Jul 24, 2018 Latest post:
16 minutes ago
So most of you have seen this but I am using this as a starting spot and continue on from here. This is a new one for me so I am hoping to keep updates as I move forward in this journey.
For the past 6-8 months I have had a sore on my tongue that was causing me some discomfort. I put things off like going to the doctor and dentist figuring it might just run its course, it didn’t, it got progressively worse. I ended up at the dentist in early May and was told to see my doctor for a referral to an ENT (Ear/Nose/Throat) Doctor for a consult. On May 22nd I saw the doctor and they went ahead and performed a biopsy. I waited over the holiday weekend for results and they came back as ‘negative’ for Squamous Cell Cancer, but was diagnosed with a ‘giant apthis ulcer’ or ‘Erosive Luken Placa.’ So since then I went through a round of oral steroids, which I think helped with my Tahoe 100 mile bike ride 😊 and they also did direct injections of another steroid to see if that would help. All in all some aspects improved, but the large “ulcer” on the right side of my tongue was not healing. After a couple other appointments with the ENT, last Monday she decided to take a 2nd biopsy. A couple other spots she went after and a bit deeper to get more tissue. At the same time I was sitting in the chair going through this, Beth was just boarding the Malibu Princess boat about to lose service on her phone for a week. She and Emilee were off to Young Life Malibu camp for the week, so it was JT and I this past week. I received a call on Tuesday morning with the results…Positive for what was undetected in the first biopsy, Squamous Cell Cancer. Needless to say it was a tough week without my “rock” at home to talk to and not have any contact. Poor JT had to deal with me and that was tough. I had to break the news to Beth yesterday morning when I picked them up at 3:30am as they returned home. I got to hear about her amazing week with her girls at camp and then I brought the mood down a bit with my news ☹ We talked, cried, prayed and then was so tired crashed until noon.
That brings me to today’s activity (7/16) as I had my first appointment with a private practice that specializes in head & neck procedures to get some initial answers and next steps. I have a 2nd opinion on Thursday at OHSU with another doctor. I’ll itemize the highlights I learned today and what is coming down the road for me:
Primary treatment for this cancer is surgery Getting an appointment this week for a CT scan with contrast and a PET scan to look for distant metastasis After the scans will have appointment set to further discuss details of surgery, that will happen within the next couple weeks They will remove a significant portion of the right side of my tongue and lymph nodes on the right side of my neck. During this same procedure they will rebuild my tongue using skin, tissue, and blood vessels from my left forearm Surgery will last about 6-7 hours In the hospital for 6-7 days Final pathology report about 1 week after surgery to determine if further treatment is necessary Out of work for approximately 4-6 months Six weeks of radiation treatment to begin approximately 6 weeks after surgery; That is a daily thing for 15 minutes a day Pretty sure no chemotherapy is needed in my situation I will require multiple therapy people as I learn to speak, eat and drink again and that will take time, especially the speech portion
This type of cancer is a very treatable type and has a very high success rate. They gave me an 85% prognosis at the 5 year mark so I’ll take that! I am asking for your prayer and support as I go through this journey and to be honest I am very scared. I have everything to be thankful for and you all are a big reason for that. Beth, JT, Emilee and I are processing all of this, but knowing that we are under the cover of The Lord, family and friends is awesome. I have to figure that this will be another interesting chapter in my book of life…
**Update as of today (7/20) is that I have both my CT and PET scans complete and will have the results on Monday. My surgery is scheduled now for 8/6 at Portland Providence with Dr. Bryan Bell of the Head and Neck Surgical Associates. The doctors performing the work are top-notch and amazing. Beth and I are completely at peace Dr. Bell and his team. Several appointments still to come over the next couple weeks to get ready for this but for now I’m working to not lose any more weight and get ready to fight this crap!