Warning: Parental Advisory

I know it’s been awhile since I’ve posted here, but life’s been getting in the way a lot as of late. In the past two and a half months, I’ve dreamed up an idea for a survivorship movement, I’ve started selling t-shirts to get the movement’s message out there and get survivors out where people can see them, I ran myself into the ground trying to make a deadline for work, I’ve been to Texas for a Planet Cancer retreat and to visit my parents, I’ve been fired, and it looks like I’m on the verge of being hired again. There have been many trials and tribulations over the past couple of months, but more than ever, I’ve been feeling that “guiding hand” presence.

I’ve never really been a religious person, haven’t really believed in fate either. But with each step I take through this cancer journey, it seems that more and more I’m seeing things happening for a reason, and it seems that nine and a half times out of ten, that reason is to get me back on track with CiMB. Whenever I’ve felt down or strung out and tired from overwork or like giving it all up, something always happens. I’ll get a wonderful note from one of you complimenting me on what I’m doing. I’ll read a touching story that hardens my resolve to Do Something for my cancer surviving family. I’ll get some little something that gets me back on track and shows me that my path has already been written down somewhere.

Usually it’s something small like these things. Like they say, it’s the little things that mean a lot. Sometimes it’s bigger things that happen, like losing my job. After all, if I can’t work on CiMB because of all the time I’m putting into work, that guiding hand has to make it go away, right? It also has to then make another job available to me that will make me work more on CiMB, and it has. But now that hand has done the biggest thing and gotten personal. It took my friend Mike away from us.

We met Mike and Sarah at the Planet Cancer Young Couple’s retreat. They’re from California and were our roommates for the weekend. Mike was a survivor of the Hodge, stage IV, just like me. Only trouble was, he was diagnosed twelve years ago. All of that chemo and all of those years of fighting had taken its toll on his body, but his heart was still strong and he was prepared to fight this thing forever.

It’s amazing how close this cancer can allow you to get to people. From complete strangers to best friends – no – to family almost immediately. We bonded with everyone there and became one big happy semi-diseased family. And there was so much about that weekend that kept me inspired and kept me going when I felt like I couldn’t go anymore. Mike was one of the main images in my mind for so many reasons, so many of which (as has been typical lately) just resolved into anger. I never really indulged in the “Why me?”s through all of my treatments, as I knew there were plenty of folks who had it rougher than I. But Mike brought out the “Why me?” in me. Namely, why am I standing here, looking fit as a fiddle, while my poor buddy Mike has been through the wringer over and over again? Why did I breeze through when he had to fight so hard? It’s not fair. It’s not right.

I hate this fucking disease.

I hate the fucking politicians who won’t save our lives.

I hate the fucking media for turning the country’s brain into mush and going after sensationalism rather than news, or at the very least, get sensationalistic about something that actually fucking matters, rather than the latest update on where an ex-stripper is going to be buried.

I hate myself for setting my quest aside for work or for rest or for any of the millions of things I’ve told myself I have to do.

Sarah just got off the phone with us a little while ago, telling us of Mike’s passing. He loved his shirt and wore it proudly, which makes sense for a guy with a biohazard tattoo on his back. Sarah said that for that weekend, he was like the Old Mike again – no cancer, just life. I’m honored to have been able to spend even a little time with a real-life hero, and my anger over losing him is wiping my slate clean.

No more excuses, no more screwing around. In the next couple of days, you’re going to be seeing a lot of changes to this site. I’m taking my Idea live and I’m going to start tilting at some fucking windmills. For those of you who only know me in the real world or through this site, you might not have learned of the Grand Idea, but believe me, before long, you will. It would be a disgrace to Mike’s memory and the memory of all the other warriors we’ve lost to this cowardly, piece of shit disease if I fell asleep on the job again. We can’t afford to lose any more Mikes.

Mike, I know you’re up there in heaven and all, but keep giving ’em hell.

Oops… Still Alive.

You know how sometimes you’ve got this nagging feeling that there’s something you should have done, but can’t quite put your finger on it? It turns out that in this case, that thing was you, my lovelies. Or at least giving you guys the latest updates in Moondoggieland.

Actually, it’s not so much a forgetting as it is a remembering at the wrong place. Like thinking of posting something when I’m downstairs and worn out from a day’s work and two hours worth of sleep the night before. Then it all reaches that awkward point where there’s so much stuff to tell that I’m too tired to sit and type for long enough to get it all out. But you know what I discovered today? Stuff keeps happening. So I’ll just start typing and we’ll see just how updated you get.

First off, the biggest news I’ve been keeping from you, my loyal and adoring fans. I had a PET scan last Monday. This was a follow-up PET scan, specifically to check up on the cancer. Unlike those previous ones that were mainly to check for infections or weird pains and such. Last Tuesday, I visited SuperCoop for the answer.

I am cancer-free.*

In deference to my parents and grandparents, I will say “Holy expletive EXPLETIVE!”

No wonder four letter words are so easy to use – “expletive” is hard to spell and doesn’t quite look right.

So can you imagine how excited and thrilled and overjoyed Barb and I are? I can guarantee that you can’t, because you’d probably overguess us by a mile. It’s not that we aren’t all of those things, it’s just that our minds haven’t grasped the meaning behind the results enough to let us be ecstatic and giggly. In fact, I think some people are a little concerned with our rather nonplussed attitude. My current theory is that we’re so used to hearing bad news and expecting bad news that we haven’t fully figured out how to act when good news hits.

It does seem to be sort of time-released happiness, though. I’m definitely more happy, excited and giddy about it that I was last week. This time next week, I may be wetting myself with joy. We’ll see.

You might have noticed the asterisk on the diagnosis. That’s another reason we can’t be 100% ecstatic right now. Remember The Itch? The Itch that started this whole ride and would occasionally rear its ugly head? It’s been back in full force since just before Thanksgiving. Wasn’t this supposed to be caused by the Hodgkin’s? We all thought so. But hear I am, clean PET scan under my belt and torn up, scratched-through skin everywhere else. SuperCoop is rather stunned, since my PET looked so good. He checked me over and found one lump behind my collarbone that was negligble. He said with my PET results he wouldn’t think it was anything, but with all of this itching, he wants me to see an ENT and get checked out by someone specifically concerned with neck stuff just to be sure. He also recommended I go back to my dermatologist to see what he thinks. As SuperCoop said, since it doesn’t appear I have any cancer right now, there’s not much an oncologist can do for my skin.

I saw my dermo on Friday. We’ll call him Dr. Heald ’cause, interestingly enough, that’s his real name. Dr. Heald gave me a good looking over and tossed out a few theories.

  1. This itch we’re seeing is The Itch of 2003, which never really went away. You see, with most of my chemo treatments they would give me various steroids to keep down inflammation. That also keeps down itches. This rings true, ’cause looking back through my blog before the appointment to write down my full medical history (damn, these things are useful) I saw a recurring theme: I’d go through chemo, then a few days to a week later I’d freak out ’cause the itch was back. Not every time, but repetitive enough that I was surprised I didn’t pick up on it sooner.
  2. The itch is something new. That’s kind of a given, if it’s not the old one, it has to be a new one.
  3. The itch is something weird from the stem cell transplant time. There are a couple of possibilities with this one. One is that I picked up something weird in that post-sct time when my immune system was compromised. Maybe I have monkeypox after all. The other possibility is just that something weird happened. That one’s less likely, since my stem cells came from me. In scts where someone else is the donor, he said there have been instances recorded where really weird things happen. For instance, say Barb is giving me her stem cells and let’s pretend she has psoriasis. Turns out, there’s a good chance I would wind up with psoriasis by taking her stem cells, even though I didn’t have it before then. Weird, huh?

Right now, the theories are academic. We won’t know much more until we get a biopsy (which he did last Friday) and we have the results (which we get this Friday). In the meantime, he gave me a really strong antihistamine to take and some Elidel cream for my blotchy face. I dropped off the prescription after work and picked it up to find in my bag a tube of Elidel and an antidepressant. Pardon? I called Barb to make sure I heard Dr. Heald right. Yup, she heard “antihistamine” too. Huh.

Naturally, this is all Friday night, after doctors have left the office. All I have to go on is that he told me it would put me to sleep that night. The three nights previous, I had two, two, and four hours of sleep. This pill said “May cause drowsiness” all over it. Good enough for me. I get home, take the pill and go to bed at 10:00.

I wake up at 2:00 the next afternoon. Holy crap! And I wake up groggy too, like if I wanted to, I could’ve squeezed in a couple of more hours. Nice! The effect wasn’t as strong as my itching Saturday night or Sunday night and I’m back down to around four hours of sleep again. I called the office early Monday morning and they confirmed that while this is an antidepressant, it is also a strong antihistamine. The trick to it is, it’s one of those drugs that has to build up in your system before it starts to really work. The little Walgreen’s drug sheet just says it may take “several weeks.” Doc says the good thing about this drug is they can actually measure it through my bloodwork and see how well it’s working. My itch does already feel different. It’s not as… urgent. Like, sometimes I can almost ignore it for a little while. If I do happen to scratch, it gets just as maddening as ever. Hopefully this will improve with the ensuing days.

Oh, and just in case someone stumbles across this page on a random Google search (I’ve been seeing a lot more medical questions coming this way since I was diagnosed), I’ll state it plainly. The antidepressant doxepin is also a powerful antihistamine and can be used strictly for that purpose. I’m living proof. See the above paragraph if you skimmed to the good part.

So that catches you up to my life now, health-wise. We still have technology-wise and life-wise, but those will have to wait until another day. Now it’s time to go rest my weary hands.

No Wonder I’m All Sloshy

So it’s time for me to go on another Doctor Quest. That is, a quest for doctors, not a father of an intrepid young explorer, his Indian friend and small dog. I’m getting ready to begin my quest for both a primary care doc (haven’t had one really since my cancer diagnosis) and a shrink. The ADD’s been getting pretty bad as of late, and I need someone who can tell me whether it’s that acting up or chemo brain. Or both. The fun never stops.

Since the shrink may very well prescribe meds for me, I gave my favorite Kathryn a call to see if she could make a list of all the different chemo regimens I’ve had. She was able to, and holy moly. Turns out, I’ve had sixteen unique chemo drugs in the past year. Even wound up having a few of them twice. How’s this for a list of ingredients:

  • ABVD: doxorubicin, bleomycin, vinblastine, dacarbazine
  • ICE: Ifosfamide, carboplatin, etoposide
  • No-name #1: Cisplatin, gemcitabine
  • No-name #2: Ifosfamide, gemcitabine, navelbine
  • British MOPP: Chlorambucil, vinblastine, Procarbazine, prednisone
  • BEAM: BCNU, etoposide, cytarabine, melphalan

Wow. That’s one thing about SuperCoop – he’s thorough. I was doing a bit of research on some of these and whenever there’s a family of chemo drugs with subsets, I’ve pretty much had one from each of the subsets. It’s all quite impressive when you lay it out on a big piece of paper. I would hate to be the doctor figuring out my drug interactions for the next couple of years.

Back to Work I Go

Well, I did it – today was my first day back at work. That would be Day +122 for those of you keeping track of such things. I myself had to sit down with a pen and paper and do the figuring, so that number might not be right anyway.

Work went well. I’ve forgotten a lot of programming stuff, but I’m well underway in re-learning it all. I went up and down the stairs four times and was quite bushed when I got home tonight.

In other news (since I did no posting in the month of October – for shame!), we’ve rented out the Hartford house! They’re a nice young couple and love the house. So much so, that they’ve mentioned a couple of times that they really want to buy it when the lease is up in April. Cross your fingers that we have a mild winter so they won’t be freaked out by the gas bills. This came just in time for us, since we can now take the house back off the market and someone will be there to shovel the walks and keep the pipes from freezing. Plus, they’re covering most of our mortgage payment, which always helps.

Of course, the very day that the lease was signed and we got the first/last/deposit check, Barb’s check engine light came on. Then my airbag light went on. Barb’s car is gonna cost us $2600 to fix, and I’m pretty sure mine’s a short in the dashboard, as it does other weird things. For the truck, we’re doing research on trading it in and getting something that’ll be safer for me to drive in the winter. That’ll give me something else to write about out here, at least, right?

We had a moderate number of trick-or-treaters last night, with the best being our little next door neighbor. Her brother was dressed as Anakin and she was something furry (both near ten-ish). She asked Barb if Barb could guess her costume and after a little pause, perusal and a couple of spins, Barb asked “Are you a squirrel?” She was overjoyed, since in fact, she was a squirrel. Barb mentioned that squirrels were my favorite and how I take care of my little buddies. Turns out, they’re constantly feeding the little guys as well. No wonder we have such fat squirrels in our neighborhood!

One last sad Halloween note – I came very close last night to reporting some parents for child abuse. We had to return some pants I bought earlier in the day and around 7:30 the trick-or-treaters had slowed down to a trickle, so we went back to the store. When we get to the store, it was us, the employees and a family consisting of two parents and two kids, both within trick-or-treat age. Not only were the kids not dressed up for Halloween and out trick or treating, but they were in a clothing store SHOPPING FOR SHOES! Sure, if you have some wacked out religious beliefs, you can keep your kids from celebrating pagan holidays like Halloween, Easter and Christmas, but to instead take them shoe shopping? That’s just cruel and unusual.

Oh, and a quick website note – I’ve added some more warriors over to the Hodgkin’s Army list. If you’ve sent me your URL at some point, I probably have you added now. I’m going to make a resolution to start going through my backlogs of email and start replying to all of the people I didn’t get to reply to through the stem cell days and such. Better late than never, right? Right?

AWK! AWK! Hallelujah!

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!

It’s All Over But the Shouting

So today was The End – my last radiation treatment. Tomorrow morning I will wake up whenever my eyes happen to open and have absolutely nothing on my plate. Sure there are a few chores to be done, some honeydos to cross off the list and some TV to watch, but there’s not a one of those that has anything to do with cancer. I’m sitting here at the computer right at this moment, and all is right with the world. No aches, no pains, no itches, no coughs, no labored breathing. For this moment in time, I get to feel like a completely normal human being. It’s easy to forget that feeling after a few years.

As I sit here, scratching my shoulder since I was dumb enough to mention not itching, I realize it may be time to start looking back. Time for a cancer retrospective. Wait – no. That brings to mind ends of careers and TV shows. Less a retrospective and more an answer to a question. It’s a question I often find myself asking at the end of just about anything major I do (or stop doing) : What did I learn from all of this?

After all, I had cancer fer chrissakes. If you can’t learn a thing or two from this sort of experience, then you really need to look into your study habits. So I’ve been thinking about this whole thing over the past couple of days, running words and ideas through my head, hoping to run across something Poignant and Touching that would Stay With All of Us Forever and Ever. After a bit of that kind of thinking, I finally got over myself and just started thinking about the real answer to the question, audience be dam… err.. forgotten. For the moment. Yeah.

As I ran through different ideas and concepts and, well, things, I realized that I have a few different things I can take away from this whole experience.

  1. I’m much stronger than I once imagined. Not to brag or anything, but before this, I had always suspected that I had something like strength inside me. Something that set me just a little bit apart from a lot of the people around me. Whether it was getting back on the motorcycle after a big wreck, getting back on my skates after stopping a puck with my head, or just not whining about my latest cold, I had picked up over the years that my brain and my body handled things differently than other people. Cancer has just cemented those feelings in my mind and brought out my inner badass. I’m constantly running into people who are amazed at the way I’ve held up through all of these trials. The way I show up to my appointments with a smile and shrug off the pain, exhaustion and general misery that comes with this whole cancer thing. Do you want to know my secret? All you need is the strength to pick your times of strength. Am I strong 24/7? Hell no. Am I strong every second I’m in public? Every chance I get. Everyone expects you to be weak. To be tired. To be defeated. Why should you do what other people expect?
  2. Breaks that are repaired make those spots stronger. I know what that means in my head, though it doesn’t make a lot of sense when I type it. Here’s what I’m saying: If you take a stick, break it, then glue it back together, that spot becomes one of the strongest in the length of the stick. Assuming you’ve done the repair correctly, of course. What do sticks have to do with all of this? That stick is my spirit. I wasn’t strong 24/7 – not even close. I had a couple of major breakdowns in the course of all this, along with several smaller ones. But each time I was broken, I made the repairs and now I’m stronger for having broken. You can show your strong side to the world, but know that at some point, you’re probably going to break. When you do, you just need to glue yourself back together and you’ll be stronger for it.
  3. The world is full of amazing people. This is something you just can’t learn until you have some Major Life Changing Event. I’m often one of the first people to go around hating humanity in general, typically when I’ve been driving for a little while. This whole experience has reminded me of just how amazing people can really be when they’re needed. All of my family and friends have been exceptional, from the closest of the close to those we only see once a year or less. Everyone has been absolutely incredible. The doctors and nurses and affiliated medical workers have been amazing. Sure, it’s their job to take care of me, but I didn’t run into a single one who had been hardened by the whole Cancer Experience. The vets were just as loving, caring and optomistic as the rookies. The folks I’ve met over on the Hodgkin’s Forum have been spectacular and an amazing source of support for both Barb and I. They’ve managed to get us over some big bumps in all of this and hopefully we’re doing the same for them. Last but not least is you – the reader of this blog. Assuming you’re not already in one of the previously mentioned groups, you’re probably one of the folks who stumbled into me from a link somewhere or a mention from a friend. I’ve received a lot of emails from you folks and they’ve all touched my heart in one way or another. I also promise that one of these days I’m going to get around to responding to them all 🙂 I got a little behind with the hospital stays and all.
  4. Rest is very important.While I have learned a few more things, this is one of the more important ones. And having learned this one, I’m going to go to bed and continue this tomorrow.

I’m NOT Getting a Yellow Jersey

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.

Okay, Call Off the Dogs

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.

Might be Going Away Again

Figured I should put up a quick post since I think there’s a pretty good chance I’m going to be back in the hospital today. I don’t know if it’ll make any sense, since I’ve been whacked out on pain meds since yesterday and I’m still a little loopy/shaky.

Thursday when I saw SuperCoop, I had started having some chest pain. It was primarily in my sternum and felt a lot like the old Neupogen/Neulasta type of bone pain. It would appear rather randomly, though elevation changes (going from standing to sitting to lying down) would usually bring it about. I initially felt it was probably just my brain causing the pain, since that’s the area we were going to be discussing. I told Dr. Kang about it at the start of the appointment, then didn’t think of it again after he asked me some questions and did some poking around.

Friday was the same as Thursday, though maybe slightly worse. Saturday was horrible. I tried to put up with it for as long as I could, but it was too much. It had gotten to the point where if I was sitting up in bed and slid down a little, it would hurt. My cough also started getting much worse as well. The pain is a throbbing sort of pain that seems to be tied in with a really strong/hard heartbeat. You know how you can feel your heart pounding after you’ve held your breath for a long time? That’s the heartbeat thing. Imagine having that happen to you after your sternum’s been broken open and you’ll have an idea of what this is like.

Aside from the elevation changes, by the afternoon the pain was happening to me at random times when I wasn’t moving. We called the oncology fellow and he had us go to the ER. You want to get a private bed super fast in the ER? Be a post-stem cell transplant patient with chest pain. Not only do you get hooked up, everyone listens to you.

They took some blood and blood cultures and a chest x-ray. Everything came back normal. The doc came back in and said SuperCoop wanted to see me Monday morning. We walk out of the ER and suddenly my chest feels better. As Barb will attest, I did a lot of cursing at that point, as it seemed my stupid brain had indeed been pulling one over on me. I was miffed to say the least. Then, around 11:00 at night, the pain started coming back.

I woke up around 3 AM in searing agony. In addition to the whole chest thing, my left arm (that I was lying on) felt like it had been ripped out of the socket and poorly reattached. The coughing was worse, which didn’t help the chest or the arm. I finally found some of my pain pills and started popping them down. They don’t completely take the pain away, but at least make it less frequent.

Sunday was pretty much complete hell all day long. I couldn’t really sit comfortably or lie down comfortably or stand comfortably or walk… you get the idea. In addition, my head’s in the clouds from the drugs and my arms and legs are all wobbly. The pain at this point seems to be all around my chest cavitiy – back, front, shoulders, sides – if I cough or burp or breathe, different parts shoot pain through my body.

So yeah, today I’m pretty messed up and I’m getting ready to go see SuperCoop. Something bad is going on inside me and I don’t know what – I can only hope that they’ll know at the hospital. I’m figuring that they might hold me there ’til they get it all figured out or that this might be some kind of infection (can the lining of your lungs get inflamed and infected?) for which they’ll need to pump me full of IV antibiotics. Whee.

Mom and Dad – I’ll give you a call later tonight to let you know the verdict and where you’ll be able to find me. Everyone else, I’ll be back to posting whenever I’m back to posting.

The Groundhog Appears

Hey gang

Sorry I’ve been quiet lately – I saw that there was some franticness a bit earlier before Barb stepped in with an update. We’ve gotten to another one of those tired spots, where we realize we’ve been in a constant fight for fifteen months and a sporadic fight for a couple of years beforehand. We’re both getting tired and worn out, but The End is Near. No, not that End – the good End.

I think today is Day +37. I’m a bad SCT patient, ’cause I’ve never been able to keep up with my days. Makes sense though, since most of the times I can’t keep track of the days or dates. I saw SuperCoop and he says I’m ready for radiation. I got a call from the rad onc’s office a little bit ago and I’ll be seeing him on Tuesday. It’s either Dr. Rogers or Dr. Roberts, I would assume that depends on how beautiful Tuesday is in his neighborhood.

The actual results for that PET I had in the hospital were in, and said pretty much what SuperCoop told us – other than the kidney problems at the time, no Hodge was showing up. No talk of NED or remission or the like, but they agreed that the alien is gone. Not a whole lot of celebrating in the room, primarily because SuperCoop had already mentioned this and after going through surgery, it had better not be showing up. Plus SuperCoop was a little miffed that the thoracic oncologist got all the credit. “It says it’s gone after the surgery, but I gave you chemo afterwards to get rid of the stuff he missed and I don’t even get a mention!” I did notice that he was mentioned as being there looking over their shoulder while they read it, though I believe the phrase “pain in our ass” was redacted. SuperCoop’s the Man.

So now I just wait for Tuesday to see what/when happens next. My tastebuds are still majorly out of whack, but I discovered last night that Eggo’s taste good, so I’ll be burning myself out on those pretty soon. The homestyle flavor, not any of those fancy city-boy flavors like blueberry and whatnot.

So far, other than the mental struggle, that’s been the worst thing about the SCT experience – the tastebuds. They’re so screwed up it’s hard for me to eat, so I don’t get any energy, so I’m weak, so even when I feel up to eating, I’m too tired to do anything about it. If I could just get the food thing going, I’m sure I’d already be over this – it’s just at this point, I can feel the little bit of energy I have drain out of my arms and legs when I try to do things. Everyone says I need to force myself to eat, but there are very very few of those everyone who know what this is actually like.

The one thing I’ve found that’s consistently good to eat – Taco Bell crunchy tacos. Go figure. So far I haven’t burned myself out on those, but I am getting to the point where I can’t look at sweet or sour stuff anymore.

Since I feel like I’m just rambling at this point anyway, I’ll bring up my latest eye exam from the day before yesterday. The band of color I was seeing has mostly faded away, though I’m still seeing the arc in my right eye. I saw Dr. Portela, retina fella (if that didn’t make you laugh, say it out loud), and she said the spots they saw in my right retina a couple of weeks ago are getting smaller. They still don’t know if that’s the cause of the band or what else might have caused it if it isn’t, but at least things seem to be improving. This time I wait a month before a re-check.

So there you have it – the latest on me. Now I’m going to go crawl back in my little cave for awhile again. I’m sorry I’m not posting more, but I’m a little too tired to censor myself, and I’m afraid of letting out something bitter and angry in my current mood. You all know how that goes – good days and bad. So, once I have another good day or Tuesday arrives, I’ll be seeing you again…