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.

Day +14: WBC 1900

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.

Day +10: WBC 2800

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.

Today’s Rundown – WBC at 600

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.

He Has a White Blood Cell!

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.

Here Goes Everything

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.

Can’t Stop… the Music…

First off, I have to say I have no idea why I have “American Pie” stuck in my head right now. I must have done something really bad in a previous life, so this is my punishment. Well, this and that cancer thing.

I’m currently awake not because of Don McLean, but rather because of my head swirling into another deep depressing “I’ve got cancer” spiral. I’m not sure how I got to thinking about my previous career as an x-ray tech (in February it will be ten years since I’ve taken an x-ray. Man, I’m old), but somehow it spiraled and coalesced into more greiving about my current situation.

Perhaps grieving is too strong a word. This is nothing like last Wednesday’s breakdown. Merely more of a tired re-pondering of my current life. In the movie world, I’m somewhere between “Snakes. Why did it have to be snakes.” and “I’m getting too old for this shit.” So yeah, more tired than sad. In either case, it’s keeping me awake right now.

On Thursday, I saw SuperCoop to get the rundown on what’s happening to me next and when. All of the fun starts next Thursday, the 6th of July. It’ll be much as we expected way back in February – high dose chemo (BEAM) followed by the stem cell transplant. About a month after the SCT, I’ll get some high dose tightly collimated radiation to my mediastinum. For those of you who are scratching your heads, that means I’ll be getting a tight beam of radiation to the center of my chest. Here’s sort of what my upcoming schedule looks like:

Day -6: receive the “B” of the BEAM chemo: BCNU. I already forget what that stands for, but it’s long.
Days -5 through -2: I get the “EA” portion – Etoposide & Cytarabine. I think the Cytarabine is the “A.” I know, but what can you do? I get the drugs at the clinic in the morning, then again at night at home by a home care nurse. Two of the treatments are on Saturday and Sunday, so morning and night doses will be given at home.
Day -1: I get the “M” drug, Melphalan.
Day 0: I get my stem cells back. SuperCoop says it won’t take me as long as most, as we collected all of my stem cells in one day, which means they should be in one bag. They give me the cells back and super-hydrate me to help my body get rid of the extra red blood cells that were in with the stem cells. Once there’s no more blood in my urine, I’m free to go. One other thing to note, I will reek of creamed corn due to the preservatives they kept my stem cells in. Good thing I already hate the stuff.
Day +1: Rest day. As long as I feel okay, I don’t have to go anywhere.
Day +2 through Day +12: Show up at the clinic each morning for bloodwork, IV fluids, neupogen (yay.), anti-nausea meds and anything else they might need to pump into me.

After that, everything pretty much depends on how I’m feeling and how my counts are doing. Yay.

In happier news, we’re continuing to get our nest padded and organized here at Dogwood Place. It’s a weird experience after Whitney Street. In Hartford, we spent so much time just making it liveable that by the time we were able to live in it, we had already decided to get it ready to sell. Rather than making it a home, we began making it ready for someone else to live in.

Now we have our real home and what should be our last one. It feels so much different when we’re doing things here, because every action has a certain… permanence. I was going to say “finality,” but us cancer patients shy away from that word. “Permanence” gets the point across though, I think. The things we’re doing to this house are not to increase the selling value, they’re to increase our enjoyment and comfort. As I’m lying on the floor, upgrading our electrical system from two prongs to three, the thought hits me that this may be the last time I ever do this in our house. Once every outlet has three prongs, I’m done with that job. We won’t be moving on to another place that I have to do electrical work on.

The thought astounds me.

I think the idea of permanence has really helped out my perfectionism as well, at least in the arena of home repair. While there’s still a needling need for doing things perfectly, since this is Our House, I can now sometimes take the broad overview and say to myself “It isn’t absolutely perfect, but it’s good enough to last for twenty or thirty years until it drives me crazy and I have to make it perfect.”

That being said, I still have yet to get everything moved into my workshop, as everything there naturally has to be “just so.” I tell myself it’s just because it’s a small space and I have to make sure I have enough room to do what I want, but deep down I know the real reason.