Diary of a Network Geek

Okay, so my idea of fun may be changing a bit.

I've noticed a theme in my cancer caregivers' rhetoric lately: clean.  Get clean, stay clean, avoid things that aren't clean.  Wash your hands, gargle with their special solution to keep the mouth sores away, don't eat raw foods that might have bacteria on them.  This over-riding theme of cleanliness may have had some small effect on my choice of interesting links.

First, with all the house cleaning, there was this tool to minimize, if not eliminate, dust from doing wall-board work.  Now,  that might not seem like a big thing, but, trust me, all that dust is an irritant for months to come after the work is done!  I know, having stuck my leg through a ceiling while running cable and doing the repair work myself.
Next, is a link to a toothbrush sanitizer, which has always been a thing for me.  Well, not toothbrush sanitizing, per se, but generally good oral hygine.  I'm always worried about things stuck in my teeth and bad breath and making sure my gums don't bleed.  That's gotten very important to me these days!  Bleeding is bad when my red and white counts are down so low!
And, this automatic soap dispenser caught my eye, since I'm washing my hands so much.  Before I even saw it, I was thinking about how the most likely point of contact for bacteria was at the soap dispenser.  An automatic soap dispenser would cure that and this shiny, chrome one would look nice on my bathroom counter!
Finally, while not a cleanliness link, this web-enabled pill box struck me as just the thing for someone having to track a bunch of medications.  Their service, which isn't quite available yet, helps a patient keep track of all the various medications and times and frequencies they have to take.  And, at $60 a month, trust me, this would have been a Godsend this past week.  I have so many pills to take that a little extra help keeping them straight would have been a big help!

So, there you are, that's what sounds "fun" to a cancer patient with a lot on his mind!  Kind of boring, but at least it's something to think about over the weekend.  Enjoy your Friday!

I'm not normally one for modern religious music, but...

But, well, I'm not sure if it's the cancer or the way my church, Mercy Street, rallied around me so, but I popped a pirataed copy of Lifesong by Casting Crowns into the CD player on the way home from work. (Yes, work! I worked a full day today!) The second track on that CD always gets me these days. The song is Praise You In This Storm and the lyric that never fails to jerk a tear from me is "...I raise my hands and praise the God who gives and takes away."

It's been a hard lesson for me to learn these past five years, or so, that things pass on.  Both good and bad things, but, mainly, I'm thankful that I've finally learned God will take the pain away, if I just wait and let Him.  All the pain.  It's not just my body He's healing, but my spirit, too.  Surely, if I can learn to endure the pain of the proceedures I've been through and the fear of what might be coming next by leaning on His strength and trusting His plan for me, all the other pain that seems to hold on for so much longer will pass, too.  All the fear of not being enough to be worthwhile.  All the worry that I'm not spiritual enough, or good enough, or enough of a friend.  All those things that pull at me and weigh me down He can take away if I just let them go.  I just need to trust Him and believe that God will continue to do those things for me that he's already done.  All those things I can't seem to do without His help become possible, when I just let go and let Him be in charge.

Today, in the car, the thought that I never was able to pass that lesson along to my former step-daughter pulled more tears than usual from me.  As hard and tough as I like to think I am, the thought that I failed that little girl in any way still pulls at my heart.  It's the hardest thing for me to let go of, but, today, I realize the most important.  I don't know if she even knows that I was diagnosed with cancer, or how she would feel about that if she did, but I wonder.  I hope that she's not afraid for me, if she knows.  I hope someone has made it clear to her that I won't let this kill me, if she ever wants to know who I've become since she saw me last.  I suspect that she doesn't even know, or think about it.  Perhaps she will one day, but I don't think so today.
I just hope she learns from someone, somewhere, somehow, that any pain she feels now will eventually pass away and need not overwhelm her.  Somehow, I think that's an important thing for her to know and it pains me that I never had the opportunity to teach that to her.

I suppose the blessing is that my pain over that shortcoming will pass, too.
So, as God sustains me and heals me through this process, He teaches me lessons, too.  How blessed am I?

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've learned more about medical procedures in the past week than I have in the past 38 years.

I have been poked and probed and punctured and scaned so many times in the past several weeks that I think they can build a full-scale replica of me. I've lost count of how many times they've taken blood from me. The worst was the bone marrow biopsy they did on both hips.
Now, you have to understand, I have a really high tolerance for pain. I mean, really high. I passed several kidney stones before hitting the nine millimeter stone that took me down and I'm told that passing kidney stones is comparable to childbirth. So, when I tell you that the bone marrow biopsy hurt, you can count on the fact that it HURT. Oddly, it wasn't when they punched the hole into the back of my pelvis, but when they stuck the flexible needle into the bone and drew out the liquid bone marrow that hurt. And, the worst part was that, after doing it on one side, I had to just grit my teeth and know they were going to do it again on the other side. That part was the worst. Knowing how it was going to feel and just having to lay still while they did it. Blech!

The rest of this whole process, though, hasn't been that bad. Chemo has been easier for me than I would have expected. It turns out that my father, who had colon cancer several years ago, also had virtually no effects of chemotherapy. Must be that hardy, Mid-Western stock that we're so proud of, eh? Naturally, I'm tired. Apparently, the chemo attacking my body does that. So, too, the whole being stuck in the hospital.  Now, that may change a bit as things go on, but, so far, it's been okay.
There's more to say, naturally, but, frankly, I'm tired and the angle that I'm working at with my laptop is rather inconvenient and uncomfortable, so I'm done with my update today.  When I get home, I'll write more.

What?  You thought a little cancer would keep me from posting a Friday Fun Link?

Not a chance!  So, yesterday one of my more attractive visitors was telling me about a place you can buy funny, anti-cancer t-shirts.  Now, I'm not sure if this is the place she was talking about or not, but their t-shirts are funny.  And, they have cancer supporter t-shirts, too.
Anyway, the place is called GotCancer.Org and, while they don't list any specific charities they support, they are working with charities to form bigger, better relationships, so they're probably okay to buy from.  Besides, the t-shirts are pretty funny.

So, keep the faith, keep praying for me, and enjoy your weekend.

So, I'm in MD Anderson.

Turns out old Cletus was a bit more aggressive than we first realized.
Tuesday, I went to see my oncologist and she was a little concerned about how much Cletus was restricting my breathing, so she had me admitted on an emergency basis Tuesday night. Thankfully, I have an amazing array of friends who all jumpped in and started taking care of everything for me right away. So, my darling Hilda is being taken care of, and, in fact is probably being spoiled by someone who's even more codependant with my dog than I am. I actually think she went and bought McDonald's fries just because Hilda likes them.
Tomorrow, and most likely Saturday, I'll have people all up in my house cleaning it and stocking it with food for my parents who will be arriving Tuesday evening. Someone else has already made arrangements to pick them up from the airport and help them find their way around Houston. At least, as far as getting to the medical center and back home. Naturally, they'll be staying at my house. All that room does come in handy.

Now, I suppose you're wondering about what kind of cancer I have and what my treatment will be. Okay, I have diffuse large B cell lymphoma, which, in case you're wondering, is not good. On the menu of cancers, this is not one a wise person would pick. What's more, it's an aggresive case. On a scale of 1 to 100, Cletus rates a 90. Not the best way to be an overachiever, is it?
The concern is, however, how fast and far it's spread. That's the problem with lymphoma like Cletus, he tends to sleep around and spred his problems all over, real quick. So, after having had several different kinds of scans in the past two days, tomorrow, I'll have a few more and then follow that with a couple of bone marrow biopsies, which will most likely be a pain the ass, literally. They seem to want to take samples out of my hips, by way of holes in my backside. So, we'll see how that goes.  I haven't started chemotherapy yet, either, but I should be starting that soon, too.  I expect that it will be as aggressive as Cletus.  Not sure if I'll lose my hair or not, but I do rather expect this to knock me on my ass for a bit.

But, all that being said, I don't expect to die.  I think some people who have been following this the past couple weeks might be afraid that I'm going to, but I'm not.  I don't know quite what God has in mind for me, but I really don't think He's brought me through all the crap of the last five years to kill me now.  I just don't think it's part of His plan to kill me at 38 with so much left to do.
Rather, I think I'm meant to survive this, too, so that someone I haven't even met yet, who will need an extra helping of hope that I'll be able to provide after I'm well.  I feel this deep in my heart and bones.  I know that my life's purpose has not quite been fullfilled yet, and that is why I will, why I must, make it through all this.  I don't think it will be pleasant and I'm sure parts of it will hurt, but I don't plan on dying any time soon.

So, keep up your prayers for me, and keep on living your lives.  I'll be well soon and I'll do my best to keep you all updated via the blog.
Thank you for your support.

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!

Well, there's even less to report so far this week.
My paperwork is being sent from the pulmonary/thoracic area to the lymphoma specialists.  So, instead of getting a date with an oncologist yesterda, I got shuffled into another paper queue for two days.  When I finally get to meet this oncologist, she better be cute and single!
I've already informed my "inside man" at MD Anderson where we are in this process.  They promised me that they'd keep watch over my paperwork and make sure it gets to the right place and people.  Unfortunately, I forgot to put in my request for a cute, *red-headed*, single, *female* oncologist, so there's no telling who I'll end up getting poked and  prodded by eventually.  I really must learn to make notes to remind myself about the important things.

On a lighter note, I've named my tumor Cletus.
Why "Cletus" you ask?  Well, he's sort of inbred, swimming at the wrong end of the gene pool and no one really wants him to show up at the family picnic, so Cletus just seemed to fit.  (With apologies in advance for anyone with a favorite relative named Cletus.)
Besides, giving the little bastard a name takes away a little bit of the fear that's developed while waiting for a full diagnosis.  Sure, a tumor named Cletus may make you shudder in disgust, but who can really be afraid of anything named "Cletus"?

When I finally get an appointment with an actual doctor who might actually tell me something useful about my tumor and treatment, I'll let you all know.

A funny thing happened this weekend that reminded me of two things from my youth.

I won't go into what just happened, but it involved gossip and reputations.
What it reminded me of, however, was two girls I knew in the sixth and seventh grades.

When I was in the sixth grade, a lot of us had already started that magical time of our lives called puberty. Naturally, some of us developed at a somewhat faster rate than others. For instance, my voice changed one weekend to the start of the rumbling basso profundo whose mellow tones you heard almost two years ago, reciting poetry. But, it was the girls who developed early that had the most problems.
There was one in particular that made quite an impression on me. Her name was Lindsey and she had the unfortunate last name of Popper. Naturally, having developed a figure in the sixth grade led to all sorts of ways to use that name in childish ways. But, what I remember of Lindsey wasn't that she developed early, really. I remember this girl who moved from Atlanta, Georgia to the very different suburbs of Chicago being shy and lonely. She had very long hair, and she used it to show me an interesting little trick. In one of those strange moments of childhood intimacy, we were together in the back corner of a classroom with no one but the teacher around. She pulled one of those long hairs and made it into a kind of noose or leash, then she caught a fly and used her hair to make a "pet" out of the fly. In that small moment, I saw the sweet, tender girl that she was, not the false reputation that her body had earned her from jealous girls or spiteful boys. She was just another child of God, filled with wonder at the world and sharing that magic with me.
We became sort of secret friends after that, because, then, as now, I was tragically unhip and I knew it. We hardly talked after that, because her "boyfriend" liked to pick on me, but, every once in awhile, Lindsey and I would share a secret smile and remember that day when she was just a person revealing herself to another person. I learned more about the opposite sex in that moment than probably any other. Sadly, I forgot it for many years and I'm only relearning it now.

The other girl, from the seventh grade, was named Marcy Bloom. Also an unfortunate name for nice girl who, if you'll pardon the pun, blossomed early. We were in a music class together that was a big deal. The teacher was very well liked and at the end of each semester, her class put on a small production with dance moves and top 40 music of the day. I shudder to think about the fact that we actually danced to "The Stroke (aka Stroke Me)" by Billy Squire.
In any case, I'd been out for a couple of days for some reason, either family vacation or illness, I don't remember which. So, as a result, I was behind on learning the feeble dance moves that uncoordinated adolescents were capable of learning. Marcy was assigned the task of helping me catch up. I was rather not well accepted by the "cool kids" back then, seeing as how I was a total dork, so she was a little apprehensive about me to start with. Add to that the fact that every guy in school used to watch her chest when they talked to her and, well, I think you can probably see why she was less than happy with having to deal with me. But, I made up my mind to just be nice and polite and make a lot of eye contact. By the time I was caught up, she was totally at ease around me and even gave me a hug for something I did or said.
The lesson learned? Women, especially those who God has blessed a little extra, prefer to be looked in the eye, not the nipple. A lesson that serves me well even now.

No, nothing new about my health.

Just some fun/strange news stories from the past week or so.
First, apparently, some political unrest in Africa is going to cause a world chocolate shortage. Yikes! (Actually, if you read the article, it's more likely to cause prices to go up, slightly, because manufacturers have likely taken some of these problems into account.)
Then, in an impressive variation of "Man Bites Dog", there was the story about a teacher being "reprimanded" for biting a student. But, before you decry the sad state of our proessional educators, the poor man, who happened to be the wrestling coach, was being attacked by several of his wrestlers who were trying to give him a wedgie. The kids got, basically, a scolding and were otherwise off scott-free. But, the assualted teacher got into trouble. That is what's wrong with our education system today. Those kids should have been brought up on charges! Damn psycho-jock brats!
Thirdly, here's a news story that proves what I've been telling my mother for years: it's not a mess, it's my system. Apparently, there is a direct link to a messy desk and higher productivity after all. See?! All this time I was right! HA!

And, as a bit of a bonus, here's something for all the folks thinking about getting married soon: How to Tell that the Honeymoon is Over. In short, to summarize the article, you know your new marriage has taken a turn for the worse when your new spouse tries to run you over in the car. It's a sure sign.
And, on a more personal note, yesterday was the anniversary of my adopting Hilda from H.O.P.E.. I know because someone I used to volunteer with there e-mailed me after seeing my blog. Apparently, she was checking on who had linked to their website and the post, four years ago, where I talked about adopting my darling girl, was one of the prominent links. If you're in Houston, and thinking about adopting a dog, or cat, H.O.P.E. is definately the way to go. A great organization that I'm proud to pay dues to annually, even if I don't have the time to volunteer for them right now.

So, in any case, I hope one of those things made you smile a bit on this Friday. Either way, enjoy your weekend!