Wow. It's been a month!

It's been a whole month since my last update. Sorry about that. Truthfully, I haven't felt like updating for a whole slew of reasons - but the biggest has been that I just haven't felt like it.

It's not apathy on my part, or even neglect... it's been related to my therapy.

You see, I've been struggling the last few weeks with my new Tamoxifen regimen. I've been battling some depression and fatigue and - creatively - I've been suffering.

I reached the lowest point of it two weeks ago. I called off work because I felt overwhelmed and depressed and just emotionally tired and beat up. Michelle was understanding, but I could tell that it was starting to wear on her.

I am by nature quiet and taciturn, but I am a different person when I'm with my wife and kids. I'm funny, I'm strong, and I am allowed to be myself. Unfortunately, the Tamoxifen turned me into someone else. I was - for the first time in my life - one morose motherfucker. I was bouncing between emotions. At times I was so sad that I wanted to break down into tears, at others I was a total cranky dick. And I couldn't, for the life of me, stay awake past 7 o'clock. I was yelling at the dogs, the kids, Michelle, and anybody who gave me grief. I was wrapped in an introspective black cloud that was so cloying and tight that I felt like I would burst from it's dark embrace.

Fortunately, I saw my doctor on the 5th and explained how I was feeling.

As I've said before, my doctor was really unsure what to do with me. I'm the youngest male breast cancer patient she's ever dealt with and was kind of guessing as to my treatment. When i saw her on the fifth though, she had much better news. She had gone to a conference a few weeks earlier and discussed my case with two of the eminent male breast cancer doctors in the country (one was from Sloane Kettering and the other from the Dana Farber Institute). They all decided that the Tamoxifen was the best course of treatment.

I was fine with this, but told her there was no way I was going to stay on it if it continued to make me feel as bad as it did. She understood and altered my course of treatment a little bit. She said that the Tamoxifen was doing what it was supposed to. It blocks the receptors for estrogen in my body, which means I simply excrete it and it drops my free estrogen levels down to nothing.

The problem is that I also have low testosterone.

This, by the way, is why she thinks I got the cancer in the first place. Since my testosterone level was so low (it's called hypogonadism), it opened the door to estrogen, which formed the breast tissue and the resultant cancerous tissue.

So - she recommended that I resume taking a testosterone supplement I was on prior to my diagnosis. Prescribed by my regular doctor, the testosterone supplement (Androgel) was prescribed in an effort to help me lose weight. Dr. Teston, after reviewing my case, felt that Ii was bottomed out on all of my hormones - hence my depression and fatigue. The Androgel with the tamoxifen, she said, was the best course of treatment possible for me.

"Start taking the testosterone again and I bet that, within a few days, you'll feel much better."

And she was right. Within two days of restarting my Androgel, I felt a lot better. I'm actually feeling creative and happy and not at all overwhelmed. I'm almost back to normal.

Looking back on hat black period, I know that I was overwhelmed largely because I was frustrated and upset that I wasn't snapping back as quickly as I should have been. I know it's borderline stupid to think that I can just jump back into my life like nothing ever happened, but at the same time I am frustrated because I can't get my life back on track.

My whole cancer situation seems so surreal now. People ask me all the time how I'm doing, how I'm feeling. i respond that I'm good and that I'm cured. But Ii still have doubts and the fear that my life has been shortened somehow. I ache to think that I may not live to a ripe old age and that Michelle and the kids will have to go on without me.

So you can understand why I was in such misery.

Fortunately, I'm through that little patch and have regained some semblance of who I used to be... but I wonder how much longer this road will go on.

Other updates:

My liver ultrasound results showed a small spot on it. Doctor Teston said she thought it was a small hemangioma that's been with me since infancy. It's benign, but she thinks that it may have caused some of my hormone problems. Apparently, when it presents in the liver (that's the second most common place for it behind the skin of the back and face)it will cause elevated liver enzyme function and disruption of testosterone or estrogen absorption. So there you go. As Michelle said, "And it took all of this for them to figure that out? You went to a liver specialist, had a liver biopsy and a slew of tests a few years ago, and NOW they figure it out? Fucking doctors!"

I couldn't agree with her more.

Either way, they want me to do an MRI in November. I said, "Why the hell not?!? I've already reached my limits for my health insurance. It doesn't cost me anything. Run your tests! Have fun!"

I was also recently contacted by a woman named Cathy who lost her husband to male breast cancer a couple years ago. She runs a site called Out of the Shadow of Pink and is toiling tirelessly to raise awareness of male breast cancer. She crosslinked with me, and made me realize that I should probably put together a list of links and resources on the side. I'll probably do that in a week or so. In the meantime, I'll post a link to her site and encourage you to check her site out.

Michelle has talked me into doing the Susan G Komen Northeast Ohio Race for the Cure on September 12th. I'll be running the 5k and she'll be doing the walk. I know I said I wasn't going to do these sort of things, but Michelle convinced me that it's a good idea. Besides, it'll give me additional motivation to get in shape.

I , by the way, started training for a 10k in October so, like I said, it'll be a good motivator.

Also - I'll be designing some t-shirts for us to wear. They will not be pink. They will most likely say, "Fuck Cancer". I'll also post a link to the site where I have them made up so you can order your own if you'd like.

Finally - a funny story...

So I like to listen to the afternoon talk show on WMMS. It's called the Maxwell Show. Maxwell, the host, is something of a hypochondriac, and was going on and on yesterday about how he has a growth on the end of his penis. He's convinced it's penile cancer. So they were on the show, looking at WebMD.com, and he said that he didn't believe everything he read on the sites. Whether he was in denial, or it was meant to be good radio... he was totally ditching on WebMD.

For my part, WebMD was the most thorough spot for information I found after The American Cancer Society's site when i was googling 'male nipple discharge'. So, on a whim, I called the show. If you were listening around 6:00 on Monday - you might have heard "Dale from Willoughby" talking about being 38 and having male breast cancer. I was on for only a few seconds... but I encouraged him to take those sites seriously.

So there you go... I'm now an ambassador for moob cancer. A nippleless, formerly depressed, moob cancer radio ambassador.

Yeah!

I do know that they post podcasts of the show online at maxwellshow.com... so I'll try to find it to post up so you can hear.

ANYWAY - TO KIND OF SUM THINGS UP:

I was depressed, I'm feeling much better
I'm trying desperately to get back in shape
I'll be doing the Susan G Komen Race for the Cure
I outed myself and my moob cancer, on the radio, to most of Cleveland during rush hour.

4 Years and 361 Days To Go...

So I met with my regular cancer doctor almost two weeks ago. I haven't updated lately because I, truthfully, have been kind of lazy about it. Sorry.

Anyway, I met with my regular oncologist down at the new UH Ireland Cancer Center down at Chagrin Highlands. My regular oncologist is a woman named Dr. Lois Teston. She's an attractive woman in her mid to late 40's who DOESN'T scare me... unlike Dr. Persons. (Actually, Dr. Persons doesn't really scare me. It's just that she has a low tolerance for my shenanigans and - apparently - a very odd and somewhat vestigial sense of humor. She just doesn't know what to do with me. )

Dr. Teston did a full history of me and my family, or at least as much as I could tell her. I actually haven't spoken to anybody from my mother's side of the family in close to 20 years. There's various reasons for that, but mainly because my mother distanced herself from them and, by extension, so did myself and my sister.

I do know that my maternal grandfather died of heart problems and complications from diabetes. He was a good man who helped pay for some of my college, took me on camping and fishing trips to Thunder Bay in northern Ontario, had a cattle farm in West Virginia where I used to ride horses, and traveled the country. He traveled because he was an engineer who designed the majority of the nuclear plants in North America. He also loved whiskey and developed an Irish brogue when he'd had too much. My maternal grandmother died of heart problems when I was six.

So I have my mom tracking down info on her side of the family.

As for my dad's,the only cancer was with my grandfather. He had stomach, intestinal, and liver cancer and died the weekend of my senior prom. His death was undoubtedly drinking related. Besides that though... the only issue my dad's side has is colon problems. No cancer, just the occasional diverticulitis.

And that's the most confusing thing. There's no reason I should have gotten male breast cancer. In fact, it's even more mysterious because I'm so young. The oncologist said, in fact, that she's had only about 10 to 15 or so cases of male breast cancer in her 20 year career... and the youngest patient prior to myself was 58.

She honestly admitted to having no idea why I, being 20 years younger than that, should have breast cancer. In fact, she admitted at our consult that she had no idea what to do with me. She said she'd need to consult with several other doctors before deciding on a course of treatment.

She was stumped.

So, in lieu of that, she decided that she would follow the regular course she would with any other woman. (At this point, I of course rolled my eyes with manly irritation and growled with undisguised masculine aggression. You know, just like every other time I've been told this throughout this entire frikking ordeal.)

The usual course of treatment means no chemo and no radiation (wOOt!), but it does mean a five year course of a drug called Tamoxifen. But before I started it, she wanted me to get an ultrasound because, as I've mentioned a few times, I have a bad liver.

And Tamoxifen, being a hormone regulator, is processed through the liver.

So she sent me to get an ultrasound of my liver to make sure it's all right and not spontaneously combusting because I've, truthfully, taken to having a few more beers during a week than I normally have been. What can I say, I've been a little stressed.

I actually had a liver biopsy back in 2006 because, in the course of having some regular blood work, my liver function showedd up on the tests like I was in the midst of full blown cirrhosis. The biopsy determined that my liver was clean and pink, just a little bit crazy with its enzyme function. You can read more about that wondrous experience here.

Anyway, I've been really good about not drinking because; a) it was - in my eyes - chiefly responsible for my grandfather's death, hence there's a genetic component not to be trifled with b) I had to get a liver biopsy and, since that sucked ass and I DIDN'T want to get another, it was in my best interest to curb my drinking, and finally- and most importantly, c) Michelle rides my ass about it endlessly because of some nonsense about "wanting me around when she's old and not dead of acute liver failure"... or some nonsense like that.

But, this summer's been a little different. I had a month off and I spent the latter part of that month on my front porch with the wife every night at dusk, having a beer or two. I've grown accustomed to it and we both enjoy watching the kids play in the growing gloom, amidst the fairy twinkle of fireflies. And a beer tastes good then, you know?

So it was with some dread that I went to the ultrasound (which is FREE at this point! We've been getting the panoply of bills from University Hospitals and, at the last estimate, we are somewhere in the neighborhood of $45,000 at this point. Or, another way to look at it is -- each of my flabby man-teats cost me roughly $22,500 each. Were Jayne Mansfield's worth that much? Hell, were Jayne Cobb's? But I digress...)

What I found odd was that I've actually grown accustomed to the waiting rooms, and examinations, and - if they needed to - I'm sure I'd have been like, "Meh." if they needed to hit me with a needle. Like I said, you quickly grow accustomed to the invasive indignity of the institutional medical system and I endured my ultrasound because it was real low - almost non-existent in fact - on the medical discomfort scale.

The only thing that was almost unbearable was the endless chatter of the ultrasound tech. I'm quickly finding that women want to do nothing but talk about all the other women they know with breast cancer and how HORRIBLE it was for them. And I feel somewhat bad saying, "Yeah. that's tough that she got stage three, lost her boobs, and died anyway. By the way, I'm cured."

I think I'm starting to get that I'm part of some strange, scarred, boobless tribe... but I'm still an outsider. I remembered reading about the animosity some male breast cancer survivors experienced from women who felt like this was "their disease" or "their cause". Now I think I truly understand that.

So I went through the ultrasound and got a call back from my doctor 4 days ago.

My liver was fine and, as Dr. Teston said, just "fatty". A direct consequence of modern living and modern diets. Since my love of frothy adult beverages - thankfully - wasn't a problem, she gave me the green light to start the Taomxifen. I filled the prescription and I'm now officially four days into my 5 year course.

Tamoxifen, by the way, is a hormone blocker. I got breast cancer because somewhere in my body (most likely my liver), something was transforming hormones into estrogen. Estrogen goes to the tits and, in men, we get gynecomastia. My gynecomastia and the increased estrogen somehow gave me breast cancer. Tamoxifen blocks the development of estrogen and blocks the receptors for it in my cells. It's really effective, and increases five year survivability rates into almost double digits.

One of the bad parts of Tamoxifen is that it increases the likelihood of blood clots, so I've got to worry about loss of vision, slurred speech, or unilateral loss of motor control. that's right, folks! I've now got an increased risk of stroke and/or embolism. Yay!!! I also, because it's a hormone regulator, now get to share with the feminine gender of the species the wonder and the joy that is hot flashes. I haven't gotten any yet, (of course it's been like 90 degrees here in Cleveland for a week, so I'd have no idea whether or not I was having them anyway) but there's like an 80% chance.

But there are some disturbing side effects I am much more concerned about. They were in big, red letters and the literature made a point of making the side effects really, really, dangerously clear.

I'll quote them from the side effect warning I received with my first dose...

Possible Side Effects of Tamoxifen may include:
- Vaginal Discharge
- Irregular Menstrual Periods
- Vaginal Bleeding
- Ovarian Cysts
- Increased Occurrence and Likelihood of Uterine Cancer

What do you think? Should I be worried?

Not Neccessarily Related...

... but I think it's an important part of the story.

I'm reprinting and revising this from a post I made over on my Doctor Zombie blog back in October of 2006. I feel it's important to relate and let people know about this story because it's the story of how Michelle and I came to be. She's an essential part of why I made it through my ordeal... and without her I'd have never, ever have been able to deal with all that's happened in the last month.

Plus... this last weekend was our 11 year anniversary. I don't know about her... but I'm glad our 10th year is over because the last month of it sucked ass.

For those of you who know the story, I'm sorry. For those of you that have never heard it, I hope you enjoy it and understand a little about how much Michelle and I care for each other. (Or, at least I hope so after all we've been through!)

Michelle and I met way back in the eight grade when Michelle was a young, pretty single girl, and I was a young, single zombie. There was an immediate attraction between us and I did what one did in the 80’s when a boy liked a girl. I asked her to ‘go out’ with me. In fact, we were in our mutual friend Wendy’s basement at a party, dancing to In The Air Tonight by Phil Collins. (It was about the time that the song was experiencing a resurgence in popularity because of Miami Vice). Anyway, I looked into her beautiful, hazel eyes and asked her if she’d be my girlfriend. She said yes immediately, and we exchanged Mizpahs. For those of you who don’t know, Mizpahs were necklaces that were two parts of a heart with some cheesy biblical quote on them. The boy wore one, the girl wore the other, and you were officially branded as “Going Out” with somebody.

It was a halcyonic time for Mrs. Zombie and I. We were a couple, we made out, we went to dances together, she let me get to first base… all the usual stuff one does with their first love. Unfortunately, it would all come to an end as summer neared. Her and I disagree on the particulars surrounding who broke up with whom; but suffice it to say, we went to rival high schools and went our separate ways.

The thing is, we both kept running into each other. For example…

*** I get a high school job at the local Sears store and I’m walking through the stock room, where I run into Michelle. She had just started working there also.

*** One night in High School, I’m sitting in the local Dairy Queen with my then girlfriend, and in walks Michelle. We had a long conversation, and I actually pissed off my then girlfriend for ignoring her to talk to some gorgeous, blond basketball/volleyball player from our rival high school.

*** A couple years later, I’m at Bowling Green State University, rushing across campus with my face buried in a copy of Heinlein’s Stranger in a Strange Land, when I bump into this girl, knocking her books out of her hand. I apologize and bend over to help her pick them up, and I realize it’s Michelle!

Now, not being one to ignore these odd convergences of coincidence, and feeling a weird sort of dizzy happiness because she’d never really been out of my thoughts, I say, “Hey! What are you doing here?” She goes on to tell me, much to my chagrin, that she’d transferred to BGSU to be nearer to her fiancee.

Sigh.

“That’s great,” says I, “Well, I’m sure I’ll see you around…”

So, fast forward ten or so years. Michelle’s husband has left her and she decides to go on a trip and do some soul searching. “What,” she asks herself, “is good in your life now? What in the past has made you happy?” And it is during this time of quiet introspection that she realizes that me, Dr. Zombie’s, always sort of been in the back of her mind. She resolves to track me down and find me once her divorce is finalized, although she’s convinced that I must be married and in another state by now.

Not a week later, she runs into an old friend. Remember I mentioned how I first asked Michelle out? In our friend Wendy’s basement?

Phil Collins?

Sound familiar?

Anyway, this friend happens to be the same Wendy and Michelle asks about me.

“Oh!” Wendy says, “I work with him now at Progressive! Do you want his phone number?”

Two days later, I return from lunch to find a phone mail message. It’s Michelle and we make plans for coffee.

We met on a rainy, stormy fall day. I arrived first and was drinking a cup of herbal tea when she walked into the coffee shop. I caught my breath and felt that same dizzy, giddy feeling I’d felt years earlier. I knew right then that she was going to be my wife. She said she knew at that moment also. We were caught up in the iron grasp of destiny and fate and we realized that our love was meant to be. It was right, it was pure, and we had traveled across oceans of time to be with one another.

It was October 26th 1997 and it was some 15 years after we’d first met one another.

8 months after that, on June 20th, 1998, we were married.

So, Michelle - - I love you baby. You are the bright spark of goodness in my otherwise dark and evil heart. You were and are my destiny and I will always love you. I couldn't have done this without you. Sorry that the "in sickness and health" jazz happened a little sooner than it was supposed to...

Happy anniversary…

Back to work

I went back to work this week.


That's a good thing, believe me.


I was driving Michelle crazy when I was home. I was calling her an average of six times a day to "just talk" as I was bored out of my mind. I was doing things to kill the time like sitting at the kitchen table with a bb gun, waiting for the furry sneak thieves that are the neighborhood squirrels to come to the backyard bird-feeder. I did enjoy getting to spend time with the kids though, but I needed to get back to work for my own sanity.


There's a darker side to that as well. You see, I could get used to not working. I long to spend every day at home, just writing. And Michelle could have gotten used to it as well. She'd never admit it, but I suspect she liked coming home to a clean house, with the laundry washed and folded, and dinner on the table. Although, in retrospect, I didn't get nearly as much writing done as I would have liked. The siren call of the internet got in the way of that, as well as the plethora of zombie and horror flicks that came every couple days from NetFlix. Someday I'll be a famous writer and get to say that writing's my job... but until then I need to slog along like a good corporate drone. Dear dark Pagan gods... save me from a horrible and horrifying life of mediocrity!


Anyway, I went back to work.


It wasn't bad. I jumped right back in and have a shitload of projects waiting for me. The true drama of this week was only tangentially related to my return to work.


I, by the way, had to go get drained on my right side AGAIN this week. This time, Dr. Persons pulled 180+ cc's of fluid from my chest. That's an ungodly amount of fluid. I was really swollen and uncomfortable... but I suspect it was so much because we had some left over from the week before. You see, my mastectomy left what are basically two flaps of tightened, stitched skin on my chest. Because they hollowed out all of the breast material underneath, I have two voids between my skin and the pectoral muscles underneath. My body keeps trying to fill the space between with fluid to help it heal because, as we all know, Nature abhors a vacuum. Anyway, the voids have pockets with healed areas between them.


In my prior post, I mentioned that last week's aspiration (that's fancy, schmancy doctor talk for jabbing someone with a needle and draining them!) was really uncomfortable because of the larger gauge needle and catheter. Well, because it was uncomfortable, the doctor only jabbed me once and drained like a hundred or so cc's. The problem is that we left some fluid under my armpit alone because I was pretty much done with the whole thing, and because - truthfully - my surgeon kind of scares me a little. The pain and discomfort meant I didn't push it, and the result was that I swelled and filled with twice as much fluid as previously.


So, as a result, of these latest shenanigans... I am now wrapped for the next couple weeks with a tight ace bandage. The doctor thinks that, if I stay wrapped for a week or so, the compression on the voids will heal faster and not fill with fluid. Here's hoping it works, because I am so fucking done with getting aspirated!


Incidentally, I was cleared last week to start doing cardio, and that's where I had the most trauma this week. I returned to work, as well as eating healthy. You see, while I was convalescing and off of work, I was eating like a total pig. I took to sitting with Michelle on our front porch every night and having a couple beers. I ate chicken wings, french fries with cheese, and fast food. I was bored stupid, so Meg and I were baking things like homemade cherry pies and homemade granola bars. Fortunately, I only put on about six pounds... but it was disheartening to see the scale go the other way. Especially considering that I had been losing weight because of diet and exercise before this whole ordeal started.


So - I awoke Monday excited to go to work and excited to get back on the fitness wagon. I went to the gym on Monday to do some cardio, and that's when the uncomfortableness started.


For the first time, I had my shirt off in public.


It was weird, it was uncomfortable, and it was much more difficult then I thought it would be. Oddly, I didn't think it would be as bad as it was, because I have always prided myself on my unselfconciousness. Despite my discomfort at revealing my fat... I have little or no problem with nakedness or my body. I come from a family that thinks nothing of going to the bathroom with the door open, was in the theater where there is no modesty when one is changing for the next scene, and have never had any problem with nakedness. I may not be the most physically appealing or endowed of individuals, but I've always felt that one should never be ashamed of their body.


And I realized that I used the word endowed there... that's not what I meant, you dirty minded degenerates! (Although - and this is solely a general observation - all men are concerned about their 'endowments', no matter how they were born. Here's a helpful hint, girls: any man who tells you differently is lying. Every man out there harbors a fantasy wherein he unzips and the woman looks at his most manly of bits with a mix of horror and fascination at its size. It's like the scene from Full Metal Jacket when the Vietnamese hooker refuses to sleep with the black Us GI, crying, "Too beaucoup! Too beaucoup!" All men want their women to, upon first seeing their man's package, scream and cringe because they may have gotten in over their heads at the size of it. But I digress...)


I was talking about my going to the gym...


Anyway, I went to the gym at my usual time and, as I walked down the hall towards it, I started to get that fluttery, jittery feeling you get in your chest when you're about to do something you're nervous about. There was no reason for it, but it was there.


When I got to the locker room, it was the moment of truth. I put down my bag and began getting undressed. My scars are still fresh and red on my chest, so they stand out like a stop sign. I saw several guys nearby give me a double take when they saw my scarred, nipple-less chest... but, mercifully, they looked away in conformance to the heterosexual guy code which says you don't stare at another dude when going to the bathroom, or changing at the gym.


I quickly changed and went out to the gym, where I spent a pained half hour on the elliptical. I had forgotten my iPod, so I tried to read a copy of Outside Magazine. It was an exercise in futility. My entire workout was dominated by thoughts of my return to the locker room. It was a feeling I've never felt before. I was suddenly self-conscious and it was not something I'd ever experienced before.


When I returned to the locker room, I half thought about wearing my shirt to the showers, but decided against it. This was something I needed to conquer. I'd endured weeks of pain and debilitation, this was part of me now and I needed to get used to it. At least that's what the logical, rational part of my mind was saying. The emotional part of me that's still the odd, geeky, Dungeons and Dragons playing high school kid had other things to say about it. I was suddenly different. Not normal. Scarred. Deformed.

And that part of me that longs endlessly to fit in, to be normal, was screaming in a panic.

I stood for a few long moments by my locker, trying to get the nerve to take my shirt off. I finally took a deep breath and, like jumping into a cold pool, stepped off of the ladder into the void. I shucked my short off and, with forced nonchalance, took off the rest of my clothes and stood naked for a few seconds before I wrapped a towel around my waist. I could feel the eyes of all within my line of sight in the busy locker room. Next to me, an Indian programmer from IT apparently missed the Guy Code orientation on the day they went over the staring rule and stared at my chest like a rube at a carnival sideshow.

I grabbed my other towel and made my way across the locker room, my heart racing and beating like a panicked bird in the bird cage in my chest. I made my way to the sauna and found that I was alone.

I took a few minutes to relax in the dry, harsh heat and was blissfully alone. I need to think about lymphodema, and was concerned about the sauna... but wanted to try at least five minutes. I was watching for swelling or discoloration in my right arm, so I was distracted from my discomfort. The sauna, by the way, is one of my few guilty pleasures. I was dismayed when I found out I might not be able to luxuriate in it when this whole ordeal started. I'm, honestly, afraid to give it up because I love the relaxed, cleansed feeling it gives me.

I'm happy to say that there was no adverse reaction.

After six minutes, I got out and took a long cold shower, and then walked bare-chested back to my locker. I even stopped and checked my weight on the scale. I found it was getting easier, but the apprehension was still there. The self-conscious desire to crawl and hide my deformity away from prying eyes was almost overwhelming.

I dressed and returned to work, feeling exhausted and drained by the whole experience.

I know it's still new, and that it will take some getting used to, but it's an alien experience for me to be self-conscious like that. I've joked about showing my chest in bar bets, and am seriously considering getting a whole chest tattoo, but this experience was much more difficult than I thought it would be.

I know it will get easier every time... and will seem silly in a few months.

It has to.

Right?

Some Semblance of Normality

So it's been over a week since I last updated. I'm sorry that I've been so negligent. As I told my friend Amy D. in an email earlier today... my lack of updating has been a direct result of the fact that I've been feeling better.

I started driving on Monday again (Thank the dark Pagan gods! Ia Ia Shub Chthulhu F'tagn!) and have been much more mobile, although I'm quickly learning that I need to be careful I don't push myself to hard. It really pisses me off how this whole surgery has slowed me down. I guess spending a week in bed and another week in a recliner really kicks one's ass.

I seriously get winded walking up the steps from the basement.

I'm also still having some mobility issues with my right arm, but it's getting better. I also still have some nerve damage underneath my arm in the area of my tricep, as well as numbness in a large part of my trapezius on that side. But, on the other hand, I think it's healing as well because today I was in considerable pain where there wasn't any feeling previously. It's like the nerves are healing, waking up, looking around, and saying, "What the fuck happened?!?"

So, it's been like I've been getting stabbed in my armpit all day.

Regarding my last update, I did go and have my chest drained last Friday. My surgical oncologist, Dr. Persons, took about 150 cc's worth of fluid out of my right side and probably 80 out of my left. It was basically a couple beer bottles worth of orange-ish fluid. And it was instant, wondrous, sweet relief. It wasn't until the next day that the pain started, and boy did it come back with a vengeance. I guess jamming a catheter under the skin of your chest and moving it around in the wound cavity underneath tends to irritate things. Who'd have thought, huh?

I had to have my chest drained again on Tuesday of this week. The first time, it didn't hurt at all when the doctor drained it. It was easy as pie. This time though, she used a larger gauge catheter, and it really, really hurt. I'm still sore from Tuesday... but it's the last time I'll have to have things drained. (Or is it the last time I'll LET them drain it? It's one of the two, I can never remember which...).

Like I said, the doctor's confidant I'm clear of cancer, but I'll be meeting my actual follow up oncologist on the 29th and we'll know then if she wants to do chemo or anything like that. Also, I've got to call and make an appointment to get genetic testing. It's odd that someone as young as myself got breast cancer, and my oncologist wants me to see if I carry the BRCA1 breast cancer gene. If not for myself, but as a heads up to my sister, or my daughter. Although, I believe (As well as my regular doctor) that the cause is going to fall on the side of my bad liver. We'll have to see...

Also, when we were at the office on Green Road on Tuesday, I made a point of tracking down my regular doctor, Dr. Robert Cirino. I felt it necessary to sincerely thank him and shake his hand for being so thorough and insistent that I follow through with the tests and exams. If not for his persistance, I might not be a cancer survivor today. Who knows... if I'd waited even a few months I could be dying. That's a sobering thought, and a lot of the credit for my being cured falls into his hands. And, get this -- if I didn't already really like the dude as it was -- when I went into his office, he had a radio on and was listening to The Cure's Standing by the Sea CD . Anybody who digs Robert Smith and the groovy bass goodness that is Lol Tolhurst is good people in my book. The best kind of people, in fact...

Michelle and I have been really introspective about the whole experience this week. For her part, she's been especially stressed and blames it on having to deal with the aftermath of the surgery, as well as having to have been strong for the first few weeks. And I get that, really. We are both also finding we have little tolerance for some people. What I mean by that is that we have a different perspective now. People getting mad and screaming at the Starbucks because they ordered their latte with skim milk and not cream are now suddenly intolerable. Or, take couples who fight about stupid little things that, in the grand scheme of things, DON'T MATTER. We both have to fight the urge to just shake them and tell them that the little shit's just not that important. Life's fleeting, enjoy each other and your life as long as you can. Someone could tell you that you have cancer tomorrow.

Another thing that's weird is that I, despite what some people have said, have no desire to do cancer walks or runs or anything like that. I'll do them because they are exercise, but I won't do them for the altruistic and totally false premise that I'm raising money to "find a cure". You know what my cure was? The liberal use of a scalpel to cut the blackness out. No money raised from a three day walk is going to find a cure more effective than that. Besides, and this is a little known (or perhaps - more accurately - an often ignored fact), but the money raised for most charity runs and/or walks goes to the event organizers to run the event and pay the bills. A fraction, a mere pittance, of the money raised actually goes to the charity in question. I don't disagree with the notion that it raises awareness, but I also am not blind to the realities of advertising, paying for, and organizing an event of their nature.

I DO feel the need to speak out about my experience. That's partly what this blog was about. That and the fact that it is probably the basis for a book sometime down the road. But I feel the need to tell my story, to do interviews, to be a spokesman for Male Breast Cancer. I want to write articles for women's magazines with titles like, "Tell Your Dude Not to be a Dude!" or "Don't Ignore That Odd Liquid Squirting from Your Nipple!". And I want to go back to that list I wrote up in one of my earlier posts and use it as a gauge for my well-being. I want it to be a basis for my post-cancer self. And I now have the added advantage of being able to climb a large mountain and get my name listed as the first Male Breast Cancer survivor to summit it. And use that to spread the word about my illness.

My goal in the long term is to maybe save some other guy's life who's got something happening with his chest, but who's not sure whether he should mention it to his doctor. Male Breast Cancer has a higher mortality rate than female breast cancer solely because guys don't know they can get it. I want to change that.

But that's a conversation for another day. Today's post is about where I'm at now...

I'm excited to be going back to work next week... but not so excited to start my security job. Right now, I don't think I'm strong enough to run up four flights of steps and, after reaching the top, jump on, wrestle, and fight with a detoxing meth head. This weekend, I'm going to begin working out again. I'll be working on building my cardio level on the elliptical and my mountain bike, and I hope to be running again soon.

It'll be a couple months before I can lift weights again.

So, things are coming around to a semblence of normality, although the doctor said I'm not technically "cured" of cancer until I reach the five year clean point. All in all, things are going well...

Insomnia and Pain

It's 2am and I can't sleep.

I'm in a weird place where I'm up late at night, watching endless reruns of Dog the Bounty Hunter and Intervention and ridiculously stupid horror movies on Encore and Showtime.

On Monday, the doctor pulled my drains. As I've previously described, I had two sets of tubing that entered a couple inches below my chest incisions. The tubes were connected externally to two quart sized jugs that I had pinned to my shirt for over a week and a half. These little jugs were my nemesis.

What I didn't realize was that pa large part of my pain was a result of the other ends of the drainage tubes. The tubes entered my chest below my armpits. One drainage tube ran up my side and across the top of my chest, while the other ran under my incision to the underside of where my moobs used to be.

The tubes were a vaccuum system and the constant pressurization caused me pain and discomfort. The tubes were made of surgical rubber, were about twice the size of a straw, and caused me pain simply because they were under my skin.

Worse, the tubing was clear and you could plainly see fluid, blood, and clots moving through them as they made their way to the clear jugs.

The jugs were the bane of my existence.

So you can imagine my relief when the doctor called and said it was time to pull them. So I went to the McDonald Center and she pulled them, which may sound horrible, but it wasn't as bad as one might think.

Because I was not allowed to remove my dressings, I didn't know they were stitched to my side. Kind of creepy...

Anyway, she cut the stitches and told me that she wanted me to breath in, and then to exhale as she counted to three. I inhaled, she counted, I exhaled, and she pulled. And pulled. And pulled.

I was under the impression that the inside tubes were the same as the outside. Boy, was I fucking wrong.

Imagine a standard, twelve inch ruler. That's, say, what... an inch and a half wide? Much like a paint stirrer, right? Well, the drains inside my chest were nearly that size.

Unbelievably, it didn't hurt to pull them out. It felt odd as hell, but it didn't hurt. (Well, maybe the right side stung a little bit). What was far more disturbing was the four, quarter-sized holes they left in my chest.

Finally rid of the jugs and the painful tubes, and as I was leaving, the doctor mentioned that I might still have some drainage and, if it gets too bad or painful, she may need to aspirate it.

Which leads us to where we are right now. Too uncomfortable to sleep, dreading to lie down, I'm watching really bad late night TV.

Immediately after the drains were pulled, the rest of Monday, and yesterday I felt great. I didn't realize how much pain the drains were causing me. I have an unnaturally high tolerance for pain and I truthfully didn't even realize I was in pain until the drains were pulled. In fact, I started moving around the house, unloaded the dishwasher much to my wife's dismay and consterantion, and went out to a movie with the family (without the indignity of my pus and blood clot-filled jugs). We even went for a long walk after dinner last night.

I was enjoying the relief of not having the jugs and was even able to take a shower as my chest incisions are healing over nicely.

And then this afternoon, after my shower, I realized that I was getting sore again. Within a couple hours, my right side had swollen and become painful and part of my left side as well. It was so fluid filled that simply tapping on my incision on the right side would cause a visible cavitation wave under my skin.

So I called the doctor and she called me back around 8:30 this evening. She made an appointment to see my on Friday. Soooo... on Friday, I'll be going downtown yet again, where the surgical oncologist will numb me and use a soft catheter to drain the fluid from my chest.

In the meantime, the pressure has been slowly building and I now can't sleep. I wouldn't classify it as pain (although I'm quite certain most normal people would. Like I said, I feel pain differently than a lot of people. Right now, it's just discomfort. If I was using that stupid 0-10 pain scale doctors ask you to quantify your pain with... I'd say 1. A normal, non-sociopath would probably say 5.)

How am I feeling about this? Honestly, I'm really frustrated at this point... I was feeling so well, the doctor said my cancer looked like it was gone, and I was ready to move on. In fact, I was contacted by the Ireland Cancer Center just yesterday and had set up an appointment with my new, follow up oncologist for the end of the month. The oncologist I've been using to this point even said that chemo was probably not needed and that I would simply need to do a couple year course of Tamoxifen (an estrogen reducing drug that, in men, can raise remission rates in serious breast cancer cases by 20-30%)

Instead of moving on, I'm sitting here with the skin of my chest stretched tight... like a sausage cooked too long in the microwave. Additionally, the pain wraps around my chest like a cilice, or a torturous girdle.

Like I said, I'm frustrated.

Frustrated and tired... and totally sick of Glenn Beck, Dog the Bounty Hunter, The Dog Whisperer, and infomercials that promise to make me $9000 a week working part time from home.

Although I'm still totally going to call on the PX90 Home Fitness system. that looks TOTALLY cool...

Cancer Picked...

...the WRONG mother fucker!


We got some great news yesterday. The final reports came back from pathology on the removed tissue and lymph nodes.


According to my oncologist, the malignacy was less than an inch long and was restricted to the tissue in my right breast only. There was no evidence in my left side. Additionally, there was nothing in my lymph nodes and no signs of metastisis anywhere else.


In other words, it looks like I beat it.


The doctor was reticent to say one way or the other if I needed to do radiation or chemotherapy, but she does think that it may not be necessary because, as I said in previous posts, we've taken all of the potentially cancerous tissue out. I'll know more about my future plans probably next week when we meet with her to - joy of joys! - have my chest tubes removed.


It looks like the path through the dark woods is coming to an end.


It's hard to believe it's only been like three weeks since this whole thing started. I can say that I understimated the surgery. I've never had major surgery before, although I've had some minor stuff here and there.


For instance, I did have my appendix burst when I was in college at Bowling Green. That was pretty major, although I don't remember much of it. I mostly remember the indignity of waking up with a catheter, vomiting bright green gouts of bile, and riding all the way back home to Willowick in the back seat of my dad's car to convalesce for another week.


The appendix was done laproscopically, which means I don't have an appendectomy scar like most people. They did all of the surgery through my belly button. Which is funny because, sometime after that surgery, I tore a stitch and it resulted in my having an outtie belly button after having had an innie my whole life.


That torn stitch actually became a problem later in my life. Soon after I started seeing Michelle, I noticed that the outtie was getting bigger (and not because I was getting fatter). It also started to become tender and painful to touch. Turns out, the popped stitch from my appendectomy had resluted in what was called an incisional hernia. Unknown to me at the time when I bent to pick up a dropped bottle of shampoo in the shower at BGSU's Harshman Bromfield dorm, the popped stitch had opened a small hole in my visceral wall and, as time went on, it got bigger and bigger.


In other words - BLOOP! - I had a bulge of intestine sticking out through my belly button.


That surgery, was no big deal.


I also had a vasectomy last October. That was nothing compared to the appendix, and was only painful because - as I'm sure you understand - they cut a hole. In. My. Junk.


But this surgery has been a whole new level of suck.


I'm still in pain, I still have tubes in my chest, and I still can't lift my right arm laterally above my shoulder without causing intense pain.


I most definitely underestimated the recovery and pain.


But now it looks like it's finally coming to an end. I


I have to admit that, like before my biopsy, I was kind of hoping they'd come back and say that they were wrong and that it wasn't cancer at all. I'd have been mad because I'd had to go through all of this pain and suffering... but I wouldn't have to worry about cancer any more.


And I will have to worry about it, because cancer's the gift that keeps giving.


The rest of my life, stretched like some dark storm cloud before me, will be the spectre of cancer. Without warning, it could rear it's ugly pulsing, throbbing head and show up somewhere else in me. I'll have to endure lifelong testing and bloodwork... always dreading the call that - like the CyberDyne Systems Model 101 - it's back. Nobody knows why cancer hits some people, and why it happens... but it is more likely that - once you've had it - you may get it again. It's not a certainty... but it's a definite possibility.

To that end - I still fully intend to follow through on my plans to live life differently after this is all over. What other choice do I have?

So what else have I been doing to pass the time?

I've been watching a crapload of zombie movies (watch my other blog, Dr. Zombie's Midnight Theater of Terror, for a bunch of movie reviews in the coming days.). I've been writing and emailing friends. I've also been reading quite a bit. When all of this shit started, I began reading Lance Armstrong's It's Not About the Bike and I think I've become a full on member of Lance's LiveStrong cult. I like his attitude and have drawn some strength from it.

I've also been reading Pride and Prejudice and Zombies, by Seth Grahame-Smith. I'm still on the fence about the book. I love that it rewrites history (both actual and literary) by having Jane Austen's heroines trying to find love and marriage amidst the zombie apocalypse... but the writing lacks some. Grahame-Smith is not as good a writer as Austen and does a bad job of imitating her style. It's still fun to read... especially considering how familiar I am with the source material (For those who don't know, my only published 'serious literary' work was an article analysing the point of view of Pride and Prejudice. (I should add that my daughter is named after the main female protaganist in this book as well. What can I say... I'm an English dork, through and through).

Fianlly, I've been listening almost non stop to Android Lust's The Dividing CD. Someting about Shikree (Android Lust's lead singer) appeals to me and her voice and music is soothing to me on some deep level.

That's all for now, friends. Thanks for reading, as well as for all of the well-wishing.