever taken, but under the circumstances, it really is quite remarkable. Just don’t ask me to open my mouth and say “AH.” 🙂
Multiple frozen samples were taken for analysis. Just before I headed home, I learned that one of the margins was not clear. And we are waiting for the pathology report on those sentinel nodes, too. It’s now 5 days after surgery, and I’m still on liquids only, still swollen, and still sore.
Professionally, it was easy to see that my days as a piano teacher had come to an end. Fifty years is a pretty good run, so I can’t complain. I’m still trying to decide how my YouTube channel and other ventures will look in the future, but for now, those things will just have to sit on the back burner and simmer.
Is there a bright side to all of this? Absolutely! The very best part is seeing how God’s grace and mercy have been guiding every step, beginning with that initial routine dental cleaning. I am surrounded by prayer warriors who are lifting me before the throne of God and claiming that healing will come my way. I am blessed beyond measure with friends and family who check on me, run errands, and do whatever is needed. They are the hands and feet of God’s love on this earth. Make no mistake, this is a difficult journey, but I am not alone.
I am a soul. I have a body, and this body has a diagnosis of tongue cancer. My soul belongs to Jesus, and I pray that yours does, too.