Diary of a Network Geek

Wow, it’s been a long time since I updated my blog!

So, I’m sleeping well, my appetite has almost returned to normal and I’m starting to get a little energy back.  Must mean it’s time to check into the hospital for more chemotherapy.  And, in fact, it is.  My bag is packed and I’m waiting on my ride, which will be here about noon.  I’ll be in for at least five days, during which time they’re going to put a new central line into my right arm, since I have a blood clot in my left arm still.  Not sure how long that will delay the start of my chemo, but, I’ll get about five days worth either way.
For those of you keeping track, I shaved for the first time in a month today.  Mainly out of nostalgia, but also because I felt a wee bit of stubble.  The rash is gone, but now parts of me are peeling and, still, itching a bit.  Still, at least I’m not purple, so it’s all good.

I’ll try and update this blog more often, but the chemo really takes it out of me these days.  You’d be surprised how much energy it takes to write and be creative!  But, in any case, I’ll try.  No guarantees, but I’ll try.

Well, I guess it’s time for an update.

I got a bit of a shock this past week.  Thursday when I went in for what I thought would be a regular doctor’s visit, they were talking about checking me into the hospital for my next round of chemotherapy. Apparently, there was a bit of miscommunication, or lack of communication, when I was checked into the hospital last time, since it was on an emergency basis.  All my chemotherapy is going to be inpatient, not out-patient.  So, in other words, every twenty days, or so, I’ll be checking into the hospital for five days worth of carefully controlled, medically monitored poisoning.  And, I get to do that at least four times, most likely six times, possibly more.
So, Monday, I’ll be visiting my doctor then checking in to the hospital for my next round of chemotherapy.

I have to admit, this whole process has left my head spinning a bit. Just as I was getting used to the idea of being weak and doing out-patient chemotherapy, not to mention the loss of my hair and some of the other minor side-effects, I find out that I’m going to be spending quite a bit of time in the hospital.  And, of course, that means that the chemotherapy they’re going to hit me with is most likely going to be as powerful as the last round.  I can only figure that means every round will be like that.  I’ll be honest here folks, that scares me.  That first round of chemotherapy really took it out of me at the end. Granted, I could’ve stood to lose those ten pounds, but I don’t think I can afford to do that four or six more times!
And, yes, I’m a little afraid of how I’ll be able to take care of myself after each round.  I thought my life would even out a bit and be more, well, “normal”.  At least, as normal as my life ever is.  But, I don’t think that’s going to happen for a couple of months.  Months.  Even thinking in those terms scares me a little bit.  Months of this… Well, so far, you all and God have seen me through, so I have to just trust that it will all work out somehow.  I don’t pretend to know how or what that will look like in the end, but I know that somehow, someway, it just has to all work out okay.  There’s an old Arabic saying that, translated, says something like “Where there is life, there is hope”, so that’s what I try to remind myself when things seem impossible.  As long as I’m still alive, somehow whatever life throws at me can be survived and overcome.  That doesn’t mean I don’t get scared or frustrated or tired, but I know that I just have to keep trying, no matter what.

So thank you for all you’ve done for me so far.  I hope I don’t have to ask much more of you all, but I’m afraid that I will need still more help.  And, as those old Bartyles and James ads used to say, “Thank you for your support”.

So, I’ve actually had a few side-effects this past week.

There’s been two, really, since I figure being totally exhausted just sort of comes with being slowly poisoned. That is, after all, what the chemotherapy does to me. The first side-effect is from that self-same chemo. Namely, my hair started falling out Thursday night. Slowly at first, but it picked up speed pretty quickly.
Friday, I had small clumps in my hand after washing my hair. Saturday and Sunday, though, I had a veritable toupee in the bottom of the shower. This morning was almost as bad. So far, it’s only the hair on my head that’s falling out. I still have my beard and eyebrows. So far. Since this is all rather new, those may yet go, too. And, thankfully, the rest of my hair is holding on, too. Not that I was a particularly hairy guy or anything, but, well, I’ve been told that it tends to itch in certain other areas when it grows back.
Oh, and I suppose that’s the “up side” to this side-effect: my hair will eventually grow back. In fact, I’m told that sometimes it grows back darker than before, so maybe I’ll have a little grey reduction and look younger than I did before! Hey, that’d be okay!

The other side-effect is less fun, but also more temporary. In this case, it’s a side-effect of the treatments meant to boost my white and red blood counts. I have to give myself subcutaneous injections of Neupagen every day for ten days. Well, actually, I only have three left, but it was for a total of ten days. And, yes, I have to admit, the idea of sticking myself with a needle freaked me out at first, but, honestly, it’s amazing what you can get used to doing.
In any case, the nasty, little side-effect of these injections is bone pain. Now, it was described to me as “mild bone pain”, but when this kicked in late Thursday night, it was anything but mild. In fact, I would have rated this right up there with kidney stones. Without any exageration at all, it felt like my joints were trying to twist themselves in the opposite direction of the way they were designed to bend. Amazingly enough, the doctor on-call told me to take Tylenol until I could get the other prescription filled and that took enough of the pain away that I could actually sleep. Now, of course, I have my pain meds and I’m a little “spinny”.
So far, no one at work has noticed.

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.

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.

Advice from your Uncle Jim:
"Love is that condition where someone else’s happiness is necessary to your own."
   --Robert Heinlein