Tuesday, May 23, 2006

Getting an MRI

I guess you have to find humor somewhere in with all the dread and drama of having Prostate cancer. I know I've never had so many fingers up my butt in all my life as when I started with this whole cancer thing. As one of my co-workers said - at least I didn't like it.

It seemed like everyone, no matter how many times with the same medical person, wanted to feel my prostate. At one point while I was making the rounds of the medical people, I thought I'd just go ahead and bend over rather than wait for them to ask if they could insert their fickle finger to further feel my fate. I'll bet I had the single digit of seven different people determine my disposition.

So then I had an MRI.

I get to the hospital first thing in the morning, just before 7:30 a.m. The receptionist, an elderly and kind lady who'd had throat surgery just the year before, said that the technician had already been looking for me. I thought, jeez, here I am about 10 minutes early and they're already after me. I guess we were both anxious, but for different reasons.

The tech and I met up and he gave me two hospital gowns and a Fleet enema. He told me to remove my clothes, except for shoes and socks, and put the gowns on - one from the back and the other from the front. He told me to follow the instructions on the box for the enema and, if I had any questions, to ask the receptionist.

The receptionist told me to go into the bathroom until I was done and to make sure not to lie on the floor. Huh?!

So I went in to the bathroom, changed into the gowns and read the instructions on the box on how to do this enema. It said to either lie down on the floor, on my left side and crook one leg up or, to get down on knees and forearms with my forehead against the floor. I thought to myself, well, they told me not to lie down, so I won't. But how in the world am I supposed to give myself this enema if I'm down on all fours with my head pressed against the floor and my butt stuck up in the air? After a couple minutes of thought I decided to just squat over the toilet and call it even.

So I gave myself the enema and followed the rest of the instructions. I was to hold the liquid I'd just squirted inside me for as long as I could, at least for five minutes, before (what? exploding?) releasing. I'm walking around inside this 5 foot by 5 foot bathroom holding who knows what inside me for as long as I can. How do you know when at least five minutes are up in a bathroom? How do you know when you can't hold it any longer? I mean, both are a relative thing to consider. I can hold it longer. No, I can't. Yes, I can. If I jump up and down will it work better? What happens if I go all over the floor? Don't laugh, or cough, or it will. I mean, at some point, who cares? I hadn't had anything to eat the entire day before so I had nothing in my bowels to begin with. They just want to make sure you're cleaned out, is all, I was told. So the enema was soap and water? Good thing the box didn't include a brush or I would have really freaked out.

After it was all over I sat in the anteroom and the technician came to get me. He explained that the MRI machine I was going to be going into was the latest and greatest and that it was only one of two of its advanced kind in the country. Whew, that made me feel better. When we got into the room I saw this huge turbine looking thing with GE inscribed across the top of it.

He explained that I was going to lie down on this narrow table and be slid into this circular tube that was just a bit bigger, though certainly longer, than I was. While inside it I estimated that I had about six inches of space above me and virtually none on either side. It is definitely not a place for folks with claustrophobia.

I laid down on the table, he slid me in the tube for a few minutes and it made a bunch of noises. I thought, this isn't too bad. Then he told me he was waiting for the doctor to come. And here I thought I was done.

The doctor came and explained to me that I was going to have an IV in my arm to pump in liquids that would be used for contrast in certain tests and that I was also going to have a rectal coil inserted - guess where - for the entire time it took to do the various tests. And, that I shouldn't move in the least while in the tube. How long, I asked, is this going to take? Oh, a little over an hour was the response. Wait a minute: I'm supposed to lie down on this narrow table in a tube that's more like a tomb with a coil up my butt and liquids that will burn a little when they're released thru the IV in my arm for over an hour - and not move? Yep. Hmmn. How many other guys does this happen to? Oh, about 2 -3 a day, was the answer. Well, if they can do it, ....


So for the next hour or so I lay inside this tube. At first the tech put music on that I listened to through earphones but I didn't like it so I asked him to skip the music. The earphones turned out to be necessary for him to use to communicate with me and to deaden the noise of the MRI. At different times he would say things like, okay, take a deep breath and hold it until I say to let it out. You're doing really great. Don't move.

The machine clanked and whirred and groaned and made all kinds of noises. During one of the tests I swear someone was hitting the tube with a wrench: Bang; bang, bang. Another time it seemed like I was in a wind tunnel and the noise of the wind rose in all its fury, more intense than any wind could ever be. Just when it seemed like the noise was going to bore into my brain, it was over. Each test was accompanied by its own unique sounds. I could tell when one test was over and the next starting by the sounds. Then they said okay we're going to do the test with the IV now. You'll feel a little burning sensation. I did, but mostly I got a strong metallic taste in my mouth.

The whole time I was in the tube I held on to this little rubber device that, when squeezed, would alert them to my needing assistance - like getting the hell out of the tube. I did this once and was gently reminded that each time I did this it only extended the total time it was going to take for it to all be over.

It seemed easier to put myself into this Zen-like trance in which I focused solely on breathing, not on the infinite things that go on when you're told not to move an inch - nose itching, arm twitching, leg cramping, feeling like you're being buried alive. I mean, your mind can really go wild. So I put myself into a meditative state and breathed as easily as I could, trying as best as I could to ignore all the noises going on around me.

Eventually it was over and they both congratulated me on being able to remain so still for so long. I was told by the tech that they had gotten really high quality images. That's great, I said, but I'd really rather have this coil removed and, nothing against you guys, but I hope I don't have to come back here and do this again.

The tech escorted me back to the changing room and wished me well. As we entered the room, the next guy was sitting there, double-gowned, waiting for his turn. He and I looked at each other and I said - hey, no problem. Piece of cake.

Saturday, May 20, 2006

Prostate Cancer - Two Weeks Post Op

It's been a little over two weeks since I had surgery. This past Wednesday I had the catheter and staples removed. The staples were interesting. There were 22 of them extending from my pubic bone to my navel. They looked like a little stainless steel ladder climbing up my stomach.

As it turns out, the cancer was confined to just my prostate. It hadn't spread anywhere beyond. And, the best was when the surgeon got to the nerve sparing part. He said that the nerves and blood vessels just lifted right off of the prostate, all in one piece. As a result, I have no incontinence issues. I am so fortunate that, of all the scenarios of what could have been, mine turned out to be the most simplest, routine, of all.

When the nurse practitioner removed the staples and pulled the catheter out, I told her that I had full feeling of my bladder function. I could tell she didn't believe me but I didn't care. It was interesting to me to just know it for myself. When she explained the exercises I am to do to build up the muscles regarding continence I told her that I had been doing them as a part of my martial arts training for years.

The exercises are similiar to what women do, Kegel exercises they're called. The idea is to tighten the muscles in your bottom, as if you have gas and don't want to let it out, or as if you have to pee but are trying to hold it in. I did those in martial arts to simulate turning to stone at the moment of impact. The idea was to move fluidly and then, at the instant of striking the opponent, to harden the body, from head to toe. We used to call it tightening the sphincter muscle and would practice it regularly.

In addition, I spent time isolating various muscles in my body so that I could tighten only those I needed to, in order to keep the rest of myself loose. When I do stretching I practice isolating and stretching different muscles at different times. As a result, I'm pretty much in tune with my body.

Nevertheless, when it came time to have the catheter taken out I found it was nothing compared to having had the drains removed from my stomach while in the hospital. I thought my guts were being sucked out of my body when the drains were pulled out. The two lines were each about four inches long but it felt like they went on forever. Talk about a memorable moment.

Anyway, I've been out of the hospital for nine days now and am getting stronger every day. Bit by bit. I take a walk and then sleep for an hour. The second day out of the hospital I took a shower, shaved, got all dried off and put my robe on, feeling good. Then I layed down and slept for the rest of the morning. Now, 7 days later, I can walk for almost an hour - and then sleep for an hour and lay around for two more.

I knew going in that I would be tired after any kind of physical activity (like taking a shower) but somehow I thought that in between I would feel fine. Actually, I pretty much just feel tired all the time. I'm not taking the pain medication and I understand it takes about a month for all of the anesthesia to work its way out of my body so I guess that's a part of it. Plus, the nature of the surgery just shuts the body down to focus on healing. I know that when I take walks I move pretty slowly and without much energy.

The other day I walked over to the car repair place and got Julie's car. She had a tire checked for a slow leak. I'm not supposed to drive but did anyway. I won't try that again until I feel much better. I was so tired that my reflexes were very slow. I was lucky that nothing out of the ordinary happened.

Anyway, I'm grateful that the cancer was very much in the early stages, that the diagnosis was made when it was, that the surgeon was as skilled as he was, and that everything turned out as it did. I pretty much think of it as having dodged the bullet that might have been. The surgeon didn't have his charts with him when he approved the nurse practitioner to remove the cathether and staples, but he did tell me that I have a 95% chance that I will be cancer free in ten years. I'll take that.

I'm also grateful that I have such a good support system. One of my sisters came up to be with me. I got out of the hospital on a Thursday night and she came up on Sunday and stayed through Thursday. She helped out a great deal just by being here. Julie didn't have to carry the full burden and I could focus on healing. The dog got walked, meals were made and the load was shared. On the day I had to go get the catheter and staples removed, a friend of Julie's drove my sister and I to the hospital. I was very lucky to have had all that available to me. I tell you, having a good support system is extremely important to recovery.

I have also been humbled by the cards, emails and phone calls that I have been receiving during my recovery. Knowing that there are people who care makes all the difference in the world.

I couldn't ask for more as I continue on the road to recovery.

Friday, May 12, 2006

Prostate Cancer - the Aftermath

I went in for surgery on the morning of May 9 and was back home the evening of May 11. So far, so good. Fortunately, the operation turned out to be routine, all of the nerves were able to be spared and there was no evidence of the cancer having spread beyond the prostate.

The original plan was for me to be discharged on Friday, May 12. However, early in the morning of the 11th I passed a lot of gas, and during the late morning I was able to get up and walk around without feeling dizzy or nauseous. I was able to hold clear liquids down. Late that afternoon I was also able to eat solid food.

The surgeon came around to see me and said I looked so good he thought if I wanted to I could go home that evening. A quick call to Julie and then I started packing up.

The drains in my stomach were removed, the IV was taken out of my arm, and, after the nurse gave me literature and made sure I knew how to clean myself and replace the bags that come with the Foley catheter, I was good to go.

So I got back to Julie's at about 8:30 pm and went to bed feeling pretty tired. About two and a half hours later I woke up, wide awake. Didn't get back to sleep until 3 am. Then, at a quarter to six in the morning, I was up. I guess I'm still shedding off being in the hospital.

The first night after the surgery, nurses and nurses' assistants came by every hour all throughout the night. I found myself sleeping in short spurts. On the second night I had fewer people coming around less often but it was still difficult to sleep for any length of time. Today I'm going to try to stay awake for as long as possible in order to get my sleep pattern back to normal.

So far I haven't used any of the pain medication prescribed but I may use some at the end of the evening to help me sleep through the night. I'm taking Ibruprophen during the day. I should probably take some right now. I am surprised that I'm experiencing such little pain. However, as all of the medication given me in the hospital is now moving out of my system and I'm getting back to normal, I may start hurting.

Nevertheless, I am grateful that the operation was successful. I'm grateful for the hospital staff taking such good care of me. But most of all, I'm grateful for having Julie in my life.

Thursday, May 04, 2006

Prostate Cancer

I guess I’ve become “the other guy.” You know, I never thought I’d be the one with cancer. It wasn’t a part of my plan of things to do and to get during my life. So, it was certainly a surprise to find out it was my turn. Like most things that have happened to me in my life, the diagnosis came by accident.

In February 2006, I went for my first annual physical up here in Massachusetts. During the exam I mentioned that I was having intermittent issues with maintaining an erection. I figured it was age related; you know, the older you get what you used to be able to do all night now takes all night to do. I was relieved, and heartened, to learn that all my other signs and signals – cholesterol levels, blood pressure, all the stuff done at an annual physical showed me to be healthy. Anyway, the Dr. added testosterone testing to my blood work and it came back as being low.

She referred me to a specialist who, like my primary care Dr., also found via the digital exam that my prostate was normal for my age, as was the psa level in my blood. The specialist decided, before starting me on testosterone therapy, to just make sure that I didn’t have cancer. He said that about 10% – 17% of guys with low testosterone levels were found to also have prostate cancer. So he did a biopsy of my prostate. Two of the 10 tissue samples came back as cancerous, one at a low risk level (a 6 on the Gleason scale) and the other at a 7, which is intermediate. Eventually I learned I had T1c prostate cancer. When the specialist told me I had cancer, I decided to take the rest of the day off, rather than going back to work.

I guess it’s natural that one’s mind begins to spin away with all kinds of conflicting thoughts. I went from “OmiGod, I’m gonna die” to “I can beat this thing,” like a ping-pong ball – back and forth, back and forth. Eventually I had to shut my mind down as I was driving myself nuts and listen to what was being laid out for me to do with what I had.

The specialist gave me four scenarios (in the primary care Dr.’s office I told her I had a fifth option, which was to just walk away from it altogether. She discouraged me from continuing with that train of thought): The first option was watchful waiting, in which no treatment gets done. Since Prostate cancer is a slow growing disease, theoretically, it could be a while before anything would “need” to be done. The level of my cancer indicated, on the charts at least, that I had a 100% chance of living the next 5 years, and then it went down from there. Then there is open radiation therapy as another option.

Tiger Woods’ dad just died (May 3, 2006) from prostate cancer. He had been treated using open radiation therapy; at first, the cancer was killed off but then apparently came back with a vengeance.

The third option is to have radioactive “seeds” implanted. This is known as brachy-something surgery. About 75 – 80 seeds, each about the size of a grain of rice, are implanted in the prostate, which is about the size of a walnut. The idea is that the radioactivity will kill off the cancer. I was a marginal candidate for “seeding.” While my prostate and psa was normal, the fact that I had an intermediate grade level of cancer in at least one tissue sample (you have to figure that since the biopsy is just a sample of the whole, there had to be more that wasn’t found) compromised this as a choice.

The fourth option is to have the prostate removed. Cut it out! Get rid of it! Bad prostate! You can’t have a cancerous prostate if you don’t have one. If only it was that easy.

Fortunately, in my case, results of an MRI suggest that the cancer is confined to the prostate, as opposed to it having spread to my bladder, lymph glands, seminal vesicles, etc. This was good news, relatively speaking, since it appears that nerve sparing will be able to be done which suggests a return to sexual functioning. And also, that I won’t be incontinent. The procedure is formally called Radical Prostatectomy with Nerve Sparing.

It was this last choice that I’ve chosen. I believe it’s the right choice, given the options.

Before arriving at this conclusion, I talked with different people,including a couple guys who’d had prostate cancer. One had the prostate removed, the other ended up having seeding. I talked with my girlfriend, my sisters, my kids, people at work. I emailed some buddies back in Baltimore. I did a lot of Internet research, soul searching and lots of walking around thinking about it.

One thing I found is that while the current thinking, pretty much across the board for people my age and with my stage of cancer, is to have the prostate removed, everyone I talked to knew someone who knew someone who went to the “guy who had the best hands.” I found myself interviewing surgeons, questioning their success rates and, surreptitiously, looking at their hands. Very quickly it started to get nuts. I went to get a second opinion from a surgeon who told me that while he was the best, I was in good hands with any of the three guys on my list (which included him and the surgeon I was originally sent to).

At some point, you just have to go with your gut feeling.