Friday, June 2, 2017
3 Month Follow-up - ENT
When I had my appointment with my ENT back in March he gave me an order for a CT scan with and without contrast. Well last month I called to schedule the appointment and the imaging department ran it by insurance. Insurance denied it because it was with and without contrast and they would only approve one. So the radiation department called me and told me it was denied and to speak with my oncologist to see if he could get it approved.
So I did just that. However my oncologist called me back and gave me some news that really surprised me. He told me that he doesn't recommend follow-up scans for me. He told me that they can generate false positives which cause unnecessary biopsies and surgeries pursuing something that's not there and can actually do more harm than good. He said he basically relies on physical exams to check on recurrence. All this time I was under the impression that periodic scans were the norm.
I passed this information onto the radiology department and, long story short, my radiation oncologist submitted the order just with contrast and got it approved. So this last Tuesday I went in and had my CT scan done.
Today I was eager to discuss this scan/no scan business with my ENT as well as my general progress. I got there and he immediately scoped my mouth and throat. He mentioned he could still see some sores on the right side of my mouth that haven't healed yet. Down in my throat he saw what looked like a fungal infection going on.
After scoping me he gave me the news that the radiologist found a 17 mm mass in the images. My ENT said he doesn't think it's anything to worry about. The radiologist only looks at the images and doesn't see the patient. He said it's probably either the fungal infection or scarring.
I told him about what my oncologist said about not doing scans. My ENT thought that was strange and said that it's usually the oncologists that are ordering scans and the ENTs that are relying on physical exams because they have the tools to look inside the mouth, nose and throat and oncologists don't. He posed the question, "Then how are they supposed to know if a cancer returns or spreads?" I said that was a good question.
After a moments though he said that maybe because my cancer was caught at such an early stage, T1N1, that maybe my oncologist thought that I wasn't a high risk for recurrence. Could be. That's a question I'll have to ask when I see him next week.
My ENT said that now that we have this CT scan as a baseline he'll do another physical exam in a couple months and then decide if we need to do another CT or other modality scan a month after that. Then we'll be able to compare what they saw in this scan to see if that mass has grown or stayed the same and that will tell us if it's something to be concerned about.
He prescribed lozenges for the fungal infection and I scheduled my appointment for two months out.
Discussing this with my wife while leaving the office she reminded me that this may be exactly why my oncologist recommended against doing any scans; false positives. Makes sense. I sure feel like I'm putting a whole lot of trust in my doctors and for a person with trust issues, that's saying a lot.
I'm not too worried about this right now. Another thing to consider is that I had my other tumors for more than 5 months and they were less than a centimeter. Now, I just went through all this radiation and chemo and 3 months later something that wasn't there is now showing as 1.7 centimeters big. Pretty unlikely that a cancerous tumor just showed up out of nowhere after radiation and is that big. Make more sense that it's a fungal infection or scar tissue.
I have appointments with two of my other doctors next week so I'll see what they have to say. Just trying to stay positive and focus on being healthy.
Saturday, March 18, 2017
Taste Coming Back
I've also been concerned about my teeth not having really used them in almost two months. I figured if I could find some not so spicy gum to chew that would keep them as well as my chewing function in good working order. So last night after work I went to the store and picked up some fruity gum with Xylitol as a sweetener. I read that gum with Xylitol is good for people with dry mouth because they're more susceptible to tooth decay and well, gum with sugar promotes tooth decay.
So I got this gum and really didn't expect much as far as flavor but was willing to sacrifice that for the previously mentioned reasons. To my surprise I could taste what seemed like the full, sweet flavor. It was painful at first as the full flavor of the gum came in contact with the inside of my raw mouth but after a few minutes that wore off and I could enjoy chewing. This gave me hope that my taste buds were returning sooner that expected. Was I excited.
The next day I tried another piece and I had been thinking about how I could temper the initial painfulness of a fresh stick of gum. I thought maybe I could soak it in water or even have my wife chew it for me to wear out some of the flavor. No, that's too disgusting even for someone an pragmatic as me. Then I wondered if I sipped ice cold water during the first few minutes if that would help. So I tried it and sure enough it did. I know it's small but being able to chew gum make me feel like I'm a little closer to normalcy.
In the afternoon my younger son made himself some frozen taquitos for lunch. Now, I've been smelling savory, cooked food and have wanted to try some for weeks now, but the rough texture that that kind of food typically has has been keeping me at bay. However, the flavor of the gum and the prospect of being able to taste savory food again gave me the courage to have a little taste. I didn't dare sample the crunchy tortilla, but a little bit of the meat might be OK. So I got a little pinch of the meat filling and cautiously placed it in my mouth. Wow! It was amazing! It tasted better than I remember it. Savory deliciousness with a little bit of spice. Of course it burned like hell, not from the heat but because of the condition of my mouth. Oh! But it was soooo worth it and to taste real food again was wonderful!!!
I am so excited to have my taste return to me this soon. I was worried that it would take months, now I am filled with a renewed vigor and joy with the idea that I may soon be able to not only eat again but enjoy food again. This right before my upcoming birthday. I could ask for a better birthday present. As a matter of fact, that's all I wanted for my birthday this year was to be able to taste food again.
Now all I have to do is heal my mouth and get past this pain, then I can start eating all the wonderful things I've been missing and work on getting back all the weight I lost. Speaking of healing, I've been examining the inside of my mouth this week fairly often and I've seen the sores, especially the one on the right side of my tongue, getting noticeably smaller. So there IS progress. I feel like I'm almost there. If I could get there by next weekend, my birthday weekend, that would be the best gift ever.
Friday, March 17, 2017
One Month After Radiation
My saliva stopped overproducing and being ropy around March 1st, about 2 weeks after my last treatment. It's been fairly normal except for some dry spots in my mouth. So I've been using mouth moistening products to try to prevent this dryness. It's weird since when I experience this "dryness" it feels like I have saliva in my mouth, I just feel these "dry" spots like I drank a really dry glass of wine. So my mouth is dry but not dry. Maybe it's a Tao thing.
The sores in my mouth have been slow going. I still have blisters on my gums though they have diminished. I took some pictures of the inside of my mouth this week so I can document the progress of it's healing. I didn't take any earlier pictures because I couldn't open my mouth enough to get a good shot of the back of my mouth. Anyway, I noticed it kind of looks like the surface of Jupiter.
So, I imagine it pretty obvious, but I still have pain in my mouth. It comes and goes depending on how much I talk and stress it. I was off Hydrocodone for a while but that was when I wasn't talking. After starting work again, on March 6th, I started taking it again. As a result I had to start taking it again all day until I realized my pain level is tied to how much I talk so I've been trying to talk less and as a result I have to take less pain medicine. Usually only in the evening after a long day of speaking on the phone providing I.T. support. It is what it is.
It's good to be back to work though. My energy level is about 90% but I just need to pace myself so that I don't slip backwards and slow my healing or get sick. My son has been sick all week but so far it looks like I dodged that bullet. With work, commuting, healing, bills and all the other worries I have on my plate I'm really surprised I didn't catch is fever too. Very thankful for that.
I've pretty much gotten used to my g-tube and it hasn't given my any problems for a while now. I was hoping I'd be off it by now, but whatever. I'm drinking water and aloe water throughout the day orally. It hurts like a level 7-8 every third sip but I'm trying to keep my mouth moist and keep hydrated. I tried eating cucumbers last night only after 1 or 2 it burned the inside of my mouth and it felt like a small chunk got stuck in a pocket between my cheek and gums. It's difficult to move my tongue around with the pain and all so eating, aside from the pain, is awkward as well. This is really disappointing because my birthday is coming up this week and I was really hoping to feast on it. Doesn't look like that's going to happen, but I remain hopeful.
It's been a month so I imagine my mouth should start healing faster. I have a follow-up appointment with my Radiation Oncologist on Monday so maybe I'll have more information as to what I can expect as far as healing after that. I really want to be done with this, but I'll get there, it's just taking a little time.
Friday, February 24, 2017
Day 8 After Radiation
Wednesday night my saliva seemed to return to normal. I seemed to be producing normal amounts and it wasn't as ropy. I was pretty excited. However, the following day, Thursday, my glands returned to overproducing the ropy, slimy substance although the volume did seem less. The green phlegm I was producing stopped in the afternoon, but I did have coughing fits from an irritation in the back of my throat. It would happen only every few hours and it goes away after about a half hour. I also did feel various "dry spots" in my mouth even though there was plenty of saliva throughout. I don't know if they're actually dry spots or just a dry sensation.
However I was plagued with night sweats again on Wednesday night. I had to change my t-shirt four times from having been soaked through. Trying to track down the cause of this it looks like it may be caused by the Fentanyl pain patches I've been using. The listed side effects I've experienced with these are sweating and uncontrolled muscle twitching. I initially thought the muscle twitching was me just dozing off, but as I paid more attention to them I noticed they were happening even when I wasn't sleepy. So yesterday I stopped using the pain patches and went back to Hydrocodone. The only side effects I experience from Hydrocodone is happiness, positivity and a sense of well being. Side effects I could live with long term.
Last night my saliva again returned to an almost normal state and I only had one, minor instance of night sweats. Much better nights sleep. I think I only woke up once to change my shirt and slept pretty heavy the rest of the time.
Today my saliva, although still somewhat ropy, is a lot more normal. I haven't experienced any dry spots really and haven't had to carry around a cup to spit out excess saliva in. I think some of the overproduction of saliva may also be caused by all the dairy I'm consuming. My formula is dairy based so six cans of that a day is a lot more than I'm used to.
I called the supplier this morning to see if they can switch me to a non-dairy formula. Apparently they have to contact my nutritionist, she has to discuss my symptoms with me, then she has to contact my primary care doctor who has to write a prescription, then my insurance has to approve it, then and only then can they switch my formula. Which all sounds really ridiculous since I have to pay for it out-of-pocket anyway.
So I had my wife pick up some non-dairy protein powder and some almond milk from the store. I'm going to supplement some of my formula with that to at least decrease the amount of dairy I'm consuming to see if that helps until I can get my non-dairy formula.
The pain in my mouth seems better today too. I ended taking a dose of Hydrocodone around 4:15 PM today after a coughing fit from an irritation in the back of my throat. Not sure if the Hydrocodone with help with that but I thought I'd give it a try.
Since the pain has decreased in my mouth I'm also trying to drink more orally. It doesn't hurt too bad it just doesn't taste very good.
It seems like my sense of smell has increased. I can really smell the clorine in tap water and when I went on a walk to day, the first in a while, the air smelt nasty. I don't know if it was from the hot asphalt or from automobile exhaust.
I'm also starting to talk again. I've only been talking for the last few weeks when I absolutely had to. Most of the time I would communicate with my family members through charades due to the pain. It's been kind of fun but also frustrating when I couldn't get my point across.
I've been also putting green juice, Emergen-C, and pomegranate juice down my tube. They had me stop taking anti-oxidants because they didn't want them interfering with the chemo, but now that I'm done with that I can start taking them again to rebuild my body.
Anyway, today was a pretty good day. I really feel like today I'm moving forward toward feeling good again. I just need to get my pain level to a point where I can eat again. Once I can eat again I can get the g-tube removed. Once that's removed I can start putting some weight back on.
Saturday, February 18, 2017
February 12th - 18th Summary
So I finished up my radiation treatments last week on Thursday. I'm telling you the last few days were sheer hell. I've already written about the pain. The final week was by far the worst. Add to that the thick, ropy saliva that I could either try to swallow (pain) or spit out (pain). The least painful way to eliminate it is to just hold my mouth over a sink or cup and let it fall out because any strain of the muscles in my mouth would cause, you guessed it, pain. When the saliva got too think feeling like it was gumming up the inside of my mouth I would take some warm water and swish it around and then just let it fall out into the sink.
In addition to the saliva the mask the put me in for treatment seemed tighter and more constrictive making breathing and swallowing more difficult. So I would rinse out my mouth as mentioned above just before going into treatment this would help for a few minutes but the last few minutes I pretty much felt like I was drowning in my own saliva. It got so bad that the last day I was about ready to tap out, but I pulled it together and made it through. If I never see that mask again it will be too soon. If I had anymore treatments scheduled I probably wouldn't have gone.
I was also supposed to finish up my last chemo sessions on Thu. and Fri. but they delayed them a week because my white blood cell count was low. So they scheduled me for Leukine shots over the next five days to stimulate my bone marrow to produce more white blood cells. I'm kind of glad the chemo did get delayed because I was not in the state-of-mind to have to deal with that too.
My oncologist's nurse did get me a prescription for Fentanyl a pain relief patch that lasts 72 hours. That saves me the hassle of having to dole out Hydrocodone every six hours. It does a pretty good job of relieving general pain. If the pain ever does increase I can always take Hydrocodone to supplement because they're different types of pain killer.
My oncologist also gave me a prescription for an antibiotic since I was having a low grade fever. The fever has subsided now, so that's good. I'm not sure whether that was coming from an infection from my g-tube or my throat. Both have seemed suspect lately. I've been having occasional green mucus coming from my mouth which is especially hard to expel. It's taken me some practice to expel it with the least about of pain but I'm finally getting the hang of it.
I've also gone back to gravity bags for feedings because they allow the formula to enter the stomach at it's own pace instead of forcing it in with a syringe. Since I'm on medical leave and not doing much but sitting on my ass all day it's not that much of an issue. It's just a bit tedious.
My reasoning in going back to gravity bags is I have concerns about my g-tube again. There's some hardness under the skin, and a little redness and some slight discharge. I don't know if the discharge is puss or formula. There's also a slight crampy feeling the left side of my abdomen. I described and showed my oncologist today and he said it looked fine. If there is an infection going on there hopefully the antibiotic he prescribed me will take care of it.
So now I start my recovery from radiation, thank God!!! I can't wait for my mouth to start feeling better and begin eating normal again so I can get this cursed g-tube taken out.
Sunday, February 12, 2017
Final Stretch
The ringing in my ear from the Cisplatin seemed to be almost gone when I woke up his morning. Since then it's returned but it seems quieter. I shook some keys yesterday and they seemed to make a flat noise, different from how they usually sound. I'm not sure if that's from the Cisplatin or if they've always sounded like that. I which I would have gotten my ears checked before beginning treatment so I could establish a baseline for hearing loss.
My g-tube has been fine. I picked up the lotion my dermatologist prescribed for the rash and I've been applying it a couple times a day. It's helped with the itching and my skin has cleared up around it. My weight had dropped to 146 pounds but I'm back up to 150 now. I also ordered some dumbbells online to that I can start lifting some weights and get some muscle tone back. I'm excited to start lifting again.
So, I just need to keep my pain under control, make it through this week of treatments then start focusing on healing. Really excited about being done.
Thursday, January 12, 2017
Day 10, 8/35 days of Radiation
Speaking of medication, I happen to read the script info on the Ativan that I was prescribed yesterday for nausea and the first line reads, "Taking [Ativan] with opioid medications such as codine or hydrocodone (which I also have) may increase your risk of very serious side effects, including death." Wow! Glad I read that! That's one of the reasons I don't like taking prescription medications; the side effects are often more profound than the benefits especially when used with other medications. Lesson learned to read the prescription info on everything. So, I'll probably be staying away from that, especially when things get worse and I need to be on the pain meds.
My weight stayed the same over the last couple days. I'm now 149.2. Hopefully with the Cisplatin leaving my system and my nausea diminishing I'll be able to eat a lot more. I'm going to use the next couple weeks before my next chemo treatment to eat as much as possible to fortify myself for the next round. Problem is that food tastes very different now. Very bland for the most part, if they're not making me sick. The only thing still enjoyable is fruit. My wife bought some Kiwi's that are just saving me right now. They're so perfectly ripe and tasty. Strawberries are also incredibly good. I feel like I'm learning what foods I like and dislike all over again.
The dryness in my mouth hasn't really changed much. If anything it might have even gotten a little better. However the tightness around my scar seems more prominent. I think the metallic taste in my mouth is more pronounced as well.
My energy level today is feeling more back to normal. I feel more like my old self again. A lot more active and engaging. So it seems like there's a cycle where I'll feel like shit for the five days following chemo and on the sixth start feeling better. I'm glad I'm not going to feel like that the whole duration of treatment. At least I'm hopeful I won't.
The ringing in my ears seemed less bothersome today. I don't know if I just didn't notice it or if it actually decreased. Right now it seems rather loud, so I guess I'll wait and see what it's like tomorrow. I do want to mention that yesterday at work, when I was outside and cars would pass by I could hear their wheels make a noise I never really noticed before. Like I could hear the spokes cutting through the air. It was very odd, but that's the only thing I've noticed out of the ordinary with my hearing.
Last but definitely not least is sleep. I slept very well last night My god I needed that. It may be the reason today was so positive. So, without further ado, I'm off to bed looking forward to yet another good nights rest. Onward and upward!
Wednesday, January 11, 2017
Day 9 (Since Beginning Treatment), 7/35 days of Radiation
Today was pretty good. After all...it's hump-daaaaaay!
G-tube is getting less of an annoyance allowing me to sleep pretty good last night. I did try to put a protein drink down it last night before bed since I was pretty nauseous yesterday and didn't get the calories I should have. My mistake was that I let the weirdness mess with my head and I started to feel feint so I had to stop before finishing it. I think I'm going to wait until the nutritionist/nurse comes out and gives me a proper demonstration so I can put my concerns behind me.
I've also developed a rash around it. I'll save you the photos. Suffice it to say it's not normal. I do have certain skin allergies, mostly to adhesive bandages and certain tapes. I had a reaction to the tape they used to secure the gauze to the site after surgery but it wasn't touching the area that is now broken out. I showed one of my nurses Monday and again today who in turn had my radiation oncologist take a look at it. The nurse also called the GI department that did the surgery and they, like my doctor, just suggested I put some antibiotic ointment on it. My doctor said to try that for the next couple days and show him again on Friday.
I also stopped by my oncologist's office today and spoke with a nurse there about my nausea and the ringing in my ears. She spoke with my oncologist and they prescribed me another anti-nausea medication, so I'll try that. I've got to get on top of this to prevent further weight loss. I know I'm below 150 now. My nurse noticed my weight loss today too and said, "No more." I told her about the nausea but she said I just had to suck it down. Thing is I'm afraid if I do that I'll throw it up and if that happens it will be either incredibly painful because of the g-tube or it will dislodge the g-tube and I'll have to go back and get it reinserted, or both. So hopefully the new anti-nausea medicine will work and I can start eating normal, or at least somewhat normal.
Actually, speaking of nausea, today has been pretty good for that too. I woke up hungry so decided to have a bowel of cereal with strawberries. I was able to finish the berries but not the cereal. Then after radiation I was pretty nauseous. I asked my radiation oncologist and radiation tech about nausea after radiation and they said radiation shouldn't cause nausea. So afterwards, on the way to work, I ate a handful of saltine crackers and drank water and felt pretty good. For lunch I had some curry chicken and rice and a bunch of fruit (strawberries, kiwi, raspberries) I packed for lunch. All of which I had little to no problem eating. I did try to add some carrots to the mix for lunch, but that was too much so I had to stop.
On the way home I was listening to the Star Wars Force Awakens audio book. I got to the place where Rey and Finn meet Han Solo for the first time. That got me thinking of Ham Salad from Space Balls which gave me cravings for macaroni salad. So on the way home I picked up some macaroni salad and chicken sausage. Unfortunately when I was able to finally enjoy it at home it wasn't as good as I imagined it being, but I was able to eat most of it which is a win.
As for the ringing in my ears it's been happening at various, annoying levels ever since my last chemo treatment. I mentioned it to my oncologist twice and then again today to the nurse. They both asked if I have experienced any other changes in hearing or pain which I haven't. So they just suggested I monitor it and let them know if it gets worse. However, the nurse said it could last a week or so. If it's still happening by the time I get my next treatment they'll probably make an adjustment.
Those are the worst things I've experienced so far. Aside from that I'm starting to have some dryness in my mouth and I'm feeling some tightness on the right side of my neck. I'm not sure if that's from the radiation or the scar from my neck dissection.
I've just trying to stay focused on the end game today and distracting myself with work and making plans for the future. My older son just bought a motorcycle and I think of all the fun we'll have riding together after all this is over. Amazing how distractions can take your mind off the crap you're traveling through.
Sunday, October 23, 2016
Shout Out to Aloe Gloe

I wanted to give a brief shout out to Aloe Gloe for being a huge aid during this period of recovery from my tonsillectomy. It has saved me much pain and discomfort on a daily basis.
I've used it since day one to chase down food even the soft ones like soup, mashed potatoes and spaghetti. I've used it as a follow-up to other drinks like milky protein drinks that left my throat feeling mucilaginous. Most importantly I used it to make taking liquid Hydrocodone (my pain medication) tolerable.
It's kinda ironic that in order to be relieved of my pain I have to endure the added pain of taking my pain medication. At first I used it to chase the medicine. That provided follow-up relief but it still required me suffering through a moment of painful, burning sensation in my throat. But I soon realized that if I poured my dosage of Hydrocodone into a small glass and mixed in an ounce of Aloe Gloe it tremendously decreased the burn of drinking the medicine straight up.
Luckily I thought of using aloe water immediately after surgery. I didn't have any previous experience with this product, it was just one of the aloe drinks my wife happened to come upon while trying to fill my request for an aloe drink.
There are quit a few out there but I didn't want one with a lot of sugar or any other added ingredients or pulp to make swallowing any more complicated than it already was. I also tried aloe products with coconut water, but the coconut made my mouth and throat feel dry. I just wanted something that was soothing enough, that I could drink everyday and that wasn't as harsh as water. You wouldn't think water is harsh but when your throat is raw you can definitely feel how harsh it is. Kind of like dry winter air on chapped lips or dry sinuses.
Anyway, I just wanted to share my experience with this product so that others could hopefully benefit from it and be saved of any unnecessary discomfort. Live well, heal fast.
Monday, September 19, 2016
Louise Hay - Love Your Body
I've been meaning to share the "Love Your Body" by Louise Hay affirmation audio book for a few weeks now. I came across this looking for audio books to help keep me in a positive frame of mind. If you sign up for her newsletter you can get it free, but the free version is only a link to her website where you can listen to it for free. To download it you need to buy it. I ended up enjoying it so much that I went ahead and bought it.
The book primarily deals with creating a healthier body image. What I really enjoy about it is that it also describes how each part of your body relates and interacts spiritually to the world. It provides plenty of positive, healthy imagery that opens your mind to acceptance and healing.
When I first got it I listened to it driving to and from work. My commute is long enough that it translated to four times a day. Since then I've gotten several other audio books that I'm listening to now to help me culture a more positive, healing attitude. Now I listen to "Love Your Body" while falling asleep to allow my subconscious to absorb it while sleeping. My wife enjoys this too.
I've also considered using this as a guided meditation. I think it would be great for that. I'll have to make time to try this soon. I've have a lot of attitude to adjust.
