Vacation, Cancer, Insanity

Like many working Americans, Scott has limited time to get away this summer. I am tied to a treatment schedule, too, or heck, I could take a Victorian tour. With this limited time, where did we go? Why the broiling, heavy, humid Midwest of course!

Having spent 97% of my life trying to escape where I'm from and what I am (thoroughly Midwestern), there must be some grim satisfaction going on in the afterlife between my parents who both told me incessantly that I'd someday be glad of both my identity and my birth locality. I'm big enough, and they are dead enough, that I can admit they were at least partially correct--I have no problems with my MW identity, and even some of the MW social conservatism that leaks out of me from time to time. 

We had big plans, and big holes to fill in our social agendas, each of which required that we be in Illinois and Indiana. I had yet to meet Scott's parents, I wanted to see his sister again, he had not met some of my sister's family as we couldn't make her funeral, he hadn't met my brother Jim (now the oldest and de facto head of family). And why not work in a night in Bloomington, the place I was living when we first met online ten years ago?

This all sounds harmless and fun, and functionally, it is (and was) except that one guy with cancer being driven around by another guy on an 80 hour work schedule all over the city of Chicago and its burbs, all over the state of Indiana, and all back to Chicago to catch a return flight is a act of insanity in 5 small days. But that's us. 

Day One. I wake with the pukes. Gross, dysfunctionality, totally unexpected and of course unwelcome. At first I suspected that new chemo was having revenge, that all the nice anti-nauseas they'd dripped into me during my six hour intro were leaching away, leaving me vulnerable. Interestingly, by experimentation, I've found differently. This has nothing to do with chemo and everything to do with how I expel the gunk from my throat. Lesson I have learned; DO NOT engage the stomach muscles. They have no idea what you're trying to do, and they are trained to do just a couple of things well. Pass the masticated stuff along, or expel what doesn't work. Given the lack of mastication to work upon, there's a natural reliance upon answer two. I now know...

This however screwed the pooch for eating before I got on the plane, and even during the flight--but the getting on the plane was really the piece of work. A doctor can get me on a plane with open containers of narcotics and there's virtually no problem whatsoever. I look relatively harmless, have no prison record, and they can open the drugs and test them. That part of the experience is fast and painless. 

On the way to Chicago, though, I carried on a couple of containers of Nutren, my food, which is sealed. Oh. My. God. No. I was shunted to the side, politely and thoroughly frisked, my hands were tested for explosives residue twice, my backpack was taken apart. Nothing of me that could be felt up was missed. Had I any residual desire for strange, the TSA agent could have gotten a surprise. 

It's not that they were unpleasant at all--in fact, they carefully explained everything to me, were truly nice (bordering on apologetic) and I certainly didn't feel victimized. i was just amused by the fact that this 130 pound when soaking wet and fully clothed man was truly undergoing the kind of screening I wish had been in place on September 10, 2001.

The flight was uncomfortable, but nothing against Virgin Air, which we took--nice plane, nice ride, just an antsy Mark--I settled Scott in with a Star Trek movie and Bose headphones and realized I had read everything I purchased for the flight on my Kindle app without downloading anything new. Serious planning flaw. Tired, but can't sleep, skinny butt sore but can't adjust much, 3 hours and 42 minutes of seat twerking in a fashion that the slutty Cyrus girl can only envy. 

Upon landing, we find that our first appointment was pushed up--Scott's parents were already having dinner at our hotel! I fantasized that I had an hour to not look like somebody had just pushed me out an elephant's vagina to no avail. 

This, however, turned out wonderfully well. Scott's mother had particularly decided that she would like me because I've already been through enough stuff this year and she proceeded to charm the pants off of me. I am now her fan. Previously, her fearsome reputation for laying it all on the line without gloss (a famous MW trait which I deeply admire) had convinced me she'd take one look and dismiss me as having six months, and not good ones, ahead. Fears completely allayed. 

Our conversation helped too because by the time my head hit the pillow there was no waking me for a solid 8 hours. Aside from the noisome bathroom and hocker breaks in sleep that I deal with, my story was a beautiful mattress in a Marriott Renaissance in Schaumburg Illinois filled with Indian people celebrating either a new Mercedes dealership or a wedding (a wedding, I kid). 

Day Two took us to Tammy's house, for a day of conversation with Tammy and Jerry, Gina and Jake, her boyfriend. It was wonderful, though I have to say that I still didn't feel good enough to have her homemade salted caramel ice cream, and that is a sore disappointment. Also, I find that long conversation using my Ipad "speak it" interface can be really difficult. Typing takes calories people!

Day Three took us to Warsaw Indiana to see my niece Kathy and her husband and kids, and my brother in law Dale, her father--a 3 hour drive, a full afternoon on a porch being catty, and then another hotel room. A side trip to Columbia City, my hometown, to see my brother Jim and give Scott the experience that I refused to allow him to miss--my brother, in his full essence, holding court and messing with me. I wouldn't let a simple thing like tongue cancer deprive him (or me) or that. Some people say I look like Jim. Some people say I act like Jim. All people say I swear like Jim--and that's what I like. Cancer much? I was so tired I could barely move! Time for more driving.

Day Four? Drive like a fool, Scott. From Warsaw to Bloomington, 3 1/2 hours of Indiana. Depending upon one's perspective, that could sound bad--it wasn't the most awful. There are now Starbucks everywhere and the two things that one can count upon to lift Mr. Nelson's spirits--snacks and Mochachinos--are pretty widely available. This is not the Indiana of old, when we offered nothing but McDonald's, Arby's and sweet corn stands. This is the highly sophisticated state that is legislating itself , it's women and gay citizens back into some sort of vulgar Stone Age. Respect!

Bloomington, in the throes of starting the first day of Fall Semester, was barely seen by me--I sent Scott out to Indian buffet with Charles and collapsed on the sofa of Charles' house. There I stayed (it was 90+ outside) until it was time to honor my two recently deceased dogs who had stayed behind with Charles in Bloomington--Hector, the chow, and Hildy, the lab mix. Hector, who died the day before his 15th birthday, was one of the most perfect dogs I've ever know--self-contained, vigilant, proud, but comitted to me and to Charles above all things. Hildy was the sidekick he never wanted, a foundling, with undefinable emotional issues who couldn't live without Charles and dug me well enough. She lasted to 14, about a month past Hector, but without him, her life wasn't quite the same. They joined eternity in a little ceremony Charles and I put together for their ashes, Hector's $2500 leg plate being the only physical evidence left. 

Five: oh five--back to Chicago. Four hours driving, get to O'Hare--and now, I'm somewhere over the Rockies typing on my Ipad while Scott re-reads some Sci-Fi he loves. I look at what we've just done and realize that I have no idea where my limits my, what I can do, what I shouldn't and what I can or can't--and frankly, that's all for the best. 

I've spent too much of my life wondering if the rules were being followed at the wrong time. Some times the rules just get in the way. Much as I'd like the TSA to acknowledge that I don't have the strength to cause any trouble, sealed food containers or no, and bend the rules, It's often enough--in Cancerville--not such a bad idea to bend them one's self. No intelligent person would have done half of what we just did--especially not while dragging me around like Howdy Doody with a broken jaw. There would have been mattresses on every sharp edge, and battening around every assumption and medical advice instead of laughter. 

It just wouldn't have been Midwestern, at all. It simply wouldn't have worked. 

Show me Where it Hurts

I have time, before the next chemo round begins, to obsess a bit upon myself. That's not exactly good.    I don't mean obsess in any kind of fabulous spa talk, spoil the self with rub downs or enrich the same with mud baths, hot springs or champagne mani/pedis. I mean plain 'ole overthink the situation and criss cross the cartoon with direness. 

Right now, my obsession is with pain, or more to the point, being without it. While there are several loci of pain on my body at the moment, the two most active, the Krakatoa and Vesuvius, are the right and left armpits. Admittedly, I can't only think of one other time when my armpit--and it was the right one--hurt--and that was a temporary reaction to some smelly anti-perspirant. Probably something ill advised, from the Eighties, when one was still occasionally tempted to have every body zone smell like a different designer. Pierre Cardin for the pits was not unthinkable. YSL crotch powder was a distinct possibility. Such innocence we had then.

Thus, the fact that they do hurt at first I explained away. On the left side, I have some tumors that have grown, and they are causing obvious problems--the skin is unhappy, they are sensitive, their subcutaneous antics are why this pain exists--and, too, there may still be some lymph nodes in that area (this is where some of the skin for my facial/neck reconstruction came from, and the muscle that they needed was harvested here from my left pectoralis). On the right, I thought it was obvious that the nodes had become inflamed from my general overall difficulties with drainage, overwhelmed perhaps with all they had to carry--that's why it felt like I was smuggling eggs under there. 

My own explanations are artful, logical and--to my mind--as close to simple and as evidentiary-based as I can make them. They are usually wrong, too. 

No, these lumps are cancerous, and were it possible for you to shove a hard-boiled egg under your skin in your pit, it would hurt. I don't know if these are really the size of a hard boiled egg but at least one of them feels like it is so I'll lean on that illustration. 

I am still confused/impressed with how modern medicine deals with pain. Virtually every one of my appointments the last six months have started with "are you in any pain now" and "how much pain are you in" if yes. I remember going to the doctor, again in the Eighties, and starting with the fact that I was in pain--offered as a fact, upfront--because I was. I recall vividly the ligaments I tore in my right knee in 1984 that were grudgingly offered Tylenol with codeine (and don't expect a refill). 

I have consistently not been in pain and even when it's been expected, I haven't been--my doctors have all remarked upon it and I've self-surveyed diligently to see if I'm masking anything and I don't believe I am or have been. I may have a higher tolerance, but I doubt it. I'm a total bitch if I stub my toe and a paper cut threatens to turn me into a goober addict. And, I'm not overly brave about it. I do ask if a particular shot is going to hurt (Procrit shots hurt, btw). 

So the pain mouse came out and the Mark lion jumped. And all I had to do was say the magic words  I'm in pain to get pain med 1.  And all I needed to do for pain med 2 was say that pain med 1 wasn't cutting it. And doubling pain med 2 was accomplished when I noted I was still in pain and pain med 3 was added. I didn't have to document or provide evidence or play act or point to areas on a doll. The 80's it isn't, and that's for certain.

Don't mistake my wonder for complaint--the part of the story that I like best is that my doctors believe me, because I do try to have a very transparent relationship with them. Better still, I do like not suffering, too. Do the pits and their other pain centers make me do so? Decidedly yes, to the point of not sleeping, to the point of nausea, to the point of diffuse concentration.

It has surprised me to be in this situation, and previously, to have not been, within what seems a short space of time. Obviously I'm lacking a good sense of how long something should take before it hurts, but I always believed it required a longer bake. Apparently, like Athena from Zeus' head, it can be sudden and--while artful--gruesome in the short run. 

The elephant that is sitting in the corner of this room is that the pain is here from cancer, and that cancer is causing it, and I have to fight it again so soon. The elephant is colored gray but he has some bright yellow nails....not quite into swinging mode, not quite out of the cowardice mood. The occasional drink from the "I'm dying" pond refreshes the poor chap's drama requirements, I guess, but we hope to bitter the water as quickly as possible. Besides, it's time for the Mark Lion to do a bit more work, much as male lions have been proven by observation to be remarkably lazy in the wild, self-indulgent, and probably as scared of large paw-piercing thorns as any of us. 

Cancer Redux (pour mois, et vous)

Just a briefie (which is a written selfie, I think) to tell you that I'll be opening and drapes and dusting in here a bit to bring you all the news of cancer 2.0. Yes, I'm going back to chemo.

I suspected this a few weeks back. I simply haven't felt right, but I feared that I was heavy-handed in my self-diagnosis--there are other problems to blame that upon. Anemia, to account for my lethargy; lethargy, to account for my insouciance; insouciance, to account for my snarly bitch barely-hidden hate fevers--and so it goes.

But nagging at the back of me was the idea that simply a few cancerous cells escaping into one of thousands of lymph nodules could perpetuate my problems--and that was enough to make me see the odds were never going to be in my favor. I'm blessed/cursed with a powerful and aggressive bit of cancer, too--one that isn't about to give up because our romance version of the life novel tells us it must. It needn't, and doesn't; never good about rules.

In Cancer Reboot, I'm going purely chemo at least until it's proven effective or in need of help. My experience with getting more radiation in 8 weeks than a short order cook gets in a career convinced me that at very least, I've no more body to give the god of  the fry it religion of Anti-Cancerism. I need to regrow or at least patch the holes left by the last burnt rubber rally.

This time, there's a three drug combo, that will involve erbitux and taxol and another whose name I cannot remember. My oncologist thinks it's possible that I'm one of a group of people who find resistance with Cisplatin and heavy radiation. While there's no way to identify us upfront, I do wish they could have. I'd have knit a skullcap with my false hope, which I will apparently need.

Yes, this time, the hair does go. Just in time for solar daze in San Francisco, after a summer that was often, and blessedly to me, overcast. I walked a block the other day in the direct sun without a hat just as a test. I felt like it was true death time on True Blood. My dream of a Hawaii vacation, or Scott's dream of taking me there may have met it's match. Better I might visit Iceland in December, when I can be a shopping maniac skipping through the snowbanks at noon and feel naught but cold.

I'll start this new regimen next week, but in advance of that, I've had to put myself on a pain patch with a supplementary elixir. My first go round was free of actual cancer pain--once they had removed my horribly infected tongue, there wasn't much that actually hurt. This time around, nodules have grown on my chest that ache, tumors have developed in my underarms that burn and arche, my arms hurt, my back is killing me. Sleeping more than 2 hours at a time has been a luxury mostly denied. Waking at 2 for pain medicine is no problem--I'm usually up.

This time, it's definitely going to be different. Thank goodness that I do like challenge and change. Not that any cancer asked....

Things I often think (but rarely admit)

If cancer has done me any favors, it may be the desire to live as I move forward more authentically, more true to the nagging voices I filter out of my mouth as my typically somewhat liberal attitudes get spewed outward, 

I say somewhat because I do have fault lines and notions that are not strictly in line with left of center thinking in 21st century America. I've long questioned why Israel, after capturing land in wars that were not (arguably or not) of its own choosing would have to give back land it won? Applied retroactively it seems the globe would politically look quite different than it does today.

I think welfare is a last resort, not a first--that there are far better solutions for poverty than defining one's deviance from a list of must-haves and then plugging the holes with government cheese. I sincerely doubt that there are many people who are content to receive X dollars and do nothing else, but there are some, and their egregious vulgarity isn't a reason to not have welfare, merely an argument against having it as option one. 

I woke early and sat up this morning between 1:30 and 3:30am, trying to find the best way to expel the phlegm that gets trapped in me with my bad drainage system, my perennially noisome sinuses, and my "princess and the pea" attitude to any sort of minor blockage to my deep, rhythmic breathing that marks the sleep cycle. I think that last part is a holdover from the ravages of childhood asthma, nights spent hunched over a steamer with bowls of Vicks Vapo-rub, wondering if my entire life would be a hell of not breathing and not sleeping. Not really and sometimes, as it turns out. 

I try to make cancer my problem, not Scott's, but that's difficult in a somewhat small apartment in a city famous for cheek to jowl living. Much as I try to shield my crusty Midwestern conservatisms from the far more liberal people I enjoy hanging out with--and it's true: I don't want to hang out with conservatives. I don't like them. They pursue people's weaknesses with a finger pointed outward and an "ah-hah!" on their Scarlet Letter lips. That's not who I want to be.

Nor do I want to spend my time defending my thoughts on topics that aren't really liberal or conservative, but simply how I logically conclude my pondering on particular topics.

If cancer taught me anything beyond a certain hunger for authenticity, it's also interiorized a lot of my communications, and my process of experience. I use to be, like a lot of people I know, ready with the snarky comment on the parade passing before or beside me. Always something to note, always the comment, always the grasping of the bon mot. This is not so easy without a tongue, it's virtually impossible when your face is swollen, and in the absence of a phone or Ipad, it's blissfully impossible to be constantly on one's guard to say the biting thing. 

It's rather a relief to not spend each moment competing for most clever motherfucker in the room, and the silence I'm finding is a higher quality commentary than anything I ever came up with on my own. I know that verbal functionality will return, at least to a level where parenthetical commentary is more possible, and I desperately hope to remember this important lesson.

Much of what I've been thinking about this morning was the silent march of thinking as I read an article in the NY Times today, written by someone about their youth in and the present state of Port Clinton, Ohio--one of several ravaged by change places throughout the Midwest. Detroit-ish, where a social order that wasn't so defined by economic class seemed to advance together more and where ostentation was less celebrated and less objectified. 

In discussing the downward mobility of people who chose blue collar work, who didn't pursue advanced education over the past 50 years, the article raises what are typical points to be made in such circumstances: There is less stability, less cohesion, and less wealth brought forward through generations in such families. 

All of those points are true--but never once in this article, or others I've read of places like Port Clinton, does anyone discuss what consumerism has done to nail poverty firmly to the cross of such lives.

In the days before the ubiquity of cellphones, I'll never forget the day I saw a woman in the parking lot of a Marsh Supermarket, pull out in a 25 year old junker car, cigarette dangling from mouth, exhaust pipe spewing the fumes of burning oil, and a late model Nokia held up to her ear, the mysterious grunts and the incredible noise she much have been sharing in that conversation.

In reading Port Clinton stories, I think of the number of times I've been in line in the same supermarkets behind people wearing clothes I can't afford who paid for their groceries with food stamps. The sunglasses I liked but couldn't buy at $259.00 looking jaunty as I thought they would on their heads.

I think of the fact that too many people who are poor still take cable packages that average $100-$150 a month, and wait in those grocery lines while pecking at smartphones whose data, text and voice packages are similarly priced--and that doesn't always include family plans 

There's an astounding amount of people in such situations who believer that healthcare is a right that need cost them nothing. I believe that everyone should have access to healthcare, but everyone should help pay for it, too. In the six months of my primary cancer treatment, I've laid out at least $6000, and my insurance has laid out way, way more--I was lucky to have that insurance. My sunglass food stamp and smartphone neighbors may be lucky to have Medicaid, but that shouldn't be the answer. 

Anything worth having, is worth paying for--freedom from cancer no less than 2 gbs of data on an Iphone per month. Why is it wrong to insist there is a necessity to pay for both things as one is able? Why, in assessing income, are we not asking for an accounting of how people spend their money? 

If you are able to watch HBO, you are able to pay a monthly premium, though likely the premium will knock HBO out of your life--you will get by. There are still libraries, there are still books, and if you cannot bring yourself to re-engage reading, there are now DVDs galore.

I know that a lot of judgment stews behind what I'm writing, and I own that--but there is a point where suspending one's judgement is like giving up one's soul. Too, judgment to me is the nexus between a viewpoint upon what's right and what's fit and conversely what's not, that should inform the way one lives. 

Easy for me--Scott makes a good living and I squeak by, and his butter hits my bread more often than not. Our lives, pretty thoroughly Middle Class, don't revolve around things. At worse, they are gadget heavy and data enriched to a silly point. Yet, those choices reflect just our dumb priorities--no one is buying our groceries, and his one pair of expensive sunglasses are for the running he does, which helps keep him out of the Inferno depths of the healthcare system. 

I feel for Port Clinton and the population that feels stuck there, much as I feel for myself and the way I'm trying to detach myself from the grip of an unseeable force trying to eat me live. But to tell the truth of Port Clinton, it takes a lot ore than just bemoaning the dearth of factory jobs that spread stability throughout a community. Like cancer, it take a discussion of education, self-sacrifice, choices, and how one decides to live within the means at hand or not. 

Occasionally,during chemo or radiation, I'd encounter another patient who smelled--no, reeked--of cigarette smoke--in fact, more than occasionally. In Port Clinton, how many Iphone 5 screens are glowing at night, in front of reruns of True Blood, in those double-wides?

The Return of PITA

Pain in the ass. Pain. That's how we start August.

Now, let's quickly dispel any concern about magnitude--this is freshmen stuff. Considering the various pains people experience, this is a paper cut. My complaint of it is more of that it's unusual than anything else--in fact from from 18 hour surgery through treatment, I've rarely had any pain medicine and have neither needed nor wanted it. That, I've considered the manner in which luck manifested upon my treatment where it seemed to fail in other ways. I was spared little of what kind of peculiar radiation can bring to one, and though precious little nausea came my way from chemo, a lot of weight loss settled on me and nothing fits after 50 pounds went missing. 

And this is about the chipmunk cheeks, which haven't gone away, down or moved south. They've settled on my face as though it would be natural to strap saddlebags there. Where else, the waist? so much more convenient to have things up! 

It isn't that lymphedema hurts, but it slams my cheeks into the teeth they haven't pulled (I have no lowers, they didn't fabricate those out of the bone they used to rebuild me--lazy, huh?), and it takes a fanciful area of the face, perhaps the only part that could look like ass and makes it look like fat ass. I'm aware of that, painfully. 

At night, as my cheek smashes into the pillow, my goldfish mouth pops open and a snail trail marks where I've been. I sleep on towels the same way a dog does when leakage is feared. I wake with a face stiffened but no less ballooned, and the lips of a dirty cartoon character.

One hospital here in the Bay Area runs a lymphedema rehab clinic, which I'm trying to schedule myself into...the doctors have told me that LE (we'll use that from now on) isn't uncommon--after you rip out the lymph system, there's often no logical place for all this fluid to go--but go it sometime must. Protein-rich and ripe for bacteria, it forms a reservoir of infection, a bacteria pool, and can even turn carcinogenic. And that's just what we need now, more damn cancer. 

LE is often associated with breast cancer, notable also for a large loss of local lymph systems, ripped out by compromise with cancer cells that find it an irresistible pathway to the elsewhere it's always looking to destroy. The new horizon upon which it can wreck its havoc. St. Mary's notes on its website that it uses compression garments and massage among its techniques--and I can see massage, but will I get a compression garment designed for this face? A training bra for the misplaced mounds? Frankly it wouldn't matter. At this point I'd wear a 16th Century poultice if I thought it would help.

At 3:36 this morning, I woke up because backed  up snot entered my sinuses and blocked my breathing--and all the new pressures on my face have made it harder to rid myself of this spew and harder to sleep and harder to want to leave the house. This adds up to nothing good. 

I've been using a tiny bit of morphine elixir that they gave me when i left the hospital to handle this discomfort--akin to deciding that an atomic weapon is the only response to rid one's campsite of mosquitoes. Yet, I have nothing else around that would do much having not needed pain medication and having not saved anything for those amorphous future days when it would needed. 

I have requested some from one of my doctors, but we'll see what they say--I suppose they'll be surprised. They start each visit with the famous "are you in pain" question and routinely, I'm not, often to their utter surprise, but not mine. I've come to depend upon the fact that physical discomfort was off limits to this cancer, my line in the sand. It's been allowed to open fistulas in my neck, turn my blood into colored water, screw with my taste buds, take away my ability to eat, but I did draw the line at pain. 

So just as a reminder, cancer--here's the line. Just cross it bitch and see what happens.