Tuesday, August 11, 2009

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.


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.

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.