The Comeback Kid

Hello, it is wonderful having the opportunity to speak to each of you. I do apologize for the significant delay between posts, but please know my absence is in large part due to my being able to enjoy life to its fullest. The past month or so has been full of good news, new challenges, and adventure. 

Medically, I have rebound from my bout with cancer with flying colors. I am no longer taking any medications, most of my doctor visits are merely check-ups, and there are no lingering concerns we should worry about. I have had recent appointments with my medical oncologist and my otolaryngologist (ETN). Both are extremely impressed with my progress and any concerns they had in the past are now behind us. I was referred to a swallow study with speech pathology, but passed that test. I've also had my hearing checked and passed it with minimal changes to my baseline.

The only medical issues I am left with are problems I must learn to deal with for the rest of my life. The radiation did a number to my neck. The scar tissue and fibrosis are significant, but with physical therapy and lymphatic message twice a week, we are seeing signs of improvement. Dry mouth is an issue I've learned to work around. I am cautious of the things I eat, and I've adapted my daily rituals to include what measures must take place to ease the annoyance.

With all things considered, I feel great. In fact, I continue to test my limits by accepting new challenges. I’m halfway through the fall semester at the University of Arizona. In August, I re-enrolled into the Eller College of Management MBA program, which I had previously withdrew from upon learning of my cancer diagnosis. Instead of doing the online program (like I had done before) I am now a member of the evening cohort, scheduled to graduating in 2019. The program requires me to attend classes every Tuesday from 4pm to 10pm. With work, the evening school schedule makes for some very long days. It is a bit of a sacrifice now, but this degree will surely boost my marketability upon exiting the US Air Force.

If you are not following me on Facebook or Instagram, you might be surprised to learn I recently hiked the Grand Canyon. After spending five days camping the Grand Canyon in our new pop-up camper with Jess and the kids, I decided I wanted to put my new backpacking gear to the test. So, the week following our camping trip, I returned to the canyon (by myself) and hiked town to the Colorado river and back up. I spend a total of two nights in the canyon, one at the bottom (next to the river), and the other half way up during my accent to the top. The hike was much more difficult than I anticipated, but in the end, the sense of accomplishment made the entire journey well worth the pain.

I must take a minute to thank all of you who supported my Go Fund Me fundraiser. Whether you donated, or shared the message with others, my hike would not have been feasible without your support. I have a planned hike in Zion this coming Spring and hopefully a few others before living out one of my dreams on the PCT. Thank you!

Many of you might be wondering about the status of my military career. As of now, we are still waiting on my medical physician to submit my Medical Evaluation Board (MEB) package. This package with explain, in detail, my past and current medical status – to include a description of all the interventions and results culminating from my bout with cancer. The package will be evaluated by a group of doctors who will then decide my fate in the military. Since I have rebounded as well as I have, things are looking much better than they did in the past. But, just in case things do get hairy, I have a team of Air Force leaders ready to swoop in to assist. My goal is to reach my twenty-year mark.

So, now that I’ve brought you back up to speed, please indulge me as I share with you some thoughts I’ve been having regarding cancer. When I began this journey, I sought out information online from the Cancer Survivor Network. This is a forum where people like myself can go to ask other cancer fighters questions regarding their disease. I found this forum extremely helpful. It prepared me for the worst, whether it was knowing what my future had in-store or simply providing me tips on what items I might need to help ease the suffering of chemo and radiation. Anyways, I was always amazed at the number of people who responded to the cries for help. For every new post published, there would be anywhere from ten to twenty replied within 24 hours. There truly is a committed community of supporters who dedicate personal time (everyday) to help others who are scared. Well, now that I’m one of the lucky that beat this bastard disease, it is my turn to be a source of compassion and understand for others.

In my opinion, winning a bout with cancer comes with a new role and set of responsibilities. You might say, those who have won the fight are awarded an ambassadorship of sorts. Since crawling my way out of hell, I have been approached by numerous people ether fighting cancer, who have fought cancer in the past, or know someone close who is fighting cancer. People require a support network to help secure their mental and physical wellness... this is a core concept of resiliency. Cancer fighters are experts, if you will, in living with cancer. The treatments might differ, but the phycological effect cancer has on people is comparable. A doctor can tell you what cancer is, how it effects the body, and what treatments will be most effective is dealing with the disease, but unless they have had cancer, they can describe the struggle between denial, confusion, anger, or acceptance. This is where other cancer fighters must step in. We have a perspective no one else can comprehend. We all deal with cancer slightly different, but much of that depends on how resilient the individual is. Resiliency is a learned skill, which is where I feel I have much to offer.

I’ve decided I will ALWAYS make time for someone dealing with cancer, patient or loved one. I accept my role as ambassador. Please forgive me if I come across as someone tooting my own horn, but I feel I dealt with cancer quit well. I had my moments of weakness, but all-in-all, I think I navigated through this journey quit well. In fact, I honestly believe the resiliency skills I used helped me through this, which in turn aided in my healing. This blog is an excellent example. It (the blog) served two purposed. First, I could keep all my family and friends informed of my condition throughout the journey. Secondly, and most importantly, I could face myself daily. By confronting my fears while blogging, I could confront and put to rest my emotions instead of bottling them up. In doing this, I could get past the frustrations so could focus more on the small victories. As I said before, small wins matter. So, if anyone needs to talk, just let me know!

Well, I think that is all I have for now. I appreciate your concerns and interest in my journey and wellbeing. I hope you all are doing well!

Until next time…

Chris

A pain in the neck...

Well, hello! I bet you didn’t expect to hear back from me so soon! I am back to share some breaking news with all of you…

You might remember me mentioning in my last post that my first PET scan was scheduled for today. A PET scan (positron emission tomography scan) is an image test used by doctors to determine disease within a patient’s body. For cancer patients, the PET scan is the tool used by doctors to determine if any cancer clusters exist in the body… or at least the section scanned.

Today, I was scanned twice. The first scan was from my neck to my waist, and the second was from my neck to the top of my head. As usual, the scan went quick. I was in and out of the imaging room in about fifteen minutes.

So… I wasn’t supposed to find out the results from today’s scan until next Monday, but an issue came up that required the doctors to review my PET scan immediately.

Over the past week or so, I’ve been experiencing an odd sensation. It started in the back of my neck and slowly progressed into both arms. The best way I can describe it is hypersensitivity of my skin. When I run my hand over my neck and arms, it feels like shards of ice moving across my skin. It doesn’t hurt, but it’s not the most pleasant of sensations. The tingling only happens when I rub the skin, and only lasts a couple seconds. If I continue to rub the same spot, the tingling seems to go away… as if the ice melted. A couple minutes later… I can rub the same spot and get the same results. Additionally, on occasion, my grip strength seems to suddenly weaken. It’s most noticeable when I go to grip something. It’s as if my strength has been ripped from my hand, and replaced with a numb feeling.

Anyways… I’ve been contemplating whether to call my doctor, or not. The radiology imaging place is one blocks away from my medical oncologist’s office, so I figured I’d give her a call. Then I called, I got the secretary, who was kind enough to take a message for me. I figured I’d give the doc an hour or so before I headed back to work, so instead of leaving immediately after my PET scan, I went to lunch.

I ate my lunch hoping my oncologist would call, but that didn’t happen. I was certain she was busy with other patients, so after lunch I headed back to work where I continued working through the afternoon.

I received a call just before 2 p.m. It was my doctor’s nurse assistant. She is one of the coolest people ever… very friendly and always full of good information and advice. She asked me a bunch of questions about my condition, but whatever it was… it had her stumped. The nurse told me she would talk to the doc and call me back before she left for the day. So, I went about my day. I figured it was no big deal. In fact, I felt kind of silly for having called her because I knew I had an appointment a week from today.

I headed home around 3:30. I had to stop by the dry cleaners, so my commute was a little longer than usual. I was almost home, when I received a phone call from the nurse. She informed me that she had mentioned my condition to my oncologist and was pleased to report the doctor knew exactly what I had. In fact, the doctor was so intrigued by the condition that she called the radiology lab to get my PET scan results immediately. From looking at my scan, she could confirm the diagnosis of my new condition. The nurse told me I had a very rare condition known as Lhermitte’s Syndrome or Lhermitte’s Sign. Basically… the fibrosis in my neck muscles (caused by the radiation) has caused my neck to become slightly compressed… putting pressure on my cervical spine, thus causing my nerve endings to become hyper sensitive. This syndrome occurs in less than 5% of patients who have undergone the same treatments as me. The doctor was able to confirm the diagnosis via the small amount of fluid built-up in my neck that surrounds my spinal cord. The fluid presses against the cord whenever I look down. The good news is… it goes away in most cases. It has been known to last anywhere from a couple months, to a couple years. But, it is not life threatening.

So… my PET scan proved useful almost immediately. Oh yeah, the nurse was also pleased to report there are no signs of cancer in my body.  

😊

A Much Needed Update

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 11^th) 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!

Go ahead and count them...

Hello world! I've missed you all dearly. Settling back into a semi normal routine has been a good distraction from this whole cancer mess, but it has also distracted me from keeping you all up-to-date on my progress.

Change occurs on a daily basis. The changes are small, but they add up quickly. The most recent development is the return of my taste buds. That's right! My taste is returning. It isn't what I would consider "normal" by any stretch, but I am getting enough taste sensation that food is no longer unbearably. In fact, I spend much of my day looking for new foods to try. It's like a game of Russian Roulette - where food takes the place of bullets. Some foods taste good, where others... not so much. I've learned that my mouth is a lot like an infants again. There are some flavors that cause me pain and discomfort, like spicy and sour foods. Remember being a kid and thinking your parents toothpaste was spicy? Well, as adults, we've gotten use to those strong, minty flavors, but as children, then burn and cause irritation. That is what I am now dealing with. It is as if my mouth has never been exposed to spicy or sour foods. Even my toothpaste burns like no other.

If you look at your tongue in the mirror, you will see thousands of little taste buds covering your mouth. There are so many, there would be no way to count each and every one. In my mouth... I can "literally" count each and ever one. They are popping up one at a time, and not just in one area. They are spread out enough, and few enough that I can actually count how many taste buds I have. The good news is, the number of taste buds grow by the day.

It's funny... my radiation oncologist was right about how each taste sensation would return. The ones you desire least come first, and the ones you anxiously await are dead last. Sweet is the taste I desire most. Right now, I can taste a very faint hint of sweet. Bitter was first, which I was more than okay with since beer and coffee fall into that category. Savory seems to be making a huge comeback as well. I had a bag of Gardetto's today, which were AMAZING! The crunchy crackers were a little touch on my delicate mouth, but I didn't care. They tasted just as they should... just not as bold.

Speaking of my mouth. I had a dental appointment on Friday. It was my first dental exam since this whole debacle first started. My exam was at the same clinic that initiated the biopsy of my tongue tumor. When I got there, I was sad to hear that many of the dentists that helped me out when I was in pain had since left. This did not stop all the new dentists from wanting to check-out my new tongue. I gladly put myself on display for anyone wanting to be nosy.

I asked the dentist about the fluoride treatments I might need to prevent having brittle teeth. As if it were his idea, he immediately began lecturing me about the long-term effects radiation has on the mouth and how important it will be that I apply fluoride to my teeth daily. I just let him ramble on... nodding my head as if I had never heard any of this information before. I know I'm not a doctor... or in this case dentist, but I think there is some level of credit due for being a subject matter expert in a disease I happened to have had. 

Anyways... I now have cool new toothpaste I must use every night. The key to this stuff is that I cannot eat, drink, or rinse my mouth for at least 30 minutes. I just brush my teeth right before bed... that way I don't have to worry about it. I also like that this toothpaste isn't "spicy."

Oh... that reminds me of a funny story. I went to lunch with some co-workers. It was on Friday, a couple hours before my dental appointment. We went to Panda Express, which was cool with me because I got to taste everyones food... since most people ordered different things. They laughed at me, but I didn't care. So... I was telling them I needed to stop at a store to get a toothbrush and toothpaste because I wanted to brush-up before my dental appointment. For the sake of conversation, I also shared with them the "spicy" toothpaste issue. Well, when we stopped at the store, one of the guys insisted I buy the matching Spongebob toothbrush and paste. I now have non-spicy fruity bubblegum toothpaste. The world is good!

Well, I have two appointment coming up in the near future. I have an appointment with my primary care doctor on Friday and a follow-up appointment with my ENT doc next week. I'm hoping to learn more about the medical evaluation process the military will soon initiate on me. Other than that... I don't know what else to expect other than kudos on my healing. Regardless... I will provide you all with an update.

Before I leave.. I am happy to report that I will be teaching two resiliency classes on Friday. Teaching is something I love to do, and loosing the ability to do so was a huge fear of mine going into this cancer nonsense. One of the classes I am teaching is about how gratitude can help us become more resilient. I'm super excited to use my blogging experience as an example of how I was able to apply the lesson principles to my life. You might remember me pointing out that sometimes we need to focus on the small wins in order to get by each day. I'm super stoked!

Well... I hope you all had a wonderful Hump Day. Tomorrow is Thursday... so let's all hope for the best.

See you next time!