So I just returned from a trip to Stop & Shop and discovered that Father Time drives a Benzo. In the S&S parking lot, I followed a silver CL500 with the license plate “Time” driving substantially under 5 mph. After wondering if Jerome was driving it with the big mirror in the passenger seat (come on people, stay with me here) and if Morris Day was in a Beamer behind me somewhere, I got a gander at the driver. Well, not the driver so much as a little bit of his gray hair, since naturally, that’s all I could see over his steering wheel. Who new eternal beings went for German luxury?

In cancer news, I saw SuperCoop today and everything looks okay. I’m going to be getting a PET scan in November sometime and it occurs to me as I type this that I have no scheduled appointment either for the scan or a followup appointment with SuperCoop. Oh well, I guess someone will call me eventually. I also set up an appointment to see a headshrinker (the licensed kind, not the aboriginal kind) and will perhaps discuss my Father Time sighting with her on Monday.

Oh, also as I was driving to the Stop & Shop (current craving: OreIda crispers. current need: bigger freezer) and I get to the end of my block, a lady is driving towards me and preparing to turn to her right as I turn to mine. As she turns and I see the side of her car, I think to myself, “What a nice lady, showing her support for someone in her life that has cancer.”

I tootle on down the street a ways and pull up behind a car at a stop sign and think, “Here’s someone else giving us… ‘Support Our Troops’? Ohhhhh yeaaaaahhhh… the yellow ribbons aren’t for us. Crap.”

I’m not sure if this means that cancer is still very much on my mind or if I’m just really, really self-centered.

The oven might be preheated now, so I’ll leave you with those nuggets. I have more to write on what I’ve learned (eventually) and I’m also going to be getting around to answering all of your emails really soon, so don’t despair!

First, the cancer update. I saw the retina folks yesterday and, after a 53 minute wait, found that my eyes are still doing slightly better. Two hours of sitting and a fifteen minute exam to find this out. I have an appointment in three months to do the same thing.

I also saw the dietician for the radiation therapy folks to discuss the types of stuff I should be eating right now, since my esophagus is acting a little wonky. Basically it boils down to avoiding spices, citruses, acidics and sharps. So no Thai, no oranges, no tomato sauce and no chips. She also was trying to paint a semi-bleak feature for me, mentioning that the esophageal effects could linger for a couple of weeks after treatment. Then she got around to asking where I was, treatment-wise. After hearing I only had three treatments left (two as of today), she changed her tune. Naturally, she didn’t realize she was dealing with a badass.

I’ve recently gotten it in my head that it’s time to start riding a bicycle. I’m thinking about getting a single speed mountain bike, ’cause I’ve never really been enamoured of the whole bicycle-shifting thing. A single speed bike is supposed to be a tougher workout that requires less concentration, which is right up my alley right now. The only problem I have (aside from finding a place that sells the one I want) is the image thing. The cancer survivor is taking up bicycle riding. You know what that means – Lance Frickin’ Armstrong. Thanks for spoiling it for the rest of us, Lance. Now everyone thinks we’re you or trying to be you. Maybe I’ll wait until my hair grows out some more, tell the shop owner I’m recovering from a shark attack.

Wow, a month can go by pretty quickly when you’re not paying attention. Let’s see how quickly I can get you folks caught up.

In my last post, I thought I’d be admitted to the hospital later that day. I was right. After a nuclear medicine study of my lungs and an echocardiogram, I was eventually admitted to the hospital. The primary reason for the admission was because SuperCoop wanted to have a CT of my chest done with contrast (aka x-ray dye). This stuff is iodine based and rough on the kidneys, which isn’t good when you’ve recently had renal failure. Thus, he wanted me in the hospital so they could overhydrate me and give me a drug called mucomyst, which helps protect the kidneys.

Long story short, I was in the hospital for six days and all they could come up with was a little pneumonia. In addition to the echo, nuc med and CT studies, I also had an MRI of my C-Spine and T-Spine (neck and upper back). Turns out I have a slipped disk around T-5 T-6 or T-6 T-7. Maybe it was T-7 T-8. Anyways, it was apparently an old injury but interesting to learn. Not quite worth the fifty minutes straight in the MRI tube, however.

Oh, and I got to meet with the radiation therapy folks who did my simulation on Friday (a CT exam that lets them figure out where they’re going to aim the radiation). I then receive three tiny tattoos in the form of black dots.

Immediately upon leaving the hospital that Saturday, Barb took me home so I could shower the hospital off me. Then we went to Moe’s Grill for a burrito and stopped by the movie theater to see Little Miss Sunshine. Great afternoon and the way everyone should get to leave the hospital.

The next week or two I was pretty depressed. Not sad depressed so much, but a combination of blah depressed and “don’t feel like doing anything” depressed. Unfortunately for you folks, that means no web updating.

Two Thursdays ago (9/7), I started developing a pain in my left shoulder. Initially it just felt like I slept on it wrong, but by Sunday it had progressed to an unrelenting stabbing pain down through the top of my shoulder. Put your hand on your shoulder. Not there – more between your shoulder and your neck. You know how you can sort of feel the gap in the bones there? That’s where the pain was.

Last Monday the radiation folks look me over and say it’s not ’cause of them, since this is out of the radiation field. Unfortunately, they don’t have the power to order random x-rays and such over at the hospital, so they recommend I go through the ER. Incidentally, everyone at Yale calls it the “ED,” which I know stands for “Emergency Department” (after having the first person who used this acronym repeat it three or four times), but it’s still wrong. An ER is an ER, not an ED. If anything is an ED, I would say a school is. Especially if it’s special.

Anyway, I go over to the ER and they zip me right in again (let’s hear it for cancer!). They take a chest x-ray and think they see some pneumonia. Guess who’s going back in the hospital. This time I’m in there for four days. This time was quite exciting because the floor just got brand new beds.

It really sucks that I know this.

After I had been there for a couple of hours, SuperCoop comes in the room, eyes all agoggle. “What are you doing here?”

I figure he’s joking and start gushing at length about the cool new bed (it was quite impressive after the clunkers they used to have, believe me) (still depressing). He stops me as I’m showing him how the head of the bed goes up and down silently to say, “No seriously – what are you doing here?”

Turns out the ER folks had been talking to SuperCoop’s fellows, who had neglected to relay to him that his star patient was causing trouble again. He was on the floor making his rounds and just happened to notice that my name was on one of the doors. Comforting.

So after four days and a few more random tests, I leave the hospital minus the shoulder pain and any knowledge as to why it might have occurred. It just stopped around the third day (same day I had a shoulder MRI), so they figured they couldn’t hold me there any longer. Damn straight.

So now I’ve decided that if anything hurts or feels weird I’m not telling anybody. Every time I do, I wind up in the hospital for a week. I’ve also decided that I looooooove dilaudid (aka hydromorphone). Up until this point, I’ve had a lot of different pain meds and I’ve remained puzzled that people get addicted to them. I’ve had morphine, percocet, darvocet and a lot of other pills you hear about suburban wives getting hooked on. As soon as I stopped hurting, I stopped the pills, no problem. No desire whatsoever to continue. After this stuff though, I understand. Aside from twisting my reality a quarter turn and knocking me on my ass, it left a definite impression in my brain that I liked what just transpired and would be quite happy to have it transpire again. Scary stuff.

Skip forward to today. I have four more radiation treatments (out of an original 20) as of today’s treatment – Monday will be my last one. I have a little bit of a sunburn on my chest and back where the radiation shoots through, but my skin’s been holding up pretty well thanks to early glooping of Aquaphor on the affected areas. Internally, I’ve been having some esophagus troubles. Originally, this consisted of a burning feeling right around the esophagus/stomach juncture. Now it’s turned into more of an indigestion feeling which sometimes morphs into… Have you ever swallowed wrong and it feels like your esophagus either gets a knot or swallows backwards? That’s kind of what it feels like. Often. But not enough to really bother me – just annoy me.

I think that does it. Today’s been a better day than usual – I replaced one of the headlights on my truck and got a spare key made for the house after locking myself out this morning. Idiot. That’s been safely hidden (no one looks under mats, right?) and my squirrels have been fed. You think I haven’t written here in a long time – it’s been even longer since I’ve fed my poor little furry buddies. They were going apeshit today over the piles of peanuts that suddenly appeared all over the deck. Eventually I’ll get around to taking some photos.

So, that brings you all up to date. Aside from locking my keys in the house, this has felt like a pretty good day, so hopefully that bodes well for keeping the blog up to date. Hopefully.

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.

Hey Gang

Well, we’re finally back on the net at the new house, so I can go back to keeping everyone up to date on what’s happening in the World of Me.

I made it out of the hospital the Friday before last, though it was a bit touch and go due to the recovering heroin addict sharing my part of CCU. Apparently wherever they go to dry out was full, so they were keeping him there with a 24 hour a day babysitter. I wake up the first morning hearing “Here’s your Ativan… and here’s your methadone.” Lovely. He did okay the first day, but then started flipping out more and more as the week went on. I didn’t get a lot of rest.

To top it off, it was astounding how slow time moved in CCU. Barb stopped by the first morning and then headed off to work. As the hours passed, I figured she must have said something to me about stopping by after work. Maybe she had a meeting or something for lunch. So I slept and I laid there and I waited and I waited. Finally, 5:00 must have arrived, because Barb was back! That’s the good news. The bad news was that she was indeed back for lunch. Rather than an eight hour wait, she had only been gone for about two hours. This time disjointing continued all through the week, with the nighttime being the worst of it all. Especially when the junkie would decide he needed to sweep around his bed at midnight.

So everything happened pretty quickly after that, getting the catheter out, the chest tubes later and eventually being plopped out on the street. I got to come home and recuperate in the new house and it was a very good thing. We were still planning on me overseeing the movers on the following Monday (last Monday), but Sunday night my fever started spiking, so Barb had to be in charge of the move. I must be worn out from all the chemo and such to not be able to follow around movers two days after being released from the hospital, right?

So Monday came and the movers did a fanTAStic job. They were incredibly nice and friendly, fast and strong. If you have to do any kind of house move, give Joyce Van Lines a call. I believe they’re based here in Connecticut, but give them a try if you’re elsewhere too. We had heard lots of horror stories about movers and moving companies, and not a single one of them came true with these folks.

So now we’re going through the whole unpacking thing. Between Barb and Bev and Mary, the first floor’s starting to look pretty presentable. I think I’m finally healed up enough to start lifting things, so I’ll be able to help out more as well. There’s nothing more frustrating to me right now than having all of these people (and mostly women at that) buzzing around me, doing all of this work and not being able to join in. Not to mention getting yelled at for trying to help out. Yes, I’m supposed to be resting and healing, but come on.

On Wednesday, SuperCoop gave me a call. He had the biopsy results, which showed Hodgkin’s Disease in the thymus. He said the best result we could have hoped for would be either an active thymus (the thymic rebound thing) or a thymoma. The one good thing about HD being found was that Dr. Detterbeck was able to remove about 90% of what he found, so that means a good portion of the HD has been physically removed from my body. Plus, hopefully that area won’t light up on PET scans anymore.

SuperCoop told me that depending on what Detterbeck thought about my healing, we could go right into the high dose chemo and stem cell transplant. He said that could be as early as this week or the next.

I thought I was okay with this, but a few hours later, the magnitude of it all finally hit me. Going through chemo again. This time, going through something worse than any of the others I’ve been on. The long road to recovery. The side effects. I had myself a pretty good little breakdown. I’m just so tired of it all. Tired of recovering. Tired of weird things happening to me and thinking it’s probably just a side effect of some drug I’m on. Tired of being a happy little soldier. Tired of fighting.

So now, I’m taking my own mini-break from cancer. I’m not going to be looking in on the Hodgkin’s forum every few minutes. I’m not going to think about cancer. I’m not going to think about the future or the past. I’m just going to be. I saw Detterbeck on Friday and he said SuperCoop can start on the new stuff whenever he wants. I see SuperCoop at 5 on Thursday to get the gameplan. Until then, I’m going to do my best to forget I’ve got cancer.

I’ll still be posting stuff out here, of course, but for the next few days, it’ll more than likely be non-cancer related. Thursday will be here soon enough. In the meantime, there’s plenty to be doing here around the house. Unpacking, storing, organizing, building… and if all else fails, I just sit and watch the squirrels.