Surgery

Who knows, maybe I'll come out like Robert Downey Jr. A little wiry-er or sumpin. Either way, the cuttin starts on Thursday, May 12th, according to the messages the scheduler and I passed between our phones. I guess I shouldn't complain. Before cel phones I would have had to rely on a land line call from a real person who can get answers to their questions. To be fair, I missed the call. So yeah, it appears, so far, that my surgery is scheduled.

Banks Suck

Ever since the government, in response to the immense number of complaints against banks for over-zealous application of overdraft fee rules, which often result in not one $35 overdraft fee, but 4 or 5 more when the first one causes a cascade effect, passed a law saying banks have to treat debit cards just like credit cards. What this means is the new law says 'if you do not have enough funds in your account, your debit card is declined rather than overdrawn. Previously an overdraft cost you a $35 fee because the bank had to get funds to cover your mistake, except you didn't know it was a mistake until it was too late, because the charge went through, right? Now you are $35 MORE in the red and any other checks or charges that might come through, like that auto-payment to the utility company and now you've got $75 more in fees and $75 more in the red.

SO, the government passed a law to help this by making it illegal to let a charge go through if there are no funds, as the banks were using this as a revenue stream. In response, the banks immediately (before the law even went into effect) began a new campaign to "Save you the embarrassment of your card being declined", which meant if you sign up for this "program", you're basically telling the banks you liked it better the old way and you've just opened yourself up to the old overdraft fees again. All under the guise of protecting you from the horrors of being told your card was declined.

It was exactly at this time that my bank (and yours, I'm guessing) started charging me $10 a month in service fees for my "Totally Free Checking". Remember those lies? Totally free? So when I asked about the fee, I was told that I need to keep at least $1500 in my account at all times to avoid that fee.

So today I got tired of it and closed my account. Of course I had to sit through about 20 minutes while the bank wonk explained how I can avoid the fees and how other banks are charging more and how we could figure out some way to solve my problem. Nope. Too late. I've tried to solve this problem 5 times already and have been just too complacent to do what needed doing.

So I went to Chase, which keeps mailing me cards about getting a $100 gift card for opening an account. They pay for this by charging $12 a month. Buh bye.

Then I went to M&I Bank. I managed to pick up a brochure before every teller in the store starting chanting, "I can help you here, sir!" I said that I wanted to talk to an account exec to open a new account, and was directed to, yes, a teller, who described the types of accounts before bringing me over to see - yes, and account manager.
Before she did, however, I asked her some questions about the checking account charges, which were $10 a month too. The difference being that the brochure said all I had to do to waive this fee is to complete 3 transactions a month. She said, "No, it's 10 transactions. I told her about the brochure saying 3, not 10 and of course she asked to see it. "Oh, no, this is wrong. Someone must have left the old ones."

So I walked over the the brochure display and took the handful of brochures, about 30 of them and handed them to her. "I guess someone forgot all these too. Now can you understand why people hate banks?"

So back to the account manager. Very nice, pretty routine. Opened an account. I told her as long as what they've told me remains true - no fees as long as I make 10 transactions a month, whether they are withdrawals, deposits, charges or whatever. Then she asked me about the brochure question I had. I briefly explained it to her and then walked out of her little cubicloffice and went to a different brochure stand and pulled out another 30 or so brochures and pointed out exactly what I meant and told her also "this is why people hate banks." This is plain old bait and switch false advertising. I don't believe it was a mistake at all, but their fees are less shitty than everyone elses, so what else can I do? She smiled meekly and I left.
*edit - I wasn't mean to her. I was just illustrating my frustration because we had just had a discussion about why I left Wells Fargo - for changing policy every 3 days or so, how frustrating it is to sign a contract that is completely one way. whatever

ps

To all my Florida friends who want me to come home, sorry, being a UNITED STATES citizen means you're part of something bigger than yourself. It means you're really an Arizonan. You can't move to another STATE in the UNITED STATES, because those people over in that state? They don't pay taxes to this state, and if I recall, Florida doesn't pay state taxes at all, so they're already socialists! I can't go home because I'm not going to be considered a resident of Florida, you know, another part of the United States? But thanks to things like State's Rights, and Insurance Companies and Free Capitalism, and oh yeah, greedy black holes of evil disguised as kindly old codgers in lab coats bound by an oath, a brotherly oath that says first "do no harm", unless that harm comes due to inaction. Because of course, the definition of the word "do" exempts them, since they didn't "do" anything and therefore their inaction is legal and not negligent like if you or I killed someone due to inaction. That would be negligent homicide. Florida won't cover another American because I didn't live in THEIR America. Because sometimes a State knows better what the people of the United States need more than the rest of the United States does. So even though our country is called the UNITED States, the only thing that's united is the fact that every state thinks they're the REAL United States.

So don't change states, otherwise you might end up in the WRONG United States where they lie about "taking care of their own" when the rest of the world says we're bad bad people. That is, unless "taking care of their own" has the same connotation as a Sicilian Mafia motto.

And may I say, PLEASE, oh please keep pushing for tort reform so those poor doctors should not have to worry about malpractice suits. Causing a cancer patient to wait an extra month for surgery because he's broke isn't malpractice anyway since there was no practicing to mal with. Even if you can feel the tumors getting larger and more painful every day. Nope, it's not malpractice at all to have all of my insurance information and still not realize that my insurance won't cover a hangnail operation, yet still offer the hope of full service and quick recovery when what you really meant was "Sorry, yer poor. Buh bye."

F U part 2

I've been told by Social Security that they don't take care of short term disability and have nothing to offer me. I would have to be considered 'disabled' for at least a year before they will. Either that or I need to be in end-stage renal failure - which doesn't sound like disability, it sounds like death. You know, that whole "End stage" thing.
Medicare or Medicaid, whichever, won't cover me unless I've been covered by SSDI for at least 6 months, which is impossible as I was only diagnosed this month.

Also, the dr's office just called me to tell me that the plastic surgeon does not accept AHCCCS and therefore won't be able to stick knives in my face anymore, so sorry.

So the moral is, exhaust every financial opportunity you have and then when you finally think the red tape is done, you've managed to save yourself, *poop* some new asshole shows up with another amazingly creative way to say "no cash? fuck you, go die"

So a doctor affiliated with a not-for-profit, faith based hospital refuses to treat people who are on AHCCCS. AHCCCS is for people who are unemployed or underemployed or under-insured. I'm not sure what the issue is, if AHCCCS doesn't pay 100% of his bills or something. Either way. I hope you get a serious illness while vacationing in Borneo or some remote place, and they refuse to operate on you because they don't take THAT kind of money and you have no Borneo dollars and you can't get Borneo state sponsored health care because you haven't been a resident of Borneo for a year. Maybe, I dunno, lose the use of your operating arm and your livelihood.

Or seagulls tear your eyeballs out.

So now, the three choices I was offered have been narrowed down to one choice. My God I'm proud to be an American, where we have the greatest health care system in the world. After Canada and Finland, and Australia, and Japan, and France, and Iceland, and the Netherlands, and Austria. I sure am glad we're better than say, Mexico or Haiti, because those guys put up a real fight, what with the free dysentery with every purchase and an uzi on every corner. I think they even stoop so low as to accept Travelers Checks for payment.

Crap story shittier: instead of repairing my arm after they take a giant chunk out to fill in the giant whole in my face, I'm now fortunate enough that I can have the as-is giant chunk whole in my chest added value package. Two horrific scars for the price of one.

I suppose I should still be happy. I still have a surgeon who will remove my cancer from my head, though I'm starting to feel like he's going to fill in the hole in my chest with, "Hey! Look at that! This chunk here? The one from his face? Wouldn't that just fit perfect in the hole I just made in his chest? NURSE! Close please. I'm off to Scottsdale! There's a charity ball in my honor! For godlike figures who save the lives of the rich and insured. I'm getting an award! :D"

Red Tape part 2

I was having a bad day earlier today, so I lay down in bed for a bit. Of course, 'a bit' turned into 4 hours. My dad woke me up when he called to see what I'd accomplished today. It being Monday and no answer from Access (even though they said yes, I won't believe it till I have my ID card and #), I got up and drove to the hospital to ask the DES office there if they could help me.

The first time I spoke to the women in this office, the lady who helped me was very nice and also very helpful. The women there today were pretty much the exact opposite.

I tried to explain to one woman that I had already applied and been accepted, but since that happened on Friday, I didn't have my ID number yet and was hoping they might be able to help me, as my doctor was waiting for the number in order to schedule my life-saving surgery. I explained that I was in this office once before and the woman was very helpful and I was hoping they could help me again, as going to the Guadalupe office meant two hours in line just to ask a question. She looked at me like I was a dumb child so I tried to explain it again and got a similar response. She said she would have her supervisor, who was sitting 2 feet away and heard everything I had said.

Being only 2 feet away, I heard everything she said as well: "There's a guy here who is asking for help because he doesn't want to stand in line at the office."

f

So the "supervisor" walks the 16 inches over and asks me what I want....
I explained again, this time trying to be clearer than before since the two of them already have a pre-conceived notion of what I want regardless of the actual words I use. I explain that I was in this office earlier last week and a nice young lady was able to call up my account and tell me where it stands and what I need to do from this point on and I was hoping she would be able to help me as well. This person said that she wasn't from AHCCCS, even though the sign on both doors and the building entrance door said DES/AHCCCS, She said that this office was just DES and I said I was at DES to apply. She said that health insurance is AHCCCS, not DES and that the signs on the door were wrong, this was only DES.

Trying very hard to be polite, since this ...person...most likely holds my balls in her hand, I asked her why the other woman was able to help me. She didn't know why that was, but that I had to go to AHCCCS to get my ID #. She said I should call this number (which she wrote and handed to me) and ask them to give me my AHCCCS number. Feeling once again like I was getting the runaround, I asked again, "How is it that the other lady was able to call up my files from here and help me". She gave a bored shrug and said that I needed to call that number. Feeling again like I was falling for the same crap and leaving without answers again.

As I'm leaving her office, which is really a closet with 3 cubicles in it, I see a sign that says "Patient Advisory" (or similar), "Rescue for the uninsured"... The last time we were here we asked the information desk if there was a department we could talk to about financial issues, as in, we have no money or insurance, and they looked at us like she had never heard of such a thing, much less been asked a similar question before. I really can't imagine, with the amount of times I've been treated like a social outcast for not having decent insurance, I really can't imagine that no patient has been in the same situation as me.

So I go in the lobby and call the number. After being on hold for almost 20 minutes, a man, Ken, answers the phone and is very polite and gives me my AHCCCS ID # and ends the stupidity that is DES and mostly useless government employees. Ken repeats the number to make sure I have it and directs me to the AHCCCS website. I thank him profusely while mentally giving the finger to the door of the DES/AHCCCS office that's not a AHCCCS office, despite the signs on both doors and the building signage and the lobby directory. Again, the feeling is one of, "cripes, I'll lie to this guy to get him out of here, its almost closing time and I'm tired of answering boring questions related to my job. Now where are those Oreos? "

So I call Dr Rothman's scheduler, Sarah, since she's been waiting to schedule my life-saving surgery until I procure alternate means of payment. Did I mention the surgery that is on hold because of red tape and money is necessary to save my life? That without it I have about 6 months to a year to live? Because I did mention it to miss Saggy Everything. I think the Oreos were calling out for her because she didn't seem to register my desperation. Sometimes tears and desperation don't work. Maybe if I cried tears made of Skittles.

But I digress. Sarah, the scheduler who's become the life/death gatekeeper for Dr. Idontgetintothe Financialsideofthings, didn't answer the phone. I left a message with my AHCCCS ID #. Hopefully doing it over the phone doesn't somehow disqualify me.

....

On a much more pleasant note, I got home to find out my basic cable was disconnected. No, that's not the good news. I wasn't able to pay the whole bill, as I'm kinda broke, but I wanted to check and see how much I owed and how much was in my bank account. Imagine my shock to find over $5000.00 in my checking!
Apparently my ex-wife and living beer-based wax sculpture, Donna Gorodnick actually paid her back child support. So like a good denizen of the interwebs I posted it to my Facebook and realized, from a friend's comment, that they must have taken the cash out of her tax return. I can't imagine that Donna did it out of a sense of responsibility or a sweet, motherly act of kindness or even out of guilt for how she treated our daughter, because none of those things exist in the vacuum that is her soul and skull. No, it must have been her taxes, and I can't help being tickled bloody purple at the idea that it had to have come from her scumbag husband's taxes, hopefully ruining whatever plans they had for that much money. Probably to pay for that cruise they just took. Cue Nelson.

of course the guy who stole stuff from us when he took advantage of a kid, talked his way out of it

p.s.

Regarding the initial denial and subsequent approval, based on my income:
I don't care how much money I make, the costs of cancer surgery and treatment are impossible to pay for no matter how much my income is. One recent post from a FB friend with cancer stated that her Chemo treatments for her melanoma were 30K a pop.

The screaming catch-22 is that I couldn't get approved based on the potential costs because I would have no way of showing how much the costs would be without first being approved and getting a bill. Without getting approved, I would never receive a bill and therefore would never have proof to show that I can't afford the upcoming medical costs.

My head hurts.

Winter is Here

I got my answers to my applications for Food Stamps and State Health Insurance in the mail today.

I got turned down for health insurance based on my GROSS monthly income, which the mouth-breather entered incorrectly and supposedly why I got denied.

I got accepted for the Food Stamp program based on my NET monthly income. Not sure why one is taken from the gross and the other from the net, I can only imagine it's so that it's possible to turn people down for insurance more easily, since the costs are clearly larger than food costs.

Regardless, as I said in my previous post, I was approved today and these denials are invalid now. What adds to the whole wtf day I've had, the approval letter is almost more ridiculous than the denial.

Yep, according to the letter I am eligible for $16.00 a month in food stamps.

"Winter is coming! Here's a chunk of ice to suck on to get you through."

F U

Been trying to reach my Access person for 2 days. Still worried that I'm going to get denied because the lazy hole who took my information and shooed me out the door didn't take all the info the letter I received had requested. Left 3 messages, called every 10 minutes or so and never once got to a real person.

Dr. Rothman's scheduler, Sarah, called me this morning to ask me if I had any other insurance. I told her no, but I've applied for DES. She said to call her when I find out if I have Access.

Yes, my doctor's assistant in charge of scheduling my very important life-saving surgery didn't schedule my life-saving surgery because I don't have insurance.

So after calling DES all day with no luck, I grabbed all the info they had asked for but didn't take and drove all the way down there again.

And was told I was denied because I make too much money.

I made $100.00 last week. According to my paychecks, I make about $900.00 a month. My rent is $1000.00. This doesn't even count electric, gas, utilities, car payments. And still I make too much.

So I asked how it was possible since I only made around $300 a month. She said I had a right to a "fair hearing". I asked her "When?! Because I need to have life-saving major surgery in 2 weeks! So when am I going to get this fair hearing? After it's too late and I'm home writing my will?"

Apparently I've been wrong all my damn life, and yelling and crying ARE what you have to do to get people to give a damn, because the lady in the next booth said she'd give me my "fair hearing" this afternoon if I would just wait for her to call me.

I waited about a half hour till I was called. She told me again that I was denied because I made too much. That the cut off for GROSS pay is $907.00 a month. Which means they've set the poverty level at $10,800 a year. I dunno, I think I could survive on $209.00 a week. How about you?!

So she takes a look at my pay stubs and, imagine that, the lazy waste of skin who took my info and denied me put my info in wrong. Even still, I only cleared the poverty level by $30.00

So yeah, $30 made the difference between me getting help and me driving my car through their window and... and they wonder why people lose their shit and kill themselves and everyone else around them. Now I understand that guy who showed up at that Florida school board with a gun. No, I have no intention of causing anyone harm, including myself, but I understand it better now.

So in case I wasn't clear - I got approved. But only because I cried and freaked out and wouldn't let them send me away without answering my questions.

...............

On another Fd up note and adding to my feeling like I need to really hurt someone: Kevin put a box of his kid's toys on Craig's List. $100.00 for a huge box of action figures. Kevin had to leave and I was already on my way to DES so he left it to his 16 year old son to finish the deal.

Turns out the scumbag gave his son $45.00 and took a second box of toys nearby as well. So Kevin calls him and he says he has to talk to his wife and he'll call back. No call so far. So yeah, I'm not a violent person at all, but I seriously want to take a metal pipe to this guy's kneecaps.

...

The Doctor's office called me to ask if I had any other insurance.

Random

A long time ago, I read a story about how an Apatosaurus, what we used to call Brontosaurus, had too long a neck for its heart to pump enough blood to its brain. The animal couldn't exist, yet there it was. Later I'd heard a narrator state that after a certain period, no animals larger than our modern elephant existed. Anything larger than an African Elephant had died off.

There's a layer of soot colored earth under the ground, sometimes exposed. Over the entire earth. That's the main evidence for the comet/meteor theory. This crater or that crater is the other.

My theory: Not one, but thousands, maybe millions of meteors hit the earth. But not single or even multiple catastrophic meteor like Shoemaker-Levy 9, the series of objects that hit Jupiter. I theorize that it was a shower of meteors that mostly burned out in the sky, raining iridium-laden ash and rock, smoking to the Earth. A meteor shower, rather than a bombardment, over a long period of time, maybe centuries. Perhaps a large impact or two to explain the craters. Enough to explain the vegetation dieing off. Enough to explain why there's this layer over the entire Earth. And also to explain why animals over a certain size died, but not because life got harder or size made them more tempting prey for desperate predators.

All those micro-meteors raining down added mass to the planet. They laid down a roughly 2 to 3 inch layer over the entire planet. I don't know the math at all, but I would imagine that that much mass added would increase the gravitational pull of the planet itself. This was all new material, not the same finite matter spewed up form volcanoes, as one theory posits. I think those animals were just too big to live after the added mass. Maybe they didn't die because of it, maybe they adapted and evolved because of it, but I can't see animals that size surviving now, even in a zoo. Their mass would kill them. Reverse that thinking and ask what would have to change to imagine the same creature living 65 million years ago.

Rawr

Long day today. My own fault I suppose. I went to work without taking my meds with me. Mistake. I had been feeling particularly bad in the mornings. I figured either the meds were wearing off in the night - which is logical, or something about sleeping (tossing and turning or stretching or being dehydrated) was making my throat more sore than usual. Last night I woke up at 4am or so to take a pill and still had pain when I woke up, which kinda reinforced my theory.

Nope. It's because the meds wear off in the night. I went without taking meds while I was working and by the time I got home it felt like someone had a dagger in my neck and was dragging it up to cut my ear off. Nothing like a pickaxe in your head to put you in a bad mood.

Red Tape

I got the last piece of info that the Department of Economic Security had requested to finish my application for AHCCCS, or Access. Basically state paid health insurance. Shades of my divorce. I had gathered about 12 folders worth of identification, bills, housing information, letters from churches, a lock of hair and chauffeured it all across town to sit in a crowded room filled with crying babies and dirty kids running, screaming through the room for two hours, on the same day they've installed a new computer system and intake procedure and the lady assigned to help at the door is here from Washington state and speaks no spanish and can really do nothing more than show you where the line is, for the lady to finally call me over and ask for my ID, a power bill, a paycheck stub and my medical bills and go into another room for an hour and come back and tell me to go home and wait

Long Story

The doctor actually called Monday afternoon, earlier than his assistant had said he would. Not sure if that's a good thing or if it's an indicator of how serious things are. Not that I need a reminder of just how serious. Regardless, the news was as expected: Squamous Cell Carcinoma. He recommended that I come in to discuss it with him in person.
After some minor issues with the office and scheduling (the doc had said I could come in today to talk with him, but the office kept trying to tell me he doesn't do 'same-day' scheduling), my parents and I headed to his office at around 2pm.

Even though we didn't have a legit appt, we didn't have to wait long to see him. He explained that I had a tumor in my tonsil, which wasn't news, but that it had spread to involve the lymph node that was swollen - swollen not as an indicator of the nearby cancer, but because it was cancerous as well. He went on to talk about what are basically my 3 options: Radiation and chemo and if necessary, surgery. His opinion was that often rad and chemo don't do the job alone and I would likely have to have surgery anyway, and that going at it with only rad and chemo meant much more intense versions of that treatment, which could likely result in a lot of damage to my throat, possibly to the extent that I'd need a permanent feeding tube.

On the other hand, surgery first would reduce the need for such intense therapies and is more likely to do what's necessary without severe physical scarring. Surgery comprised the other two options. Basically the same operation, but with two differing options as to rebuilding my neck and jaw. The first surgical option involved removing tissue and muscle from my chest to replace the muscle and tissue removed during the operation, and the second option called for using tissue and muscle from my left arm. The chest option could be performed solely by Dr. Rothman, but the arm option called for a cosmetic surgeon who would repair my arm, presumably because it's more visible than my chest I guess.

He explained that the surgery would involve a 'radical dissection' of my neck, my jaw would be taken apart, basically, to get at the tumor in the tonsil area. This tumor presents as firm and 'fixed', as opposed to a looser tumor which would feel more like a ball under the skin that can be moved around. The loose version of the tumor might have been operable through my mouth using robotic tools. Mine is fixed and fibrous and can't be removed that way.

Either option means major surgery and I would likely be recovering in the hospital for 7-8 days. A milder course of radiation and chemo would follow about 5 weeks later. I could potentially have these treatments done anywhere I like, not necessarily here in Phoenix. My mom and dad would certainly prefer that I return to Florida for these for obvious reasons. I could live with them and as they are retired, they could be full-time caregivers during the treatments. I still have a lot of mixed feelings about going back to Florida, but I know that it would be easier for everyone involved, me included. I know I have a lot of friends in Florida who will be happy to know I'm coming "home".

*edit* The doctor gave me a 75% chance of being 'cured'

.........

After leaving the Dr's office, we tried to find out if the hospital had some sort of patient advocate service to help with the financial problems that I'm sure a lot of patients experience. It was a little disheartening that the information desk people looked at us like we had sprouted horns. They made a half dozen calls before giving up. They directed us to the ACCCHS and DES offices. Access and Dept of Economic Security. I had already started the application process for these two branches and upon speaking to the woman in the office we were able to confirm that my application was in the system and I just had to finish gathering the requested information to complete it. Once done, as long as I'm not making enough money, there should be no reason why I wouldn't get Access, which is basically state-paid health insurance. She explained that I might have some co-pays, but that I wouldn't have to pay a "percentage" of any costs like in a traditional insurance scenario. I asked her if the fact that I did have some limited insurance already would influence or alter my chances of getting Access or how much I get and she said no, one would just be secondary to the other. She also explained that the application was put in on April 1st (go me!) and that I should get reimbursed for any expenses paid since then. My mom would get her $1000 back!

Obviously this was a HUGE load of my mind.

I have no major issues with having surgery, beyond being scared shitless of the surgery itself and moreso; the recovery in the hospital. The idea that radiation and chemotherapy treatments will be less intense after the surgery help relieve some of my fears, or at least the intensity of said fear. My larger concern, beyond mortality, is the possibility of a long-term or even permanent feeding tube. I don't have huge issues with disfigurement or scarring (much), I just fear losing one of my few remaining pleasures in life - food.

Oh well, baby steps. Dr. Rothman is going to consult with a cosmetic surgeon he works with and get back with me in a couple of days. Surgery is expected to be within 3 weeks.

It's Official

Squamous Cell Carcinoma. Basically skin cancer in my tonsil. Going to meet with the doctor today to discuss options.

Biopsy

Summary:
Hospital was fine, no issues with the biopsy. The tumor is in my tonsil and spread to my neck. Surgery, and soon, is recommended, but the exact type and stage won't be known till Tuesday or Wednesday. Throat is a little sore but not worse than any other I've had before.

Full deal:
Got to the hospital with plenty of time. Good thing because the map they gave us was completely useless. We ended up going in a completely different entrance than indicated, which was in fact, where we needed to be.

Registration; Checked in. Second question is 'do I have $980.00'. Answer: no.
"Okay, let me call my supervisor because you need to pay before the procedure. Did anyone call you from the hospital? It says someone called on the 12th and you said you could pay."

"No, she told me how much it was and I said I don't have $980.00 or something to that effect and I asked what would happen if I didn't and I was told I had to pay it. No other option was offered. Every one of my counselors, friends who've been through this, support groups, even my own doctor said not to worry about it so I thought something could be worked out at the hospital." I said.

"I'm going to have to call the doctor and find out if he considers it "emergent"", which I gather means 'is it an emergency situation', not 'is it emerging', lol.

So he calls the doctor right then and with me and both parents listening. He hangs up and says, "Dr. Rothman says it's not emergent so we will need to reschedule." In my mind, every curse word I could think of was spewed down that phone line right into his brain. Not gonna say what I was thinking about said toxic brainwaves...

So of course, my mom, being a mom, and being present there hearing this, goes immediately to get her credit card and all my emotions and thoughts follow immediately into a black hole. I feel like I felt when Bob's brother hugged me. I feel like it would have been better if they weren't even here now. My parents are retired. I know they would give me their last penny to fix this and that makes me feel worse than hearing "you have cancer". And of course, everyone says not to worry about it. I am. I do. But I'm also more worried about everything from this point on. I know surgery is going to cost upwards of $40,000 and that's being conservative. Delicate neck surgery? No idea.

Anyway, once the credit card is swiped and our futures destroyed, they're more than happy to immediately send me upstairs to get naked in the freezing-ass pre-op area. We meet the doctor, who offers some bullshit about how he knows this isn't how anyone wants their day in the hospital to start and how he doesn't get involved in the financial side of things. Of course, we're all thinking to ourselves he's full of shit since it was his decision that my f*&%#$@! tumor closing up my airway, threatening to spread to my chest or brain, is not "emergent" and ONLY that which would have sent me home to basically die.

He goes away. The rest stay and set up the IV and ask me the same seven questions 2 people on the phone and 4 people in the hospital already asked me. "no, I'm not allergic to anything." "No, I don't drink." etc.. But everyone is very nice and the woman with the needle is adequate (it's all psychological anyway, I know). They wheel me back and somehow on the way I'm done and back in the room already.

My mom and dad come into recovery and tel me what the dr told them - that I have a tumor on my tonsil and it has spread to my neck (it's bad if it goes near or below the collarbone [close to heart, lungs, etc.] or the base of my skull), and that we will to decide but he recommends surgery, and soon. How is any of this not "emergent"?

The nurse comes back to see how I'm doing and tell me the IV will come out soon. She gives us some paperwork and there's a paper about the prescriptions for pain meds and how they affect you, side effects, blah blah, except there's no prescriptions written down. No pain meds, no xanax like I asked, like he told me he'd give me last visit and didn't, like his office told me he would prescribe "at the hospital". And of course, no doctor around. "He never comes to recovery". The nurse is very nice and she actually asks me what pharmacy I use and calls the doctor's office to have them call it in. Cool.

No. Not cool.
1:30pm
*cut to pharmacy*
*enter drunk looking and sounding pharmacist* "No, no scrips phoned in. Let me check the email. No, nothing here."

Phone calls to dr yields endless automated phone systems and voicemails but no live people. Phone calls to other Basha's lead nowhere. We figure maybe the doctor's office closes at noon for lunch so we go home. I try to call again at 2:15 with the same results so we pile in the car and drive the 20 minutes to the dr's office. The blonde with the dead expression and no answers is not there, but the other woman there is very helpful and asks Marsha, the dr's PA, about it and she says she called it in while I was in the hospital. I ask for the phone number she called to make sure we're going to go to the right place this time and she provides it.

I figured I had better call to make sure they do have it and where exactly I'm going and the drunk sounding pharmacist answers and says it is there, and asks if I was the person who was in earlier. I said yes, but it wasn't there. She says, "no, it wasn't but it is now. It got called in at around 3:00pm".

Which is it? Did it get called in while I was at the hospital at 12:30 or so or did it get called in at 3:00pm, 10 minutes before we arrived at the dr's office? Sooooooo, a small but extremely infuriating and annoying AND money-wasting excursion because one of these two is either dumb or lying and I am leaning heavily towards the woman at Basha's pharmacy.

Oh, and no damn Xanax.

Blood work

Got my blood work, EKG and chest x-rays done today, no problems. All set for tomorrow. Results won't be in till late Tuesday most likely. I hate waiting. This is the worst one too because this is the one that will tell me what stage and if there are more to worry about, and basically what all of my future options will be.

On a more positive note, the kid and the 'rents got in today no problem and I got to eat sushi. How I love you, Tuna Tataki.

Blood work postponed

Till tomorrow. 1:45pm.
Parents and Kaia get in at 10:30am.

I have the best friends

I should have put this up earlier, if only to tell everyone just how awesome Colleen and Christian are. They're using their business, copicmarkerscrapbooking.com to run a fundraiser for me:

http://copicmarkerscrapbooking.wordpress.com/2011/04/10/we-love-guy-gondron-fundraiser/

Even if you can't help out now, go check out their site. They has some great tutorials, clipart and of course, Copic markers.

Allo

This is my lymph node. It's a bad lymph node and must be punished.
If I could figure out a way to get a pic inside my mouth I could show y'all the actual tumor. No? Aww, but learning is fun!

Calmer now lol

A little exercise, some completely awesome friends and I feel a little better. Kevin keeps insisting that Access will pick up the loose ends. Hope so. I'm just worried money issues will delay my treatment.

Welp, I'm screwed

Just found out how much my insurance really sucks.

Cigna/Starbridge pays $1250.00 a year. My obligation, after the $100.00 deductible, is 20%.

The deductible will be burned up getting my blood work - $129.00

20% of the bill just for the biopsy is $980.00

Even if I wasn't 2 steps from homelessness that would be too much.

I don't do math anymore, but even I can tell that my $1250 is all gone. Can't even begin to imagine how I'm going to make it

off-topic. sorta

When it became apparent that I would not be able to keep working through my treatment and even if I could, the costs would be high since my insurance says they'll only pay $1250.00 per year (which won't even cover one treatment, much less an operation), and I don't want to destroy my parent's retirement, I finally decided to go after my ex-wife for the child support she never paid. Yeah, even though she petitioned to get it reduced to a paltry $100.00 a month, she hasn't done that in 3 years. Sure, it was payroll deduction, but she learned long ago that all she has to do is quit or transfer and then not re-up with the Disbursement department. Long story short, she owes me a lot of money

Sooo, I called the Clerk of the Court and filed to have her driver's license suspended and her tags revoked. She has 5 days to either pay in full, work out an agreement with me (which isn't going to happen), or contest it in court.

Needless to say, when she got the letter she wasn't happy and called me to tell me so. I really never want to speak to her again so I let voicemail get it.

Appaaaaaaaaarently she only makes $200.00 a month at her security guard job and "can't afford $200.00" a month child support payments (must have been too long since she paid, as they were only $100 a month) and her poor husband is disabled due to a back injury and they are barely making ends meet *tear*

A quick trip to her husband's Facebook reveals that not only is poor Mark not disabled, but had been working in Dallas, still with American Airlines, where he had an apartment of his own to compliment the huge house with the pool they own in Orlando. And apparently boating excursions to go shrimping and concerts and tours of the Cowboys stadium (complete with pictures. Hey, there's Donna in Dallas!) are all free now.

So no, there will be no agreements on "payments", and no, I don't believe anything you say and yes, I will push hard to put a lien on your house and everything else you own since you seem to feel your precious home and your pretty truck and trips across the country are more important than your daughter's well-being.

errr

Scheduled my blood work at the hospital. Since I have Cigna, I can't get it all done in one place...

The EKG is in one department, the blood work is down the hall, which is not too bad, but the chest x-ray has to be done somewhere else altogether.

I'm glad I can still get it done, but it's just screwed up. The one department could have done it all. Also can't help thinking about all the x-rays and scans I've gotten recently. I know I'll be getting plenty more, but it feels like a step backward each time.

Appt is on Wednesday, the 13th at 1:45

April 10

Throat hurts a lot today. The roof of my mouth near the tonsil is more swollen and purple than it was. Tylenol isn't really helping.

April 8

Had meeting with the doc. Nothing much to report. I have to switch to Tylenol. I can't have shots or anything in my left arm, as he's going to need it to make a skin graft. For what I don't know yet. I have to schedule blood work and an EKG at the hospital. Doc won't talk about the cancer until the biopsy. Kinda frustrating.

Spent the evening in the gayest gay bar in Phoenix, for Jen's birthday.

At least I don't own an AK

Wednesday April 6

Today was a bad day. It started out ok. Kevin and I went over a buddy's house to hang out and his brother was there. I'd met him only once before but he seemed pretty cool. Kevin was joking with him about how he had "seent" cancer. He didn't get it because he didn't know yet, so Kevin grabs my chin and says "Right in here. I seent it on his tonsil!" The brother says, "that's not cancer" like it's a joke and I had to tell him what's going on.
I had told Kevin earlier that day that I could see a plaque on my tonsil and realized that it was probably why the doc knew it was cancer and was so certain where it was. Kevin wanted to see it so I showed him. He immediately felt weird having actually seen cancer.

Bob's brother was cool, asked questions about it, listened to my replies. Talked about people he knew who had it. All good. As I'm leaving, someone else had come over and people were kinda spread out through the kitchen and living room, and Bob's brother comes across the house and out the door to say bye to me. I was a bit surprised and completely munsonned the handshake and the next that then turned into the worst bro-hug I've ever given and then I had to leave.

I think I'd kept it pretty much together since the 1st, but for some reason I can't right now. I don't know why that triggered it. Because he wasn't a close friend but had done what my close friends don't because they know me? Because a near stranger showed more concern in that moment that anyone else here has? Kevin would give me bear-hugs all day if he thought it would help me. He has a very physical relationship with his son, wrestling with him and giving him dad-hugs and stuff. I'm just not like that. Or is it because I think he's scared for me? That's probably what did it to me. Whatever the reason, I didn't go to work. My manager was understanding.



6:31pm Let's see what my fortune says:

"A day of worry is more exhausting than a week of work"

Left out

I realized I didn't relate the small happening yesterday.

After not receiving a call from the scheduling dept on Monday, I called Tuesday morning. I called 5 times throughout the day and got the answering machine every time. Left two messages. While I was leaving the second message, right about 3:00, they called me.

I was a little bothered that the biopsy was scheduled for 10 days out, but she said the dr was ok with it, so...

Anyway: biopsy - Friday, April 15 and 9:30 in the am with surgery to begin at 11:30. General anesthesia. My dad is going to be flying in to go with me. My mom and Kaia want me to try to find out how soon after the biopsy might they go for the major surgery. Hopefully the doctor has some sort of answer for that so they can make plans for when to come up. If it's close to the biopsy they'll come for both.

I suspect the dr won't be able to say anything about it until after the biopsy though. I believe he'll remove my tonsil(s) during the biopsy and use an endoscope to look down in my throat to see if they can visually see any more problems.

Change of direction

Sometimes you really have no choice.

I am going to be changing the subject matter for my blog here. I'll still post my paintings and other art stuff, but most likely not as often.

On April 1st, just a few days ago, I was informally diagnosed with cancer. I don't know specifically what type or how far its progressed until a biopsy can be done next week.

All through December and January I had a bad cough. A remnant of a cold that soon became bronchitis. At the time, I had no insurance. I had let it lapse when my employer, Pizza Hut, sold this region to a group of investors. The new owners decided, even though they were the ones who chose to make an investment of that magnitude in the deepest financial crisis since the Great Depression, that they couldn't let sales slump or even stagnate - growth is the only 'must'. So they cut the driver's wages virtually in half. I was making minimum wage as a driver. The new paycut, for drivers only mind you, cut us down to server wages - $4.25 and hour. At the same time they cut our wages, they also cut my hours. I know a few drivers and it seemed almost across the board. My hours went from around 32 a week to about 16. So yeah, in half too. My paycheck had been about $400.00 every two weeks. Now it's $150.00. So I went from about $800.00 a month wages to $300.00. Anyway, this is why I let my insurance lapse. I simply couldn't afford it any longer. The church was already helping me with rent as it was.

But I digress. Eventually I couldn't deal with the cough anymore and went to the urgent care office near my work. I got some antibiotics and all was well. I also applied for the new BBH Inc. insurance. Right about the time I finished the course meds, I noticed that the gland on the side of my neck was swollen. I knew from years of doctor visits that they always check them and ask about them when complaining of throat ills. I also knew it probably wasn't a good thing.

I went back to the urgent care place and the doctor (always a different one) said he'd prescribe an antibiotic that targets that area, but if it doesn't go away, come back for an ultrasound.

It didn't go away. I admit I was pretty nervous at that point. I found myself Googling for info. Anyone who's done this would understand that this is probably not a good idea. I avoided the images section and just focused on information, which was less than encouraging. Every search I did for "lumps in neck" or "swollen lymph nodes" etc., came up as either Lymphoma or the node acting as a marker for another, unnoticed tumor somewhere else. Did I say I was nervous? Now I was almost panicking inside. My roommate's son had Non-Hodgkin's Lymphoma when he was a young child, and he's still here, in full remission. Didn't help my inner dialogue at all. I dragged my feet for a few days and then finally went back to the urgent care office.

It went a bit as I expected. I paid another $100.00 to be told I would have to pay another $250.00 for a CAT scan. I couldn't get my damn insurance cards to print online because apparently Cigna/Starbridge is too small a business to know how to build a working website.

The CT was quick and easy. Even the IV of iodized whatever, to make my blood show up, wasn't too bad, and I'm a pussy when it comes to needles. That's about the end of "quick and easy".

I was told the scans would be ready in about 2-3 days. After 3 days of waiting I called the office to find out that they've been dialing a 480 area code instead of my 407 cel area code for 3 days, and had left messages on some non-working message service.

I went back to urgent care and spoke with the office. The woman there gave me a sheet describing the scan results. I had a mass in my neck with several "low density areas that might indicate necrosis or abscess". I was encouraged by this, thinking an abscess, even one that was fairly problematic due to the location, would be much better than lymphoma. They gave me a list of referrals to ear, nose, throat docs, which I took as another encouraging sign. After all, why would they send me to an ENT if I had cancer. Wouldn't they refer me to an oncologist? This visit only cost me $15 since I finally got my ins cards in the mail.

I called the office on the list that was closest to my home. A Dr. Mostafavi. The woman on the other end was terse and a little rude, and when she asked if I had insurance (her second question after "name"), I fumbled with the name since it was new and I wasn't quite sure. In the time it took me to get my wallet and pull out the card to give her the correct name of this crappy little sub-prime insurance wannabe, she spit out something about not taking that insurance and hung up on me.

So I called the other office that was fairly close. A Dr. Janelle Engel. The woman who set the appointment was very nice and she took the information regarding my files and the CT and the urgent care place. Or at least I thought she did. The day before my appt, the office called me to tell me they postponed my appt because they couldn't get the files from my doctor and that he had to leave early that day anyway. Only I didn't get the call. I went to the office for my appt, not knowing it had been changed. After I was told why I was pretty shocked and more than a little angry. I explained again that I didn't have a family doctor, I was referred by the urgent care facility. She said they don't have the scans. I told her I would get them myself.

If they had tried to call me earlier I could have gotten the files for them and not have had to reschedule, but they called the day before my appt, as if they meant to reschedule all along and the file issue was just an excuse.

The next day I went to the urgent care place and asked for my files. After about 30 minutes they came out with my chest x-rays from my bronchitis. I asked about the CT and she said they don't ever get those. The imaging place has them. So I called the imaging place. Tomorrow. My appt wasn't for 3 more days so I picked up the CT files the next day.

I brought the disc to the ENT office and asked the woman at the desk if I could see another doctor earlier. In the few days I'd waited and been strung along, my tonsil had grown and was looking like it would close my airway soon and I told her so. She looked at me like a goldfish in a bowl. The other women in the office volunteered that I "wouldn't want another doctor for a neck dissection", that Dr. Rothman was the man, the best in his field in the Valley.

I left angry and dejected again. Oh well, 3 more days isn't terrible.

On April 1st, I met with Dr. Rothman. I felt like the women in the office were much nicer to me this day than the two earlier times, like either they knew they messed up or, now that I was a legitimate patient, they no longer looked at me like I was some homeless guy harshing their garden party cuz I asked for some change. They answered my questions almost too nicely. At this point I was so keyed up that even "too nice" was a good thing.

Although I was feeling a lot of stress and anxiety, I felt the chances that it was an abscess were good. After all, wouldn't it say something more ominous on the report? I've since learned that the word "mass" was the ominous note I missed. Dr Rothman was very friendly but there was a note of seriousness that I caught immediately. He prodded my tonsil with the tongue depressor as he looked in my throat. Asked if I had been coughing up any blood (no) or if I had earaches and a sore throat (yes to both). Headaches too. Nothing I hadn't been asked a hundred times before by a doctor.

I was feeling anxious but fairly confident it was not cancer until he said tumor. I don't remember feeling shocked or surprised when he said the word, I only remember asking. "Tumor? What? Benign? Not?"

He said, "I can't see how it's not cancer."

I don't think I'll ever forget that.

He told me he recognized it from just looking at the CT, didn't even really need to look in to confirm it. He said he wanted to do a thin needle biopsy. I knew these were no big deal but still told him of my problem with needles. He said that he was positive enough that I didn't have to go through that if I didn't want to. I said I'd rather not have the needle if it's not necessary. A more in-depth biopsy would be needed either way. He told me it would be under general anesthesia and I'd need someone to drive me.

After he had said tumor, he asked me how I came to be in his office. I explained briefly about the bronchitis and the appearance of the lump as well as how I came to be referred to him. He seemed puzzled about it and asked again in a different way. I told him about the first office being snippy and terse and how I had asked for Dr Janelle but was told I would be much better with him, as he was the best in the Valley in this sort of thing. He said that was what was odd. Not only was he a specialist, and one of only two doctors in Phoenix who do specialize in this, he specializes in exactly what I have: a tumor of the tonsil. I was worried he was trying to find out if I was legit or something, like I shouldn't be there or was pulling some scam because it was just too coincidental. I'm just glad I got lucky on at least that point.

We talked about the biopsy and he asked me if I had any questions. I'm sure I should have asked him about a hundred but I couldn't think of anything. All I could do was mumble something about at least knowing what it is now and shook his hand and walked out to the front desk in a bit of a haze.

I drove home, trying not to lose it. I would not be able to call my daughter or my parents until I was sure I could keep it under control. I knew it would be worse if I tried when I was this emotional. I got home and told my roommate. I avoided calling my parents for the time being. About an hour after I got home my dad called. He was having dinner at a restaurant with my mom and Kaia, my daughter. I knew once I told them, dinner was destroyed, but I couldn't 'not' tell them or they'd know something was wrong and their imaginations would make it worse.

I told my dad and he tried to give me some encouragement. I hung up knowing that he was going to have to tell them right then. I am not sure if I feel better or worse for not being there for them to hug and vice versa. The thought of telling them over the phone was bad enough, in person would be too much. It was almost too much just talking about it to Kaia.

Since then it's been daily updates for the family. I decided that I couldn't be my normal introverted depressive self and hide away. If I was going to make it I needed all the support I can get. I'm stubborn, but I know I can also fall into those dark places it's hard to get out of, and from the little I'd already read, that can severely impact my survivability. So I got on Facebook and on my Deviantart account and told everyone I knew there what had happened. I hadn't expected it to make as much difference to me as it already has, but there it is. I need people too. I've already joined several sites for information and support and have more info on the way in the mail.

The big issue right now going to be location and stage of the tumor as well as worrying about possible unknown tumors elsewhere. Everything I've read has been fairly disheartening and encouraging at the same time. Great stories of survival peppered with awful details of the side effects of treatment. Most of these everyone already knows - nausea, loss of hair, weakness. What I didn't know was that I'd most likely lose my sense of taste, either permanently or temporarily. Even if it does come back, it won't be the same. I'm a foodie at heart so that will be rough psychologically. I will likely lose my ability to produce saliva or at least only be able to produce limited amounts. It doesn't sound like much until you think about eating and sleeping. The products recommended to cope with this side effect are almost more worrisome than losing my spit! Sprays and gels, yuck. If a neck dissection needs to be done, which I'm fairly certain it will, I will have my lymph nodes removed (not sure if they just take the one side that's effected or both) and some neck muscle removed. The radiation treatments will burn my skin, outside and inside my mouth and throat.

I have to say at this point that this is where my own curiosity and conjecture might be getting ahead of things. I haven't even had my first biopsy yet. The problem is; all the searching and reading I've done seem to indicate that, barring a simple lymph node infection or an abscess, a lump in the neck indicates cancer. And there are basically two types of cancer that affect the head and neck and they're both similar. Head and Neck Squamous Cell Carcinoma. So I don't have confirmation yet that this is what I have, but the odds of it "not" being HNSCC are remote at best.

This post was long as heck, mostly because I waited to start it and because I wanted to write everything down. I learned from my journals during my divorce that not only is it a good record to have, it helps organize your thoughts, think of things in new directions and is just good therapy. Parsing the experience down to basics. One day at a time. Baby steps.