Hello friends and family. Wow, it feels like forever since my last blog. I’ve had many inquiries lately, so I felt compelled to catch you all up to speed. Much has happened over the last month or so. I’ve had a few medical appointments, significant developments in my overall condition, and began a new, exciting adventure. With so much to talk about, I fear this will be a long post. So, grab a nice beverage, get comfortable, and settle in for a long one.
So, I’ve had a few medical appointments over the past month. I saw my military physician, my ENT doctor, and the medical oncologist.
I scheduled a follow-up appointment with my military physician in early August because I wanted him to know I was back to work – no longer following the limited duty order he has issued for me. I also wanted him to know where I was in my medical treatment so he could report my progress to the medical evaluation board. Like the other doctors, he was very impressed with my progress. I let him know that my neck was giving me some problems, mostly due to the persistent lymphedema. I also let him know my tinnitus had not fully disappeared, and that some ringing can be noticed in both ears. He asked that I take it easy as I returned to work. The doc asked if I needed a note explaining my need to work a modified schedule, but I declined since my fire chief had already agreed to those same terms.
As far as the medical evaluation board goes, I am still eagerly awaiting news that might provide some hint as to what my future has in-store. My military physician told me he was finalizing my board letter, which would then be evaluated by a panel of physicians, who in turn will determine my fate. I did talk to a couple veterans’ transition assistance personnel who shed some light on what I can expect over the next few months. To sum it up, I will eventually be required to meet with doctors from the VA, who will spend a couple days with me going through all seventeen years of my military medical records. They will help determine my level of disability so if I am faced with a medical retirement, I know at what retirement pay rate I will receive. This would be a medical retirement in lieu of the tradition 50%, 20-year retirement payment. If I do not qualify for a high enough medical retirement payment, I will repeal the medical retirement in hopes of staying in my full twenty years. BUT…. Right now, nothing is for sure. For all I know, I might be returned to full duty status… although highly unlikely based on my current medical condition.
The last six weeks have been interesting as far as my medical condition goes. I am now getting the full taste of what life after cancer will be like. The lymphedema changes daily… some days better than others. At its worse, the pressure from the lymphedema puts pressure on my trachea, which produces the feeling of my windpipe being restricted. It also causes my neck, shoulder, and back muscles to ache. When I look downward, the restriction in my windpipe causes a reverberation when I breathe, which is annoying. My saliva production has also taken a huge hit. I wake-up in the morning with no moisture in my mouth and throat. I choke and cough until I can get some water into me. Even then… swallowing has become very difficult when I am dry and I find myself struggling to get water down without choking. A single swig of water usually takes me three to four repetitive swallows. If I don’t swallow fast enough, water gets into my windpipe. Luckily, there is no pain associated with swallowing.
My taste continues to improve. I can now sense all taste types: sweet, salty, savory, bitter, etc. Unfortunately, I am not tasting things the same way I did prior to treatment. The decreased level of saliva production hurts my ability to taste some things, and kills my ability to eat dry foods: chips, popcorn, breads, etc. The moister the food, the better my taste detection works. Also, foods with a bold flavor taste better than foods that are typically bland. Some foods do not taste as good as they used to. For example, tomato sauce is not one of my favorite things to eat. Pizza and pastas were some of my favorite foods before treatment, but now they are just bearable. Chinese food with bold flavors seem to be my favorite right now.
I am regaining sensation in my neck. For months, the tissue was numb, but now I am constantly reminded of my current condition due to the sharp pains I get whenever any amount of pressure is placed on any portion of my scar. The skin around my neck is starting to droop… leaving my skin to appear loose and flabby. Funny thing is… when you touch my neck, it feels more ridged than it appears.
The hair on the back of my head and face is starting to return. The hair on the rear of my neck is coming in slightly lighter and much finer than it used to be. It reminds me of the hairs on a baby’s head. My facial hair is coming back thicker, and much darker. I know… the whole hair thing is weird. I was so happy not having to shave, but now I’m back to a daily routine of chopping off the whiskers.
The appointments with my ENT doctor and medical oncologist went well. My ENT doctor was concerned with the windpipe constriction, and decided to look inside using the scope. She informed me that everything looked fine inside and asked that I keep her informed if the condition worsens. The ENT doc was extremely pleased with my tongue. She felt the result couldn’t have been any better. There is a lot of scarring on the underside of my tongue, but that should continue to loosen up over time. My neck incision also has a lot of scar tissue, but that was expected, especially since they removed so many lymph nodes. The doc wants to see me every six weeks as part of my on-going recovery plan.
My appointment with the medical oncologist also went well. The appointment was a few days following my ENT appointment. Like my ENT doctor, she too was impressed with how quickly I healed, especially after radiation. Her largest concern was getting me scheduled with a physical therapist who could lessen the tension on my neck muscles, as well as, provide the lymphatic message I need to lessen the current build-up.
The oncologist also explained my future as it pertains to completing the remaining clinical trial, chemo sessions and oral medications. I will receive a single dose of chemo and ten days’ worth of oral medications every three months for the next year. After that, I will continue to see her every six weeks until a full two years has lapsed. Now you can see why I am not so confident the Air Force will return me to full duty status. By the time all this is done, I will be months away from retiring.
The medical oncologist also scheduled me for my first PET scan. I go in next Monday (September 11th) for my baseline scan. I will then see the oncologist a week later, hopefully to get the results of the scan. With some luck, I will be told I am in the clear. If they find something… I … I don’t know what. It will be extremely difficult to accept having to go through chemo and radiation again. Let’s remain optimistic.
On a more positive note… I have returned to school. If you didn’t already know… I was attending online classes through the University of Arizona, aiming for a Master’s in Business Administration. When I was diagnosed, I withdrew from the program temporarily, not knowing if I would be able to juggle course work while getting cancer treatments. Well, the online courses were okay, but what I really wanted was to experience college in a college setting. My first two degree where both completed 100% online, never having stepped in a classroom. Since I am locked into this medical treatment plan for two years, I figured this would be the perfect opportunity to take classes in residence. So, I inquired about a program change, and was accepted into the full-time, evening MBA program at the UofA. I am now going to classes every Tuesday night from 4 pm to 10 pm. Right now, I am three weeks into my first two courses and couldn’t be happier. We are highly encouraged to dress the role of business people, so once a week, I get to dress-up like a real business executive. The entire program has fed my desire to leave the military life for something in the corporate world.
Wow… this was longer than I had anticipated. So, I have multiple medical appointments coming up. I promise to do a better job keeping you all up-to-date on the latest and greatest. For now, I will continue to adapt to my new life style while looking for the small wins in life. I’m truly learning to appreciate needing to make lemonade when life hands me lemons. The best thing is… I can taste the sweet lemonade.
Before I leave, I would like to thank all of you who have aided me through this journey. Whether you sent words of praise and encouragement or simply liked a post I wrote… you were more than enough to get me through this horrific journey. For those of you that went above the call of duty... words alone cannot express the appreciation and love I have for you.
Lastly, a huge thank you to the Averys and Kjirsten Tokushima for making my trip back home amazing!
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