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May 10, 2017
I wanted to share some information with you and have found this website that will make it easier for me to provide timely updates on my treatment to anyone with an interest in monitoring my progress. I am grateful for your interest, thoughts, prayers, love and friendship as we embark together on this journey. I’ll warn you before you get started that parts of this story are going to seem pretty bleak, but as you read, please keep in mind that the end of the story is good news and has a happy ending.
Last November, during a routine dental appointment, a very thorough dental hygienist discovered a small lump on the left side of my neck. They recommended that I get it checked-out by a MD just to play it safe.
For some reason, contrary to my typical reaction to blow it off, I made the appointment a doctor. While there, they did an ultrasound of the lump. While they could not be certain about what the lump was, they did find that it was located in what is called the carotid body. That is the place on your neck where your carotid artery splits into two arteries. The lump (or mass) was located in the fork of that split of the carotid arteries.
The initial concern was that the mass could be a carotid body tumor and so I had a CT scan to try to rule that out. While the scan didn’t look like a typical tumor, the only way to tell for certain would be to do a biopsy on the neck mass. To collect the tissue for the biopsy, they would have to grab a piece of the mass by sticking a needle in my neck. However, the location of the mass was problematic as the potential to puncture my artery made it a pretty risky approach.
Over the following few months, I was referred to 4 different doctors and had 5 combined ultrasounds and CT scans. After all of this, it was eventually determined that the mass was not a tumor, but a very large lymph node. After being referred to an ENT, he scoped my throat and found what appeared to be an unusual skin tag on my left tonsil.
He decided that I needed surgery to remove the growth on my left tonsil and send it for a biopsy. This was just a few weeks ago. I had the surgery during Spring Break and he removed the “skin tag” and part of my left tonsil for biopsy. Although he had hoped to remove the entire growth, the Dr. discovered that the growth had actually burrowed into the tonsil and connective tissue. Therefore, the doctor was unable to remove the entire growth from my tonsil.
As anticipated, the biopsy returned as malignant and the original lump on my neck was most likely to be where it had metastasized (spread) into my lymphatic system. A little research will tell you that throat cancers are usually undetected until it has spread to the lymph glands and is first detected by finding a lump on your neck. By that time, the cancer is already in either stage 3 or stage 4.
The ENT ordered a PET/CT scan and referred me to an Oncologist. A PET scan involves having a sugar-based radioactive isotope injected through an IV followed by a thorough full body scan. You have to wait an hour after the contrast media is injected and the actual scan takes 2-3 hours. It checks to see if the cancer has further spread to other parts of the body through the lymph system. I had my PET/CT scan done on Monday, April 24th.
I met with my Oncologist for the first time this past Wednesday to review the results of the PET scan and to develop a plan to address the problem. Teresa went with me to the Oncology appointment, and here is what we learned.
(1) I have been diagnosed with Stage 4 Squamous Cell Carcinoma of the Oropharynx (tonsil) – officially stage 4(a). Meaning that the cancer has spread to the lymphatic system. (2) Ten years ago, the prognosis would have been that I would have a 20-30% chance of surviving 3-5 years after the diagnosis. (3) The particular type of cancer I have is caused by HPV (specifically p16 HPV). Believe it or not, this is great news because this particular type of cancer is much more treatable than most. So, even though it is stage 4, my chances of being “cured” are very good.
Based on this, the next steps in my treatment plan are: (a) Starting the week of (5/15 – 5/19/17), I will begin receiving what they call “combined treatment”. That is, a combination of radiation therapy and chemotherapy. (b) I will have radiation therapy every week day for the next 60-90 days. That means no overnight trips for at least 120 days. (c) I will have 3 “rounds” of chemotherapy – each 21 days apart. The chemo drug they intend to use is called CISPLATIN; which is the perfect drug to not just stop the spread of the cancer, but to wipe it out completely. (d) The downside of both of these treatments, when focused on the neck area, is that some of the side effects are pretty severe. Some of the side effects are certain, while others are likely, and still others are possible. (e) Among the certain and highly likely side effects are: (1) Hair loss (2) Nausea (3) Fatigue (4) Anemia (5) High risk of infection (6) Nerve damage (usually tingling of extremities) (7) Hearing Loss - probably limited to just one ear, but likely permanent with accompanying constant ringing in my ear. (8) Major swelling, burning and sores in my throat and esophagus that will prohibit me from being able to swallow.
Over the past week, I have begun the pre-treatment process which involves: (1) Mucho blood testing and lab work; (2) Meetings with Oncology Team, Chemotherapy Nurse, Radiation Oncologist, etc. (3) Meeting with a Nutritionist (probably a good idea for me anyway); (4) Meeting with Speech Therapist - my voice box will be fried and I will eventually have to re-learn how to swallow; (5) Surgical installation of a "port" in my chest for chemotherapy infusion and IV fluids; (6) Surgical implantation of a feeding tube into my stomach to allow nutrients to be given to me without me having to swallow.
So, as you can tell by now, the next few months are going to be pretty brutal and it is likely that I’ll be missing a good bit of work. However, as promised, there is good news.... The prognosis is very good and odds are good that 4-6 months from now I can be cancer-free.
Those of you who know me well are aware of my difficulties in asking for help and my reluctance to show my vulnerability. I
I’ve got great doctors, a wonderful support network, and excellent attitude. The news I got from the PET scan was actually better than even the most ideal scenario I had imagined going into it.
Bottom line: Don is about to lose some weight and look pretty sick for a while, but at the end of that road with all of you pulling for me, my future looks so bright we gotta wear shades.
I'll keep you posted as often as possible and want to be sure you know just how grateful I am to have people like you in my life.