Monday, August 29, 2011

Can't Stand Up For Falling Down

Saw Dr. Szewczyk today. She said my blood work looked great. Looked in my mouth and complimented me on how clean it was compared to many of her patients. Brushing is rough but there's no way I'm going to let my teeth go bad too. She didn't really have anything more to offer for the mouth issues except try Claritin instead of Zyrtec. Gave me an antibiotic prescription for a possible sinus infection.

The bad news is that Dr. Woo was a little optimistic. I guess he's just thinking radiation, but whatever. According to Dr. Scewczyk I have about another month before I start to really recover. Right about the time I'm due for my PET scan in the beginning of October. real sleep for another month...

Saturday, August 27, 2011

Blood Work #4,983,222

Back to Sonora Quest Labs for blood work in advance of my appointment with Dr. Scewzyck on Monday. Not the last by any measure, I'm sure.

Still not feeling any better since the last treatment. Wednesday will be 2 weeks. Hopefully the doc was right and I'll see some improvement soon. Very tired.

Tuesday, August 23, 2011

Well, We're Waiting

Well, it's been 6 days since my last radiation treatment, and it's safe to say this is the worst I've felt through the whole process. It's a little odd to think that the radiation is still doing it's little neutron dance in my face this long after finishing treatment, but they seem to be slam dancing pretty hard in there. My mouth is so sore and burned up inside that I can't really talk. The doctor had given me morphine and magic mouthwash, which has lidocaine, and I hadn't used either much through the whole process until now. The morphine is all gone and the mouthwash is nearly empty. I'm not sleeping more than a half hour at a time before the mucus builds up enough that it wakes me, choking. The fatigue is mostly gone, but has been replaced by plain old lack of sleep.

One thing I've noticed over the last few days, no matter how loudly or clearly I speak, every single person asks "what?" after every word or sentence, making me repeat myself and further tearing my tongue and cheeks apart. This happened before all this radiation crap, but obviously it's a bit more troublesome now. The really frustrating part is that if I don't repeat myself and just sit and wait five seconds, nearly every person finally answers the question or acknowledges what I had said, confirming that "what?" is just a knee-jerk response to everything. It was frustrating before, now it's infuriating and painful.

Kaia left yesterday. Back to Florida and school. Miss her already.

Wednesday, August 17, 2011

There And Back Again

Well, it's official. I'm done with chemo and radiation!

The techs from the radiation room gave me my mask and some t-shirts for the family and some "congrats!" balloons. Even so, it was a bit anti-climactic, but still, very happy to be done with it.

On the down side, Dr. Woo was not happy with me for losing so much weight in the last week. 158lbs is not good, especially when I started at 174, according to his notes.

Afterward, the family and I drove to Banner Desert Regional, the hospital I had my surgery at, to attend the SPOHNC (Support for People with Oral, Head and Neck Cancer) meeting. My surgeon was to speak at the meeting and my parents were very interested in going. Since my radiation took place at 5:00 and the meeting started at 5:00, we were a little late, but caught the tail end of his talk. It was rather interesting and somewhat befuddling how there were a couple of old farts there trying to rationalize their drinking with questions about fermentation versus distillation. Basically alcoholics looking for an 'out' to continue drinking, even though Dr. Rothman clearly stated that alcohol use, along with smoking, is THE main cause of head and neck cancers and the continued use of alcohol is a huge contributing factor in survivors having reoccurrences of cancer. Genetic mutation being the main driver in cancer growth and damage to cells being the main cause of that mutation. Alcohol causes damage to cells. Period.

There were also a number of questions about vegan diets and the like, which Dr. Rothman answered fairly diplomatically, but directly. Basically, he said that while he can't argue that eating whole foods isn't healthier, there is no data correlating a vegan diet, or any diet for that matter, with preventing or curing cancer. In fact, he went as far as saying that the vegan movement, culturally, is about selling vegan products and vegan cookbooks and vegan t-shirts and the idea that it can cure or prevent cancer is just another branch of that marketing business. It is all supposition and none of it is based on scientific research. In fact, the concentrations, none of which are found in nature, are often a cause for damage or illness as opposed to being therapeutic. I took this to mean supplements and the idea that pushing certain herbal "infusions", which I've actually heard a great deal about in the last few months. More than a few people, some even in the medical field itself, have tried to convince me that I should stop my treatments, that they are just damaging me and are the product of greedy doctors in cahoots with the FDA and are just after my money through expensive radiation equipment and such. Oddly these are all people who have already been through traditional treatments and are 'converted' after the fact.

I did get to talk to another patient I'd met previously, a man named Frank. He went through a similar treatment regimen as I, having also had cancer of the tonsil. He was, however, treated at the Mayo Clinic here and had a distinctly different surgery than mine. While he did have cancer in both tonsils, he didn't have to undergo the whole jaw removal thing. I did find out from him that his treatment ended in mid-July and he's already gotten some of his sense of taste back. Good news indeed. Bad news is that he's developed some lymphodemia, which is a common occurrence after this sort of cancer. Basically, because he had lymph nodes removed, the fluid the nodes would normally be helping pass out of the body are gathering in his neck and causing issues. Good news seems to be that this is alleviated with simple physical therapy.

So, I'm sorta done. I have a followup with Dr. Szewczyk on August 29th and another with Dr. Woo on Sept 21st. Other than that, I'm done for the time being!

Tuesday, August 16, 2011

One More Day

Well, according to the Ironwood peeps, I only have one more session! I was originally scheduled for 36 treatments, but somewhere along the line that got changed to 35, so today was my second to last treatment. Bad news is I can't celebrate properly! Normally such good news requires a trip to a nice restaurant for some great food, but that's not in the cards. No big deal. Soon enough I'll be able to chow down proper-like.

The last couple of days have been rough. Very tired, very sore. I actually had to crack out the morphine a couple of times yesterday. At least the nausea/heartburn went away, for the most part. Once I'm done with my treatments though, it's going to be about two weeks and then I should be working back to normal. Well, the "new normal" as they say. Nothing is really going to be the same as it was, but that's ok. I'm hoping that my brilliant healing powers will even bring back my sense of taste sooner than expected.

Something came up the other day and I thought I'd address it here. My daughter asked me if I felt any different, felt any of the effects right after the radiation session. The answer is no. You don't feel the radiation at all. It's like getting an x-ray. You also don't really feel any of the effects later. They just sort of creep up on you and are just 'there'. Which is why it's difficult to discern which treatment is causing the side effects. I have to rely on what I've read and what the doctors tell me to determine which is causing what issue, the chemo or the radiation, and often I'm surprised to find out it wasn't the way I thought it was. The taste bud issues, I thought, were the result of the radiation passing through my tongue and killing my taste buds, but apparently it's the chemo killing them off. Which also makes it strange that I still have a great sense of smell. I would have though that since the two were kind of linked in the way the brain works, that the two would be somewhat equally affected by the chemo. Apparently not.

Welp, this time tomorrow there's going to be a party in my pants!

Monday, August 15, 2011

Little Things

It's strange how things work out. I was having a lot of pain in my mouth so my doctor prescribed morphine. I was pleased that she was attentive enough to my issues to do so without the whole hemming and hawing about addiction and stuff that my surgeon was going through - and that, three or four days after cutting my face in half and burrowing up near my skull. Oddly, the day after I filled the prescription, the pain subsided enough to where I don't need the morphine. I haven't even had to take the vicodin.

Unfortunately, the pain was replaced by some pretty harsh heartburn/acid reflux. Nothing seems to alleviate it. I have Prilosec and anti-nausea meds and Tums, but nothing really helped. I'm feeling like this is my version of chemo nausea, as it does feel like my stomach wants to get rid of what's in it, but I don't throw up. I can count on one hand how many times I have in my life. The feeling has lessened a lot since yesterday, but the thought of waking up knowing that I had aspirated into my lungs a little in my sleep was enough to keep me awake most of the night. From my research, I'm keenly aware that the last few treatments are often the time of the most vulnerability to things like pneumonia and other problems associated with lowered immune systems combined with issues like I was having.

On top of that, I was having issues with my stomach today that I hadn't experienced before. I've lost more weight lately than I'm comfortable with and have been trying to force myself to eat enough, but while using the feeding tube today, my stomach seemed to rebel at the fact that I simply do not throw up and took matters into it's own...hands. While feeding myself, my stomach basically started pushing what I had just put in, back out! My damn liquid meal just started overflowing out of the Bolus syringe and onto my lap! So gross and a bit unsettling. It happened twice before I gave up. It could have been just air pushing back out through the feeding tube, but no air seemed to come out, just the Fibersource food.

I managed to get some in me without incident later on this evening, so I'm thinking it did have something to do with the stomach issues I was having. Hopefully it's a one-time occurrence. I'm already paranoid about the feeding tube enough as it is without issues like this cropping up.

On a much more positive note, my daughter finally made it here and we spent the day together with my parents and then to see Harry Potter. It's only been a couple of months but with all that's going on it seems like I hadn't seen her in forever. That and the fact that I only have 4 more radiation treatments combine to make a very happy Guy.

Friday, August 12, 2011

Four More Days

Just got back from Radiation treatments. I get a couple of days off for the weekend. Then just four more treatments till I'm done. Hopefully. I get a nice long wait of 6 weeks before I get a PET scan to see if I'm really clear of this crap.

I am very pleased to say that, even though the side effects have not been fun, they have not been as bad as I was told they'd be, even this far in. According to the doctors, the effects of the radiation and chemo continue for about 2 weeks after the last treatment and then the side effects should start to go away. Except the loss of taste. Of course.

Right now I'm experiencing a bit more burns than before. I'm sure it's a cumulative thing, like getting sunburns on top of sunburns. Still not too bad and certainly not painful. You can see from the pictures that my skin is browned, but in strange patterns and it seems like it's brought about moles and freckles, more than an even tanning. Weirdness. The scarring is turning whitish from the chemo and the scabbing in the junction of the scars is white more because it's peeling skin than scabs.
You can also get a good look at where the hair on the back of my head is gone for good. I shaved it up in a sloppy fade to cover the weirdness, but it's still kinda weird looking. Oh well. A small thing.

All really yummy and fun, no?

Almost done!!

Wednesday, August 10, 2011

No Mo CheMo

Yesterday was a good day. Today, not so much.

Yesterday was my last chemotherapy session. I got me a certificate an everthang. Got my picture with some of the girls. I felt pretty good most of the day. The chemo even seemed to have calmed my mucus up a bit. But man, I was tired. The fatigue hit me pretty hard and I went to bed at around 8:30 and didn't wake up until I had to the next day for my shot of Neulastin at 3:30. The shot never hurts, but the meds burn going in really bad. More than any damn shot. I had to go back and get my radiation at 5:00 and they couldn't take me early so we left and went and walked around the mall for an hour. That just about wiped me out. I was so tired I fell asleep on the radiation table. The session is about 4 minutes long.

Went home and right to bed. I woke up a couple of times to force myself to eat, but it's all I can do to stay awake for 20 minutes without flopping back in bed. All of that's not that bad really. I just feel ick today. My kind of chemo-nausea is mostly just bad heartburn and it's really bad right now. Acid-reflux burning in my chest and throat bad. I just got up to eat and my hands are shaking from how nasty I feel. And the mucus isn't gone, it's just taken a nastier form and really buggin me. Overall I'm feeling better. I haven't had to take any pain meds at all today. Which is kinda funny since I just got some good straight up morphine for pain and no reason to take it. Probably for the best. I have 6 more days of radiation and my mouth is probably going to get worse before the end.

Oh well, that's enough feeling sorry for myself for one evening. 4 more days and my baby gets here! Can't wait, I miss her so much. You're my reason for livin kiddo!!

Tuesday, August 09, 2011

Dr. Gorgeous' Soothing Syrup

I suppose it ain't right cheering for hard drugs. Too bad.

Dr. Gorgeous saw me halfway through my chemo session. The second to last I'm to have, Wooohoo! Her assistant asked how I was doing and I let her know. Basically I tried to talk. That was nearly enough. I think it was for the Doc too cuz she gave me freakin morphine. I'm sure it's not a high dose, but the contrast with Doctor Stingypants trying to tell me Ibuprofen was fine 8 days after he cut my head in half and tore out half my pecs is just too much. And it's not a pill! So I don't have to try and gag it past the razor blade in my neck.

So I got Morphine, some stuff called Miracle Mouthwash, which is a custom mix of Lidocaine and two other things I can't remember now. One is like Benadryl I think. Either way it tastes like I'm gargling sunscreen (yes, for some reason the nasty medicine I can taste). I also got a scrip for the infection that's turned my mucus orange or green, depending on the time of day it seems. This tastes awful too. Bad news is the pharmacist didn't have the morphine, and the one they sent me to didn't understand the instructions so she couldn't dispense it until she talks to Dr. Gorgeous tomorrow.

So I'm getting my literochemo and I remember I forgot, again, to call and have the other med I need delivered. It's three horsepills (yay) that I need to take during the two days of chemo and one after. I call the shop to ask them to deliver it to Ironwood and she says it will be there in two hours. Naturally it took 3 phone calls and 5 hours to get there. Regardless, the needle hurt but I don't care, the room was cold and dull but I don't care, the nurse/tech/whatever was a cute brunette with a great....personality and I only have one more day of toxic crap goin in me.

*late night edit* Yeah, I should be asleep. I forgot something important.

I wanted to thank all the exceptionally generous people who've selflessly pressed that donate button. You know who you are. I won't name names but you're all really humbling me. Some more than others, Ha! Kidding. Sorta. I'm actually in shock at the response and have no way to thank you. I did send something but it's so insignificant compared to what it's thanking you all for I'm almost embarrassed.

thank you,

Monday, August 08, 2011


I think I'm finally starting to feel better after my four day weekend. Just in time for chemo. The headaches and earaches are much less than they were at the end of the week. The fatigue has lessened a good bit too, but the gunky throat issues are still there as is the feeling that my mouth is burned up. Swallowing is all but impossible, as I found out earlier tonight. Heartburn is on full again, but because of the swallowing problem, I can't take the antacid as it's too big to swallow and it's a time release capsule, so I can't open it and take it through the tube. Either way, I need to get some sleep if I can. 10am is going to come awful early.

Saturday, August 06, 2011


I've been hesitant to do this, but well, the last of my ex-wife's back child support is gone and the two fundraisers Pizza Hut and my awesome friends Colleen and Christian at started are gone as well. I'm still unemployed due to this wonderful thing called cancer and my parents have started paying all my bills. I've been getting a little bit through Etsy and sales of my paintings but it's hardly enough to see the ends, much less make them meet. So I've plopped a "Donate" button here. It's over there to the right above the social networking links.

I don't want to guilt anyone into sending a donation. If no one sends anything at all, that's perfectly fine, but I wanted to give people the opportunity. Mostly I just want to mitigate the amount my dad has to drop into the black hole that is his son. This blog started out as a marketing tool to get my work seen and hopefully generate sales and that's still very much preferred since you would be getting something in return - some nice art for your walls, but for anyone who can't afford a painting or who might not see anything they like (I do commissions too!), this is a way to help without dipping too deep into the cash flow. Any amount is truly appreciated and if you include a mailing address, I'll send something as a thank you. It's Paypal and you can use any credit card. If you don't want to click the button but still want to help, my Paypal account is under my email address:

Friday, August 05, 2011


I've been thinking about this lately because I've been writing about how my doctors, all three of them, have told me that the side effects from the radiation and chemotherapy are worse than the surgery. I've said a number of times that, so far at least, this hasn't been the case for me. I don't know whether this is because I have a good healing profile and have yet to experience real nausea from the chemo or very bad burns from the radiation. The effects do seem to be catching up on me a little but they're still not as bad as the surgery recovery. It's obvious that I'm not enjoying this at all and it definitely is difficult.

The reason I've been thinking of all of this is because I don't want to give people the wrong impression. I definitely had a very difficult time in the hospital, no doubt. To be honest, it's the only time during all of this that I've been brought to tears from the pain and trauma. I know that I was pretty raw emotionally as well as the obvious physical issues, but it was easily the most difficult thing I've ever had to go through. That being said, I'm still glad I had the surgery. I'm not sure not having surgery was an option for me, certainly not if I wanted to get through this. My surgical oncologist gave me the option of going the 'just chemo and radiation' route, but I believe that he didn't believe it was the best option. Stage 4 is only 1 step down from 'get your affairs in order'. I also know from my research that if I had gone that route I would be enduring a much more intense series of treatments and for far longer with likely more serious and permanent side effects. The only plus side seemed to be no scars.

I guess what I'm saying in way too many words is: I'd do it the same again. I don't want to inadvertently dissuade someone who reads this from going through surgery. Even though I felt differently in the hospital, and now I'm looking back through the long lens of memory, which softens the experience a bit, I'd still do it the same. I'd much rather have the evil crap cut out of me as much as possible than have even higher doses of possibly more cancer-causing radiation and larger doses of toxic chemical dripped right into my bloodstream. I think my chances are much better after having the surgery and I believe it was the right way to go.


I guess this is what the doctor was talking about when he said it was going to be rough.

I have read a lot of stuff since finding out I have cancer. Some personal blogs, some informational stuff from cancer websites, some forums for people with cancer. None of them really go into what this stuff is all about, what to expect. The most that's offered are vague sentences about how it's 'difficult' or 'challenging' or simply statements which are nothing more than what the issue is called, like 'mucositis' or even less helpful, 'burns'. None explaining exactly what mucositis is like, how it affects you, what to expect, none going into even small detail about what the burns are like and how they affect you. There is certainly nothing about how the mucus builds up in your throat to the point where it threatens to go into your lungs, choking you. Nothing about how trying to sleep is nearly impossible because of this, or that the mucus accumulates so fast that you have to clear it out every 15 minutes or so or your throat and mouth are filled with it. Nothing about how the burns in your mouth make you gums swell up so much they feel like they're going to grow over your teeth, or how this makes brushing your teeth nearly impossible, certainly very painful.

I can only sleep for about a half hour at the most before I wake up and have to run to the bathroom to clear my throat out. Sleeping sitting up doesn't help at all and the sofa's too far from the bathroom anyway. I have a pharmacy's worth of medications to take for nausea or pain or allergies (to help dry out the mucus), for constipation because the pain meds give you that, but they're all pills and I can't swallow them and some I can't grind because they're timed release or capsules.

Energy to do anything, that's what I need. And some sleep.

Still, not as bad as surgery.

Wednesday, August 03, 2011

New Painting

Not sleeping can have its benefits. Unfortunately it wiped me out a bit. Not too bad though. This is part of a series of small, inexpensive paintings I've wanted to tackle for a long time.

I have also been planning to make my stamp-like logo an actual stamp for a while. Since it's a little Asian looking to begin with, I figured it would add to that vibe. Pretty happy with the results.


Starting to feel very glad that the doctor gave me Thursday and Friday off. The headaches are starting to get worse and my gums are so swollen they feel like they're embossed around my teeth. For some odd reason the percocet, or as most people know it; oxycontin, isn't helping with the headaches at all. Oddly, if I take some ibuprofen that helps.

Sleeping is difficult for all these reasons, but more because often when I finally dose off, I wake choking on mucus. The amount that's working through my system is astounding. I also started using the gel for burns that Colleen gave me. It smells weird, but not as bad as she warned. More like Halloween makeup. My neck doesn't look burned, but it's starting to look 'woody' as my reading said it would. The earache has subsided somewhat though.

Tuesday, August 02, 2011

Two Days Off, Two Days Added

Started radiation sessions again today. Been in a good bit of pain all day. I was supposed to go see Cowboys and Aliens with my parents today but I had to call and tell them I wasn't up for it. Headache, earache, throat and mouth, the usual stuff, just worse than usual. I asked to see the doctor about it when I got to Ironwood. He said the earaches could mean a mild infection and asked if I was eating enough, but wasn't too concerned since I'd only lost a pound since he last saw me. Said my mouth looked ok. I wish it felt ok. He asked if I was taking the vicodin he prescribed and I told him I hadn't because I wasn't having too much pain till this weekend. I said I had one more refill and he said I should start using it and then prescribed oxycodone as well for later. They're pills, but they're small enough to swallow. He did explain that they weren't time release so I could grind them if I need to. He also said he was going to give me a long weekend so I'm strong enough to deal with my last chemo session on Monday and Tuesday. I told him that I really want to muscle through as much as possible, but he insisted that it was a good idea and gave me Thursday and Friday off, which means my last day is the 18th now instead of the 16th. As much as I want to get through as soon as possible, I admit I'm relieved to have a couple of days relief.

Mom and dad drove me to the pharmacy and we waited the half hour for the meds. I took the oxycodone when I got home. It helped my mouth a little, but didn't do anything for my headache. I took a long nap and still had it, so I took some ibuprofen. Oddly, that helped. It still hurts to swallow despite both of these though. The oxycodone can make you nauseous, but just like the chemo, my body's reaction is just heartburn. Small blessings, I guess.

Monday, August 01, 2011

The Good, the Bad and the Ugly

Well, mostly just bad and ugly.

Even as I was saying it and writing it I knew I was getting ahead of myself. It feels like the side effects are finally catching up on me. The ringing in my ears is pretty much constant now and likely to remain that way. The gunk in my throat seems to be getting worse, something I didn't think possible and my mouth is in constant pain. It feels like I gargled with boiling water. The inside looks like it, at least. I'm hoping that's just because I did too much talking yesterday. That's happened before, so I'm hoping. I think I bit my cheek in my sleep too, so yay for that. Either way, the two days off of radiation haven't seemed to have been used by my body to heal. More like it's just taken the time to deepen the hurt.

I also have a headache and sweats most of the day as well as this damn muscle they shoved into my neck. It's always flexed and feels like it's going to rip away from it's new moorings. The muscle relaxants don't help much, and besides, the pills are too big to swallow. I either have to break them in half or grind them and pour em in the feeding tube. All this combined with more fatigue than normal and Peeg is not a happy camper.

But it could always be worse.