6-4-12 thru 7-22-12

[wilomn]

This post covers the last 6 weeks or so. I wanted to wait until I knew what was happening before I put it out there. I also gave considerable thought to putting it up at all. The writing is easy, mostly, but the sharing of it often runs against my grain. I keep sanding off those rough spots, but I keep finding more. I finally decided that this is a tale and tales need telling or they're just gossip and I really don't much care for gossip, being a man who prefers facts to conjecture in most things, hoping as I write that my readers, all twelve of them, think the same.

6-4-12

Last Tuesday I got a PET Scan. It’s a procedure where you’re injected with a radioactive possibly cancer causing agent that lights up in the Positron Imaging machine you get run from head to toe to see if anything ‘lights up.’ It’s routine for post cancer patients. If you’re in the clear, the scan is dull as dirt. Usually. Sometimes you get false positives. The scan is so sensitive that it occasionally tells the Docs that something is there that may not be. As a rule though, if it shows on the scan, it’s bad news.

Last Tuesday afternoon I got an email from my Doctor. This is unusual. In the past when I’ve had these or CT scans it has taken seven to ten days to get the results back to me. Now I like my Doc, but we’re not exactly drinking buddies and this call so soon after the scan sort of set my heart a beating at a slightly quicker than normal rate.

There were a couple of spots, two in my left armpit and one in my right, that were bright and shiny. So, Doc #1, the guy who handled my chemo and stemcell transplant last year tells me I need to contact Doc #2 to see about another scan because I never did have any cancer in my lymph nodes and they are what was ‘lighting up.’ Mantle Cell Lymphoma, the cancer I had, generally does show in the lymph glands. My presentation, in my lungs and the ocular obits of my eyes, was very atypical and he thought that maybe the little buggers got their targeting software updated and were now where they should have been to begin with.

I get Doc #2, who from now on will be referred to as my Insurance Doc, since he’s the guy I have to see in order for my insurance to allow me to see my cancer Doc, who will now be referred to Doc #1, on the phone. This is not as easy a feat as it sounds. Generally there is a day or three in between requesting to speak with him and actually having a conversation. I was put through to him the first time I called, no delays, no taking my number and telling me he’ll call back, just a “hold on please, he wants to talk to you.”

Nifty. Now Doc #2 is a nice guy from somewhere in India. His accent is not very thick but he still has a bit of sing-song tonality happening when he speaks English. He says to me, sounding much like the Squishy Master Apu of The Simpsons fame, ‘’ we need to do another marrow tap and talk about chemo.”

“So, the cancer is back then?” I ask him.

“Unfortunately, yes,” he answers.

However, Doc 1, whom I talked to after this wonderful conversation with Doc 2, says maybe not and it’s a bit premature to be thinking of either marrow taps or chemo. It may not be anything especially since I was not only sick the week before, but had been bitten by either a squad of angry spiders or one particular eight-legged adventurer who was very determined to set a record for the number of bites given to one person. I had gotten at least a dozen bites on my arms and a couple on each leg all in one evening and I never felt a single one when they were given. He was a sneaky bastard and I have since made it my mission to leave no spider unsquished in my home.

My last cancer free day may have come and gone or I may have lit up the scan just because I was sick and spider-bit. Tomorrow I go in to see Doc 2 at which time we either do or schedule a biopsy on one of the lymph glands in question.

It’s a weird place to be. Right now I don’t know if I’m dying again or functioning properly. Initially I was shocked, it hasn’t even been a year and one of the few things everyone seemed to pretty much agree on, seems it’s never 100%, was that I should be clear for a couple of years, maybe longer. Heh, I wonder if they were right. I wonder who ‘they’ are. I wonder if there are others like me. I wonder, if I knew there were others like me, if I’d seek them out. Probably not, though sometimes I wonder what it would be like to talk about things instead of writing and thinking as deeply and as thoroughly, continually, as I can. Got to be awfully close to someone for some of the talks I’ve had with myself and put to paper.

I get blood work done prior to every doctor’s appointment so they can see that day just what’s happening with my remission. Since I got out my blood tests have all been good. In fact, each has been better than the one before. From what I could tell from the results they sent me this afternoon, I’m still good, nothing out of the normal range. Unless, of course, they didn’t send me the results for all the tests they ran. Though I don’t think they’d do that on purpose, the chance of information mistakenly not sent is real. Unlikely, but real. There have been times when some test results have posted hours after initial results were sent to me. I have no idea why, nor do either of my Doctors, but sometimes a test or two simply lags behind its fellows, coming in a few hours to a day or two after the actual testing has been done. It’s just the way things seem to work and I have absolutely no control over it. That’s a whole bunch of not very fun at all.

Sometimes I feel like a top, wound up and spinning, not fiercely like a fighting top, not seeking combat or a proving ground, but bouncing around inside a walled off arena, colliding with other tops, the walls themselves and all the obstacles that either place themselves in my path or I manage to put there myself. My personal life, my kids, my work, my dreams and wants and needs. When I’m not dizzy I picture a grape sized silver pachinko ball plinking off the pins and tridents, slammed by the force of gravity, rocketed by the effort expended in an attempt at escape, shot to the top, unable to climb any further, then tumbling and spinning, colliding and careening, the dizzying fall finally ending when all the pegs and brass nails and ledges and bumpers have been passed, some with little bits of myself left behind, so violent were the collisions, into the queue, listening to those before me ratcheting into launch position, excited, fearful, ready to go again, ready for the spring powered rubber coated shaft to propel me again towards the sky, assuring me again that I will surely succeed, not even watching long enough for me to complete my launch before turning to the next in line, assuring, once again that success is imminent. The game is rigged though, you can’t get out alive.

Two Docs, one who says it’s back and one who says maybe not, but we need a sample. IF we do another go round with chemo and a bone marrow/stem cell transplant, it will be, if I have this correct, with marrow from a donor. Months of treatment, basically stopping my body’s ability to do any type of healing, while simultaneously killing those little bundles of malformed cells intent on killing me, then getting someone else’s clean marrow and having to be on anti-rejection drugs for the rest of my life, hoping my body doesn’t reject the transplant, which would end up killing me.



Just today, as an aside, and this has happened before, they discovered a treatment for Mantle Cell Lymphoma that vastly improves what I received last year. I could easily glom onto that ray of sunshine and use it as a balm to sooth the apprehensions that really must be addressed. Not obsessed over, hell, if I die I die, but the how and when and various methods of avoidance must be contemplated with a degree of seriousness that is not requisite if one’s future is not questionable. But glomming is such a messy way to live and I’ve got enough messes without creating more. Research is not stagnant. I’ve heard of half a dozen so-called break throughs in the last eighteen months. Now that I’m paying attention, and isn’t it odd how that works, I’m hearing a lot about cancer in general. I find it interesting that prior to actually having cancer I just didn’t hear that much about it, or, more likely and accurately, I just didn’t pay as much attention to it prior to having it as I do now that I’ve had it and gotten rid of it. In theory.

It’s funny, in a macabre sort of way. Promises made and rugs pulled out from under. Of course, no one really made any promises. I offered up the bargain to the Universe of doing my best to be me should I be allowed to go on, but that was about the extent of my appealing to whatever might be out there listening. I’ve kept up my end, but I’ve never even known if there was another end, much less one that anyone was attending; never counted on it, anyway. I’ve got plans and things I’d like to accomplish, but, and I sometimes really question this, I’m OK if they don’t come to be. Shouldn’t I be stressing over something I haven’t done or didn’t get to finish or? Isn’t that what others who may or may not have a time stamp on their tickets do? Sometimes I feel like I should be stressed out more. But, I’m not and I won’t be. I don’t think there is any right or wrong and this, when I’ve given it the small amount of thought that I have, is just the way it is.



I’ve had two biopsies done in the last couple of years. If the one I’m going to ask for tomorrow is typical, I probably won’t know if I do have cancer again, if I get the biopsy tomorrow, until Friday at the earliest and most like not until the first of next week. Do I plan a future? What do I do about work? Can treatment, should it be called for and I choose to undergo it again, be delayed until after Summer, my busiest time of year, or is this really serious? Serious enough that we need to do something now. I’m thinking that even after tomorrow I won’t know. I’m thinking Chemo really sucks and the transplant really sucks and I REALLY had an easy time last Summer. Compared to what some people go through, it was a day at the beach for me. I know though, that a second go with non-related stem cells is a far more dangerous beast that the one I danced with last Summer.

There’s one really big difference between using my own stem cells and someone else’s. With mine, there’s a 1% chance of death. With donor stem cells it’s closer to 35%. So I sit here, trying to think, trying to wrap my mind around the fact that sometime in the next week or so I’m going to get some fairly significant news. Maybe it’ll take two weeks or even three, but sometime in the near future I’ll either be told my life is still my own and to continue as is normal, or I’ll be given treatment choices that have a significant chance of ending my legendary run.
6-7-12
Went to see Doc 2, the insurance cancer Doc on Tues and he concurred with Doc 2, my main cancer Doc, that I needed a biopsy of at least one of the lymph nodes that were lighting up in my armpits. It seems that initially, when they did a marrow check, I was negative even though I had cancer in my lungs and ocular orbits. Marrow is not a reliable indicator for me so a biopsy it must be.

We decided that an ultrasound was in order to see if they could identify something they could biopsy; can’t just go poking around in people’s bodies without a particular target. He wants to schedule one in the next week or two. I ask if we can do it today (I really don’t want to wait any longer than necessary to find out what’s up) and we manage to get me in the radiology dept., where they do ultrasounds. The tech has never done anything like this, but she’s a pro and simply covers both armpits quite thoroughly a couple of times, telling me absolutely nothing of consequence. We finish about twenty minutes after we start and I’m home again a half hour after that.

Lo and behold, a couple hours later I get a call telling me they’ve scheduled a time for me to come get that biopsy since there was something big enough to aim for on the exam. Now, it could be muscle, it could be fat, it could be normal since I was sick and spider-bit, or it could be cancer. It’s probably not, I hope. It could be that remission has ended and serious life altering choices are once more about to be laid out before me.


6-30-12
I still don’t know what, if any future I have, to be rather melodramatic about it. I should have results from the biopsy by Tuesday. I might even get them Monday. Those results are pretty important. Sometimes I don’t realize how important. I go about my life as if I have no problems that can’t be overcome by a little sweat and some serious thinking. But, it may not be as simple as that. And that little but, that little thought, is just sort of always there.

Always there and in a way, no matter what the biopsy results, it will always be there, the message that waiting is over; that it has, indeed, as expected, come back. It’s one of the only ‘for sures’ I’ve heard. Of course the 2 days, 2 weeks or 20 years, we just don’t know when or if it will return, also makes for interesting dialogues with myself. It’s weird. I say to myself that it’s funny and I do laugh, but it’s not really funny at all and the laughing doesn’t have much to do with smiling. I’m seriously looking at either life threatening and life-long treatment with anti-rejection drugs if I do go through chemo and another bone marrow transplant and survive it or doing nothing and waiting to see what happens with the most probable outcome being my death in a few years. Maybe less.

I wonder sometimes if I have regrets and mostly I come to the conclusion that I don’t. There are things that I would like to have done or seen, but first, I don’t know that I won’t, and second, whether I ever do or not, I’m OK with that. And being OK with that brings to mind something important.

Right or wrong, right and wrong, is there either and if so, who decides? I can only …. what? What is it that only I can, that I can only? Only I can give this perspective on what my life is like, what it’s like to have this cancer and be me. Only I have lived the life I have, done and seen what I have, succeeded and failed. Only I can chronicle that. Only I can decide if what I’m doing is right or not, is wrong or not. Only I can, if only I can. Only I can find my story and tell it, if it’s my story at all. I’ve always felt that my role, often, while significant, was secondary, more of a trail marker or road sign for a lost traveler looking for a missed path or road mistakenly passed, something just out of sight, just beyond reach, than a tale in and of itself.

I have things to say, but the way I say them makes hearing them an experience unlike what we normally hear, in this instance, meaning write and read, except that I also think this may be spoken of between individuals, making the hearing aspect literal as well as figurative. This is important because thinking about these things, digesting them and looking at them more than once, is quite necessary. What I write has meaning, sometimes meaning of which I am completely unaware, but which without me would not exist at all. Sometimes I know exactly what meaning is being conveyed. Sometimes I hope my words lead to meanings that might not be seen by people who have not been where I have. This realization is difficult. If my words were not read by some, what then would be their stories? Good or bad, better or worse than if they had? How do I know if I’m sharing a gift or blowing steam? Is that even important? For whom do I write?

This is how I pass it on, so to speak, grow the grace, as it were. Fighting the pride, or more like resisting it, is a battle upon whose field I am constantly flung. I am often incredulous that it is my words that do this, my thoughts and observations leading to new avenues for those who read them simply by my putting to paper what I see and what I think of it. How is it that I can do this? It is no mock modesty to say that I am not…. I don’t know…. special, smarter than, gifted, better at letters, because I am not. Yet, when I write, sometimes, what comes out rises above to a level that, or in a manner seems, to hit people in a visceral, deep in the gut, sort of way. I don’t think casual would be a good word to describe it and that is also troubling to me. It makes me vain, prideful, hubric, things I do not wish to be, but there, in the letters I’ve strung together, evoking meaning and emotion significantly greater than the average person, (but from where do we draw the numbers that make average? High school posters on a reptile site? Is it really so hard to be a better writer than them when I’ve got over three decades more experience with words than they do? No) and yet others, whose opinions I do respect, have said the skill is there and I should put it to use. I agree and I cringe at one and the same time.

We are ever our own, or I am my own, worst enemy. I think about these things when I think that I don’t know how long I’ll be around to think about these things. Sometimes when I look deep inside myself, secretly hoping to find some great meaning or secret I can lay as the foundation for others to build on, thereby enabling them to find it too, I am disappointed. Often in fact. No secrets. No deep ponderances or gift of insight from a point of view that is not unique but is also not common. I suppose, in a way, it’s my struggle to find value both for myself and my writing which I only recently, less than a year ago, figured out was my art. I can’t draw worth a crap, but sometimes I can tell a damn good story, by drawing pictures with words. I’ve crafted that skill, honed it, worked it to make it better, for a long time without ever realizing that I was creating art as well as capturing words that if read from that proper perspective, told stories that were more than just sugar and water. It’s sort of incredible.



How personal do I make this? What AM I searching for? Am I trying to explain to you reading this, myself, both, why I write? Do I ask questions now, for those reading, that I’ve only ever asked in the privacy of my own mind? If I do, is that selling out and if it is, what’s being sold and to whom by who? Is it so …. bad, I suppose, to discuss such things not only outside my own very private mind, but on the internet with people I will never meet? People who may not only not ‘get’ it, but whose opinions, whether they ‘get’ it or not, are irrelevant to anything I do. Should I care what they think? And, if I don’t, why then am I doing this?

And that leads to the answer: For Me. Part of that is a desire to help by enabling people to help themselves, part is a desire to entertain, but the biggest part, the most important part, is to engage in my craft, my art, to tap into my inner self and bring out that which resides both in the dark and the light places inside me, to use words as the vessels bringing the seeds, that if planted and nurtured, will one day bear the fruits of insight and maybe wisdom, give ease to those in pain or enable those not currently suffering to give it those in need, but at the least will entertain and hopefully make for hearty conversation. To enjoy that act of creation that is the writing of every story, bit of prose, blog entry or poetic journey, to be the parent, the midwife, the reader, to have the warmth of creation and the further satisfaction of broadening perceptions that might not otherwise be occurring in those who have taken the time to read what I have been given to write.

And that’s not nothing.

7-22-12

About three weeks ago I get a call from Doc 1’s office saying I need to come in and talk with the Doc. I ask them if they can’t just give me the results over the phone and am informed that the Doc wants to see me. Great. Bad news? Good news? They know, have known, but until I shake my fat ass down there and pony up my co-pay, I’m, the guy who REALLY should know, the only one who doesn’t. Should I be planning for worst case scenarios again, looking forward to once more telling my children how proud I am of them and that no matter what I love them or smiling at kittens and small children, looking forward to the drum circle next Sunday at the beach and contemplating getting a new puppy, which, much as I might like to think I will, I most likely won’t because the plain and simple is, this is just a dry run for what is likely to come. Chances are that any pet I get now will outlive me whether or not the cancer is back.

Down the long tile floored corridor, up the elevator, past the cubicles where other people with other diseases sit and wait to find out whether they live forever or die soon, get to have children and grandchildren or not, my soft soled shoes making light squeaks with every step, wondering “is this the last time I walk down here with what little hair I’ve managed to grow back in the last year?”

A few minutes later I’m in the waiting area, trying my best to ignore the Springer show playing too loudly from the corner mounted TV that has no remote available to those of us who would prefer not to watch and listen to :cens0r::cens0r::cens0r::cens0r: while we contemplate whether or not we have futures, sitting in the relatively comfortable chair, watching the few fish, a silver dollar a tiger barb and an algae eater, who have managed to live in the tank sitting in the corner nearest the portal to the inner workings of this life giving, extending, ending behemoth of a home for all that Western Medicine has to offer. I’m lucky. Just as my eyes are about to roll up in my head (my IQ having been reduced past the point that I can think at all by the brilliant bimbos and their equally intelligent boyfriends/fathers of their children which can’t be proven until the paternity tests are back because she had sex with all of them but can’t remember which ones wore rubbers, if any of them did and she wants child support –about a minute and a half) the door opens and the nurse asks if Mr. Wesley would please follow him.

Off goes Mr. Wesley to be weighed and measured, his blood pressure and temperature fine and normal, his weight somewhat greater than his last visit, but acceptable nonetheless. Into the tiny exam room, there to sit on the paper strip protected bed that a healthy sneeze would rip to shreds, while waiting for news that is, after all is said and done, fairly significant.

The Fruit of my Loins, with whom I am quite close, have been surprised, as have I myself, that I am not some sort of nervous wreck what with the overall waiting and not knowing that’s been going on the last few weeks. Am I so dead emotionally that it doesn’t register or am I so at peace with what’s to come, whatever it is, that I actually AM at peace? As dumb as it sounds to ask, I did. Many, many, times. I’m pretty tough, my skull is nothing if not thick, my confidence is good and my spirit is pretty damn strong, but this, this is big. Life or death right here right now and I really haven’t suffered for the not knowing which it’s going to be. Hubris stalks me as I write. I resist, but I know it lurks.

Not too much time has passed since my shiny hiney tore the gossamer exam room bed cover, less than ten minutes, when in comes the Doc. I’m wondering will it be chemo and a transplant and if it is, will I do it again or will it be an all clear, the PET Scan is so sensitive that it really was nothing to worry about?

This time. Because, in the back of my mind is that tiny little voice that says, you’ll be here again, no matter what happens today, you’ll be here again. My off the cuff retort to that little voice, spoken only in my head, is to :cens0r::cens0r::cens0r::cens0r: off and die, quite literally. I prefer to live, as has been my preference throughout, which, maybe, is why I have not really spent any time worrying over what would happen when the moment in which I found myself in that office, tearing that oh-so-thin paper cover, had finally arrived.

“So, Mr. Pollock, I have some good news,” his lilting singsong voice tells me. “The scan is so sensitive that sometimes it shows something where nothing really is. You are still cancer free. We will need to check you again in 2 months. Do you have any questions?”

“Nope,” I answer. “Thanks for the good news,” I say. Then we shake hands and he tells me to make an appointment with his nurse on my way out and to have a nice day.

Anticlimactic in one way, but the ultimate climax in another. Yin and Yang, good and bad, light and dark, sweet and sour. But, in the end, good and gooder.

“For now,” says the little voice.

“:cens0r::cens0r::cens0r::cens0r: off and die,” says Mr. Wesley.

[JLC]

I've already said all I know to say...so just....

[DemmBalls]

Very happy to hear the good news!!! This forum needs to keep it's favorite curmudgeon around! i wish you all the best.

[wwmjkd]

I know it's intentional, but the name of your corner here is belied by the significance of the words you write. your readers have been a baker's dozen since I joined this site.

I'm glad you're still in the clear, and I hope it won't require another similar impetus to add the next entry here.

all the best.

[Anatopism]

As difficult as it must be to pour out your thoughts, I appreciate that you have done and continue to do so.

[1nstinct]

So glad for the good new!!! There needs to be more people like you in this world that are not scared to share your emotions and your story's. Congrats again on the good news!!!

[wilomn]

Thanks guys. It's good to know how you feel about this and the support I've gotten, both from those who've let me know and those who haven't, is sincerely appreciated.

The reason I waited so long was because it took so long to find out what was what and then I had to debate with myself about ten thousand times whether or not to put it up.

I'm a lucky man.

[DemmBalls]

It is interesting to read such a detailed & timelined account of what you are going through...Not just physically, but mentally. I read all of your threads and am a huge supporter of yours, but I don't always post...I usually just don't know what to say.

[Skiploder]

Wes, I'm glad you continue to post your experiences - good and bad - regarding this ordeal you have to endure. I don't know whether it takes more courage to face down cancer or share you experiences with strangers..............

Any parent or husband, any person with loved ones they are afraid to leave behind will, once in awhile, in the dead of night, wonder how those loved ones will get on without him/her.

To have to face that as a possible reality day in and day out for perhaps the rest of your life - and to face it honestly and openly - is something I don't think I could do.

I'm glad that your were not the exception to the relapse rule and I'm glad you continue to provide us with an account of what is going through your mind as you deal with this.

As always, the positive thoughts of the Parmley family are always headed your way..........

[Dwish]

As difficult as it must be to pour out your thoughts, I appreciate that you have done and continue to do so.

x2