(and lights)

Today was a busy busy day. Well, it didn’t start off that way. I spent most of the morning watching my Arrested Development DVDs, the best comedy show ever put on a network. Then suddenly after lunch, a transport person shows up to take me for my EEG. Sweet!

I packed up all of my stealables and hopped on the stretcher. You have to be taken on a stretcher to an EEG in case you have a seizure while you’re down there. I guess that way it’s easier to push you out into the street.

As we left the floor, each nurse’s station had at least one of my many doctors at it, who all waved and asked if I was going for my EEG. Okay, so maybe I groused a little about being stood up yesterday. Who wouldn’t? I asked the transport guy if it was a bad thing that every desk we passed had one of my doctors. Before he could reply, SuperCoop came down the hall toward us as well. I’m POPular

At the last desk, I met a first year opthamology resident who was going to be looking into my eyes. She stopped us and asked a couple of quick questions, then put some numbing and dilation drops in my eyes so I’d be ready for her after the EEG.

We finally made it downstairs, where I made the EEG tech’s day by being bald. Much easier to place all of the electrodes on skin than on hair. The worst for them are the in-betweeners: the chemo patients who are just starting to lose their hair and haven’t shaved yet. Talk about embarassing for both parties involved.

The exam itself was pleasant for the most part, just lying there on the stretcher with my eyes closed and breathing calmly. Then came the end portion with the Flashing Light From Hell. They were either testing my epileptic response or my patience tolerance. The thing would flash like crazy at me through my closed eyes, then I would have to open them. Are you kidding me? Then she’d speed it up. Repeat. And faster. And faster. I felt like I was in Willy Wonka’s boat ride.

The eye resident followed me downstairs and started doing some examining while we waiting for me to go back upstairs. This primarily consisted of shining lots of lights in my eyes. Then we get back up to my room. She closes the curtains, shuts the door, dims the lights… and shines more bright lights in my eyes. Only this time, she’s got this magnifying glass thing like you use to fry ants on the sidewalk! When she left, I was seeing everything through a hot pink fog. Psychedelic, man.

I called Barb to let her know what had been happening for the past few hours and the eye resident stuck her head back in to tell me she was going to take me to the eye clinic to have more people look at my eyes. Great.

We make it to the eye center and she gives a third year resident a call so he can come take a look at me. In the meantime, she looks at my eyes again using the real equipment, rather than the handheld stuff. She also finally sees my ols corneal scar this way. You see, I was a forceps baby at birth and the doc scratched my eye and the surrounding areas when he yanked me out. As I had told her earlier, this is my test when I go to a new optometrist. If he sees it, I stay. If he doesn’t, I move on down the list.

So third year gets there and starts looking at me with the wicked bright lights. Right off the bat: “Were you a forceps baby?” You’re hired, Mr. Third Year. At least that’s what I thought until he started poking me in the eyes. First he’s looking at me with the bright light and the ant-killing magnifying glass, then he’s got a stick in his other hand that he’s using to press in on my eyeball!

What are two things that eye doctors always tell you not to do? Don’t stare into the sun and don’t press your fingers into your eye sockets. Do as I say, not as I do.

So after he’s looked for awhile and confirmed first year’s findings, they go outside the room to call the retina resident fellow. As they’re doing so, they run into the actual retina specialty honest-to-goodness doctor. Apparently, it’s been awhile since third year has been in her presence, so they’re outside catching up for awhile.

There’s a reason I like dogs – I understand them. When I get bored and I’m feeling ignored or forgotten, I act out and occasionally get myself into trouble. This time, I was safe on the trouble part. I was exceedingly bored and forgotten, so I started playing with all of the equipment. I was in a typical eye exam chair with all of those neat opthamologic devices right in front of me. What else could I be expected to do?

So I pulled that light torture device to me first. Not much of interest. There was the joystick thing they play around with, but without the light being on, I couldn’t see what I was moving. Then I moved to the real treat – the superhero mask with all the little lenses. That kept me entertained for quite awhile. I really enjoyed flipping around that little “Is one better or two?” lens they’re always playing with. There’s all kinds of dials for them to play with over there. Next time you’re left alone at the eye doctor’s, give it a looksee.

Eventually, they all come in to the room (but not after I accidentally flicked all of the lights on and off. Honest, it was a power surge. I saw nothing.) and I find out who’s been taking up the resident’s time. Turns out, it’s basically the head of the clinic. Sweet! She gives me a quick exam and agrees with what the residents were seeing. The funny thing is, each one of them did the same exams, but as you went up the experience ladder, each one was faster.

Okay, I’ve kept you in suspense for enough time – the results. Basically, they can’t see anything that would definitively be causing the spots I’m seeing. They can see the floaters I have, but that’s something different. They also see two white spots in my right retina. I believe they called them something along the lines of “cotton balls.” I almost replied “nylon ass!” but was too intrigued to interject. Plus, everyone was still pink.

So these white spots could be caused by any number of things, but they think the most likely scenario is from me being anemic and neutropenic after the SCT. They want me to come in to their retina clinic on Monday morning so the fellow can take a look in my eyes with bright lights and poky sticks and they’ll also take a photograph of my retinae so they can see how they change over time. Basically, the cure for these white spots is to wait it out. Once whatever caused them is fixed, then they’ll eventually go away.

I received some great and glorious news when I returned to my room – I’m getting out tomorrow! They said if I really wanted, they could rush things and get me out tonight, but they’d prefer it if I stayed on through the night. For once, I’m not going completely apeshit in here, and I think that’s primarily due to this here laptop. Thanks again for letting me borrow it, Sue – you’ve saved my sanity, such as it is.

So tomorrow morning at some point I get to go home and see if we can do things right this time. Yay!

Okay, I have my Rice Krispies in me, so let’s see what else we have to cover here. If you need to catch up, scroll down for parts 1 & 2.

The neurology team has been by a few times, specifically the oncology neurologist. They’re interested both in the spots I’m seeing and some of my more interesting pre-cancer history. They’ve done all kinds of neurology tests and tricks (spell “world” backwards) and at some point I’m supposed to be getting an EEG. Yesterday, the nurse stopped by at 1:30 and said I’d be having the exam in a few minutes. Since Barb was here, I had her take the laptop and various other stealables back to her office. The EEG never happened. I was going bonkers by the time the dinner trays got here. At that point, I was ready to refuse to go – they can make me wait, but they can’t make me miss food. Luckily for them, they didn’t show up.

So theoretically today I’ll be getting an EEG. We’ll see. I’m also supposed to be seeing a retina doctor at some point today as well. This should be interesting.

Let’s see, what else is happening with me? The cough is still there, though getting a little better. Previously, I would cough when I changed positions (lying to sitting, sitting to standing, etc), laughed or talked for too long. Now it just happens at random. I’m having occasional headaches, pounding like migraines, but not as consistently there. Like, I’ll feel okay just lying there, but if I sit up or cough, WHAMMO!

They did half of a sputum sample test on me the other day. Respiratory comes down and makes you breath in some noxious vapors for half an hour. These vapors make your lungs produce some mucous, which you can then spit up into a cup for them. Lovely, right? This is to see if I have PCP pneumonia, the big ugly one that affects people with suppressed immune systems. It’s one of the main things that historically kills AIDS patients, for example.

So the test itself is performed twice, two mornings in a row. However, the second day was the day after my kidney biopsy and the docs all thought it would be a bad idea to intentionally make me cough and hack for an hour. They called off the second day, so I don’t know if we’ll get half the results, or if we just have to do the whole thing again. We’ll see.

Okay, I know there’s a lot more that’s been happening, but it’s not coming to me right now. I’ll just have to sit and ponder a bit as I wait again for an EEG. In the meantime, know that my condition has improved greatly and everyone is still astounded at how healthy I look.

So, I’ve got that going for me.

Okay, I didn’t plan on leaving you in that much suspense, but it turns out my room’s not so close to the wireless access point and has a rather spotty connection. It works this morning though, so I’m typing as fast as I can.

So, to pick up where we left off, I wound up receiving 1500 cc’s of fluid at the clinic before my PET scan. This time, rather than looking for cancer, the PET was to look for infection. Apparently it shows those too – go figure.

I walked over to the PET place and drank the horrid gastrografin mixture. I brought my own water this time and it didn’t really make that much of a difference. It was slightly less horrid, but only slightly.

After the exam, the tech came in the room to get me out of the tube and asked me about the chemo I had had between the last scan and this one. I explained the thymectomy and the BEAM/SCT. He said he was just wondering because he had looked at the previous scans and there was a big area of uptake in the center of my chest (you know, the alien) and it was gone in this scan. Yes, you read that right – gone. Of course, he’s not the radiologist, but later the rads agreed – no more uptake in the center of my chest. The alien’s gone!

As for the rest of the scan, I was unusual as usual. Namely, my kidneys were showing uptake in ways they don’t usually see. At this point, I’ve got my new bed in the hospital, next door to the bed I had last time. I have a slightly smaller window and older bed, but the rest still feels the same.

Next begins the procession of doctors. SuperCoop and Erin, of course. The usual groups of residents, interns and students (on one visit, I had four stethoscopes on my back as I hyperventilated and three others tried to figure out how to nose in and listen). The nephrology team. The neurology team. The respiratory team. Just to make sure I hit all of the bases, I’ll be seeing the retina expert later today. Maybe I should fake some foot pain to get those lazy podiatrists off their butts.

Probably the most important of the teams has been the nephrology team. They’re the ones who deal with your kidneys and urinary system. Not only was I peeing less and less (after filling that specimen cup, the next five or six urinations would have barely filled the cup. After 1500 cc’s of hydration), but my creatinine level was rising. The creatinine shows how well your kidneys are working – the higher the number, the worse they’re doing. Mine wasn’t outrageously high, but along with the other issues, it wasn’t good.

The first I heard from the team was through my nurse. They had given her an order to put a foley catheter in me. I’m not sure I’ve expressed my views on the catheter before, but to say I was displeased is to put it very lightly. My nurse was behind me on this too, as she didn’t see much of a reason for it (I’ve had some great nurses during this stay) either. You see, the main point of a catheter is to drain your bladder. In my case, my bladder was staying empty – there was nothing to drain out. All of my urine was somewhere else. So we made an agreement that I was a difficult patient about this so she wouldn’t get into too much trouble and then I could discuss it with the nephrology team. I told her to feel free to tell them I threatened her with my fork, and kept it from my tray to back it up. Also, you never know when that sort of thing will come in handy.

Turns out, they figured out on their own that putting a catheter in me was a stupid idea. I didn’t even get to stab anyone. Sigh… So they got my history and went into a huddle. The initial verdict was an allergic reaction. With the pain and reduced urine output I was having, along with the timing of it all, it was their belief that the oral antibiotic I was given after my last stay (avelox) was causing an allergic reaction in my kidneys. The other possibility was that at some point while I was at home, my blood pressure dropped dramatically. When they say dropped, we’re talking a top number in the 30’s or 40’s rather than the normal 120’s. When this happens, it makes the kidneys decide to start shutting down.

So how do we decide which one it is? One of three ways:

1. Leave it alone. Both of these situations can resolve themselves over time, and as long as I stay off the antibiotic, any allergic reaction should stop. The drawback to this is, if my creatnine levels get too high in the meantime, I could have to get dialysis to support my kidneys. Plus, it could take a long time.
2. Start taking some steroids. Assuming the problem is an allergic reaction, they could hit me with a lot of oral steroids, which would calm the inflammation and speed the recovery time. The drawbacks would be the usual ones when you take steroids.
3. A kidney biopsy. This would tell them exactly what was going on with my kidneys and they can focus the treatment. The drawbacks here would be a little pain for me and the chance that it’ll show an allergic reaction and we’ll do the steroids anyway. They also made a biopsy sound quite scary.

They were leaning towards the steroid route. Everything they saw pointed toward an allergic reaction, so they might as well get me going on it. They just needed to look at a urine specimen and check my creat levels in the morning.

The next morning, the nurse comes in and says I need to be sure and not eat my breakfast, since I was having the kidney biopsy that afternoon. Pardon?

We get the doctor dragged in to do some ‘splainin’. He said it was all kind of a quick decision with a short window. The specimen was pretty inconclusive, but that my bloodwork in the morning showed a major jump in my creat levels. Basically, if we didn’t get the biopsy done that afternoon, it would be a few days before we could get it done. That would be quite bad for my health. So they made the quick decision to do the biopsy and didn’t get a chance to come talk to me before the nurse did.

So after hearing the explanation, we agreed this was the best course. They did a CT-guided needle biopsy and it was quick and relatively painless. The worst part was the numbing part. After that, it was cake. I haven’t really felt any pain at the biopsy site either. At least until the doc stopped by the next day and poked at it.

Most of the results are in and they point to the low blood pressure situation – ATN, or acute tubular necrosis. There was some evidence of an allergic reaction, but not as much as they would expect to see. They said this could be due to my lowered immune system. Without a normal immune system, I can’t throw as much stuff at the problem, so therefore, less would be seen. They’ll be getting more refined results from the slides back in a week or so.

So what does ATN mean for me? Basically it means sit and wait. ATN is completely reversible given time and lots of fluids. Already my creat levels have been coming down, almost as dramatically as they were going up. Plus, I’ve finally started feeling the urge to urinate, meaning my kidneys are finally passing stuff to my bladder. And as for output, let’s just say Barbaro’s got nothing on me.

Breakfast’s here and I’d better get this posted before I lose my connection. Part 3 coming up shortly. Hopefully.

First off, I’d like to give a big thank you to Sue, one of my wife’s coworkers who has graciously and awesomely loaned me her laptop with a wireless card. She’s totally awesome and headed for good places.

“Why does Brian need a laptop, other than the usual geek reasons,” you ask? Because I’m back in hospital again… back where a friend is a friend… Sorry, I’m feeling cowboy-ish for some reason this morning. Must have been from the nephrologist/fork incident yesterday. Since I’m sitting here in my hospital bed, that means two things: my email replying will possibly be even spottier than usual (my webmail system is kind of a pain, though if I’m in here too long, I might finally catch up on correspondence) and this will be a super long post. Lucky you!

So over the weekend I wasn’t feeling so hot. Well, sometimes I was feeling reallyhot, but sometimes I was feeling really cold. My temp kept bouncing from 99 or so up to 101.9 and back. Erin had said we didn’t need to call in unless I was at 102, so I made damn sure we didn’t call, ’cause I didn’t want to wind up in the hospital again.

On Sunday, I started having kidney pain on the left side. It was the kind of pain where you feel like you’ve been punched in the back, and no matter how you roll around in bed, you can’t make it feel better.

Barb called Erin on Monday and they want me in for hydration and, you guessed it, a hospital admission. We arrived there around 9 and I started getting hydration. Found out around 9:45 that I was to have an eyes-to-thighs PET scan at 5:00 that afternoon, so I couldn’t eat anything after 10. The really fun part was that my last “meal” (still haven’t been able to eat much ’cause of the tastebuds thing” was around 5:00 Sunday night. Lovely.

So they pumped a good 1000 or so cc’s of fluids into me and I felt no need to go to the bathroom. I did feel both of my kidneys hurting at this point. My favorite nurse Jodi sat down next to me around 1:00 and explained just how bad it was that I hadn’t peed by this point. So, I decided around 1:25 that I would go ahead and give it a try.

Basically as soon as I stood up and took a couple of steps, I felt The Urge. I had to give them a specimen, and despite over 1000 cc’s of IV fluid at that point, I had just enough to fill their little cup – around 100 cc’s.

Holy crap – the nurse just came in and gave me Benadryl and my boady has IMMEDIATELY started to get tired. I’m going to go ahead and post this in case I pass out completely. I’ll give you part two either after I shake it off or after my kidney biopsy this afternoon.

Now that’s how you leave someone in suspense.

Yes, it’s reached that point again where I’m Sick Of All This Shit.

So the past few days have been interesting again. My temperature keeps going wildly out of control and now sometyhing new has been added – spots in my vision.

It all started around 3:00 AM on 7/28. Whenever my eyes were closed or open (in the dark) I saw colorful spots. These spots are like the afterimage you get when you look directly at a camera flash. The only trick is, there’s a whole bunch of ’em. Imagine staring at the sun through a lace curtain or a tree’s leaves. You’d probably wind up with a lot of little spots like me. If there’s some kind of light on, I primarily see them when I blink. If it’s bright, like outside in the sun, it’s harder to see them. Basically, it’s been constant since 3 that morning. I had a head MRI on 7/28 to see if they can spot anything. They didn’t get all stuttery and hold me there, so I must not have a big ostrich egg sized tumor in my brain, so that’s something.

So just to clarify the spots a little more, these aren’t the “I’m dizzy and about to faint” flashes. For me, those present as little electric worms shooting across my visual field before the darkness closes in. So basically, I don’t have to be dizzy for them to show up. They’re also not “floaters,” as I’ve had those for a long time and they’re totally different. I do have a history of migraines, but I’ve never had visual symptoms with them.

The word came back yesterday on the MRI. Apparently I have three small “abnormalities” in the occipital lobe of my brain – that part in the back that controls sight. SuperCoop said they’re really minor and that the radiologist probably wouldn’t have mentioned them in the report if he (SuperCoop) hadn’t been right beside him and hounding him. Apparently, it just looks like my occipital lobe is older than it should be. Or at least belongs to an older person. I guess that’s why I’m wise beyond my years, but it seems like this should enable me to see into the future or something.

SuperCoop said he’s doing a big literature search right now to see if he can find any references to this happening anywhere to anyone. So far, he’s found a paper from 1999 where a patient had a similar experience after an SCT. He’s going to have me do a follow-up MRI in a couple of weeks to see if there’s any change. Also, I get to go talk to the radiation onc soon to talk about the nuking process.

The last thing, we did another chest x-ray on the MRI day and it came back as clear. Apparently I’m just imagining that I’m coughing my brains out. Thankfully, it doesn’t happen too often.

Well, there’s been excitement since the last posting. About an hour after I made that post, I was in the hospital being admitted for a fever. It was around 101 when we left home, 101.6 when we arrived and 102.4 about an hour later. At some point after that, I finally started cooling back down. I was in the hospital from Saturday night through Tuesday morning, and by Tuesday morning I was well past ready to get back home. Actually, I crossed that line Sunday afternoon.

They took a chest x-ray of me Saturday night and read it as me having pneumonia. Dr. Cooper felt that since I had a chest CT just that morning that showed no pneumonia, it must have just been a bad x-ray. They took another Tuesday morning before I left and I found out today that the area they read as pneumonia was clear, but now there was fluid elsewhere in my left lung.

The floor nurses didn’t give me printouts of my labwork like the clinic nurses do, so I don’t know what my blood’s been doing the past few days. I do know my WBC was 1700 yesterday, so today is a move in the right direction. Erin said that after you get taken off the neupogen, you can have a big drop in your WBC, so it’s good that I’m climbing back out of the hole. Today all I needed was some hydration and bloodwork. Tomorrow will more than likely be the same. Looks like everything’s finally on the way up.

Now it’s time to go lie down in the air conditioning again.

Since my arms are getting weak, here’s the update I just posted over on the Hodgkin’s forum:

Well, I’m back from the clinic where I’ve had a meteoric rise in my WBC – 600 yesterday, 2800 today. Booyah. I’m officially not neutropenic! Let’s hear it for neupogen! SuperCoop did blanch a little when I mentioned diving into the public swimming pool or wrestling a herd of toddlers. I’ll go ahead and put off those activities ’til next week.

The only other thing I have going on is a weird bubbling sound/feeling in the lower lobe of my right lung. SuperCoop sent me right over for a chest CT which was mostly inconclusive. There’s a little bit of fluid in my lungs (I blame Netflix) and around the middle of my lung is a thing that had a name that started with “A” which I’ve already forgotten. Basically, it appears to be an aftereffect of the thymectomy, where possibly some scar tissue is preventing my lung from inflating all of the way in that one spot/band.

Speaking of thymectomy, the oncology fellow (who was actually a woman) walked me over to the CT and was asking all about my history and the thymectomy. When I told her that the Beckster thought he had gotten about 90% of the mass and that it was much more difficult than he thought it would be (10 hour surgery instead of 2 hour), she said “oh yeah – you’re the one where it was attached to the lining of your heart!” To which I astutely replied “Bwuh?” Looks like the alien inside was going after my tasty bits and didn’t want to let go. Go figure.

So tomorrow I go in for a little bit of fluid and a listen to the lungs, but probably not much more needs to be added to my system. Plus, the best news of all!

Today was the last of the neupogen.

This will be another short one – it’s getting steamy in the office and I’m still in a bit of a Benadryl hangover right now.

My WBC is rebounding like gangbusters. Yesterday it was .1, or 100, and today I’m .6, or 600. Dr. Cooper and Erin were both grinning from ear to ear and rather excited about the whole thing. SuperCoop even said that I would probably not be neutropenic as early as this afternoon. That would mean I can go back out in public and eat restaurant food and such. Giggedy giggedy! We’ll know for sure where I stand with tomorrow’s blood count.

Aside from that, my platelets were starting to bottom out again at 16, when the normal is 150-350. I think around 25 or 30 is when they start panicking and giving platelets, so yeah, I’m low. This platelet infusion went much better than the last one, where I got super-nauseous right as we were trying to leave the place.

I also got two bags of potassium which are tiny little bags, but have to be given over the course of one hour each. I’m going to have to find something to read tomorrow – today almost made me finish my sudoku book.

Yesterday afternoon the neupogen pain finally started in my lower back and it’s been a bear. I just try to keep the tylenol flowing to keep it under control.

Well, back to the cool bedroom I go. More tomorrow when I’m brimming with white blood cells.

Hey everyone, I’m finally back. Due to the current heat wave, I’ve had to stay away from the computer, as it’s located in our non-airconditioned office. Plus, the folks were out here for the past week, so there wasn’t as much pressure to race in here and update everyone since my top two readers were here in person. Now everyone’s spread out again, so you all get to be updated again.

It’s a little cooler today, which brings me to the computer, but still not supercool, so this’ll be kind of short. Maybe more tonight when everything cools down again.

Today’s appointment went well, and after a few days of my white blood count (WBC) being less than .1 (4 is the low end of the WBC range), I’m finally back to being AT .1! That means that somewhere in my body, I’ve got a white blood cell bouncing around in here!

Two days ago (the day my parents left), my hair started hurting in that pre-fallout way, so the folks got to see us go through the shaving process. That was also the day I had one of my more severe reactions at the clinic. I had to get platelets on that day and right at the finish, my stomach decided it did not want me to leave just yet. I wound up getting some wonderful IV Ativan and crashed on a stretcher for a few hours. Afterwards, no ill effects.

Today’s was uneventful, even boring in comparison. Just the typical hydration, Zofran (antinausea) and antibiotic with a neupogen chaser.

Now it’s time to go lie down and rest my arms for a bit. Once it gets cooler, I’ll backtrack and tell you all about some of the experiences since I was last out here. Until then, know that I’ll be slightly more regular in posting the day-to-day. Unless it gets hot again, of course.

Well, tomorrow’s the big day – I go back on the sauce. I think we’ve done what we can to get ready for the latest chemo. We’ve moved around all of the heavy things in my workshop I want to have moved around, we’ve tried to put away all of the heavy things that need to be put away, I’ve signed up for Netflix again and we’ve put an air conditioner in the bedroom.

One additional way I’ve been getting ready – freaking the hell out. I am so not ready to start poisoning myself again. Here I thought having a layoff would be good for me, instead it’s given me the time to realize just how good it feels to feel normal. Well, except for these last few days. My sleeping pattern’s been all screwed up, partly due to the heat, partly due to the frickin’ Itch coming back with a vengeance, but probably mostly because of the trials ahead.

Other than the sleep thing, I think I’ve been keeping it together rather well, but you’d have to ask Barb for the real verdict. She always sees right through me. I know I’ve been mopey on occasion, and worse as Day -6 grows nearer, but I haven’t been completely inconsolable, I suppose.

I was going to go see Superman Returns today, as Barb and Mary went for a day at the spa. I figured it would be a good last day cheery thing to do for myself. Instead, it was pouring rain outside when I wanted to leave and I wound up falling asleep on the couch. Sleep is relaxation… TO THE EXTREME!!! After I woke up, I grilled a couple of steaks (take two, they’re small) to near perfection and watched Snatch for the billionth time. Still makes me laugh like a loon. Vinnie Jones should be in every movie.

Well, I guess I’ll go back to doing something else, assuming I can think of something to do. Maybe I’ll spend the next couple of hours trying to figure out how I’ll sleep through the night. Whee.