Diary of a Network Geek

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.