Terminal

What The [BLEEP] Is This Gluten Thing All About?

2011-08-04T16:06:00.001-07:00

For the longest time, I had some GI problems.

To make a long story short, basically I went to the restroom a lot more than the average man … sometimes it hurt for no apparent reason … I’d get bloated … gassy …

On several occasions over the years, I’d talk with my doctor about it. He’d prescribe some medication or another – which never completely alleviated the problem, but it helped. Yet, the symptoms continued.

Shortly after I started Chemotherapy and Radiation, it got a lot worse. Every day, Monday through Friday, I had a radiation being directed at that part of my body so I brought it to my doctor’s attention. That seemed logical, but he told me those weren’t side-effects of radiation.

I then brought it up to my Chemo Doctor … he said the same thing. What the heck.

Because I was in a lot of pain, I was given some pretty good narcotics – which have the side effect of constipation, so that helped … some.

After I was done with Cancer treatments, there was no change in the symptoms. All my doctor could do was give me some pills, which (like before) didn’t solve anything – but made some things easier.

I was starting to think I was going insane. My body was telling me something was wrong, but none of my doctors seemed too concerned. Every time I talked with the doctor about it, I was told it could be a symptom of either the HIV or the medications I’ve been taking. Or, it could just be my body reacting to the cancer or the treatment.

But my body was telling me something was wrong… so, I started trying to figure it out myself.

I talked with a nutritionist where I volunteer, thinking maybe they could help shed some light on things. She gave me a few ideas, the biggest one being to keep a journal of what and when I ate and drank, and what symptoms I was getting and when.

After a couple weeks, we made a discovery. While the symptoms were fairly constant, with some days better than other days – the good days seemed to occur on days when I didn’t eat a lot of wheat. So, to test this theory – I decided to completely eliminate wheat from my diet – just to see what would happen.

And … oh, boy! Did something happen…

Those symptoms I had been dealing with … went away. Totally gone. And, not only that, I noticed I felt better, had more energy, and I felt like a new person. Whoa! What’s up with that?

During this time, I did some research on the internet and at the local library – and sure enough, everything I had been going through were symptoms of either Gluten Intolerance or Celiac Disease.

Then, (after taking a tour of the kitchen and reading every label) I learned that the vast majority of things in the house to eat had gluten in it. Seriously. (Don’t believe me, go through your kitchen and find things that don’t have wheat listed in the ingredients…)

Pretty much, I could eat some eggs, a hamburger with no bun, or some potato chips. Wow!

After the first week (which started with a trip to several stores to find gluten-free products) I felt so different, I didn’t even feel like myself. The pain was gone, bathroom trips were infrequent, and I felt good, beyond “good” … almost … manic. (not quite)

And suddenly, things started clicking into place. All those clues I kind of missed were now staring me in the face. Like … how I noticed a few years ago that I couldn’t drink beer because I’d get sick. Not drunk sick, but :”How long is the line to the restroom” sick. That was three years ago.

So, how long has this been going on without me being able to figure it out?

Over the past few months, I’ve talked with a few other people who’ve been diagnosed with Celiac Disease or are Gluten-Intolerant … and the strange thing is most of them have stories kind of like mine.

Gluten-Intolerance and Celiac Disease is a lot more common than people might think. And, according to the experts, the vast majority of people don’t know about it.

Gluten has been getting a bit more media coverage these days, and at first I thought it was something new. Maybe, in a way, it is – but … maybe not.

Another thing I learned is that Celiac Disease (and Gluten Intolerance) seem to develop or get worse when people go through major stressful events in their lives. Like … say … being diagnosed with Cancer (and starting treatment) … Maybe, in my case, that was the trigger that took some minor gluten-issues and made them much bigger.

Since I’ve learned I have Gluten issues – it hasn’t always been easy. A lot of what I have learned has been through trial and error. For example, I learned not to cook my gluten-free toast in the same toaster my roommates use for their (gluten-containing) toast because it’ll contaminate my food. Or, how easy it is to contaminate things like butter or peanut butter…

I’m still learning … usually by getting sick and then looking back over what I just ate to see where the heck the gluten came from. If I start to hunt for it – it’s usually not that hard to find.

Redesigning the Blog...

2011-08-03T20:35:00.000-07:00

If you've been to my blog before, you might notice it looks a little different ... it's got a new title ... and maybe a few other things have changed too.

If you know me as Corky the Computer Guy, and you notice my blog is now called "Terminal" - you may think this is a geeky nerdy blog. You'd be wrong. The word "terminal" has ... well ... other definitions.

I created this blog (it used to be called My Life On The "C" List) when I was diagnosed with The Big C ... yep, Cancer. I had dreams of blogging about my life in dealing with Cancer, but unfortunately, it never took off. I spent a lot of time in bed, often feeling too weak to even change the television channel, let along get up and post to the blog.

I did post a few things ... most were along the lines of general updates after doctors appointments ... something to let my friends and family know I was okay and what I was doing.

Now that the Cancer treatment is done, and the biopsies all said there's no cancer down there anymore ... and things are starting to look better (at least, on the topic of Cancer) ... I just couldn't quite bring myself to blog about it.

What's going on in my life now really does have something to do with Cancer. But ... Many years before I was diagnosed with Cancer, I was diagnosed with another horrible, incurable (dare I say, "Terminal") disease - AIDS.

And since the Cancer diagnosis, I was diagnosed with one more. Kind of. Actually, it's not really a terminal disease, although I suppose it could be. I'm talking about Celiac's Disease/Gluten Intolerance.

Took us a few years to figure that one out... I'll tell you about that in another post.

Here's the thing - when I was going through the cancer treatments, I would start to notice "side effects". Let's say, for example, audible, odorous, moisturous flatulence discharge. It started around the time I started chemo and radiation, so I thought one of those were to blame. But, according to both my oncologists, it wasn't. So I talked with my HIV doctor, he didn't seem to think much of it and just blamed it, possibly, on my meds. (Yeah, he didn't have to wake up at 3a.m. gagging on fart smell.)

Now, I learn that's one of those symptoms Celiac's (or people who are gluten intolerant) get when they eat Gluten.

Life is rough when you're trying to live with one horrible, incurable disease. It's a bitch when you have to try and live with two. But ... what about three?

HIV is still part of my life. I've been HIV Positive since 1992. I got my AIDS diagnosis a year later. Two doctors (okay, one Doctor, one Nurse Practitioner) told me I'd be dead in less than a year. But ... I'm still here.

Then, a bit more recently, I kicked cancer's sorry little ass. I fought the cancer, and it died. (I like to think it died screaming for its mother, in severe pain and loneliness, but ... really, I'm not a vengeful person.) Cancer's gone (for now, anyway) and I'm still alive.

Now, I find out that there's something called Gluten that is found in wheat, barley, rye (and a few other things) that makes me sick. And by sick, I mean - in pain, with loud wet farts, diarrhea, bloating, a lack of energy, and not even Tina Fay can make me laugh. Yeah ... it's THAT bad.

But, I'm not going to let that kill me either.

And ... just maybe ... I have something to say about all that.

Relief … (or, ouch! my butt hurts)

2011-06-07T10:30:00.001-07:00

A couple of days ago, The New Proctologist called. It was the first time since my surgery that I had been able to speak with him.

The first thing he tells me is that they did a whopping five biopsies from up my bum. A year ago, they took one biopsy from … uh … up there – and that I felt for a couple of months. So, I’m kind of wondering just how long I’m going to feel this one. Sigh…

Needless to say … I’m in a fair amount of pain. Thank goodness it’s not a constant pain … and the Vicodin is helping … some.

For about a week before the surgery, I was having a bad feeling about … well … everything. There wasn’t anything I could single out … nothing I could point to … just a feeling … I was afraid the cancer was back … or, if not the cancer then some other problem was going to rear its ugly little head.

Stage III cancers have a fairly high reoccurrence rate. Squamous Cell Carcinoma, in general, tends to come back fairly frequently … so – there were two strikes against me, already.

I’ve just heard way too many stories about people being diagnosed with cancer. At first, it seems to be going away … or, maybe it does go away completely … then as soon as they start to relax – it comes back … with a vengeance … and the results are often fatal.

So, yeah … I was nervous as all heck.

A huge part of me was relieved when The New Proctologist told me that not a single one of the five biopsies he took showed any signs of cancer.

None. No cancer. Anywhere. Woohoo!!!

I’ve had several doctors tell me that with my kind of cancer, you aren’t considered to be “in remission” until two years after you’re cancer free.

So, I say … let the countdown begin. 1 Year, Eleven Months, and 27 days to remission (or, thereabouts)…

Things Have Been Progressing At A Snail’s Pace…

2011-05-31T06:38:00.001-07:00

Since my last update, things have been progressing slowly… very slowly.

My last PET Scan, which was about six weeks ago, contained both good news and not-so-good news. The good news was that the original cancerous mass was no longer showing up. It’s gone. It was obliterated by the Chemo and Radiation. I kicked its butt. It died a slow, horrible death. Woohoo!

The bad news… the PET Scan was lighting up as if there was something there, although no possible causes could be seen. Dr. R.O. informed me that it could be nothing – just leftover radiation from last years treatment. Or, he said, it could be something else.

Something … uh … new?

Dr. R.O. wanted me to go back to the proctologist … the one who started this whole thing – but I didn’t think that was a great idea. Don’t get me wrong – he was a great doctor and I couldn’t ask for a better one. However, he was part of a different Hospital system and I didn’t want to go through all the communication problems (the way it took months to get the biopsy information from the lab to the new oncologists, for example) again. So, I saw a new doctor – one associated with the Hospital I actually go to …and one who has a history with my Oncology Team.

So, a month ago, I went to see The New Proctologist.

Most of my visit was him asking me questions – pretty much what you’d expect from any doctor. Once I told him everything I had ever gone through, medically speaking, including everything about my cancer treatments up to the final PET Scan results, it was time for the one thing that any sane man has learned to dread.

The New Proctologist grabbed the little white cardboard box that held those damned blue latex gloves and asked me to bend over. (GULP!)

It’s funny … after dealing with Anal Cancer for thing long, you’d think I’d be getting used to this part of just about any exam – but … um … no.

At least I got to moon another doctor…

To make a painful story short – he felt something up there that wasn’t there the last time a doctor (Dr. R.O.) stuck his finger up there. Unless he missed it, which I kind of doubt … but I guess it’s possible.

The next step …

Tomorrow, I’ll be checking into the hospital for a (hopefully) outpatient procedure. They’ll knock me out and go up there exploring … A lot will depend on what The New Proctologist finds. If it’s just a small mass, he’ll go ahead and remove the darned thing and do a biopsy. If the mass has grown, it’ll probably be the same thing, I don’t know. I’m not trying to think about that.

Maybe, he’ll take a look up there and find nothing but scar tissue – which is possible, too. In which case, he’ll probably just take a few scrapings to biopsy, just to make sure nothing’s going on.

What I keep fearing through all this … Squamous Cell Carcinoma has a fairly high re-occurrence rate… Stage III cancers, in general have a high re-occurrence rate … so the odds are really against me, there.

But, I guess I just have to wait and see.

Progress… Slow But Steady

2011-03-22T08:40:00.001-07:00

Yeah, I know … it’s been awhile since my last blog post here. Sorry ‘bout that.

As far as my cancer goes … since my last PET Scan, not a lot has been happening. Well, that’s not totally true – it’s more like the progress has been so slow, it’s kind of hard to notice.

I still have some pain from the surgery or cancer (it’s hard to tell since they were both at the same spot) … still getting some discharge from time to time … although, I think its getting a little better.

Next Tuesday, I’ll be going in for another PET Scan. I’m hoping that this time the cancer will be completely gone … although I hear I won’t officially be “in remission” until I’ve been cancer free for two years. What the heck is that all about?

Anyhow … my life is okay … at least, as far as the cancer recovery goes.

Thanks for stopping by … and I promise I’ll be a little more … uh … regular with my blog posting.

PET Scan … Volume 2

2011-01-11T16:03:00.001-08:00

Yes, I know it’s been awhile since I’ve posted to the blog here … The reason for that is because not a lot was happening that was worth talking about. A few months ago, when I finished with the Chemo and Radiation, I knew I was going to have to play The Waiting game for a few months before going in for another PET Scan to see if all this therapy stuff worked, if I was going to need more therapy … or surgery … or just what.

I didn’t want to think about it.

As the weeks progressed and I could feel myself getting stronger, I started getting active with a lot of the stuff I was doing before all this began. I started attending my Masonic Lodge again … then started doing the volunteer thing … and for awhile there, I was starting to feel like my old … well, my pre-cancerous self.

On January 4th, I finally went in for my PET Scan … and the next day I had some of the answers I had been waiting for.

Going in for the test was pretty much what I expected since I had already done this once … so I kind of felt like an old pro as I went through the hospital admission procedure (which you have to do whether you get a room or not) … followed by the preparation for the scan … then spending 20-30 minutes inside the machine before they let you go home.

What I wasn’t expecting was the results.

See, the thing is … I was kind of hoping that I would hear those magical words – “You’re in remission” or “There’s no longer any cancer inside you” or something along those lines.

What I heard instead was that there was a “great improvement over the last scan” … and when I heard that, my mind instantly went to that place I really didn’t want it to go to. But, as it turns out – that wasn’t a bad thing.

The scan showed that the cancer was drastically smaller. How big it is, I don’t know – I have an appointment to actually see Dr. R.O. in a few weeks and at that time I’ll be able to see the results and get to ask further questions.

The doctor did say, however, that the cancer was slowly dying. Or, as I like to think … the cancer is dying a slow, painful, miserable death. The doctor also told me that at this time, he does not see the need for further treatment or surgery.

Once again, I was reminded that my type of cancer does, from time to time, come back … so even if it were completely gone, that wouldn’t mean I was out of the woods yet.

The next step for me will come later this month when I’ll get to see both Drs. R.O. and M.O. for what should be routine follow ups. Then, after another round of the waiting game (unless something bad happens) I’ll go in for another pet scan after another 4 months. And then six months after that. And then six months after that. And then … well, I don’t know how long I’ll have to do that – a few years, it sounds like.

But, even after that – there is still the possibility that the cancer could come back again … so I guess that’s something I’ll just have to find a way to live with.

So … how am I doing with all this? Well … overall I think I am doing okay. It still bothers me that I still have some cancer leftovers in there, even if they are dying. I want to be cancer-free, not cancer-lite. (is that a word? I guess it is now…)

I could spend my time dwelling on the possibilities … what if the cancer comes back? What if the cancer that’s left over isn’t dying? What if the cancer spreads between PET Scans and there’s a delay in being able to treat it because I thought I was fine …

I just have to keep reminding myself that while those are possibilities, right now they aren’t a reality. Maybe they will be someday … but today things are alright, so I might as well enjoy it.

The End (But, Of What?)

2010-10-02T13:47:00.001-07:00

I know I haven’t updated the Blog in a couple of weeks … like I had planned to. The biggest reason for this is that … well, I’ve been in so much pain that it was just too hard to sit at my computer.

The other reason was that there really wasn’t that much to say. For the most part – every day was pretty much exactly like the one before it … wake up in pain … lie in bed until the morphine kicks in … head to the hospital for radiotherapy or to see the doctors … come home … eat a little something and lie in bed for the rest of the day.

Not much, really, to talk about…?

Yesterday, at long last, was my final day of Radiotherapy. I’d be jumping for joy if I didn’t have some pretty severe burns scattered around my backside and … my privates …

The Doctor wanted to see me before I started my last treatment … which was good, because I had a bunch of questions that had been piling up. Nothing too major …

I’ve been thinking about going to a different proctologist than the one that did the initial surgery. Don’t get me wrong, I think he’s a fine doctor – he’s just associated with a different Hospital and I think it would be much better in many different ways if I could see a proctologist surgeon associated with the same hospital.

I also had a few questions about my side effects … How long would I likely be in pain? … Will I ever be able to sit down on the toilet without needing major pain meds? … What is up with all these hot flashes and sweats? … When will the skin return to its normal color? … How long before I am able to do all the things I was doing before all this started?

The doctor seems to think that a lot of the pain will go away after several days, or maybe a week – however, there is no way of knowing for sure because everyone’s bodies are different – but apparently that’s about average for guys with my type of cancer and degree of treatment. He also seemed fairly confident that within a few weeks, I should be able to resume whatever activities I wanted to do.

Well … I certainly hope he’s right. Honestly, I can’t wait to get out of this house and do … anything. I can’t believe how long it’s been since I’ve left the house to go anywhere other than a hospital, pharmacy, or grocery store. I’m really looking forward to getting back to my volunteer job … and looking for work … helping out at my Masonic Lodge … It’s been driving me absolutely nuts to have been cut off from all that the past several months.

Now that I am (finally) at the end of my treatment … I am more relieved than anything that my body finally gets a chance to start healing itself.

So, what’s next? Well … next Friday, I’ve got another doctor appointment with Dr. M.O. – he just wants to check that everything is still on the mend after that last cycle of Chemotherapy. (My white blood cells have been a little slow in getting back up to acceptable levels. He’s a little concerned, but not too worried about that.)

Three weeks from now, I’ll return to Dr. R.O. again …and it sounds like at this time I’ll schedule another PET Scan. This will determine whether or not all this actually did anything (other than give me several third degree burns). Hopefully – the results of this test will be that the cancer is gone. There is a chance of that happening. The test could also tell me that the cancer is still there (which is entirely possible) but has shrunk to the point where it can be easily removed. Or, the test could tell me that the cancer didn’t respond to the treatment and I either need to do all this again – or try different treatment options.

I certainly hope it isn’t that last thing … according to both Doctors, while that is possible, it isn’t likely.

I don’t want to start thinking I’m safe, even though I probably am … because I don’t want to get my hopes up only to be let down. That’s what happened after the surgery. Several weeks went by after the biopsy was done and I kept thinking that if it was something serious (like Cancer) they would have called me or something …. so I let myself get lured into that false sense of security only to have all that come crashing down.

And, the bottom line is that nobody really knows what that test is going to find. So, until then … I’m not trying to think about that … too much.

Chemo…the Final Cycle

2010-09-14T11:13:00.001-07:00

Yesterday, I started my final (I hope) cycle of Chemotherapy. The day started with a seven o’clock pickup from the van service (which was so much earlier than the ten thirty pickup that I am used to) … to get me to my seven thirty appointment to have the picc-line (re)installed.

This time went so much more smoothly than the last time … a lot less painful … less scary … and the nurses I had to deal with actually had some bedside manners and seemed less upset at having to deal with nervous patients.

After this was a fairly standard Radiotherapy session… followed by roughly ninety minutes (maybe two hours) on the Chemo Floor. I got to see the doctor briefly … but mostly I just sat in the chair next to the machine filling my freshly installed picc-line with saline solution … then anti-nausea medication … then some Mitomycin (one of the cancer drugs) … before they finally hooked me up to the chemo pump I’m to take home filled with the 5-FU (yeah, five FU’s back at ya, cancer drug) …

By the time I got home shortly after this … I was pooped … exhausted … so I forced some food down me (‘cause I wasn’t sure if I was going to feel like eating later) and headed to bed.

For the rest of the day, I didn’t feel like doing much of anything … other than trying to get caught up on the X-Files DVDs I recently got … and a few movies (nothing all that exciting, but After.Life with Christina Ricci and Justin Long wasn’t half bad.)…

After ordering pizza for dinner and scarfing down a few pieces … I eventually headed to bed. It took me awhile to sleep, though … was in a bunch of pain and it took a few hours for the pain killers to kick in enough for me to sleep.

Thankfully, when I woke up this morning, I was as close to pain-free as I’d gotten in several weeks – which was a huge surprise. There was some minor discomfort, but nothing too bad.

As I sit here to write this … the pain is starting to return. Let’s hope it won’t be too bad.

Halfway…

2010-09-06T20:34:00.001-07:00

I can hardly believe it … but, I’ve just hit the halfway point in my planned treatment. If I wasn’t in so much pain … I’d feel like celebrating. If today weren’t Labor Day in the USA – I’d try to declare this a holiday!

Yeah, I’m in pain … mostly because I’ve had a few too many trips to the bathroom. But, they’ve told me that to be expected. This past week, Dr. R.O. told me that it’s fairly usual for people with anal or rectal cancers to have … you know … diarrhea … at this point in their treatment.

Yesterday, Roommate and I were invited to a Labor Day party. All throughout last week, I was kind of excited about it … looking forward to getting out of the house (going somewhere besides a quick trip to the store or pharmacy … or the daily treks to the hospital, or for something related to cancer) … but … unfortunately, that didn’t exactly happen. Even though Roommate had a few reasons of his own not to go – there’s no way I could have made it with me running into the bathroom every 15-20 minutes.

Today was a slightly better day … although I did think a couple of times whether it was possible to take either the computer or the television into the loo.

Today it was plain old exhaustion that was wearing me down. I tried to eat whenever I got hungry (and I’ve been having a craving for Peanut Butter lately) … and I tried to keep myself well hydrated.

It was nice to have a long weekend away from the hospital … but tomorrow starts Week IV of Radiotherapy. On Wednesday, I’ve got another visit with Nurse R.O. to … well, get me ready to start the second cycle of Chemo … I’m not sure if I am looking forward to that or not. But, I think it’ll be good to get that over with – at least.

Otherwise, this week should be fairly … routine.

At least … that’s the plan.

Help!

2010-09-02T08:04:00.001-07:00

They say it takes a special kind of man to ask for help. I’m not sure I believe that, though. After all, wasn’t it John Lennon (and Paul McCartney?) who wrote and recorded that Beatles song Help!…

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help…

For the most part, since the surgery that lead to the cancer discovery, I’ve been trying to deal with this on my own. I do get some support from Roommate #1, not that he has a history of dealing with cancer, but he’s been there for me when I’ve needed it – and I am truly grateful for that.

At first, I was probably somewhere between shock and denial, which I think is fairly usual. I’ve been dealt some fairly major health-concern cards in my life … primarily the HIV/AIDS card which was dealt to me back in 1992.

After living with AIDS for eighteen years, I am pretty well aware that things could turn south for me at any moment. There have been a few minor blips on my radar throughout this time … and I feel very lucky that I’ve made it through all that … stronger? … well, maybe.

So, when I was told I had cancer … my first thought was that this would be just one more thing for me to get through … like when my appendix ruptured … or those couple weeks I spent in the hospital with pneumonia back in 2003.

Yeah … I know … (sigh)

The more time that passes, the more it continues to hit me … the realization that when it comes to Cancer … something pretty major is going on.

Every week (usually on Tuesdays) when I go in for my Radiotherapy, I get to sit down with the nurse and the doctor for my weekly checkup. One of the things the nurse does is give me this form to fill out. At the top of the form is this little thermometer with a 0 at the bottom, and a 10 at the top – and my job is to circle where I feel my stress level is.

I’ve been putting my stress level pretty high … mostly because of everything that’s going on in my life. Cancer is a huge part of that … being almost completely broke because I have had to take time off from work is part of it … so is dealing with roommate issues … getting used to my new (hopefully temporary) physical limitations … not to mention the nearly constant pain (even when the pain is manageable – it’s still there) … not being able to volunteer with my family at the Food Pantry … my social life right now is pretty nil … it really starts to add up!

Right after I was diagnosed with Cancer, I posted to the online group of a club I used to be very active in … asking if anyone had any Cancer resources. I got two leads.

The first one I called … well, let me say I didn’t get a very good vibe. I’m sure there are people out there who go to this place and get support, so I don’t want to say anything too negatively about them … most of the services they offered were more geared toward women (breast cancer, women’s health, etc. …) and she only told me of one men’s group (for lung cancer). So, maybe there’s a better place for me.

Then I called Gilda’s Club Chicago. When I first talked with them … based on my earlier phone call, I asked a few questions off the bat. Do you offer services for guys (yes) … Are you gay friendly (“I would paint a rainbow on the door if I was allowed, but the door has to be red.) …

The first step for any Gilda’s Club member is to go through a New Member Orientation … in which you sit down with other new members as well as one of their employees so they can go over the history of the club … talk briefly about the wide variety of services they have to offer … and then take a tour.

That’s what I did last Saturday. It took a lot out of me (and Roommate #1) but I think it was worth it!

The next step for any Gilda’s Club member is to sit down, one on one, with one of the employees … which is what I did yesterday afternoon.

I sat down with the lady who ran the New Member Group the previous Saturday … she asked me a lot of questions … like when I was diagnosed, what my health and personal concerns were … Then she asked if there were any of the services I was interested in.

We discussed some of my concerns over their Support Groups … which are closed (you can’t just RSVP or show up … and they ask you to make a 12 week commitment) … which I have to say I’m reluctantly interested in. There’s also a few of what they call Networking Groups (which are kind of like support groups, but more open … and deal with specific topics. They even have a networking group for people with anal cancers) … I’m definitely going to check that one out.

They also offer services for families … which I can’t say I qualify for … as well as services for friends or family members of someone affected by cancer. While I do qualify for those services (my brother has esophageal cancer) … I think it’s best right now to focus some on me … but it’s good to know I can access those services should I need or want them.

I’ve yet to attend a support group … or networking group … but I think that’s right around the corner.

Week II Wrap Up

2010-08-31T08:09:00.001-07:00

The end of the second week of radiotherapy was, for the most part, just as uneventful as the beginning was. Actually, without the side effects from Chemo (and that other little medication mishap) … I think it went pretty well.

Week III started yesterday, and if you’ve seen the pattern forming here – it was fairly uneventful too. However, after my therapy I had an appointment with Nurse R.O. and to my complete and utter surprise – I only had to wait about 15 minutes.

They did blood work (my white blood cells were down slightly from last week but they’re not all that concerned) … she listened to my chest while having me hyperventilate … I mean, breathe deeply …She asked me how I was feeling … what kind of problems I was having.

So far, other than a little skin soreness where they’re doing the radiotherapy … and a lot of pain when I have to … you know … go number two … or when I try to sit down after that … but the Vicodin pretty much takes care of that and when it doesn’t I still have the Hydromorphone.

But … there is one thing that is … well, it’s driving me absolutely nuts!

And that’s not knowing if all this is … actually doing anything.

Before I began, several people (Dr. R.O. … Dr. M.O. … as well as the proctologic surgeon who found the cancer in the first place) said that the pain would go away once I started Chemo and Radiotherapy. I got the impression that the pain going away would mean that the treatment is working like it should. And, I know it’s only been two weeks since I started treatment, but …

It certainly doesn’t feel like the pain has started to go away yet. Actually I’ve been thinking one of two things: that the pain is actually getting worse … or maybe it’s just that I’m starting to get used to the Vicodin – which is why I asked for something stronger.

Even though I am constantly getting x-rays done … and medical tests here and there … there isn’t a single one of them that actually shows the cancer … or measures the cancer … or checks to see if it’s spreading anywhere.

When they do the X-rays every week – they compare the most recent x-rays with the results from the PET Scan (which was several weeks ago) to know where to send the radiation. But, what if the cancer grew between the PET Scan and now? How would they know? I don’t think they do.

Granted … I know very little about cancer … and I’m pretty certain the Oncology Departments know quite a bit more than I do … so I try to trust that they know what they’re doing … but … what if?

The other thing that kind of goes with this … are those infrequent times when celebrities let it known they were dealing with the same kind of cancer I am.

Like … Charles M. Schulz, who passed away two short months after he was diagnosed.

And how could I not mention Farah Fawcett who passed away a bit more recently …

Seems like everyone I’ve heard about who was diagnosed with the same kind of cancer I have … are gone a few months later.

I want to think the treatment is working … I want to think I’m going to get through this. I want to think that it won’t be long before the pain goes away.

I want to…

Starting Week 2 of Radiotherapy

2010-08-25T23:11:00.001-07:00

I know it’s been a few days since I’ve posted anything … mostly because not much has been going on.

For the most part, I spent the weekend doing things that I didn’t (or couldn’t) do during the days when I was suffering (cough snort) from adverse reactions to Codeine.

Truth be told – it actually felt kind of good to get out of bed … play around on Facebook for awhile … bake a dozen cookies … and even doing some light housework.

But, in a way – it also kind of depressed me. Even though I was pain free and feeling fairly good … after vacuuming the living room, I was so exhausted, I had to sit down for fifteen minutes to catch my breath.

One of the things Dr. R.O. had talked with me about was how important it was for me not to spend all day in bed, even if I felt like throwing the covers over my head and trying to go back to sleep. I got the impression that it was an important part of the recovery process to keep the body active during treatment.

So, after spending the weekend partly resting, partly getting some very minor things done around the house – it was time to start the second week of Radiotherapy on Monday.

After having been so out-of-it on Thursday and Friday, everyone was happy to see that I was doing so much better. I was ushered almost immediately into the radiotherapy area. After they did my usual treatment, they proceeded to do a few x-rays (or, taking my picture as they call it.)

They explained to me that all the marks they’ve made on me (using magic marker) helps them know where to focus the radiation beams. However, because the skin can move (even just slightly) because of everything from how one positions oneself to weight loss (and a few other things I don’t remember what exactly they said) – they had to use the x-rays because things like bones (that show up on the x-rays) don’t move … So, in essence, they compare the x-rays with the original PET Scan results to know where and how to focus the radiation.

As they were telling me all this, they used a lot of complicated words that I have absolutely no idea what they mean … words that I only vaguely remember hearing in High School science classes, or more recently on old reruns of the various Star Trek shows …

Once they were finished … but, before it was time for me to head home … I first had up to the Chemo floor for my weekly checkup … and (hopefully?!) get my Picc-line removed.

Once I arrived on the floor, I had a few minute wait before I was collected by the Vampire-Department (Phlebotomy guys) who took my blood so they could determine my white and red blood cells, test how well my liver and onions were functioning – or something like that. Then, they took me back to one of the rooms to wait for Nurse M.O.

And there, I waited. And waited. And then I waited some more.

I read through three Newsweek Magazines … which actually had a few interesting articles in them. And then I looked at my watch. It had been over an hour since I had been deposited in that room to wait for the Nurse.

Having run out of magazines to read … (I really had no interest to read either the Ladies Home Journal or the Spanish-Language magazine I had never heard of before) … so I just moved over by the window and looked out over Lake Michigan as I waited … and waited … and waited …

By the time it was getting around to the “Enough Already! I’ve been waiting over 90 Minutes” mark, I went to go stand in the doorway to see if anyone was out there. A few minutes later, one of the … well, I don’t know exactly what she does there, but when I was having my initial chemo infusion thing done, she asked if I was thirsty and brought me a bottle of grape juice, so I know she works there doing … well … something … Anyway, I asked her if she knew where the nurse was. She said she didn’t, but went to go check.

She returned a minute or so later and informed me that the nurse had just left the floor for lunch and it would be at least a half-hour to forty-five minutes before she’d be back. By this point, I was really getting annoyed. I had been waiting for close to two hours (my appointment was officially for 11:00 and it was now 12:50) and she leaves for lunch. Sigh.

Yeah, at this part, I finally got really upset. Even though I knew that complaining to this lady wasn’t going to solve anything – I complained about the wait time. She told me that the Medical Oncology floor was a very busy place and from time to time there were some patients had to wait a little while to see the doctor or nurse.

I regret it now (and I apologized to her after doing it) but I even went off on that. Two hours isn’t exactly a minor wait … and every time I’ve had an appointment, I’ve had to wait at least that long to see the doctor or nurse. Sure – the first time, someone had come out and let me know they were a little backed up and would be with me as soon as they could (and trust me, I appreciated that) … but that hasn’t happened since.

Being that I was starting to get hungry, I decided that (since I apparently had a bit of time to kill) maybe a quick run down to the cafeteria would be a good idea. So, I went and got my lunch and brought it back up to the room.

At 2:30 … I went back down the hall again and checked in with the receptionist. The Nurse had just arrived back on the floor. The receptionist was then kind enough to use the intercom thing to speak with someone “in the back” trying to find her. Whomever it was she was speaking with said the nurse was just about to see her 2:00 appointment and asked if there was something she needed help with.

The receptionist (I love her for this) told Whoever she should let the nurse know that her 11:00 was still waiting and was likely to become restless if the nurse didn’t come see him soon.

At 2:45, the nurse finally came in to see me. No apologies for being so late … no explanations … just came in, sat down, and started telling me how good my lab work was.

Yep. That was it. I asked a few questions, which she seemed happy to answer. She listened to my chest as I breathed deeply – and within 10 minutes we were done.

After a short walk halfway down the hall, I stopped off in the Chemo Treatment Room to have the Picc-Line removed before it was finally time to head home.

For some reason … the wait time issue has got me a bit more upset than I would care to admit. The telling detail … at least in the part of my mind that gets upset … is that even though I had been waiting since 11:00 … the nurse was about to head into her 2:00 appointment at 2:30.

Obviously, I don’t know anything but the fact that I had been waiting for three hours … maybe Mr. or Mrs. 2:00 needed the nurse more than I did … I don’t know. Still – it’s upset me…

Although now that I’ve (very publicly) vented … I do feel a little better.

Lucky for me … both Tuesday and Today’s visits to the hospital went fairly smoothly. (Most likely because I didn’t need to visit the Medical Oncology floor.)

Tuesday, I saw the Radiation Nurse and Doctor … got a good checkup from them. The only issue was that I had lost six pounds since the previous Tuesday and the Nutritionist was “very, very concerned”.

Once I explained to her that I hadn’t eaten for three days because of an adverse reaction to some medications, which I stopped taking … and for the last couple days had been eating much better … she seemed to relax some – but stressed that I needed to put that weight back on.

Sigh.

Alright. If they want me to eat whatever I can to gain a few pounds … including, according to the nutritionist, any junk foods I would want to eat (as long as I also eat healthy meals) … I guess I can suffer with some chocolate chip cookies.

It’ll be hard … but I think I can force myself to eat that.

Side Effects Run Amok

2010-08-21T14:59:00.001-07:00

When I woke up on Thursday morning, something felt wrong. Yeah, I was pretty nauseous, and I was in a bunch of pain … but, it’s been that way for several days (the pain much longer) … but, for some reason … something felt different. I was afraid something had gone terribly wrong.

I’m not normally the type of person who feels sick and wants to spend all day in bed. I may not want to get up and start salsa dancing or doing some serious work … but I do want to get up and do something … even if it is just some really light housework or something. But, Thursday morning, I had to sit in bed for awhile debating whether or not I really had to get up to walk to the bathroom.

I was able to make it to the hospital in the morning (thanks to the transport van) and was able to sit through the entire radiotherapy session. But, by the time I got home – for the most part all I could do was fall into bed and take a nice long nap.

Friday, I woke up feeling worse … the nausea was very severe and the pain was so great – it was hard for me to physically move. I knew something was wrong … so I guess going to the hospital for treatment was the best place I could go.

By this point, it had been two days since I’d been able to keep any food or liquid down … including any medications I had tried to take … so instead of starting off with radiotherapy – they sent me up to the Chemo floor. (My pump was also doing that annoying beeping thing letting me know it was empty.)

Once they unhooked my Chemo Pump (I still have the port in my arm) they hooked me up with some saline solution worried that I’d become dehydrated. Included in that was, thankfully, some anti-nausea medicine. The Chemo Nurse also checked on me pretty frequently too.

Once I was feeling better, we talked some about what had been going on. The severe nausea had started around the same time I had started one of the new pain meds – namely the Oxycodone.

Looking back, this whole episode reminded me of the time (back in 1994) when my appendix ruptured and they gave me Tylenol 3 at the hospital … which I promptly threw up. They gave me another dose, this time injected … but I kept vomiting and was so nauseous … eventually they told me I just couldn’t take Codeine.

So, a month ago (more or less) I went to a different pharmacy that I usually use (because they’re not always open on weekends) to refill a Vicodin Prescription. This new pharmacy wouldn’t fill the order because I had told them (at some point in the past) that I couldn’t handle codeine.

I don’t mind the initial hassle, really. I mean, if you tell a pharmacy you can’t handle a certain medicine – they should be … well … concerned … if you try to hand in a prescription for that later down the line. They’re looking out for your well being … right?

Well, unfortunately - I think this pharmacy went one step too far.

They talked with me about what happened the only time I had taken Codeine … they asked me if, when I took Codeine, did I get ulcers? Did I get rashes? Did this happen? Did that happen?

And then they told me I didn’t have a problem with Codeine – that it must have been something else that caused me to react like that.

I should know better than to accept medical advise from someone who isn’t a doctor (although, one would think a pharmacist would know a thing or two about medications) …

So, when I went back on Wednesday for Oxycodone, I was thinking – based on what this pharmacist had said the last time I was there – that everything would be ok.

And when I started taking the new pain med … I got sick. Real sick.

I am not sure I can explain it at this point … if I can’t handle Codeine, how can I take Vicodin, that has Codeine in it? Or … why is it that I can’t take both Tylenol 3 and Oxycodone? It’s something to talk with my doctor about, anyway.

Thankfully, after two days of feeling so awful … I am starting to feel much better. I’m finally starting to be able to eat again … although I am not eating as much as I usually do. I had some soup last night, which stayed down. Woke up at 3:00am and ate a peanut butter and jelly sandwich, which was fine. This morning’s English Muffin breakfast was fine … for dinner, I had a breaded chicken patty.

I’m not feeling strong or as energetic as I think I should be … but at least I’m feeling better than I had been. Hopefully tomorrow I’ll still feel better.

Chemo and Radiotherapy–Day 3

2010-08-18T18:27:00.001-07:00

Today is my third day of both Chemo and Radiotherapy … and as of today, the side effects are really starting to get a bit stronger.

First off, the nausea is … well … making me not want to eat. I did have a nice dinner, though – grilled chicken. I think I’m going to be able to keep it all down. We’ll see, I guess.

The other side effect giving me a bit of problem is just plain old fatigue. It just takes me so much energy to stand up, let alone walk anywhere … or do anything … it just makes me want to crawl back in bed.

Finally, the pain. Yep, it’s still there. The new narcotics are helping … when I take them. Unfortunately, they make me drowsy, so I am waiting until I really need them before I take one. Which just plays into the whole fatigue thing.

I am having a bit of a problem going to the bathroom. I’m not entirely sure if that’s because I just haven’t been eating as much as I used to … (I’m eating in one day what I used to eat in one meal) … or if its constipation for real … but whichever it is, I’m getting some pain in the old derriere.

Anyhow … when I got to the hospital I first checked in on the Chemo floor so I could have them refill my Chemo pump. For the most part, all they did was replace the medicine bag inside the pump, put in a new battery (just to be safe) and then they flushed out the line with some saline solution before sending me on my way.

Radiotherapy went equally as quick … as they only had me on the Radiation Machine for less than ten minutes.

Anyhow … I know full well that this post is a bit shorter than I’ve been doing lately … mostly that’s because of the fatigue. So, please bear with me … I hope to be able to write more later. Maybe not tonight … but soon!

Pain Scale

2010-08-17T20:17:00.001-07:00

Lately, I’ve had what I had to consider more than my fair share of pain. Some days, sure I’m pain free … other days it’s much, much worse. Anyhow … each time you talk with a doctor or nurse, they ask you to rate your pain on a scale of 1 to 10 … but, what does that really mean? When I tell the nurse I’ve got a certain number … how does that convey where my pain tolerance is.

I asked the nurse today if the numbers mean specific thins …or if its just how the individual interprets it. Her comment was that everyone interprets it differently but most people tend to stay within the general ballpark.

However, I’ve also noticed that how I interpret the numbers are much different than … say … how one of my roommates does. For example, when I say I am about a 4, I mean that my pain is a little past no longer being tolerable, but it’s not quite incapacitating yet. My roommate, on the other hand, can hardly get out of the bed when he registers a 4.

All this also kind of reminds me of what I was taught way back when in my Psychology 101 class, when they’re teaching about human psychological development. One lesson I remember talked about people getting shots. Young children find getting a shot a terrifying and painful experience and the experience of getting a shot would probably rank fairly high on their pain tolerance scale. However, adults may rank getting a shot anywhere from low to medium on the same scale – all depending upon their past experience.

So … then … how do I express my pain level? For me, it’s pretty much like this:

For me, it’s a scale from 0 … which to me means I’m totally pain free … to 10, which I translate as Oh my [bleep] [bleep] You have got to be [bleep] kidding me you [bleep]… or something like that.

For me, a 5 on the sale is like the halfway point between no pain and the worst pain I could ever possibly think about. I also kind of draw the line between tolerable pain (like stings, or dull aches) and not to tolerable pains. So 1 then a 1 on the scale is pain that is barely registering, and a 2 is just tolerable pain. 3 and 4 would be slightly more than that.

The upper range of the scale would be a 6, meaning the pain is really starting to be intolerable now… an 8 would be fairly severe, borderlining on where I just can’t stand it anymore … and a 9 or 10 would be past what I could tolerate and you better [bleep] do something [bleep] [bleep] quick or else I am going to [bleep] [bleep] a [bleep] [bleep] [bleep] . Or, something like that.

For me, most days I’m either a 3 or a 7. Some days are closer to 1 … other days closer to 8 or 9 – so I guess that events things out a bit.

This evening I made it to the pharmacy and got myself some slightly stronger pain meds … so hopefully I’ll be able to stay on the lower end of the scale for a while … at least.

Chemo and Radiotherapy–Day 2

2010-08-17T13:23:00.001-07:00

I can’t believe it … I’m home from my second day of Chemo and Radiotherapy … and I was only at the hospital from 11-1 … and about half an hour of that was me having a little snack while I waited for the van to take me home.

One of the hardest things … for me, anyway … was how to get to and from the hospital every day. Every time I went to appointments (with a few exceptions) I had to brave the Chicago busses and trains … it was almost a nightmare. I’d have to take the bus to the train, the train to a bus, and then one more bus to get me there. The busses were overcrowded … you often had to wait a half hour for a bus that’s scheduled to run every 7-10 … and except on rare occurrences, it’s taken me between 90 minutes to two hours to make it from one place to the other. (It takes 20-30 minutes via car, depending on traffic.)

Anyhow … the Radiology Oncology department has a van service … which makes it so much easier. On Tuesdays, the office is much busier than usual because that’s the day when all the nurses … the nutritionists … social workers … and other support staff are in to see patients. So, today I had to wait about a half hour – forty-five minutes for the van ride home … but I’m not complaining in the least. They’re doing me a huge favor … making my life so much easier … so if I have to wait for a bit, so be it. It actually gave me a good chance to run over to the cafeteria for some Gatorade and a candy bar.

The meeting with the nurse went well. She was ready to see me pretty much as soon as I had sat down in the waiting room (after taking a pain pill because … well, let’s just say Chicago is known for its potholes, which can be murder for someone with anal cancer). The started off by asking me a lot of questions. My biggest concern (so far, but remember this is only day 2) has been the amount of pain I’ve been in … because, let’s face it, anal cancer is a REAL pain in the arse …

The doctors have been telling me that once I start the radiotherapy, the pain will start to go away. However, there’s no way of knowing if that’ll happen after a week or a month or …just how long. I’ve tried to wait as long as I could before I got something stronger than the Vicodin I have been taking … but now I have a prescription for something a bit more … um … narcotic.

After meeting with the nurse, I learned that today (and the rest of this week) I only have to be in the Radiotherapy Machine for less than ten minutes. How cool is that? Once a week, probably on Mondays … I’ll have to spend an extra half hour so they can do some X-Rays (taking pictures, as they call it) before I actually get my radiation.

So, all in all, even though I am in quite a bit of pain … I think today has been a pretty good day. As soon as Mr. Roommate gets home, we’re going to run to the pharmacy … so hopefully things will turn around after then.

Chemo and Radiotherapy–Day 1

2010-08-16T15:55:00.000-07:00

At long last … the wait is finally over.

Today … I finally started Chemo and Radiotherapy. And I feel like …I feel … I feel … OMG … I feel like I’m going to puke. Hold on.

Alright. False alarm. Sorry about that. Did it just get hot in here? I mean, really hot? Like Brad Pitt hot? No? Alright then, maybe it’s just me. Has anybody seen my airline sickness bag? Oh, crap … is that Aunt Irma’s car parked outside?

The day started off as an almost nightmare. After arriving at the hospital a bit early, I spent a half hour running from place to place trying to figure out where I was supposed to go. I started off where I had been told by several people I was supposed to start, but once I got there I discovered they sent my paperwork to the wrong place. So, I had to go track that down. Eventually, though … and just on time, I got to the right place.

First stop: picc-line port city. Now, I’ve had picc-lines put in before … like when I was in the hospital for this or that over the years and they weren’t any big deal. But, what they use for Chemotherapy is … well, a little different than what they use to administer antibiotics when you can’t stop coughing. On the outside, it looks about the same … but on the inside it’s a whole other ballgame.

They had me lay down on one of those fancy tables connected to a machine that hospitals lately seem to be famous for – this time the “machine” was an ultrasound. This machine they used to locate one of the arteries in my arm heading straight to my heart … and then they used it to help guide the catheter down that artery … so that one end of my picc-line is where it usually is … in my arm … but the other end kind of it goes straight into my heart. Yikes.

And here I thought the way to a man’s heart was through his stomach. Maybe that explains why I am single. Should have consulted a medical professional. Anyway….

The whole procedure which they had told me wouldn’t take any more than twenty to thirty minutes actually took much closer to two and a half hours … waiting times included. Part of the problem was … they informed me (I had arrived at the hospital at 8:30 – appointment time was 9:00) at 10:00 that I was not on time for my 10:00 appointment and that there would be “some delay” because other people were waiting. I reminded them that I had walked in their door at ten minutes before 9:00 for a 9:00 appointment, that I had been waiting for nearly an hour. She ran off and another nurse came in to inform me they weren’t going to be able to get to me for awhile because (and yes, I am quoting her) they have more important people they need to deal with.” At this point, I was starting to get upset … I told them I had a 10:00 appointment for radiotherapy and an 11:00 for Chemotherapy but by this time I had been waiting for ninety minutes and I was really wanting to know what the hold up was.

Alright … I am trying to get my stress level back down again … they did take me back in to start the procedure shortly after that, and I guess the procedure went fairly well.

After that … it was down to Radiotherapy which started with me waiting, which should be no surprise, in the waiting room. After a short wait – two young medical technicians (which couldn’t have been older than sixth grade – just kidding) came and got me and helped me into another one of those beds attached to a machine that hospitals are famous for. It took them a little bit to scoot me into the correct position … get me all lines up … and then I have to spend a half hour laying perfectly still … trying not to think about the fact that I have to pee like a race horse … and that my nose itches … while they spend 20 minutes “taking my picture” (doing x-ray scans) and then six minutes doing the actual Radiotherapy.

Yeah, I know … I felt it was a bit anti-climatic too.

Finally, it was on to the last stop of the day … Chemo.The time is now 1:10, so I think I am a bit late for my 11:00 appointment. They were fully aware that Chemo was my third hospital stop that day … so they knew I would be a bit late … but they said that after noon they had started to think I wasn’t going to show up, and by 12:30 they had put my paperwork away thinking I had blown them off.

So, they send me back to have the vampire department (or the phlebotomy department in hospital speak) draw my blood to check my “blood levels” (whatever those are) and make sure I could “handle chemo” (whatever that means) … then they had me wait in the exam room until the nurse shows up.

I think the nurse’s favorite phrase is … “[someone else] can explain that to you.” I asked her several questions during the course of our brief examination, and that appears to be the only answer she was able to give … even when she asked me I had any questions. So, ok, nurse person who has to sign my form so I can start Chemo … go ahead and just sign so I can talk to someone else, thank you.

Finally I am ushered into the Chemo-Room (or the Treatment Room as its called by the sign next to the door that says visitors and escorts are now allowed in this room because of space limitations) where my new picc-line is hooked up to a large machine that beeps a lot and displays quite a few odd numbers at random. Oh, wait – a few of them were even numbers – never mind.

That machine first dispatched some saline solution (that stuff they like to give you that serves absolutely no medical function whatsoever, except that it makes you need to pee) … then they threw in some anti-nausea medication … then some other anti-nausea medication … followed by some Pepcid (which I learned when I got home is an anti-nausea medication that also is given to help heal ulcers and heartburn… whether this will help heal my cancerous ulcer, I have no idea.)

Once they were relatively certain I wasn’t about to puke all over the treatment room, they finally started me on one of my cancer drugs which as an incredibly long name that would be probably be really hard to spell if I could have remembered what it was in the first place. All I can say was that it was a lovely shade of purple as it dripped from the random number box through the clear tube to my picc-line and eventually directly into my heart.

Twenty minutes later, they started me on my main cancer drug with an equally hard to remember name, but they call it 5-FU (yeah, 5 FU’s back at ya, cancer drug) to make it easier to talk about and remember. This they did not give me via the large box that displays random numbers, but through a much smaller box which I get to take home so it can continue to do its thing while I do whatever it is I really don’t feel like doing because I am feeling quite nauseous. This new box doesn’t display random numbers. The first time I looked at it the number was 099. Then it was 096. Awhile later it was 084. So, apparently it’s a countdown of some sort. Percentage of treatment left? Remaining battery life? The number of times I have to see another idiotic Stephen Slater story on the evening “News” (notice the quotes)? I just don’t know.

Once I had the machine, I was given a few simple instructions, like Keep this hooked up to your arm at all times … Do not get it wet … You break it you pay for it … stuff like that. And then, at 2:00, I was finally able to leave.

I met my neighbor in the waiting room where he was enjoying a nice view from the 7th floor and he drove me home, where this post starts … with me feeling okay … I guess … hold on, I’m feeling slightly nauseous..

Lessons In Reactions

2010-08-15T21:26:00.001-07:00

Shortly after I was diagnosed with cancer, someone (I wish I could remember who) told me that Cancer really shows you what the people around you are made of. At the time, I was still kind of freakin’ out about the whole cancer thing, so I didn’t pay as much attention to that as I should have. Yet, (even though I can’t remember who said it) it has stayed with me, and I’ve thought about that several times.

For the most part, I consider myself a fairly good judgment of character. Granted, I’ve been wrong a few times – but more times than not I can tell the bad apples from the good. (My problem, I think, is that I usually try to see the good in everyone and from time to time that gets me in trouble.)

Anyway … since cancer came into my life, I’ve been surprised … more than once. In fact, I’ve had several lessons about what people are made of just from how they reacted to the news.

The worst reaction (of people I know – either in real life or online) was … and I quote … “How dare you do this to me.” I’ve had problems with him before … so this sort of came as no surprise.

I also had a complete stranger leave a comment (which I did not approve, so it never got posted) saying that I deserved to be in as much pain as possible because I was an abomination, quoting several passages from Leviticus, and telling me that this was God’s punishment for being such an evil, vile person.

I didn’t pay her much attention … trust me, being HIV Positive, I’ve heard much worse.

Until my brother was diagnosed with esophageal and liver cancer several months before I was … I haven’t really known anybody who was dealing with major cancer issues. Sure, I’ve known a few people over the years who were already cancer survivors before I met them …

I even knew one person from online many years ago who was diagnosed with breast cancer and had to have them removed, but she lived a thousand miles away from me and she didn’t talk much about it. At least, not publicly … and not with me.

One of the things that did surprise me, though, was the number of people around me … that I really didn’t know … that have offered me a kind word, moral support, or encouragement whenever I’ve needed it. I’m talking to people like some of my Facebook friends … some of them I’ve known and talked with before … while others I only know through playing games like Farmville …

One of them made the comment about a week ago that he never really thought all his Farmville neighbors … or, all his Mafia Wars family … YoVille neighbors … or whatever other games he likes to play … that they’re all real people with real life problems. Now, I know I’ve been a little more open about my dealing with cancer than most others (I’ll explain my logic behind this at a later time) … and even though I’ve always known this, it’s never really in the front of your mind.

Some of the people I wouldn’t have known if it weren’t for Farmville … are really great people … and one or two of them have been through pretty much what I’m going through …

… and I am really starting to learn why there’s that spark whenever two “C” List people come into contact …

… even if it still confuses me … just a little.

The other group of people that surprised me were members of Hesperia Lodge No. 411, AF&AM of Chicago, Illinois … otherwise known as my Masonic Lodge. Granted, I haven’t been to Lodge since this whole thing started, but when they sent me a card shortly after my surgery which several members had signed … it brought a tear to my eyes. A few weeks later when the Lodge sent me some of the most beautiful flowers I have ever seen …the tears really started to fall.

I’ve been a fairly active member of my Lodge … trying to volunteer doing whatever I can do. Sure, I do a bunch of the small stuff, like helping to set up the tables before dinner … and I am also the Lodge’s webmaster and newsletter editor … but, I’ve always felt like the new guy on the block because I became a Master Mason about a year ago … and many of the others have been Masons much longer than I have been … not to mention that many of them aren’t exactly the type of people who you would think would be friends with … well, someone like me. To paraphrase the situation slightly … what would the owners of one of Chicago’s largest businesses have in common with a guy like me struggling with self-employment barely making it from paycheck-to-paycheck … especially since I have had to turn away clients since this whole thing started.

It also wasn’t exactly surprising (although, in a way it was) when ~~some~~ most of the people I’ve been talking to via those dating/networking sites suddenly became… well … invisible. I get it … nothing’s sexier than getting a horrible, life-threatening disease … Right?

Maybe I shouldn’t have posted on a few of them that I have cancer … but honestly I am on those sites more to make new friends than anything else. And my thought at the time was that …. well, pretty much all my profiles state explicitly that I am not looking for a one night stand … a hook up … that kind of thing. I’m more into friendships … maybe with the possibility of something more … but for me, any good relationship starts with friendship, so that’s what I’m actively seeking.

I am (by far) not the most active or popular person on these websites … but since I disclosed my cancer diagnosis on a few of those sites … I’ve gotten a grand total of one new message. No kidding. One. And from reading this guy’s message to me, it was clear that he didn’t read my profile … we had nothing in common … so I just hit the delete button.

It’s curious to me in a strange way … how different a gay social networking site can be from other sites, like Facebook. Part of me thinks that the gay sites are mainly hook-up sites … and like I said before, it’s not like Cancer is really all that sexy … but at the same time I’m wondering if there isn’t more to it than just that.

Overall … most of the people I’ve interacted with since my Cancer diagnosis have been wonderful. It’s even been interesting to meet new friends I didn’t know I had … and wouldn’t have known they were even there had it not been for all this … even some of the folks I barely knew in real life have started to be there for me – which tells me something real good about them … and even myself. (Hey, I never said I didn’t have low self-esteem from time to time.)

Somehow, I know that things are going to change tomorrow when I finally (sigh) … finally start Chemo and Radiotherapy. Something tells me that I am going to need my friends … both the new ones and the ones I’ve known for awhile … to help me get through this … either by providing moral support … driving me to the hospital in the morning (like my neighbor is doing) … or, who knows maybe I’ll need something else along the way.

The question is still floating around in the back of my mind … are they still going to be there for me once the treatment starts … when I really need them to help pull me through …

… and I sincerely think the answer to that question is yes.

And I can’t even begin to fathom how to tell them all how truly grateful I am.

Friday the 13th

2010-08-13T21:09:00.001-07:00

I’ve gotten quite a few emails today asking how I’m doing … mostly from people I haven’t spoken with or chatted online with in awhile. So, I figured I’d post something here…

Overall, I think I am fine. In three days, I start my Chemo and Radiotherapy. Part of me can’t wait to get started (the sooner it starts, the sooner it will be over) … and part of me is really scared … stressed out … and wants to run away screaming into the night.

I do have to say, though, that today wasn’t half bad of a day. (Friday the 13th rarely is for me, go figure) I had some pain after I woke up and … well … you know … had to do that thing in the bathroom where you sit down … darn, that hurts like [the place where the devil lives] when you have rectal cancer … but a half hour later (translation: once the Vicodin and Aleve kicked in) the pain died down to a dull roar and I was able to get a start on my day.

I even felt strong enough to mow the lawn … do the laundry … and start organizing and cleaning my room. My thoughts were that I have no idea how I will be feeling next week or two (or six) so I might as well try to get as much done as I can … while I can.

In some ways, right now, I almost feel like a guy who is days away from going to jail for six weeks … ok, maybe that’s a bit harsh … how about I feel like a guy who is days away from spending six weeks with his in-laws. Yeah, that might fit better. He doesn’t want to … he knows it isn’t going to be pretty … but he knows if he doesn’t, he’s going to really pay for it later. Yeah, that’s kind of how I feel.

There is part of me (obviously, the the part of me that does not know how to check the balance in my checking account) wants to go out this weekend and do something fun … throw caution to the wind … have a few cocktails … take in a movie … run up to complete strangers on the street, bump them on the shoulder, say “TAG” and then run away and see what they do … do anything except housework, read a book, or watch TV which is really all I’ve been doing since my surgery just under two months ago.

God, has it really been that long? Not quite … but almost.

So, yeah – I guess … overall I’m doing pretty good today.

Radiation Oncology (Part II)

2010-08-10T15:45:00.001-07:00

On Monday morning, I finally went to my last doctor visit before I start chemo and radiotherapy.

The visit started with a CT Scan. I was collected from the waiting room by two young techs and led to a room with a large machine in the middle of it. There, they had me take off my shoes and shorts, and then lay down on the table that would go into the machine once they started the scan. Before they did that, they had to put this thing … kind of like a bean-bag cushion that would harden when they suck the air out of it … apparently it keeps your legs from moving.

Then they hooked an IV up to my arm … which really shouldn’t have been as painful as it was … but whatever. First came the saline solution … you know the stuff they feed you for no reason whatsoever that only makes you want to pee … and then came the mystery fluid that shows up on the CT scan… plenty of which somehow managed to escape the tube before it got to the IV needle and ended up running down the outside of my arm … which I’m sure it’s not supposed to do … but they reviewed the scan results afterword and enough had made it into my arm so they didn’t need to re-do the scan.

Once the pain … I mean, the needle, was taken from my arm, I was free to get dressed. But first … they pointed out to me that I now have several crosshairs (two below my bellybutton … real close to that NC-17 rated area … and one on each side of my body, maybe four inches below where where my belt is) made from some form of permanent marker with clear plastic stickers put over them to make sure they don’t disappear. These will help them know where to send the radiation beams.

Unfortunately, they pretty much told me not to take a bath or shower until this is all over. Now, don’t worry – I can still stand in front of the sink and bathe myself so I don’t end up smelling like the down-wind side of a compost heap on fire.

Anyway … back at the doctor’s office again, I was finally able to see the doctor again to finalize my radiation schedule. Dr. R.O. is pretty sure I’ll only need six weeks of radiotherapy … although there’s no way to be completely sure because he’s a doctor not a psychic … but, I guess I can live with six weeks of radiation.

Before I could go, I wanted to check in with Dr. M.O. (the medical oncologist) to make sure he was ready to start his side of the treatment.

Before he’d be ready to begin, I need to get a picc line installed into my arm, which would either stay in my arm for a week (but then I’d need to get one again five weeks later when I start the second cycle) or it could stay in for the entire six weeks. Because I can think of no good reason to walk around with something sticking out of my arm for a month with no apparent function … I think I’ll have them take it out between cycles.

By the end of the day … I discovered I’m going to have a busy day on Monday, August 16th. It’ll start off at 9 o’clock with me getting my picc line. From there, I’ll head down one floor to have radiation beams sent through me. After then, I head up seven floors (thank god they have these things called elevators in hospitals these days) so they can send something called 5-FU through the newly-installed picc line.

Yes, that’s right. I said 5-FU … (Well, five FU’s back at ya, cancer drug.) … Alright … apparently 5-FU is a drug called Fluorouracil, which makes sense because 5-FU is so much easier to spell.

Today is Tuesday … so I’ve got an entire week before I start therapy. I still have pain every day, although some days are worse than other days… and most days the pain only lasts a few hours. So … I guess it could be worse.

Radiation Oncology (Part I)

2010-08-10T14:14:00.001-07:00

On Thursday, August 5, I had my first appointment with Dr. R.O. (who I am calling that because he is a Radiation Oncologist – those are not his initials – just like Dr. M.O.) and overall I think things went pretty well…

The visit started (after sitting in the waiting room for a short time while I tried not to drive myself absolutely nuts by worrying about what was about to happen) when a nurse came over and asked in a gentle voice if I was ready to head on back. All in all, I probably spent about forty-five minutes with her.

We started by going over my medical history … with her asking me all those questions doctors always ask … like how many times I’ve had surgery … whether or not I have any chronic illnesses … do I have any allergies … what medications am I taking … if a car is traveling westward at 55 miles per hour, when they stop at a rest stop three hours later, would the driver prefer Coke or Pepsi?

After going through my entire medical history (I have business cards with a list of current medications I’m taking, previous illnesses, etc. that make this sort of thing so much easier) … the nurse took the time to sit down and let me know the kinds of things I am about to go through. She did tell me the doctor was going to do a physical examination … and even though I had taken one pain pill about ninety minutes earlier, I decided to take a second one.

After this – she allowed me to ask her any questions I might have. Being somewhere between shock and informational overload, the only question I could come up with was, “Has anyone ever told you that you look and sound just like Patricia Arquette?”

Thankfully, before I could ask that question – the doctor came in.

He started off by going through much of the same stuff the RN did … although he spent a bit more time explaining everything, even going as far as to draw pictures. While there’s no way I could possibly talk about it all here, here’s the gist of the situation.

I will be getting Radiotherapy (which is what they call radiation … and no matter how much I want that to mean I’d be sitting down in a comfortable room listening to my favorite radio stations, that isn’t going to happen) for six weeks. The schedule will be Monday through Friday, then I’ll have the weekend off … so my body can heal itself from the radiation … and then it starts all over again.

I will also be going through two cycles of Chemotherapy – the first cycle will be the first week of radiotherapy … the second will be the sixth week of radiotherapy. Unfortunately, being that he does the radiotherapy and not the chemo – he couldn’t tell me that much about that.

My next step … and I have a feeling this time it really will be the final step … I will have to get a CT Scan. This information they will use to help them determine how they’re going to shoot me with radiation. The trick is to send the beams of radiation to not only where the cancer is, but to the nearby lymph nodes (because if the cancer was going to spread, it would start with the lymph nodes) … but, without hitting anything that doesn’t want or need to get hit.

After that … he tells me I’ll finally be ready to start my treatment.

I’ll believe that when I see it.

The Ballad of the Bad Resident…

2010-08-08T07:13:00.001-07:00

(origionally posted as My Life On The “C” List Part IV)

Isn’t it kind of funny how the thing you like best about a doctor can also be the exact same thing you hate the most?

With Doctor M.O. (I call him that because he’s a medical oncologist, not because his initials are MO) the thing I like the best about him is that he takes the time he needs with each patient. He isn’t one of those quick-in quick-out kinds of doctors. He’ll sit down and talk with you about things, discuss everything as thoroughly as possible and make sure everything is alright before letting you go. On the other hand – the only thing, so far, that I don’t like about Doctor M.O. is that he takes his time with each patient … including the ones he saw before you (which means he can run a few minutes late.)

Yeah, sigh, a few minutes (cough snort) …

Today, I had an appointment with Doctor M.O. at ten o’clock. Personally, I don’t really care what time I actually see the doctor, because like I said, I know he’s going to spend quality time with me.

After getting my weight taken (201, down from 213 on my last visit three weeks ago) … my blood pressure taken (137 over 92) … and my blood work done (everything was great!) … I was ushered into one of the rooms and informed the doctor was running a little behind (cough snort) and he’d be in to see me soon. I sat down, started reading a several-months-old magazine article on Glee, and was halfway through when one of Doctor M.O.’s residents came in … started asking me a bunch of questions and writing notes in my file … and then … and then … Corky will panic in … 5 … 4 … 3 …

Resident begins to tell me about my options … and he says I have two. The first option is to completely take out the colon, rectum, and anus, seal everything up, and I’d go around with a bag strapped to my leg for the rest of my life. The other option is to do chemo and radiation for a few weeks to shrink the cancerous abscess, and then I’d be scheduled for surgery to have just the abscess removed. But, he tells me, there would be a high chance that I wouldn’t heal from this surgery, so they would have to cut me open yet again to take everything out and I would … just like the first option … end up with a bag strapped to my leg for the rest of my life.

And then Resident was out the door and I was alone to … well … panic.

Half an hour later, when Doctor M.O. finally comes in, and as I am trying to wipe my tears off my face with my shirt sleeve, Doctor M.O. asks me what’s wrong. I’m trying to pull myself out of Panic Mode, but when I start to tell him about what the Resident said I felt like I was slipping back into it again. Honestly, I don’t know if I was making any sense at all –the good Doctor had absolutely no idea what I was talking about. He starts flipping through my chart reading what Resident wrote while trying to calm me down and assure me that Resident shouldn’t have said any of that to me and that he sees no reason why I would need any surgery unless my cancer doesn’t respond to the therapy … and he said there was only a slight chance of that happening.

Once I was finally calmed down, Doctor M.O. checked me out from head to toe … and told me I was doing very well. The next step for me is to see the Radiation Oncologist who would examine me, too … and he wants me to start Chemotherapy and Radiation as soon as possible.

I had been thinking I was going to find out today when I would be starting Chemo … and I had assumed Radiation, too … but I guess that all now depends on how things go later this week with the Radiation Oncologist.

Fear

2010-08-08T07:09:00.001-07:00

(origionally posted as My Life On The “C” List Part III)

I have to admit it. I’m kind of scared right now.

Tomorrow is going to be the big day … the day I get to see the oncologist for the last time before the chemo/radiation hell starts. It seems like it’s been forever since my last visit, although it has only been a few weeks. This should have happened a lot sooner, however due to a slight misunderstanding between the oncologist’s office and myself about a missed appointment that set things back a week … and some difficulty in getting medical stuff from the hospital that did the surgery to the hospital doing the cancer treatment … well, let’s just say things haven’t been progressing as quickly as I would have liked.

Honestly, I’m not totally sure where this fear is coming from. For the past several weeks, I’ve been preparing myself … if that’s the right word for it … for what I know is about to come. So far, the only thing all the doctors I’ve seen over the past few weeks have agreed upon is that it’s going to get worse before it gets better. The radiation, they tell me, is going to hurt … they say it’ll irritate the cancerous abscess and most likely make that area swell up … but without the radiation the darn thing won’t heal. Hopefully that won’t last too long.

Then again, I’ve been in so much pain the past couple of months … especially when I have to … um … go number two … which unfortunately human beings need to do every day … I’m almost starting to think I’ve gotten used to it.

I also know that the chemo isn’t going to be a walk in the park either. I know it’s going to leave me weak and drained for a day or two … they say I probably won’t feel like eating … but within a few days that’ll go away until the next cycle starts. Hey, looking on the bright side … maybe this will help me lose that last 20 pounds I just can’t seem to take off. Size 34 jeans, here I come. Hey, I still have an old pair of Size 32 pants I just haven’t been able to part with – so you never know…

But, as I’ve said … over the past several weeks, I’ve been trying to prep myself for the time when the treatment will finally start … and right now, my attitude is somewhere between “Bring It On” and “Can’t we get started already?”

So, why do I have that feeling in the pit of my stomach … you know, the one you get right after you step on the banana peel, but before you hit the ground, when all you have time to do is think, “Holy Sh…” before you try to stumble into the bathroom for some Aleve.

Well, wherever this fear is coming from … I have a feeling I’ll get through this …

Somehow …

The Tale of the PET Scan

2010-08-08T07:06:00.001-07:00

(originally posted as The Tale of the PET Scan)

Going in to have you pet scanned can be a scary ordeal … especially if you don’t have a pet. For a few days, you talk with your friends, to see if you can borrow their pets. And, Sure, your friends will tell you that you can borrow their cat or dog … but when the day finally comes around, you’ll find yourself sitting in the waiting room without a furry creature to try and pass off as your own and… yeah, I know … I’m joking. (Although, I do believe that pets can make ANY situation better.)

When your doctor orders you to get a PET Scan, he’s not going to tell you much about it. If you’re lucky, he’ll inform you that a PET Scan is a very good way to scan all your internal organs to see if they have cancer. Personally, I think that’s all most doctors (or, at least most of the doctors I’ve recently seen) know about it.

Everyone else, It seems, thinks they’re an expert on it.

In the week prior to my PET Scan, I heard so many stories about PET Scans… about how they will hand you a glass the size of Volkswagen Beetle filled with a liquid that takes like crap (if you’re lucky, you’ll get a flavored one, which tastes like cherry or grape flavored crap) and expect you to drink it until you just can’t take it anymore, and then, when you’re one step away from puking all over the person who gave it to you, they’ll hand you another one … about how they will strap you onto this table that jerks you around like it were a carnival ride while telling you to hold perfectly still … about how the machine that they stick you into is about as loud as a jet engine … about how … well, let’s just say you’ll hear nothing but horror stories.

You’ll also get a few weird stories too… about how someone went through an airport after their PET Scan and was detained by security for twelve hours because they had set off some kind of sensor … or about this lady who’s prescription medications caused an interaction with the drugs they gave her during the pet scan and she died … or … sigh …

Honestly, though … the reality of the situation isn’t nearly as bad as any of that.

The day before the PET Scan, I was called by the people doing the procedure and was told to report to the Emergency Room at two o’clock. However, there were a few things I needed to do first. For twenty-four hours before the procedure, I had to be on a No Carb diet. This, I found out, is nearly impossible because everything seems to have some carbs in it. After reading food boxes for several hours, I was finally able to figure out how to eat dinner.

The only other major thing was that I was not to eat or drink anything other than water for eight hours before the procedure. Personally, I think they need to pass a Federal Law that states these kind of tests must be run first thing in the morning because forcing patients to go without food for that long while being awake is akin to cruel and unusual punishment. However, I did wake up early in the morning (I’m NOT a morning person) and ate some breakfast (it felt like a last meal) … and then tried to go back to sleep (key word, “tried”).

After what felt like two years had passed, it was finally two o’clock, and I entered the emergency room of the hospital and told the nurse at the little window I was there for my PET scan. Because that was the exact place I was told to go over the phone, the nurse informed me that I was in the wrong place and I needed to go somewhere else. When I finally arrived at that other place, I had to take a number and sit and wait and wait and wait until my number came up and I could start to fill out the paperwork so I could get my PET scan.

I was still filling out the paperwork when the guy came to get me to take me to the PET Scan Waiting Room, which was really nothing more than a windowless space with a few chairs. Eventually, someone else came to get me and took me out to the parking lot.

Yes, I said “the parking lot”.

Because that is where PET scans are performed these days.

When I inquired about this, I was informed that because PET scan technology is so new, and because many of the hospitals could not afford to buy their own multi-billion dollar PET scan machines, they hired another company to do the scans. The machine was located in the back of a big-rig trailer, which went around from hospital to hospital or wherever they’re needed.

Once inside the trailer, I was asked a ton of personal questions (short of my shoe size) and had my blood taken. With this blood sample, they were able to measure how much “stuff” I was to be given, as well as what my blood sugar was because apparently that’s important too.

When everything had checked out, they then injected me with what they called “radioactive sugar water” and sent me back to the PET scan waiting room.

A half hour later (actually, thirty-five minutes, if anyone was counting) they came and got me and led me to the bathroom. Apparently, this sugar water goes through your system fairly quickly and builds up in the bladder, which causes it to light up like a light-bulb during the scan.

Having successfully peed, I was then led to the machine where I was strapped to the table where I was gently glided into and out of the PET scan machine with my hands raised above my head. Five minutes until the end of my scan, my nose started to itch. Daring to move slightly, I tried to scratch the itch only to learn my arms were both asleep.

Before long, the scan was over … the lights came back on … I was unstrapped from the table. However, before this would happen, I was told there were a few things I needed to know.

The two big things were to go to the bathroom as often as I can so the radioactive stuff they shot me with could work its way out … and I could not hold any new-born babies for at least twenty-four hours because I was radioactive enough to effect toddlers but not, apparently, anybody else. (They explained that most people hold babies very close to the bladder, which is filled with the radioactive fluid, and because babies bodies are still developing, it could cause problems.) Anyway … not a problem for me …

But, it did make me want to stay clear of those new airport scanners for a while… just in case.

Squamous Cell Carcinoma

2010-08-07T09:02:00.001-07:00

According to both the CDC and the Mayo Clinic, Squamous Cell Carcinoma is the second most common skin cancer. (The most common being Basal Cell Carcinoma.)

Most cases of Squamous Cell Carcinoma involve the skin (although it occurs in the lungs, cervical, genital, oral and anal regions as well.) The number of cases has been increasing every year, most likely caused by prolonged exposure to ultraviolet (UV) radiation (from sunlight or tanning beds), which seems to be the leading cause for this type of cancer.

Another leading cause of Squamous Cell Carcinoma is HPV, the Human Papillomavirus.

According to the American Cancer Society, there are many different types of anal cancers (and benign or non-cancerous anal tumors) … The two most common are the Squamous Cell Carcinoma and the Cloacogenic Carcinoma (or Basaloid or Transitional Cell Carcinoma), which are sometimes labeled as a subclass of Squamous Cell Carcinoma. Rarer forms of anal cancer include Adenocarcinomas (which is usually a form of colon cancer) … Basal Cell Carcinoma (usually a type of skin cancer) and Malignant Melanomas

Risk Factoids…

While it is possible for both men and women to get Squamous Cell Carcinoma, it is more common in men, especially those older than 50.
Light skinned, fair haired people seem to be at a greater risk than dark skinned or dark haired individuals … especially if you’re the type of person that sunburns easily.
Geography does seem to be a factor in Squamous Cell Carcinoma cases. Rates appear to be much higher closer to the equator – presumably because UV Radiation is so much greater and people in those regions tend to spend more time outdoors.
People with a history of cancer (any type) have a slightly greater risk of being diagnosed with Squamous Cell Carcinoma. Also, the reoccurrence rate is substantial. Another risk factor is exposure to radiation, which is used to treat cancers (as well as certain other benign conditions.)
Those with a history of HPV-related outbreaks (especially genital warts) appear to be at a higher risk as well.
People with compromised immune systems (such as from cancer treatment, advanced stage of HIV infection, or those who have recently underwent a medical transplant) are at a greater risk as well.
Usual Cancer Risks, such as exposure to carcinogens, smoking, etc.,

Treatment…

The procedure for treating Squamous Cell Carcinoma is usually going to be the same, no matter whether it’s oral, genital, anal, or skin cancer. Treatment often starts (depending on the location of the cancer) with surgery to remove the effected area.

A combination of chemotherapy and radiation therapy has also been proven effective.

As is probably true with most forms of cancer, the earlier it is caught – the easier and more successful it is to treat. In most cases, Squamous Cell Carcinoma has a fairly high successful treatment rate. The numbers have varied between the various doctors I have spoken with … as well as websites (such as the American Cancer Society, the CDC, Mayo Clinic, etc…) … from stages 0-3, the success rate appears to be close to 90%. With stage 4, that number drops to between 25-50%.

HPV (The Human Papillomavirus) 101

2010-08-06T16:24:00.001-07:00

According to the Journal of the American Medical Association, the Human Papillomavirus is believed to be the most common sexually transmitted disease in the United States. Yet, for some reason, it often seems to be the least often talked about.

There are (according to the CDC) over 200 forms of the Human Papillomavirus (which, from here on out I’ll call HPV because … well … it’s easier to spell). Most forms of the virus are fairly harmless, and in fact you probably won’t ever know you have them because they really don’t do much of anything. The concern mainly comes from around thirty to forty types of the virus, which are usually sexually transmitted.

The most common problems associated with HPV are cervical cancer in women, and anal warts and anal cancers in both genders. Oral and throat cancers are also somewhat common. However, it’s the cervical cancer that appears to get the most attention.

When it comes to treating HPV, there really are no options. There is no cure. The only thing is the vaccine. However, the vaccine only works before an active outbreak and is ineffective once symptoms appear. Otherwise, there is nothing that can be done, except for treating the complications (warts, cancer, etc…) once they appear.

Anyone who searches the internet for information for HPV is bound to find that most of the information available is geared more toward women, especially dealing with the link between HPV and cervical cancer. You’ll also see quite a bit of information geared toward problems like anal warts.

Information about HPV in men … information about HPV and genital/anal cancer … well, it’s a little harder to find. (But, don’t worry – it’s out there.)

When it comes to men, genital warts are the most common. If caught early, they are easily treatable. Many have had success using ointments and creams (prescriptions). Larger warts can be frozen or cauterized off. One word of note here – these warts do frequently come back at some point. In some cases, they could return immediately after treatment while for others they could return years later.

Genital or anal cancers in men isn’t exactly common, but it’s not all that rare either … well, as far as cancers go. It does seem that more and more men are being diagnosed every year. The CDC estimates that this year (2010) over 2000 men in the US will be diagnosed with HPV related cancers.

Under normal circumstances, the immune system does a fairly good job of fighting off the virus. The largest group of people at risk for HPV complications are those with suppressed immune systems (such as those with advanced HIV disease.)

If you would like to know more about HPV and cancer, there are two websites worth checking out.

First is the National Cancer Institute at http://www.cancer.gov

Second is the American Cancer Society at http://www.cancer.org/

My Life On The “C” List … The Blog (Part II)

2010-08-06T06:58:00.001-07:00

(origionally posted as "My Life On The "C" List (Part 2) …)

After writing my last post, My Life on the "C" List (Part 1) … I started thinking about the nature of the club I just inadvertently joined. It's starting to become fairly clear to be that there is something different about being on the "C" list … as opposed to being on other similar lists, if they even exist. Do people diagnosed with other illnesses get to be on the same kind of list? For some reason, I don't think so. Or, if the list exists, I don't think it's exactly the same.

In the first week of July, 1994, I was diagnosed with AIDS after having spent the better part of the entire month in the hospital. First, I got the flu, and then the appendix ruptured. I got the flu again after that, and then it was pneumonia. And not just any pneumonia – it was pneumocystis pneumonia, or PCP … the kind you get with advanced HIV disease. Oops. Because my last HIV Test, which had been six months prior to this, was fine (negative), the doctors put me on some pretty awful pills (HIV Meds back in those days were NASTY!) and pretty much told me I had about six months, if that, to put my affairs in order.

To make a long story short, I pretty much told that doctor where to go and shove it and went looking for a better doctor. I like to think I found the best one Denver had to offer – he sat on several HIV-related boards, spoke at the National HIV Conferences… I figured he knew what he was doing. Sixteen years later, I'm still here, so I think that was the right decision. (That's Doctor Greenburg!)

Anyhow … being on the HIV/AIDS List isn't anything like being on the "C" List. While I am not trying to compare AIDS with Cancer … they are two completely different things … they do have a few major similarities. Namely, they're both horrible incurable diseases (although, with the right treatment plan, both can be highly manageable) … both diseases have killed a great number of people … the treatments for both diseases can be fairly severe …

One of the major differences between the two "Lists" is that you rarely, if ever, see anybody on the "HIV/AIDS" List. How many HIV Positive celebrities can the average person name? Rock Hudson, maybe? Or, sports stars like Magic Johnson or Greg Louganis? And … Um … Ok …

What about celebrities on the "C" List? Well, there's Suzanne Somers, Olivia Newton-John, Melissa Etheridge, Sharon Osborne, Jerry Orbach, Colin Powell, Arnold Palmer, Lance Armstrong, Sheryl Crow, and … and …. Goodness, I could certainly keep going, but you get the point.

Is this just a case of more celebrities having cancer than celebrities having AIDS? Maybe. But I am not totally convinced.

I would be lying if I said there still wasn't a certain stigma attached to HIV/AIDS. This has been going on since the early days of the epidemic when the largest number of people testing HIV+ was gay men and those doing intravenous recreational drugs – not exactly the most accepted groups by society at large. Even today, that sentiment remains, even though the statistics quite clearly state otherwise. Maybe people have been saying that for so long that it is hard to convince them otherwise. Or, maybe people just don't like these groups and are still trying to find an easy thing to strike them down with.

When I was first diagnosed with AIDS, it was hard for me to find someone to talk to … someone who had been through it and knew what I was going through. Now, bear in mind, I was diagnosed in the early 90s, before Protease Inhibitors and other meds came out that have helped expand the life expectancy of people living with AIDS, but it wasn't quite like it was in the very early days when nobody really knew what was going on. However much I tried, I it was very hard to find someone I could relate with. I tried being open and honest about my status, however that seemed to make a lot of people run away screaming. I tried going to support groups, but found very little support. (Most were nothing more than moderated complain and moan sessions.) I talked with doctors and psychologists … but … for the most part, I was left to figure things out on my own.

Having worked in more recent years around HIV/AIDS Education and case management type services, I've noticed things have gotten a wee bit better … although in my humble opinion, it could still get quite a bit better.

Whatever the reason, people with HIV/AIDS get much different reactions from people (in general) than people do with cancer.

It does make me wonder, though … What about other illnesses? Do people with, say MS have the same kind of network as people with cancer do? How about slightly more common diseases like Asthma or Diabetes? Parkinson's? How about Mental Illnesses like depression or bipolar disorder? PTSD? … Any other diseases …

Quite frankly, I don't know.

And I wonder what that means.

My Life On The “C” List … The Blog

2010-08-06T06:55:00.001-07:00

(origionally posted as My Life On The "C" List (Part 1)…)

Before I was diagnosed with Cancer, I was completely unaware of The Club. Unlike any other club, they don't have meetings and minutes … there's no website … no contact person whatsoever. They won't call you on the phone to ask you for money … or, for any other reason for that matter. There are no dues or fees to pay. No secret passwords or handshakes to learn. Its members include people from all walks of life, all nationalities, all religions, all races… Among its members, you will find politicians, celebrities, and the social elite … as well as the common folks, too, from housewives to business owners, or even the transient or homeless. There is no official membership list for the Cancer Club … but if there was one, I'd call it the "C" List.

But, the thing is … The Club is one of the most powerful clubs that ever existed. (ok, well maybe not. Kind of all depends…)

The only way to join the club is to get diagnosed with Cancer. And once that happens, your name is on the list…

You'll see evidence of the club whenever two members come into contact with each other. You will see a twinkle in their eyes, a knowing smile, maybe a pat on the back. You'll notice something in the way they talk to each other.

Once you become aware of just how powerful this club is … you'll start to see evidence of it everywhere. You'll see people finding each other at the bus stop on your way to work … you'll see it in the coffee houses … you'll even see it on television. You'll see it whenever someone finds out the person they're talking to has cancer.

When I was first diagnosed with cancer, it seemed as if every member of the club wanted to talk to me. I had family members who wanted to call me on the phone and talk … internet friends who wanted to chat … even complete strangers who sent me e-mails. At first, I was grateful. Here I was going through a rough time, and people wanted to check in with me and see how things were going. And they knew what I was going through, more or less, because they had been through something very similar.

But, therein also lies the problem…

They also wanted to tell me their cancer stories, including all the horrible stuff they went though. Sure, I get it … cancer treatment is rough, and in their own way they were trying to prepare me for what lies ahead once I start treatment. However, one can only sit through so many stories like … how much pain they were in after the radiation therapy … or how long they spent puking after chemotherapy … or how they looked at themselves in the mirror and noticed their eyebrows had fallen out … or … well, you get the picture. Several times now, I've gotten to the point where I start thinking that if I hear one more horror story about cancer, I'm going to scream!

Really, I don't want to sound ungrateful … because I really do appreciate what they're trying to do … and yes, the more stories I hear, the more I realize I'm not exactly alone with this … and I do think that makes a big difference … but, if I hear one more horror story, I think I just might go Stephen King on you… (not really, I think)

The only thing I don't understand yet … and maybe I've been missing the point here … are the endings to the stories. You see, all the cancer stories I've heard so far pretty much follow the same plot-lines. The stories begin with someone finding out they have cancer and freaking out a little bit … then they start learning about their disease … then they start treatment, and at the same time, go through a living hell … and then the stories end with pretty much the same statement. "It's definitely worth it."

Ok, maybe I've watched too many movies and am waiting for that moment … the one in every film … where the orchestral music starts playing loudly … the main character stares off into the distance … and he has that big revelation so that the movie can continue with the next scene. Yeah, I know … that doesn't happen in real life (except, maybe, to schizophrenics, which is an entirely different thing all together). But, I still just can't see how we got from horror to "it'll all be worth it."

Yes, there are days when I am so scared … or, in so much pain … I'm so frustrated … that I have started to question this whole "worth it" thing. And I haven't even started my treatment yet. The only thing everybody seems to be in agreement on is that it will get worse before it gets better.

Maybe there's some unseen benefit from being on The "C" List that I just haven't discovered yet. And I'm starting to think that's a real possibility.

My Life On The “C” List…the blog

2010-08-05T21:10:00.001-07:00

Several weeks ago, I started blogging (on my other blog) about my recent cancer diagnosis and everything I've been going through. At first, I thought it was just going to be a way to let my friends and family know about what was going on with me. It didn't take me that long to realize that me blogging about cancer was going to turn into something much more than just that.

It may take a little time, but … eventually all the posts from the other blog will be posted here … along with a few posts that never got posted (mostly because I never got around to finishing writing them) … so, I guess – without further ado…

How It All Began…

(originally posted as A Medical Nightmare)

A month ago, I went in for what I thought, at the time, was going to be simple, routine surgery to have some warts removed. The doctor who would perform the surgery said that all they were going to do would be to numb the area, cut and cauterize and I'd be out of there within two hours.

The morning of the surgery, I wasn't all that worried. Sure, I get a little nervous whenever undergoing any kind of medical procedure, but I'd had warts removed before and didn't think it was going to be a big deal. So, I tried to relax as much as possible as they took me into the little room to take off my clothes and put on those lovely hospital gowns that make it hard not to moon people… I was fairly relaxed while I waited for the surgical team to come and get me. I was in a little pain from the wart problem – but I knew that the surgery would make everything better.

Eventually, they took me into the operating room where they gave me a shot in my arm that would relax me before they helped me sit up so they could transfer me to the operating table. Then, they gave me a shot in my back to numb the area they'd be working on. And then it all went blank.

I woke up in the recovery room, slightly disoriented. Then I discovered I couldn't move my legs. I tried to calm myself, telling myself that I just had surgery on my butt and maybe that was normal. Then, I noticed the clock on the wall. Confusion came back when I saw it was several hours later than I thought it would be. I asked the recovery room nurses what had happened, but they didn't know anything. All they could (would?) tell me was that the surgery went alright … and as soon as I could feel my legs and go pee, I'd be able to go home.

Looking back at it now, I think I always realized something was wrong. Before the surgery, I just figured that came more from my nerves than anything else. But now … I kind of wished I had listened to that voice a bit earlier.

Once I had met the two criteria for them to release me, they allowed my roommate to come in and start the procedure to let me go home. While we were waiting for paperwork, he told me the surgeon had come out to see him after the procedure and told him that things were a little worse than they had thought. Hiding behind one of the larger warts was a fairly nasty abscess. They took a sample for biopsy and wouldn't know any results for couple of weeks.

Those two weeks were hell.

Having worked around HIV Education for most of my adult life, I knew all about HPV, the Human Papilloma Virus. The big thing about HPV is that even though most HPV outbreaks are benign, several types of Cancer are directly related with HPV.

So, needless to say … I knew cancer was a possibility. I never thought it was a probability though.

When the biopsy results came back two weeks later as Cancer, it felt like the world had dropped out from under my feet. Over those two weeks, I had kind of convinced myself that everything was fine. The abscessed ulcer was just a normal ulcer … caused by all the stress I'd been living with … nothing to worry about.

Then to find out I have cancer … Yikes!

As I write this … it's been a little over two weeks since I found out I have cancer. In many ways I am still trying to figure things out. In a way, I am still panicking… But, I should get though this… I hope…

The thing that sucks the most (well, other than having cancer) is waiting. I was told over the phone and had to wait almost a week before I could meet with the oncologist to know anything (other than what I learned from Google) about what kind of cancer I have … But, the oncologist couldn't tell me much because he wanted to run a PET Scan and see samples from the biopsy. So, we have to wait for that. Once he gets all the information he needs, I'll finally get to find out just how bad the cancer is … and what the treatment options are. So, yeah … waiting sucks.

While I wait … I'm trying not to dwell too much on it. I'm trying to keep my mind and body as occupied as they'll let me. I'm still in some pain, so I have to sit and relax a bit more than usual … which only gives me more time to sit … and hope I don't freak out too badly.

Nah … I think I'll be ok.