by the way

I solved the "nothing rhymes with 'orange'" thing.

Door hinge.

So there's that.

I don't have any news. Just here waiting. I did find these pictures buried in my email. I added some for a mini timeline.

This one is from the first day after surgery. May 13, I guess, but it could be the 12th.

The only sleep I got

Leavin the Pit of Despair

Radiation Graduation

 

Need more chin whiskers

"I am in fact, a hobbit in all but size"

Dramatic improvement in the last couple of days. I have been craving pancakes for some reason. I don't even really like pancakes all that much, but the thought of them has been growing in my brain for days. I finally decided that I'd deal with it, so I tasted the syrup we have in the fridge and I could taste it! No more reason not to head out and get some.



As it was 9pm and dinnertime, we all piled in Kev's truck for Mr. Toad's Wild Ride to the nearest Denny's.  I ordered the Build Your Own Slam - 2 pancakes, 2 eggs, hashbrowns and sausages and a glass of strawberry lemonade. I should have ordered the eggs over medium, because over easy was too runny. I couldn't really taste it anyway. Shoulda got them scrambled so I could dowse em in ketchup as I did the hashbrowns. Those were good. The sausages were not. Old and chewy.

The pancakes, for which I'd craved, were light and fluffy, but the syrup was obviously imitation maple because, unlike the real maple syrup I tried at home, I couldn't taste a thing. This and the cakey quality of the pancakes made eating them a futile effort. Irony, that.

Regardless of the small disappointments, the overall mission was a success. My first real meal in 2 months and I could taste most of it, though, admittedly it was the ketchup that saved the meal. I ate everything except the sausages and half the pancakes. A little return to reality afterwards. I was fairly worn out by the time we got home, but still happy to be making improvements.

I have an appointment with Dr. Woo on Wednesday. I think he might take out my feeding tube. I have a long list of questions for him. I'd read a bit about lymphadema. Basically, since Dr. Rothman removed 27 lymph nodes from my neck, the lymphatic fluid that they usually carry away can build up and cause problems. Most of the stuff I've read pertains to breast cancer patients and I need to find out how it affects head and neck cancer patients. Breast cancer patients tend to have 2 or 3 nodes removed. Common problems are swelling in the arm on the side operated on, which is painful and is treated with tightly wrapped bandages that must be worn for weeks. From what I've read, it's not pleasant at all. I doubt this treatment can be adapted to my issues. Can't wrap my neck in tight bandages.

One of the therapies used to treat lymphadema is gentle, specific massage. The fingertips are lightly pressed to the area and moved very slightly down and towards the torso. The other thing I'd read concerned flying after node-related surgery. I'd only seen a couple of things related to this and need to ask if it's true.

I also have to ask when the PET scan will be and how long till the results are back. My dad wants to fly out for it if the time between the scan and the results isn't too long. The last thing I need to ask concerns my lack of saliva. The radiation and chemo pretty much killed those glands. They'll come back, but haven't so far. There's a product that's called Biotene, I think, a spray that acts like synthetic saliva. Part of the problem I have eating certain foods is this lack of saliva. Too dry and I can't swallow. Meats are the biggest issues in this regard.

Anyway, time for my second breakfast!

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.

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!

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!

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.

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!!

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!!

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.

Sincerely,
thank you,
Guy

Erm

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.

Hesitant

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 copicmarkerscrapbooking.com 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: protoguy11@yahoo.com

Surgery

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.

Bleh

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.

Update

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.

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.

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.

And Now For Something Completely Different

A blog is a selfish thing at most times. You spend all your time talking about yourself, either because you're using it as therapy, as most of mine is, or you're trying to let people know what's going on, which is the rest of what this is. There is always an aspect of hope that people will read it because they care enough to. Whether it's just because you write well enough to keep people interested or they simply care about you enough to want to know. all of which applies to my and my blog here.

I just wanted to take a moment and say how much I love my family. I don't know what I'd do without them. Don't get me wrong, my friends are awesome too, but there's nothing in the world like having a family that truly cares about you. And I know enough people who have crappy families who don't seem to care about much but themselves.

My parents, who are still married to one another, a rarity, are the best. Not only did they fly all the way from Florida to Arizona for even the small biopsy I had in April, but they came back and stayed through my entire operation and recovery in ICU, visiting me every day. It doesn't sound like a lot really. I mean, whose parents wouldn't do that for their child? Too many it seems, and I'm aware of that enough not to take it for granted.

My parents are retired. My father is a smart man and made plenty of preparations for his retirement. Granted he had the means to plan a good one for himself and my mom, being a retired airline pilot and was employed before the airlines basically gutted all their pensions and wages, but he had the foresight to even plan for my daughter's college education, enrolling her in the Florida Prepaid College Plan. There is no way I could have sent her to college without it.

On top of that, my mom and dad have taken the even more amazing step in renting a house here in Chandler so they can be here for me throughout my entire chemo and radiation treatment. While it is true that renting a house in Phoenix in the middle of summer isn't the same as during the fall and winter - it's cheap - it's still another expense draining their retirement funds. I can't say that isn't somewhat hard to deal with - the idea that my illness is taking away from their retirement. Even the idea that my mom can't go play tennis with her friends and my dad is missing his regular golf habit and the golf tournament he plays in every year - the one he won last year - is hard for me to take without feeling a bit sad.

My daughter is in College in Florida and can't be here for much of my treatments, but she came out for the operation and is planning to visit me in August. Even still, she texts or calls me nearly every day just to ask how I'm doing. I'm supposed to be the one bugging her about stuff. Asking how she's doing, making sure she's doing well in school and not partying too much, and here she is taking time to check on me.

I love my family. Thank you mom and dad. Thank you Kaia. You're the best things about me.

Perchance

Ah, sleep. Wouldn't that be nice?

The ringing in my ear has gotten a little worse. Nothing too bad though. The side of my neck is starting to look a little 'woody' though. No burns so far, but definitely red. Perpetually sunburnt. And of course the inside of my mouth feels like I brushed my teeth with daggers instead of a toothbrush. Vicodin isn't really doing much for that, nor is the salt and baking soda gargle the doc said I should do four times a day. All things I can deal with, except for the gunk in my throat. That's driving me insane.

I guess that's what this blog has become. Rather than a running journal, a list of complaints. Better here than boring my friends and family I suppose. At least I have a good book to read in lieu of sleep. Dance with Dragons is long but it's not boring. Almost 1000 pages and I'm about 80% through. So far no major characters are dead. It's the little things...

I need to go to DES tomorrow, but I won't be able to get there till Friday. I got a call that my benefits will be cut off at the end of the month. I think it means my food stamps, but knowing these idiots it could mean my Access. That would be bad. So I have to go stand outside for a couple of hours in 100+ degree weather in order to find out exactly which they mean and how to stop it from happening, whichever it is. If they kill my Access, according to yet another letter, the state is stopping all new applications, which mine would be if they stopped it and I had to try and get it restarted. Budgets ya know. Cuz it's more important to pay shitty politicians and keep the money-making highway cameras running than it is to make sure people don't die.

Which brings me to the brunt of my long-term problems. If and when I'm considered a "survivor" of cancer, rather than a patient in treatment, I either have to somehow remain unemployed, and I'm sure with a good reason the state will accept, or...what?

If I get a job, I'll make too much money and no longer have AHCCCS and not be able to afford any followup treatment, such as the PET scans I'll need to make sure I'm still cancer-free. If I go back to Pizza Hut, Cigna has already dropped me and if I re-enlist in their insurance plan, which won't pay for even 3% of the costs of such followups, it will be considered a pre-existing condition anyway and I won't be covered. Getting my own insurance is an option, but the cost will be way more than I'd make, and it would still not be covered as it will be considered a pre-existing condition. Even if I'm lucky enough to find a real job with real insurance, it will still be considered a pre-existing condition and I won't be covered.

So I'm basically screwed. I have to remain unemployed and hope the state ignores the fact that I'm essentially able-bodied but unable to work because work means no insurance. It's a maddening circle.

Then there's the fact that if that does work, I'm stuck in Arizona for the foreseeable and long-term future. The same problems will apply to any job I get anywhere else: pre-existing condition. Even worse, Florida is in even more of a crappy condition thanks to their moron governor, Rick Scott and his manic, idiot-boy cost-cutting. It was bad before, where anyone applying for their version of Access had upwards of a 3 year waiting list, but now, programs like Medicare and Social Security and other safety nets for people like me are being cut like a 14 year old girl's forearms; left and right for no good reason. Just to do something. And then there's the fact that I would have to establish residency. I'm sure that's a nice flag for me not to get help.

So I'm stuck in Arizona. I can't move back to Florida to be closer to my daughter. I can't even move into my parent's house, which they've offered. Not unless I want to live the rest of my life on hopes and wishes that my cancer stays away. With no followup tests, despite the fact that there's a chance that the treatment alone, you know, all that radiation and chemotherapy, might be causing secondary tumors. Despite the fact that I still have a chance of developing further cancer in my remaining tonsil and lymph nodes.

And forget finding help anywhere else. I gave that search up long ago. The American Cancer Society, Cancercare.org, Livestrong, Medicare, Social Security, Disability. They have nothing other than support. I can go to a meeting every day of the week in every city in the country but there's nothing at all to help with the cost of treatment or followup. I can get counselors to come to my door and talk to me about how f-d I am and give me hugs, but not one single group to help with the financial side of things. Unless I was a woman. There seems to be a number of groups that offer help for women. Kids too. Even minority groups. No such thing for a middle-aged white guy. Social Security only considers me disabled if I need dialysis. Medicare will offer nothing unless I go through Social Security first. Hell, even the local chapters of the American Cancer Society told me they don't even have food programs, but I can come down to the offices and rummage through their clothing donations.

But yeah, one Predator Drone costs $4.5 million.

More Self Pity Than Usual

I suppose at this point spitting blood into the sink shouldn't be so shocking, but there's something very basic about seeing the red, red kroovy splatter the porcelain. It's not a lot of it, and I don't feel panic or scared, just bothered more than I should be. The same thing happens when my feeding tube stoma gets irritated and bleeds. It's normal but still unnerving.

It's similar to the feeling I get when I try to swallow certain liquids or solids and it's painful. I feel like I shouldn't be doing it, like I'm causing damage and should avoid it. I mean, that's what pain is right? Your body telling you something's wrong and you should stop, right? The docs assure me that it's just pain from the muscles and tissue that are already damaged, but it doesn't relieve the feeling that I'm tearing something by forcing it to do what I'm doing.

I don't really know how to describe a lot of what I'm going through. I don't think I've ever been scared, at least not of the treatment or the outcome. I've been afraid on certain occasions. During recovery from surgery, for example, when I know the doctor is going to come in and do something that's sure to be painful. That's a different kind of scared I think. Me being a big baby is how I would have described it to Jolly, my old ICU nurse. Me being afraid of her taking out the staples. That's just fear of pain to come. Even still, I don't really have any fear of the pain of the present and coming treatment, the side effects. Maybe it's that 'ignorance is bliss' thing, not knowing what to really expect, but not really. Normally not knowing increases fear, builds it in our heads and makes it larger than it will likely be. I guess my only real fear at this point is the possibility that it all might not work and I won't be able to see Kaia again. That's the only thing that seems to really stop me short and scare me. Even writing it down makes my throat tighten painfully.

It's late right now and I can't sleep. Headache, mostly. That and the constant mucositis. I've been avoiding describing this particular part of the side effects because it's just so gross. Basically, the skin cells in my mouth are dying off and sloughing away. This combined with my immune system's white blood cell destruction, those awesome little guys who die by the trillions fighting infection and repairing damage, make the back of my throat feel like a waterfall of goo. When you get a cold or an allergy attack, all that gunk you blow out your nose is pretty much white blood cells that died in the fight. With allergies it's usually clear but when you have an infection, the gunk is another color; green or orange depending on the kind of infection you have. Mine is all clear (aside from the blood), which is a good thing. The problem is there's so much more of it and it's not draining out of my nose, so blowing my nose doesn't help. It's draining from where the damage is occurring: in my mouth and the back of my throat. This does sort of relieve the dry mouth that's another side effect of the radiation - my saliva glands have taken a massive hit as well - but it's not a good wet. It's a sticky, nasty and gross thing. I can still brush my teeth without too much trouble, but no amount of brushing or rinsing or spitting relieves the gunky cascade of ick.

Now that no one will ever think of kissing me again...

Ever since I got divorced, which is going on something like 13 years ago, I've felt like I've had post traumatic stress syndrome. Not exactly that, but something akin to it. Before then I felt like I was this normal guy, but ever since having to go through that, my emotions are all completely screwed. I don't want to be overly dramatic, but my divorce was bad. I have heard that one of the counselors brought in to evaluate my ex-wife, daughter and I, quit doing evaluations because of it. I've heard rumor that one of my attorneys still views my case as a horror story to frighten little lawyer children at night. I admit that I'm still bitter over a lot of what happened to this day. I don't talk about it much anymore, mostly because people don't really want to hear this crap, but also because it does make me sound very bitter and a bit sexist and well, like a cranky old ass. I do still have a lot of animosity for the whole family law process, as it was made very clear to me during the entire thing, that as a man, I was brought down by one or two minor things that people said about me - you know, hearsay and character attacks by my ex-wife's friends and family, while things my ex-wife did, things that should have landed her in jail or even prison were ignored almost outright. Of course it's more than that. A huge, disgusting combination of bad lawyers, biases within the system and within the people administering that system. People often tried to reassure me that the system was getting better, that laws and procedures were in place to make it more fair, but the problem I saw was that, despite black and white legal bullshit, there were people in that system, people administering those laws and deciding whether or not to apply them, how they were applied, how they fit or didn't fit. People with their own biases about mothers and fathers and daughters. No matter how many laws you write or papers you author, once you sit in front of a person who has authority, it's all about their beliefs and their opinions. No matter how many Casey Anthonys or Lashanda Armstrongs or Julie Scheneckers, people instinctively believe that a child belongs to, not with, TO, their mother. They believe, despite how many papers or news reports or even personal experiences, that a mother is the best person to raise HER child.

And that's another part of the problem. The idea that a child belongs to the mother outright. That belief that men are simply throwing their seed into a woman and that's the end of it. How often have I heard women say exactly that? How often do we have to hear women say "my child"? How often does it happen that a mother will deny a father the right to see his child or even know his child exists because the woman believes she's the child's only real parent? When Forrest Gump came out, I feel like I was the only person on the planet that was seriously pissed off that Jenny had kept the knowledge that Forrest even had a child from him for years and only when she wasn't able to care for him anymore because she was dying of her own self-centered behavior, only then did she drop the kid in his lap. And people responded like it was a selfless, kind act! I'm sorry, but it's not. It's a selfish, evil and cruel thing to do to someone. To the child and to the father. That's the kind of ingrained lie we live in. The lie that men are not needed. The lie that men can't be nurturing or caring or that they have as much right to be a parent as women.

Tangents, I goes on em. I did have a point before I wandered into my own bitter tirade. PTSD, yes. Ever since the disgusting fiasco that was my divorce and the following custody fight (I have to admit to having a lot of help from my friend Deborah. I wouldn't be where I am in regards to my relationship with my daughter without her. For all the bitterness I have towards women and the system, it was a woman who gave me the most help. Part of my bitterness actually comes from that, because I believe that without that "inside" assistance I would not have been able to accomplish anything and would have gone the way of most fathers. To the sidelines hoping that the mother of my daughter wasn't doing her best to alienate me from her. It's not a myth that there are absentee fathers, but it is a myth that they are all deadbeats and don't care. The truth is that many simply remove themselves from their children's lives out of sadness and to relieve their children of the animosity and petty power games)...

...sorry. Ever since the fiasco that was my divorce, I have felt damaged. I don't seem to be able to watch a movie or a tv show without being on the verge of tears if there is a theme about children, especially daughters, or love or heartache. I feel like that part of my psyche is damaged beyond repair. Even music does it to me sometimes. I know it's not unique or earthshattering that this happens, but it's been bothering me more and more lately. Knowing why it happens and facing the truth of that why doesn't help at all. Maybe some would say that it only means I'm more closely in touch with my feelings. After all, isn't that the idea of these types of things? To elicit a reaction? Women cry in movies all the time. Should I be bothered that I do now too? I am. I do feel like something's broken. That my emotions shouldn't be so close to the damn surface all the time. Especially since those same emotions don't seem to be present at all concerning my own health problems. If my emotions are so raw, shouldn't I be more of a wreck concerning my cancer? Shouldn't my fear and depression be more evident in all things, not just where they concern women or my daughter? It's that disconnect that makes me feel like there's something wrong, not just that I'm closer to my emotions.

I do feel sometimes like I've given up on most things. Maybe it's part of getting old and making an emotional priority list. I feel as though the only thing that matters anymore is my daughter. I don't hold any real hope of finding love again. In the back of my mind I do hope for it, but it's not real and not...realistic. Sometimes I think it's more like the reason I don't drink anymore. The hangovers aren't worth it. I used to feel like I could give my heart completely and damn the consequences. I don't feel like I could do that anymore even if I wanted to. And I don't really want to. I feel like the last one took too much out of me and there isn't anything left there. Maybe it's partly because of the cancer and how damaged I feel, but I think I felt this before the cancer. I know I felt it. It's not about the scars and the limitations of my "new normal", though I think that would make a big difference. Who knows? Maybe those limitations will be the very thing that fixes me. Like limiting a palette sometimes makes for a more beautiful painting. I guess I still have some hope.

I used to joke that she was 18 and off on her own and now I can die, but the idea wasn't only a joke. I felt like I did my job and finished what I'm here to do. I really felt ok with being done with life. Not that I wanted to die. I want to live forever. But that I didn't have to struggle anymore to remain strong and keep struggling through this shitty world. I don't feel like that anymore. Maybe it's because I did get cancer that I really understood what not being here and seeing her grow up meant. Now I feel a determination to be 'here'. Part of it is surely that she has essentially lost her mother and the idea that she would lose her father also is too much for me to cope with. She's a rock and I know she'd be okay but I feel like I can't let that happen. Maybe that's why I'm not really afraid of what's coming and what's happening. at least not afraid for myself. It's just one more thing I have to do to still be 'here'. One more struggle. One more fight. There's something to be said for being stubborn I guess.

End of Week Four

I feel good. My mouth is a wreck and I am still depressed whenever I try to eat anything because it tastes like absolutely nothing, but I still feel good. Considering what I am doing and the nasty crap going through my cells and bloodstream, I feel a lot better than I thought I would and better than the doctors said I would. I don't know if it's just a matter of time and it hits me like a boulder, but so far I'm doing ok.

I have been trying to describe, even to myself, what 'nothing' tastes like. How do you describe the lack of something? I guess it would be like trying to describe a flavor to someone who hasn't tasted it. How would you describe banana to someone who hasn't ever tasted banana? It really doesn't taste like anything else, so you can't say, "It's similar to...".

The problem is that there is nothing. Some people have described it as being like eating straw, but even straw has a flavor. This is the total lack of it. This is actually the hardest part to deal with. I said it was depressing, but I'm not depressed. I'm annoyed and, well, kinda pissed. I can deal with burns and sores and losing my hair in weird places (all on my head, children), I can handle fatigue, though I admit I'm very glad there's no serious nausea, but I wish I could taste something.

I've found a small consolation. I have never like Campbell's chicken noodle soup. I've always felt like the broth was not legit, like it was too greasy or too golden or something. I'll probably feel that way again when the taste comes back, but I have to say, 'thank heavens for chicken noodle soup'. Heated up just right, the broth is soothing and the noodles are just soft enough that I can chew or swallow and it all goes down real smooth. It's probably that extra chicken fat I would have complained about. I don't know, but I swear I could almost taste something.