Diary of a Network Geek

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Yeah, more scans.

Well, by the time most of you read this, I’ll be getting scanned at M. D. Anderson. Another CT scan, with barium contrast. And x-rays. I’m getting one every four months now, and then it’ll be every six and then once a year. Theoretically, it’ll be once a year forever, but I’m not sure if I can afford to do that forever, but I’m trying to take things one scan at a time. I try not to worry, but it does seem like I’m paying an endless series of medical bills and it does get to be a drain on my income.

Naturally, I worry about what the results will be. I won’t know until Tuesday next week, so I’ll just have to hold on and hope for the best.
The picture I’ve posted here includes that first x-ray from just under two years ago when I thought I had pneumonia. When my General Practitioner saw the film, well, I don’t think he’d ever told anyone they were going to die before. Oh, that’s not what he said, but that’s what his face said. The words he used were “unidentified mass”, but what I heard was cancer and death. As I recall, I started to cry in the exam room.

But, obviously, that’s not what happened.
I didn’t die. I went through chemo and came out a different person six months later. I’m not quite the same guy I was when I came down with a slight case of cancer. I’m not entirely sure how I am different, really, but I know I am. I can feel the difference.
This weekend, I was talking with someone about a book. It was a book that had been recommended. It had been offered as a guide to finding God, or at least an aid. My response was that I didn’t know much about spirituality, really, but I spent a lot of time reading books about it and I never once found God in a book. Books are about knowing things in my head, understanding, an intellectual knowledge. But, God and spirituality is something I need to feel. Those are things that knowing in my head hasn’t been of any real benefit to me. They’re things that I have to experience, to feel.

A friend of mine tells me that I’ve gained some spiritual knowledge from my ordeal. Some new, deeper truth about life, my life, that I have yet to integrate into my world. He seems to think that’s why I get uneasy and restless more often than used to. He’s more spiritual than I am, so maybe he’s right. I don’t know.
I do know that while I spend a lot of time talking at God, I don’t spend a lot of time listening. For all I know, God’s been answering me quite directly for some time now, but my mind is too filled with chatter and mental junk that I can’t hear Him. So, what to do. Well, I don’t know, really, but old habits die hard, so I’m reading a book on meditation. Specifically, A Practical Guide to Buddhist Meditation by Paramananda. My thought is that it will help me still my mind and clear the way for something better to come into me. When I used to meditate, back in college, it used to really relax me and calm me down. But, it’s been so long, I thought I could use a refresher course in how to do it. Besides, it was on sale. I can’t hardly resist a book sale.

Who knows? Maybe next time, I won’t get so worked up about getting the radioactive enema from a stranger.
Wouldn’t count on it, though.

Scanned and sushi-ed.

So, I survived my PET scan just fine today. Actually, I had a chest x-ray and some blood drawn, too, but those were minor compared to the PET scan. I prefer that, though, to the CAT scan. Something about all that barium really messes up my insides for a couple of days. In fact, when I told my oncologist that, she agreed to stick with the PET scans, unless they showed something to be worried about so that I didn’t have to deal with the indigestion and, um, other attendant problems that came with the CAT.
In any case, I won’t get the results of that for a week.
Afterward, my driver of the moment, J., and I went to a sushi joint. It was a place on Kirby called Azuma. It was pretty good and not too expensive, even if we did get the lunch specials, with a little extra. It had a nice, relaxing atmosphere and the sushi was really top-notch.
And, I’ve been meaning to mention that I had sushi with an old friend from back East a couple of weeks ago, too. He’s a consultant doing work for highly-confidential clients. It’s something he takes pretty seriously, which is a good thing, but, as a result, he couldn’t tell me that he was in town until he was, well, in town. So it was a really nice surprise and I ran down to his hotel to pick him up for dinner. We went to a different sushi place, which is why I thought of it again. That time, it was Shimako‘s on Westheimer. Also a very good place for sushi. He paid, though, so I have no idea about the prices.
I’ve been pretty lucky with my friends over the years. Somehow, I manage to find the most loyal, giving people who weather some of the strangest, most uncomfortable times with me. I’m honestly not sure how that works, but, well, I’m just going to accept it and be grateful.

Speaking of being grateful, I had a lot to be grateful for this weekend.
First of all, I came into a little money unexpectedly.  Not enough to dig me out of debt completely, but enough to pay one, lingering, medical bill that I’ve been ignoring with enough left over to do some charity stuff and pay cash for Christmas.  It was a very, very pleasant surprise, though, I have to admit, I was a little skeptical at first.
In any case, that got me so pumped up that I managed to motivate myself to get something like eight boxes of my ex-wife’s books out of the house.  Even better, I took them to the local Half-Price Books, so I actually got $60 for them.  Not bad, especially for books I really didn’t want in the house any more.  After the first of the year, I’ll have a couple more boxes sorted and ready to get rid of, so I’ll head back.  Now, sadly, I admit, I spent that cash on books for myself.  Still, I figure, books that I like are a good trade for books I don’t.

Now, the funny thing is, one large box of books was, um, rather, ah, “adult”.  So, I warned the nice lady who was going to sort them and make me an offer.  I didn’t want her to accidentally expose any kids to those books and scar them for life.  But, to ease us past the social awkwardness of that moment, I joked that they’d scarred enough lives already.  That got a little laugh and a bit of curiosity on her part.
When she called me back to tell me how much they’d give me, she assured me that I didn’t have anything in there that they hadn’t seen before.  Now, that might have been a bit of an exaggeration, I knew that there probably wasn’t much in there that would shock her.  But, I laughed and shrugged and said, “Well, you know, ex-wife…”
She laughed and smiled and said, “Yeah, I know, ex-husband.”
And she was kind of cute, in a butch way, and had some nice tattoos, so…  Well, let’s just say I’m looking forward to bringing the next batch of books which are somewhat less, ah, exciting than this last batch.

But, I was still so charged up from what I managed in the morning, that I got my laundry done and folded and put away.  And, I managed to get the wireless card working in an old, spare laptop, so it’s going to become a Christmas present for my red-neck nephew.  He’ll be excited, because he can sit in the coffee shop in the little, rural town where he lives and use their free wifi.  Yes, a coffee shop with free wireless in a town of less than 4,000.  Makes you wonder, doesn’t it?
And, then I got the rest of my Christmas shopping done.  My siblings and their families will be getting something from Bell’s Farm, as usual.  I like sending Texas fruit to the poor folks up North for a couple of reasons.  First, because fruit is so expensive up there this time of year.  And, also, because I had an uncle in Florida who used to send fruit every year, too, and I liked the idea of carrying on the tradition.  Though, I have to admit, he sent fruit to more people than I do!

Anyway, it was a great weekend and I got tons and tons of stuff done.  I did so much that I already have plans for a similar weekend coming up!  Though, next weekend will be devoted to photography and web design and stuff for the Super Secret Creative Project of Doom.  And, possibly working on a map and some background material for a setting idea I have for fiction.  I hope making it more solid, more real, will help me come up with ideas for stories.  We’ll see.  Oh, and I’ll write another post later in the week about my planned charity with a portion of my unexpected bounty.
Until then, though, keep your holiday spirits bright!

In just a few short minutes, my ride will be picking me up for what I hope will be my last session of in-patient chemotherapy.

This will be the sixth session I’ve had, which is the “normal” course of things for lymphoma. Before I check in, I’ll be getting a chest x-ray and blood work done, as well as having a chat with my doctor. After this round of chemo, I’ll have another PET scan and CT scan to determine for sure that Cletus has, in fact, left the building. Depending on how that goes, there may be more treatments, but I’m hoping that this will be the last of it.

It’s been quite an interesting experience, so far, this cancer thing. As one might expect, it’s led me to think a lot about my life and how I live it. I’m not sure that I’ve come to any real conclusions yet, but, then, I’m not quite done with my treatments, either. The one thing I do know for sure is how grateful I am to have so many people who have been so willing to offer their love and support to help me through this. I’m sure that the changes I need to make to my lifestyle as a result of this “little health issue” will continue to change me in ways I can’t yet see. I hope that all the changes, physical, mental and spiritual, will be constant improvements. Only time will tell.

(Incidentally, the title is German and translates, “Once more, with feeling”, just in case you were wondering, or couldn’t read the ulauted u.)

I feel like I should start with an act of contrition.

“Forgive me for not sending an update sooner…”  Or something like that.   This all is also the excuse I use for missing a Friday Fun Link for the first time in several years.  I think you all will agree that it’s a pretty good excuse.
Now, as most of you know, I was checked into MD Anderson on April 3 on an emergency basis.  I’d gone in to see the oncologist for a full diagnosis and was told that I had “diffuse large B cell lymphoma” that was particularly aggressive.  In fact, on a scale of one to one-hundred, my little, over-achiever Cletus was a highly unusual ninety.  The concern, however, was how much that growth was interfering with my breathing.  At the point they checked me in, I couldn’t lay flat at all and had been sleeping in a sitting position for almost a week.  Since the CT scan and PET scan they wanted to do required that I lay flat, this was a problem.  They also seemed a little concerned about my blood pressure, which was 168 over 103, or something like that.  Apparently, they were a little concerned about me blowing a gasket, even though I kept assuring the entire medical staff that I really felt just fine.

In any case, they got me in and started running tests and performing “procedures” the very next morning.  First, they drew off what seemed like about a liter of fluid from my lung.  It was, I have to admit, a rather curious sensation, feeling that space very quickly emptied inside me.  It was the first of many “curious sensations” that I’d never experienced before.  So, now, I was better able to breathe, but still not real excited about laying flat on my back.  That afternoon was filled with a series of quick chest x-rays to check on Cletus.  That evening, I was given three barium milkshakes and threatened with a barium enema before getting a CT scan.  Luckily, I was having such a hard time breathing while laying flat that they gave me oxygen and decided not to waste time with the barium enema.  God works in mysterious ways, thankfully, and I managed to dodge the worst part of that procedure.
Thursday, I had a PET scan in the morning and, as soon as I’d “recovered” from that, they sent me off for an echocardiogram.  I think the “recovery” from the PET scan was flushing the radioactive iodine out of my system, but I’m honestly not sure.  Things were starting to become a bit of a blur at this point.  The echocardiogram, for those of you not familiar, is just a fancy ultrasound of the heart.  My heart and lungs had a lot of fluid around them and the doctors were concerned about my capacity to breathe and pump blood through my body.  The informed me that was very important to one’s continued good health, in case I’d not picked up on that yet in my limited studies of health and medicine.
Friday, I started my day with a bronchosopy, which is the expensive word they used for sticking a camera up my nose and into my lung to check on some “spots” that showed up on the CT scan and PET scan.  Maybe it’s just me, but if they were willing to spend the time to name the procedure that stuck a camera up my nose, they should call the “spots” something fancy and Latin, too.  When I returned from my bronchosopy, I had a deceptively cheerful nurse just about waiting for me so that she could perform a bone marrow biopsy.

Let me pause here for a moment out of respect.  That bone marrow biopsy was the most uncomfortable and possibly painful procedure they did to me.  They very efficiently numbed my back, then carefully inserted a needle into my back.  Using that needle, they punched a hole into my pelvis.  But, I assure you, that was NOT the part that hurt.  One would think it should be, but it was more a sensation of pressure than anything else.  What hurt was the flexible needle they stuck in after making the hole and used to draw out a sample of liquid bone marrow. The worst part?  Now, knowing what it felt like, I had to hold still while they repeated the process.  I believe I was too far gone into some other world while they did that second sample to even chant “happy, quiet place”.

Then, the IV team came in to give me a “quick” dual port IV line into my left arm.  The tube was meant to run down veins from my left bicep, across the left side of my chest and down to just above my heart.  An x-ray showed that they didn’t quite make it on their first attempt. Luckily, they had a solution.  Contorting me into a somewhat unnatural position, they did a series of quick flushes with saline solution to whip the tube from my right shoulder, where it ended up on the first attempt, down into the center of my chest where they wanted it.  As “curious sensations” go, feeling that tube slither and slide through veins as it dropped down where it should be was about as curious as it gets.  And, yes, a second chest x-ray confirmed that they’d moved things into the right position.

That Friday night, I started chemotherapy.  Since I was terrified of the side-effects and not being able to get a nurse quickly enough, a very dear friend stayed with me that night.  It will not exempt him from funny stories in the toast at his wedding, but it did induce me to promise that I’d keep them all clean and vague enough to have his relatives scratching their heads.  Luckily, I had virtually no side-effects at all.
Though, there is one that I won’t know about for some time that both caught me by surprise and made my heart clench, just a little.  No, it’s not the hair loss.  It was that the first round of chemo may make me sterile.  Now, I grant you that I’m 38 and not seeing anyone right now, much less anyone I might want to marry, but I’d always hoped to have kids of my own one day.  I suppose if I’d known sooner that might be a side-effect of the treatment, I might have started a “savings account” of sorts to deal with it, but that wasn’t an option Friday afternoon. The doctors tell me that it wouldn’t be complete sterility, just a severely lowered sperm count and that it might get better as I heal after the treatment is over.  But, it’s hard not to hear it as a kind of final sentence.  I’m sure that will be something I discuss with my minister and possibly a therapist as this goes on, but for now, it seemed the less of two problems.  Dead and fertile or alive and sterile.  The choice wasn’t that hard to make, but I’d be lying if I didn’t admit that it had an effect on me.
The rest of the weekend and week was mostly the same.  I took lots of pills, some of which actually made me feel better.  Turns out, the ten annoyingly small pills I had to take were steroids and were also what was responsible for my appetite.  Yes, that’s right for most of my continuous six days of chemotherapy, instead of nausea, I had an appetite!  The miracles of modern science.  Or, as J. would say, the miracles of a cancer patient with a stomach like a goat.  Which is true enough, though, I have to admit, I am trying to be careful what I eat these days lest a bout of food poisoning upset my chemo schedule. Naturally, I was tired the whole time and I did lose about ten pounds or so, but for the most part, it wasn’t too bad.  Until Thursday, when I had ALL the side effects all at once.  The chills, the shakes, nausea, the whole shebang.  But, one miserable day out of seven isn’t bad at all.

I was discharged Friday afternoon and spent the weekend mostly asleep. I’m still taking pills by the handful, some twice a day.  And I was back in for a short dose of chemo on Monday morning.  No side effects, other than being very tired and a little light-headed.  I also gave myself the first of ten subcutaneous injections that are meant to boost my red blood cell count Monday, which was a nerve-wracking experience for me. Still, I managed to do it and not draw blood, so I think I did it right.  And, finally, that Sharps container I’ve had around forever, given as a gift (it might be best not to ask about that), has come in handy.  So, now I do have some small justification for holding onto those strange, seemingly useless items forever and ever.  You really don’t ever know what will come in handy when!

This week will be filled with more clinic visits and blood work and trying to just get a normal life reestablished.  I hope to get into work for a couple hours today and work a mostly full day Thursday and Friday.  I have an appointment next week with my oncologist and I should get some more information then about how treatment has been progressing and how it will go for the next six months or so.

I know this has been a really long e-mail, but now you all should be up to date on the saga of Cletus and the medical whirlwind that my life has become.  I’m feeling a little stronger every day and cannot tell you how much I appreciate all the visits I got in the hospital and all the calls and e-mails.  Keep the prayers coming.  I’m going to need them now more than ever as I work to keep my life in balance while still fighting this thing slowly dying inside me.

I’m doing something a little different this Friday.

Let me introduce you to Cletus, my tumor. You can see him fairly clearly there on the left side of the picture. (If you want a bigger picture, click on the thumbnail.) Now, don’t be fooled. Cletus is in my right lung. This image was taken as if you were looking at me straight on. Notice, too, how my collarbone is a little funny on that side? Well, that’s because I broke it in the seventh grade in wrestling class.
Now, notice how the second x-ray looks almost exactlly the same as the first? That’s what got me sent back for a CT scan and a biopsy. That’s no little pneumonia there! So, this is what’s inside me. Growing like a malevolent presence. Making it hard to breathe and hard to sleep. Not pretty, is it? Well, that’s Cletus for you. Not all that pretty and a whole lot of uncomfortable.

The cool thing is, I have this all on CD. Yeah, isn’t that wild? I got this and my initial CT scan on a disk and I exported these pictures from it. A great thing, that technology. Sadly, yesterday, I had to get actual films and couldn’t get the latest scans on CD. Oh, and the reason I chose to use x-rays instead of CT scans is that they showed up better. The films of the CT scans, though, are spectacular! Hmm, maybe I’ll frame them…

Oh, and just in case someone out there is a stickler for a Friday Fun Link? Here’s a link to a story on Boing Boing about Medical Curiosity Clip Art. Wee! Go have fun!
And enjoy your weekend!

It was an interesting weekend.

So, Friday morning, I get to work within seconds of C. We park in different rows, but make it to the door about at the same time. I notice that her hands are full, so I wait a little longer than I normally would to hold the door for her.
“Wow, you’re wearing jeans for a change. It’s nice to see. You look good in jeans,” she tells me. Now, I’m not vain or concieted, but when I worked at the Front Desk, the black girls all complimented me on my ass. I may not have a lot going for me, but I do know I have a better than average ass for a white boy. I’m pretty sure that’s what she really meant.
“Um, I wear jeans every Friday, C. and have since you worked here.”
“Oh, I guess I never noticed before…”
Well, no shit. Who notices the quiet, polite, professional guy who looks you in the eye not the nipple? Who notices the guy that puts you on the prayer list at church because you’re obviously having trouble with the guy you’re dating and just can’t figure out that you should leave him, be alone and figure out who you really are instead of running from the tragic death of a high-school sweetheart? Apparently, not C. Go figure. Just call me Rodney Skinner. After work, I took my favorite, flirty strawberry-blonde out shopping and for Jack-in-the-Box 99¢ tacos. She might be a bitch, but she’s a cheap date. Hey, I’m talking about Hilda, my dog! C. has artificially enhanced red hair, unless I miss my guess.

So, then Saturday night after church, W. the former mechanic who now works with me and, in fact, is responsible for me having my current job, and K., J.’s former fiance, and I go out to sushi at Koto’s. W. and I have known her for quite awhile and I encouraged him to talk to her via e-mail, because I know she’s been a bit lonely and feeling a little out of the social scene at church. After she and J. broke it off, she got engaged again and that didn’t work out either, though for totally different reasons. She’s a very nice woman who invited me into her home the first Thanksgiving I was alone, the week after the Queen of the Damned left. In any case, they cooked up a dinner out, pre-planned, so that she wouldn’t feel suddenly trapped while everyone else got together and went out.
K. is on the Prayer Team with me at church. Actually, she invited me to join back when she and J. were still together. While we were waiting for everyone else to get together for our group prayer, she and I got pressed into service serving communion, which I had never done at this church before. I swear, when we got up to do it and found our place, J. and L. were staring and whispering about it. It may have been my imagination, but I swear I saw her look right at us then lean over to him and say… Well, something.
After church, we hung around a bit, while W. went and got a table at Koto’s. Apparently he knew the place quite well. Also, he speaks very fluent Japanese, which I’d forgotten. I think he might have been showing off for K., but I’m not sure. Either way, it was great sushi and rock bottom prices and I cannot reccomend it enough. We had a nice dinner, even though I was coughing pretty badly. And, my eyes were bigger than my stomache, so I ended up bringing home a bit of sushi for Hilda. Yes, my amazingly spoiled dog eats sushi, thank you very much!

Sunday, I did nothing and loved it.
This morning, though, W. tells me that K. “likes” me. Now, as a former fiance of perhaps my best friend, she’s automatically off-limits, but I have to admit, I am attracted to her. Still, he’s the second guy who’s seen us interact and said that. I’m starting to wonder if it’s not true. But, I really need it to not be true, and I told him so. His response?
“Well, at least she likes you a lot more than she likes me.”
Oh, God, help me!

Now, for the health update…
Got my chest x-ray this afternoon and got a call from the doctor about 6:00PM. Apparently, the x-ray showed no improvement, or not enough for the imaging center’s liking, so tomorrow morning, after I go see the phlebotomist, so they can check on my anemia, I’ll be off to get a CT scan. Apparently, it’s pretty gruesome.
And, I’m taking this very seriously now, because last night, I listened to a guy share at a men’s support group meeting I attend, about his inoperable cancer. The symptoms that he described going to see the doctor for? The exact same symptoms I ignored for months. Now, I don’t think I have cancer, but I do have a history of it in my family, on both sides, so that scared the shit out of me. No more screwing around, I promise, folks. Uncle Jim is taking it all very, very seriously now. Whatever the doctor says I need to do, I do.

I’ll give you more as I know more.

Advice from your Uncle Jim:
"The real art of conversation is not only to say the right thing in the right place but to leave unsaid the wrong thing at the tempting moment."
   --Lady Dorothy Nevill

Guess who has pneumonia?

I think the doctor was a little surprised to see me walking around, to be honest. He never actually used the word “pneumonia”, but just talked symptoms. I described how things had progressed over the last three months, or so, and how two weeks ago, things had seemed to be getting better. I admited I should have come to see him sooner, but, well, I was a bit thick-headed and from sturdy stock, so I figured I could out last it, whatever it was. I believe his only comment at hearing that I’d fought this for three months was to agree that I was, indeed, a little stubborn. Then, he gave me the inhaler and the first of an eleven-day course of antibiotics, just to help finish “it” off. But, after listening to my lungs, he decided I needed a chest x-ray. Apparently, my right lung wasn’t filling with air very well and he wanted a picture of that. So, he had his staff get me into the imaging center right away. Oh, and he thought I looked a little pale and my blood pressure was a little high. So, they’re doing some blood work on me and, after all the over-the-counter drugs are out of my system, we’ll be checking on that blood pressure.
At the handy, local medical imaging center, they had me fill out a form that included a description of what brought me to their facility. Naturally, I put down “a cough”, because, as far as I was concerned, that’s all it was. The nice lady entering me into their system laughed and said,”Oh, no, honey, your doctor said it was pneumonia, not just a cough.” Naturally, I laughed that off as nothing much to worry about for hardy, Midwestern stock like me. Then she asked me how many days of work I’d missed.
“Well, except for one day travelling for family business, none.”
I mean, c’mon, it takes more than a little pneumonia to keep me from getting the job done. That’s why I get the “big bucks”, right? Yeah, that’s the ticket.
So, in any case, I’ve started my antibiotics and I have my Official Network Geek Inhaler and I’ll hear back about the results of the blood work and x-ray later this week.

Now, on the mental health front…
I had an interesting conversation with C. from work yesterday morning.  Apparently, as a  condition of her full-time employment, she was told she couldn’t date anyone from the company.  According to the grapevine, she put the question to the guy she was seeing, who’s actually “Pappy” from the whole Wild West incident.  Unfortunately, his answer was that his job was more imortant than she was.  Well, there were some other, um, “words” used to, ah, “express” the sentiment that were, to be honest, less articulate and a bit more crude, but that was the gist of it.  In any case, she calls and starts talking about work, but then asks me if anyone is around me.  When I told her no, she starts explaining how important her job is and that “it’s not going to happen”.  I can only assume she meant her going out with me.  Which, frankly, after all the crazy signals and her getting all involved with this other guy, who is a real clown and, well, not much of anything as far as I can see…  Well, let’s just say it left me scratching my head.  Honestly, I think I’d be better off dating the reluctant groom’s former fiance.  And, no, that ‘aint gonna’ happen.

So, now, it’s time to set up the coffee for tomorrow and get some well deserved sleep.

Advice from your Uncle Jim:
"Life has taught us that love does not consist in gazing at each other but in looking outward together in the same direction."
   --Antoine de Saint-Exupery