My name is Chris Salisbury

Recently, I wrote about a new lump on my jaw. After two doctors visits and a PET Scan, the doctors have come to the conclusion that what I have on my right jaw is edema. Edema is

An accumulation of an excessive amount of watery fluid in cells or intercellular tissues. - WedMD.com

The PET Scan still shows a small tumor in my neck that has very decreased activity. At this point we are at a wait-and-see phase. Options to remove it are limited. For now, I am not worried. I think I’ll be fine.

The title pretty much says it all. I noticed last night a significant lump on the right side of my jaw. It’s very noticeable when I look in the mirror. At this point I am not making any assumptions until I see my Doctor on August 4th.

I just need your prayers right now.

From the title it may sound like good news, however if you were my wife you would strongly disagree.

About two weeks ago, I had a follow-up PT Scan that was pretty much a full body scan. The results were given to me from my radiation doctor. His prognosis seemed optimistic to me. Apparently, I still have a cancerous tumor in the right side of my neck even after surgery, radiation, and chemotherapy. The tumor, however, has shrunk from what it was before radiation (3cm down to 1cm). Also the tumor’s activity level (called SUV) has dropped from 26 to 12. The idea from my radiation doctor is that we will get another scan in 3 months and by then, hopefully the tumor will be gone or extremely small and it’s activity level will be next to none.

Sounds good, right?

This past Tuesday, I saw the doctor who did my neck surgery before the radiation treatment. It was a simple routine follow-up and he was looking at the PT Scan results (he didn’t have the actual scan to review, just a report of the results). To him, it seemed that the results were actually negative. The fact that the activity level is 12 is potentially dangerous in his opinion. He said there is the possibility that this could come back based on the fact that even after all the treatments, it is still there and active. Apparently, a 12 is kinda high for this. He also stated that radiation would no longer be an option since I have already had it, and the human body can only take so much radiation before it starts to affect it negatively. Chemo would pretty much do nothing at this point. Surgery is kinda an option, but even that is not guaranteed because the tumor is so small at this point and my muscle tissue is so tight and stiff from the radiation that it would make it very hard to find and extract what is left. At this point, it is a wait and see situation. If things get worse, there is pretty much no chance for me to be cured.

So there we have it. Two different prognoses from two different doctors. Neither have affected me. I just laid this information in the Hands of Jesus and given it to Him to deal with. All I know is there is the possibility that I won’t be here in a few years. I have my life to live and I can’t be burdened with stupid stuff like this. If I survive, Praise God, He gets the glory. If I don’t survive, Praise God, my eternal future is secure. If my time is short, I need to make the most of it. But these are mere “ifs”. Only God knows the future. I will live my life.

Someone asked me this question recently (not really, nobody asked me…I just figured for narrative sake it sounded nice. I am a total liar) and it got me thinking about what it was like to eat food a mere six months ago. Things are definitely different now.

Imagine having to consider when trying to decide what you want for lunch things like food moisture, level of spiciness, sweetness, sourness, portion size. Yeah, these seem almost like normal things to consider when you type them out. Even I am asking myself, so…what’s the big deal?

OK let’s start with moisture, or rather dryness. Since the radiation, my mouth has pretty much dried up. I don’t produce normal levels of saliva, which we all know is the beginning stages of digestion. Cakes and cookies are pretty much off limits. I crave hamburgers, hot dogs, and other foods wrapped in bread. So if I decide to have one, I also have to have a HUGE drink with me so I can keep my mouth just wet enough to assist my teeth in breaking the food up so I can swallow.

Also, a handy little treat I was given from the radiation is a VERY sensitive mouth to spice, sweet, sour, and carbonation. Even the slightest hint of heat in a taco will cause my entire mouth to freak out as if someone poured habanero sauce all over it. I can only snack on my deserts because my mouth gets a sweet overload on just a few bites. Carbonated drinks have to be fizzed out before I can consider drinking them. Toothpaste burns my mouth every time I brush.

Then there’s the salivary gland damage that was done during my January surgery which causes a severe pain throughout the right side of my face when I eat. Above all else I listed here, I have to consider whether or not this meal/drink will cause my salivary gland to flare up and send me wincing in pain. I have discovered it’s not everything I eat, but most things do. Typically, the wetter something is with as little flavor as possible does not cause any pain. So, water would be ideal, LOL

Portion size is not a major issue, but it is still something I have to look at. My stomach has “shrunk” as a result of only taking in liquids for so many months. I can’t eat huge meals like I used to. I try, LOL. I look at it this way, if I order spaghetti and can only eat about 1/3 of it, I have two more meals for the price of this one. It’s a money saver and I don’t over eat like I used to. Example: yesterday Crystal bought me some Chinese noodles for lunch. I had it for lunch, dinner, and a late night snack while at work.

Oh I forgot about the texture of the food. I can’t eat candy right now because the texture of the candy irritates my tongue. As well as chicken nuggets, fries, tater tots, and most other sources of deliciousness.

I am told my eating ability could change again, either to something more like what it used to be or something slightly worse than what I deal with now. Either way, I just hope my mouth’s sensitivity will go away. That is my major obstacle from REALLY being able enjoy some of my favorite foods such as Indian, Thai, Spanish, and other fine cuisines from around the globe. Until then, I fill most of my meals with mild pasta dishes and bite sized chicken.

- Chris

I just wanted to make a quick entry to say “Thank you” to all who have put in endless prayers and nice emails and phone calls with encouraging words. Especially through the last 4 months, which has been the hardest time of my life. There was a time during my radiation treatments where it was so bad that I told myself I need to quit because I felt that to die would have been better than going through this. I was vomiting everything I “ate” through my feeding tube, I was rapidly loosing weight, I was physically weak, I could not stand for short periods (as short as 5 minutes), etc. Basically, things were bad and I wanted to stop everything.

Your prayers and words of encouragement along with God’s strength pulled me through. You got me through the hardest part of my life. Even if I don’t know you and you randomly stumbled on this site and prayed for me, you did it too. Thank you so much.

There is another small group of you who helped financially. Not a whole lot came in, but during this time, I took a LOT of time off work and had to live off of very little money. Just when I really needed money to pay a bill or something, God’s timing put it in your heart to give and that money came just in time. Thank you for listening to the Lord.

The need for financial support is growing at the moment. Although I am back at work, the medical bills are all catching up with me right now and I am not in a position to pay them. If you have it on your heart to pitch in and want to, thank you. Click on the donate link on this site to help out.

Prayers, encouragement, and money are all still very much needed as we pull into the final stretch of this current phase. Thank you.
- Chris

So yeah, this past Monday, I was finally relieved from my awkward feeding tube I have had since February or March (I honestly don’t remember when I got it). I say awkward because no matter what I wore, I could not hide the fact that something was protruding from under my shirt. Then as a special treat, ever so often, the cap on the tube would pop open causing the contents of the tube and my stomach to spill out onto the inside of my clothes. I have a few shirts and jeans that are forever marked (and ruined) as a result of this fantastic enigma. Oh and the occasional pain of the ooze (from the area around the tube from the hole in my stomach) that would dry and stick to my stomach hair which would inevitably get pulled on from the tube itself was another reason for me to despise the tube.

Ultimately, having the tube removed means that I am finally back to eating “real” food! I am one more step to being back to normal.

So, here’s the story of the tube being removed. I show up at the clinic and register. I get taken in this area with beds and curtains dividing the patients. The nurse takes my temp and vitals and gives me an IV. A few minutes later, I am wheeled into the room where the deed will be done. The doctor comes in and tells me “You may wanna take a deep breath and brace yourself. You will feel a short bit of discomfort, followed by a sharp pain.” Wait….WHAT? I immediately panicked and asked, “You aren’t gonna knock me out or anything?” He says “No it’s a very short procedure, it literally goes in less than 10 seconds”. I’m like…”WHAT? You don’t even give any kind of anesthesia for this? How BRUTAL! What was the purpose of the nurse giving me an IV out there?” He asks me, “Who gave you an IV?” I said “Your nurse, just 10 minutes ago”. He finally says, “Well, I suppose if you insist I can give you something that will take the edge off to relax you for this. You’ll still be awake, but you won’t be scared and probably won’t feel it as bad.” “I INSIST I INSIST!” (DUH!). So the nurse grabs a tube of something and pushes it into the IV. It burns at first, then I feel my body kinda go numb, then I don’t remember a thing. The next thing I remember, I was back out in the main area behind a curtain with a bandage over the hole in my stomach. I took a peek at it and saw how gross it was, but was so happy to have the tube gone.

Five days later the hole has healed quite nicely. Now it just looks like a smaller belly button. I am told eventually, it will look like a small dot size scar.

So yeah…

In keeping with my March 10 entry, I am sorry to those who do check this blog regularly. I have been very busy with life and I keep forgetting to come back and update.

OK so since March, a LOT of great things have happened. I finished my chemo and radiation in early April. A few weeks later, I noticed my taste buds started to come back! Determined to get back to normal as soon as possible, I started having soft foods such as pudding, warm cereals, soups (mostly cream and broth based with no big chunks), and drinking juices and tea.

It was very hard at first because I still had some sensitivity on the top of my tongue and in my throat. Also on the side of my tongue I had developed a sore that had me worried. It felt very similar to the cancer spot on my tongue from 2007. I went to see my doctor in Kansas City and he assured me the new sore spot was not cancer. He gave me some antibiotics and, sure thing, it cleared right up!

Now I am eating more solid foods in small bites. Things like pasta, chicken, hot dogs, chunkier soups…you know, more normal foods. I am still not 100% back to normal, but I am about 90% better than when I started.

The only big issue I am facing when I eat is something that is a result from my cancer surgery back in January. My right side salivary gland gives me enormous, intense pain when I do eat. The pain is so bad at times that I literally cringe and buckle over in agony. I don’t know what to do about it. My doctor said there is really nothing I can do but suck on sour candy and massage the area. Massaging does nothing and sour candy just destroys me. I am basically learning to deal with it and try to control the pain with “mind over matter”, even though I don’t really believe in that silly stuff.

The last follow-up visit I had with my radiation doctor went very well. He is very optimistic about the results from the treatments and is pretty convinced that the cancer is gone. We won’t know for sure until we do the PT Scan at the end of June.

The first week of June, I will be having my feeding tube removed! I am very excited about that because it is irritating from time to time and sometimes it just gets in the way of everyday things.

As far as my overall state, I am very happy. I don’t know if I will have to deal with this again, but I know I have very good chances of a full recovery. I feel my strength returning everyday. I plan to go back to the gym very soon. I hope that by the time I do my PT Scan, I will be completely back to normal and eating foods that I love and miss…pizza, Thai, Indian, etc.

If you are wondering about whether or not I still need donations, the answer is yes. While my health is improving, the medical bills are piling up. I simply don’t make enough money from work to pay my regular bills and keep up with the medical bills. Some from the last cancer battle have gone to collections and have offered me a settlement payment, but I can’t even afford the settlement. I have been told by many people to not worry about the medical bills, but that’s not me. I have damaged my credit enough back when I was younger. I am a lot wiser now and I pay my bills as best as I can afford. Like I said, I am keeping up with my regular bills. The medical bills are another story. So anyway, If you can donate, that would be very welcomed and appreciative.

Thank you all so much for your thoughts and prayers. They have been very inspiring and helpful.
- Chris

I am noticing a lot of changes in my head due to the treatments, mainly my mouth. It is very sore to eat or drink anything and when I do try, nothing tastes good anyway. I am using the feeding tube for all my nutrition. I am also noticing very strong constipation as a result of so many medications I am taking combined with not drinking anything. I am increasing my liquid intake via my feeding tube as well as adding softeners to my diet to help with the constipation. Four more weeks to go of this. Also, I have taken two weeks off work to cope with some dizziness, fatigue, and vomiting I suddenly found myself in. Finally, I had an Instaport installed on my left jugular. This was to help with the chemotherapy and make it go smoother without having to hook up an IV needle every week. It is amazing.

I am sorry for not keeping up with this blog. I am finding it hard to remember to come and update this.

OK so when I left off I was going to the hospital for surgery. I had the mass removed from my neck, but that didn’t fix everything. Actually, it opened a bunch of other problems. My neck is now missing a bunch of muscle from my neck. The mass was surrounding most of that area. Since the surgery I am going through physical therapy, doing arm stretches and such, in hopes to gain full movement of the arm and shoulder area. For the most part, I can do everything I used to do with some slight limitation.

A few weeks after the surgery, Feb 18 to be exact, I started chemotherapy and radiation. The chemo is a weekly does that is just small enough to help the radiation do it’s job. Chances are good that I won’t be losing any hair. The radiation is every weekday and, while it is a smaller time in the hospital, it is the most aggressive treatment. They are treating my neck, tongue (since that was the original tumor), and various parts of my head just to make sure they get as much area covered as possible. They are treating this as “cancer in the neck with unknown primary”.

Since starting treatments, I have had a feeding tube installed which is good because I can no longer eat or taste food. My nutrition source are cans of Boost or Ensure. It’s not the most fun way to “eat” and it’s extremely bizarre to experience.

I am also dealing with an assortment of side effects ranging from hiccups, nausea, and fatigue. This has recently caused me to take time off work. Initially I am doing two weeks off for short term disability, however I will be taking more if needed. The major issue with that is the fact that my work’s insurance has to approve the disability before they can pay, and that is only 60% of my weekly pay. I have no more PTO I can take and even owe my work for some advanced PTO I took to go out of town for my grandma’s funeral recently.

Basically, I am in need of financial help. I hate to sound like I am begging, however I know that some people want to help but are afraid to help just in case the person they are helping would be offended or reject the help. I am in no place to do that and I know that God will bless you for helping those in need. If you can, this would be the time to do so. The info about helping is in the site’s navigation under “donations”.

That’s all I have to update you with for now. Till next time, Shine on.

Crystal took these pics of me the other day and I was just too lazy to get these online until right now. The purpose is to show how much the mass has grown since the last pics I took of myself on December 19.

mass1mass2mass3

so there ya go. by this time tomorrow, that will be gone from my neck. Surgery is 10 hours away.