Thursday, September 29, 2011

The Cyclical Nature of All Things, and The Port

As I come to the end of round two, with round 3 set to begin next Monday, I feel surprisingly good. Oddly, I feel better here in the final week of round two than I did in the final week of round one. Chemo is cumulative to a certain extent, and it is pretty normal to feel progressively worse overall after each consecutive round.

My best guess for why this is that that I'm on a smaller amount of drugs overall. The pain has lessened over the past week, disappearing entirely at times and -- when it does resurface -- is managed with over-the-counter Acetaminophen. This is a far cry from the time, just a month ago, when I was hospitalized with pain and the narcotic painkillers they used there had only minimal effect. As the chemo progresses, the pain lessens. This means I take fewer painkillers, which means I have fewer side effects, which means that I take fewer other drugs to counteract the side effects that the painkillers create. Also, I switched a few weeks ago from the methadone to oxycontin. 

Pain-wise, much will be revealed next Monday at the start of round 3. Previously, the back pain has traditionally spiked a within a day of getting chemo. If I can get through this next treatment on Monday with no (or minimal) back pain, I'll start tapering off the oxycontin. To compare, the painkillers and side-effect-producing drugs that I have been on have more side effects than the chemo. Which is saying something. Just regular old chemo is a refreshing spring breeze compared to the armload of drugs to cover up the pain.

I have been doing normal-person things and having a surprising amount of energy (for a guy on chemo) in the past week. What this translates to is that I'm able to fully look after myself, including driving, shopping, laundry, dishes, walking the dog, etc. I still get tired, and fight some residual nausea, but I'm learning (or relearning) how to manage these things as well. I'm pleased that I'm able to even help others with their stressful situations at times, which feels good. The (seemingly) one-way flow of care from other people to me is extremely touching, but feels like a huge imbalance is created and a debt of gratitude arises that feels impossible to repay. I know: this is not some scales that must be balanced, but it's nice to be able to give back when I can. I asked recently after a friend's health and he seemed surprised that I'd be asking. This actually hurt a bit: it isn't some sort of competition. Just because I have this stupid disease doesn't mean that I stop caring about those around me. Is my disease more serious? Who cares. I still want to know about others and just because I've got this thing going on doesn't mean that people can't tell me about their problems. I appreciate it when I'm allowed to provide support in some way. As I said, I feel like I've been the recipient of a lot of caring, and if I can pay it forward in some way it makes me happy.

Port Woes

I'm still having some problems with the Port a Cath (the borg implant in my chest that allows them to "quickly and painlessly" poke me to take bloods and do chemo. Something to do with the placement, or my skin, or who knows what, means that the regular needle isn't quite long enough, and so it pops out. 

I'm attaching some pix so people can visualize what I'm talking about. Sorry if you don't like looking at needles. I really don't like looking at them either.

The purple thing is the port. It currently feels like a bump under my skin. The needle goes in the porous area with the 3 bumps, which is "easily located". What this means is they push really hard on my chest with their fingers, trying to find the 3 bumps. The other odd contraption with the tag on it is the needle assembly.

So, the normal needle pops out. And then nurses say, "that shouldn't happen." I've heard this more times than I can count, and let me tell you: I never get tired of hearing it. The solution appears to be to use the longer needle, but that one is just a tiny bit too long, so it is a little unsteady and wiggly. If that sounds like something you don't want to experience: you are correct. I do not recommend it.

Because they've had so much trouble accessing the port, I get anxiety and nausea before they even begin. I realize that this is psychosomatic, but understanding where it comes from doesn't really change the outcome. Right now my main concern with chemo is the needle poke and the the actual infusion process. I feel bad when an experienced nurse tries to start the IV, fails, gets another nurse, who also fails, and they eventually get the experienced one who nails it right away. And then everyone is embarrassed because they couldn't do it and they know that they're causing me pain. And then I'm jumpy because they've already poked me 3 or 4 times so I wince no matter what. But for some reason I have a hard time saying, "you look young. I don't think you'll be able to do this." 

So, is the port better than the arm IV? Overall, no. If you have a good nurse or phlebotomist, its easy in either case. Having a 1" needle pushed hard into your chest is no cakewalk, even if they get it right, and is at best a very unpleasant sensation. Overall, the port has been more trouble than the arm IV. The plus to the port is that the chemo can run faster without pain, burning, pinching, or cold, all of which sensations the different drugs give. There is none of that during actual infusion, but if they run it too fast the nausea sets in. Mainly, I decided to do the port for the later rounds of chemo, where the veins have traditionally deteriorated and it becomes harder and harder to find a vein. 

Anyhow, lets hope that the back pain stays away and that I continue to feel better. At the end of the next round (in a little over 3 weeks) I'll have a followup Pet/CT scan that will tell us how much we've shrink the tumor and lymph nodes, and whether they can still see spots in the lungs. This will determine how much more chemo I'll have and I'll be anxiously awaiting the oncologist's interpretation of the scan. Much to be hopeful for.

Friday, September 23, 2011

Blogger Commenting

Since I have disabled the anonymous posting option, I have been getting a few emails related to trouble posting comments. If you have a Google account (or AIM, or LiveJournal, or OpenID, or blogger) login, you *should* be able to comment. You'll need to log into that account when you comment. If you have a Google account (as an example) it will make you log in to that. I can't think of any reason why it wouldn't accept the Google account login, but apparently it does not for some people.

I personally don't have a problem posting, so I can't replicate the problem. Admittedly, it *is* my blog, so it seems normal that I wouldn't have a problem -- but having said that: it still makes me log in every time when I want to make a comment on my own post. I use my Google ID as my login.

I did some searching and found this link, which takes one through he process of logging in and commenting. Perhaps it may help?

If anyone who knows Blogger better than I -- which is virtually everyone -- can offer a possible solution, it would be very helpful to those who would like to comment but cannot.

Likewise, if you were once stumped -- but have now managed to solve the puzzle -- please post your solutions here so they may help others.


Thursday, September 22, 2011

Apology; also: No Apology

I appreciate deeply all the comments I received the other day. I was at a very low point and am feeling substantially better today. I feel that there is a Minnesotan-ness (those who live here are accustomed to the stoic Swedishness that pervades the culture statewide) to pretend that it is all fine and to push it down inside, to pretend that its all fine. Some may think I'm a baby for admitting my pain and sharing it, and it is true that many have endured more with less complaining. I choose to be transparent in my feelings from day to day and I can tell that this makes some uncomfortable. As one pointed out: I am a private person and I have chosen the (perhaps unfortunate) path of living a fishbowl existence. I do make this blog public so that people who know me and care about me can follow along as they wish. I'll have bad days and good days, and it may be uncomfortable to read. I have many times decided (and undecided) to make all of this private for me only, but then I know that for many it is a source of information.

My comments last time, written as I mentioned in the space of a few minutes, made mention of the fact that I was feeling abandoned or unappreciated, and for that I do apologize. I am prone to hyperbole and I do have many who check in on me in a variety of ways. My intention, believe it or not, was *not* to make people feel guilty, but to show what I was feeling at that moment. At that precise moment I was feeling lonely and it was one of those 10 minute periods where a phone call or email would have been just the thing. I *do* get them, but I was feeling needy. So yeah: I was reacting and lashing out. I do appreciate y'all, truly.

It still does make me uncomfortable that there are people that I do not know (and people that I *do* know but am not currently on speaking terms with) who check in. I have decided that, for the benefit of those that know me, I will continue to keep this an open discussion. If you're uncomfortable with the things I say or they seem too negative, check back in in a week or two and see if my mood has improved. Best bet is to catch me on a chemo off-week for the laughs.


Anyone who has been diagnosed with depression or any sort of similar chemical imbalance will appreciate that the brain is a filter through which all is interpreted. If your arm hurts, we can step away from it. If your brain isn't working right (for whatever reason, in my case because of depression, pain and an excess of poisonous chemo drugs that affect me from head to toe) you're not aware that it isn't working right. Or, in my case, I was aware that it wasn't working right, but couldn't quite stop it.

I get chemo on Mondays, for two weeks in a row, and then have a week off. The drugs flood my system and make my skin a sickly greenish yellow color. It feels a little like food poisoning: your entire body is just... off. Not quite right. It's hard to explain. It's like your own body has been replaced with a loaner that doesn't quite fit right and all the parts are still adjusting. The immune system kicks in and fights the chemo (and the cancer), which makes a person tired and generally No Fun to Be Around. So its an odd sort of sick. It sucks, and then it gets better a few days later. As of today I have 11 days off until the next treatment so I will be feeling much better day by day.

A note about the pain

I have talked about the pain off and on, but I don't know if I've ever (or often enough) defined what I meant. Partially, it just kinda hurts all over. Like I fell down some stairs a week or two ago. Everything is a bit sore. But the specific pain (and something that I didn't experience with last year's chemo) is the damned persistent back pain, partially so annoying because no one really seems to know what is causing it. Everyone's best guess -- and this is after talking to a neurologist and 3 different types of cancer docs at the Mayo clinic -- is that the tumor in my pelvic wall is somehow pushing against a nerve. Or something. Yeah, that's what the best minds on the planet came up with. Regardless, this hypothesis seems to be confirmed at least somewhat by the flare up in pain that I experience when I get chemo. Basically, I like to think that the chemo is poking the tumor with a stick and the tumor doesn't like it. Its nice to think that there is a battle going on on my behalf that might be going my way, but not-nice that it's going on in my body. So the tumor flares up and I start downing the funtime pills, and then I get sleepy and useless and annoyed that I can't accomplish anything (like driving, or writing, or work, or school) because my head is stuffed with cotton balls and vinegar. And so I get pissed, and I blog about it. I agree that it it's no fun to hear about someone else's pain, especially when there's literally nothing that anyone can do about it. Worse yet: this is a pain that is *caused* by a $6,000 treatment two Mondays out of 3. Yep, my insurance company is paying them to make me hurt, and then paying to make me *not* hurt, via all of the prescription drugs. It is all for the greater good, and I'm sure there's some lesson to be learned about falling down a few times before you succeed, or something. I want to get the cancer to a point where it is as gone as its going to be, and that means I need to walk through a little fire, so be it. Today, I am strong enough. No guarantees that I'll feel the same positivity in a week or two, but I should come back around again.

2 down and 4 to go

This is the end of round two, and its almost unimaginable that I'll have to do 4 more of these things, or another 12 weeks. Basically, I need to find something to occupy my mind -- stat-- before it turns to jelly. I've been working on a novel and have started another long writing project, and hopefully I'll be able to focus on those. The novel is a bigger undertaking that is practical at this point (I started it before the diagnosis) with complex plotting, pacing and world-building twists and turns that I just don't have the clear head to master, right now. I do want to get back into that world, but I'd like to do it at a time when I can do it justice, and also at a time when the characters can be a little more positive. The last time I sat down to work on it, they all got in a nasty argument. So -- for me anyhow -- the writing that I produce is heavily influenced by my own mood. It's still a solitary activity, though, so I do need to find more to keep me busy.

Keeping busy and a Request

Related to the above, Jen suggested the other day (brilliantly) that I find freelance design work. Its a great idea. I did that professionally for 10 years or more before deciding to become a school teacher as my second career. I still enjoy the design, I just don't feel as fulfilled by it as I do by teaching. So, if you know of anyone who is actively looking for a freelance (piecework, offsite) print designer -- or freelance writing work, for that matter -- feel free to send their contact info my way. I have all the latest and greatest design software and hardware and I still keep my hand in for design projects for the band and for a few friends.

See: that's a positive thing that people can focus on, right? I *am* trying.

Tuesday, September 20, 2011

Changes to blog and Generally feeling Pariah-ish

First of all, I have made some changes to the blog. You'll now need to be a member of the blog in order to comment. I've been getting more unsigned "anonymous" posts than I like, and this blog is really intended as an online diary for me that I have opened up for those that know me to read if they want to know how I'm doing. So, sorry if posting anonymously is your thing: if you want to send me a comment or note and don't want to do it under your own name, feel free to send me email directly. If you know me, you should have this already. Email is preferable to facebook, FYI.

Who knows: I may decide to make the blog private and people will need to ask permission to have access. This is a pain, but I'm starting to get worried that I have no feedback about who actually is viewing it. I don't like *not* knowing who is reading what amounts to very personal thoughts intended for myself, friends and family. I have been getting 160 or so pageviews on every post, yet only a few comments, so I know that many are reading. Its not the kind of blog where I crave higher readership (unless its people who have bladder cancer that may actually learn something there). So the disconnect between reads and comments/feedback seems odd to me. I had assumed that only 10 or so people were checking in.

Anyhow, I guess this leads into the next comment, wherein I reiterate that this is a lonely-ass disease to have. No one calls or sends cards, write emails or notes (or, apparently) comments or leaves feedback on the blog. People may be tuning in and may care, but I have no feedback on this, so it feels like no one notices or cares. Quite honestly I have felt like my overall friend-contact has dropped dramatically since I got the revised, metastatic diagnosis. Maybe its just that people are laying low and waiting for the storm to pass (me finally dying). I dunno.

Anyhow, its the sort of thing that -- when added to the anger and the uselessness and the tiredness and the pain and the drug side effects -- starts to make suicide seems like a viable option. I can truly understand how people get suicidal, and believe me the tide has turned and every day is a process of reminding myself why I shouldn't just get it over with.

And it really grates when people tell me that all I have to do is think positively. Dammit, it fucking hurts and it all seems completely pointless. How in the hell am I supposed to think positively? Clearly, I am not thinking positively. Allow me this. I know that people have beat cancer by thinking positvely. I may not. I already have a lot of guilt about this. If I don't beat it, is it because I didn't think positively enough?

I have a great family and a one-in-a-million girlfriend, but the few friends that I feel that I still have any contact with spend our time together watching me uncomfortably, not sure how they should act around me. I hide the pain and bolster my mood artificially, not wanting to be a downer. Yes, this thing is on my mind all the time but I like to think and talk about something else. How should you treat me? I have no damned idea. I've never spent any amount of time with someone going through chemo. Basically, treat me as normal, except don't invite me to events a few years down the road, don't invite me to super physical outings, and be understanding of my need for sleep.

Cancer is not a disease that anyone knows anything about -- with good reason. You probably know one person besides me with cancer, and it may have been a distant aunt or something. One way you can help me if we're spending time together is to pick up on cues when I am getting tired that I might need a nap during the day or might need to head to bed -- even if its 9:30. Don't feel like you need to entertain me or like you're abandoning me early. If I'm tired, I'm just going to get more tired until I sleep.

Anyhow, more rants and I'm what feels now like complaints and lists of things that people shouldn't do, which is not what I started out intending to write. Regardless, these are a few things that have been bugging me of late.

I was just talking with my mom and she was telling me that everyone wants the happy, smiley Michael back (but that we'll take whatever we can get, happily). I want that guy back also. Its important to note that he may be gone for good. This makes me angrier than anyone can know.

Saturday, September 17, 2011

Not much new

Not much new to report, other than I am becoming increasingly worried that my mood is deteriorating to the point where I'm pissing people off left and right, both in person and in print. I hope this is not the case. Damn this entire thing and the effect it has on me. I hope I still have a few friends and family left when it is done with.

Other than that, more chemo on Monday.

Friday, September 16, 2011

More Cancer Drugs, and Why I Hate Pepito's Parkway Theater

Yesterday I met with the Palliative Care doc. I have previously joked that one could become a palliative care doc in a weekend correspondence course, since it seems like they only prescribe 3 drugs: morphine, oxycontin and methadone -- all for severe pain, and they're essentially the same. It turns out that Palliative care can help with a cornucopia of things. They can prescribe drugs for stomach pain, indigestion, diarrhea, constipation, nausea, depression, insomnia, anxiety... you name it: we cover it all up. But that's all they do: prescribe drugs. So they're more like a cross between a pharmacist and a general practitioner.When I mentioned that I wanted to explore more non-prescription remedies, feeling that I wanted to be on less pills, not more, it became clear that there is little that the Palliative care doc and I have in common. She gave me a pamphlet for a place across the street that does all of the natural stuff including massage, acupuncture, aromatherapy, etc. It was clear that she didn't think much of it, but she's a pill-pusher by trade. I'll call them today and see how they work with insurance, if at all.

Also in the course of the meeting, Dr Bonzo (the pill-pusher)  expressed surprise (or pretended to, anyhow) at all the methadone side effects I was having, including during my tapering off. None of them should be happening. I love hearing that. Sr. Bonzo gave me the option of switching to oxycontin (remember Rush Limbaugh?) and after careful deliberation with my mom I chose to switch to it. They are equally addictive but I hope that it will treat the pain better with fewer side effects. So far (2 doses in) it seems more neutral with fewere side effects and as-good-or-better pain control. The big worry for me is that taking oxy-(fill in the blank) *does* feel good, whereas methadone does not. I am worried about this, long term. When trying to avoid addiction, your painkiller should not be any fun to take.

So, then we go off to Pepito's Parkway Theater in Minneapolis to see Cinematic Titanic. This is basically the Mystery Science Theater 3,000 guys (MST3k) doing their bad-film-riffing live in front of an audience. I haven't seen them live before and I was very much looking forward to it.

The show was great. What happened *at* the show will make me forever think less of Pepito's and the Parkway Theater.

Here's what went down. So, were sitting up front at these table things (we paid extra to have tables closer to the stage) and I have to get up to use the restroom during one of the warm-ups. I had part of my bladder removed about a year ago, so I have to go more often. Its annoying but livable. I come back down the aisle and find that my chair has been removed from my table and there is a guy in a wheel chair siting there. He's probably in his late 20's to early 30's . I should probably point out that I'm not alone at this table, and it seems like everyone figures out at the same time -- me, Jen, my brother and the wheelchair guy, -- that something is up and he can't sit there. The usher realizes his mistake (he had seen the empty seat and had made room) apologizes and and moves the wheelchair guy about 2 feet away from Jen (in a pretty open corner of the auditorium). Now, I don't think I'm being overly-sensitive, here, but I notice that the guy is very fixated on Jen and is staring at her openly. She may have reflexively smiled at him when turning around to talk to (what she thought was) me, not knowing that they'd made the switch. Maybe he has taken this as her being interested in him, even though -- when she figured out a split second after turning around to talk to "me" that it *wasn't* me, she said to the guy, "Oh, you can't sit here. There's someone sitting here already." This is fairly unambiguous, I think. It sounds like it was polite but direct.

So the guy is now about 2 feet away, so close that the wheelchair is in contact with her chair. He keeps looking at her. It's making me uncomfortable. I do obvious stuff like put my hand on her arm and she eventually feels uncomfortable enough to move away, closer to me. Not because he's in a wheelchair (which is neither here nor there) but because he's staring at her and creeping us both out. Some movement catches my eye and I realize that the guy has opened up the front of his sweatpants and is actively rooting around in there with both hands. I don't know what he's doing, but it goes on for about 30 seconds. Possibly he's adjusting his catheter (I wore one myself for 2 weeks and they are very uncomfortable -- though I never once adjusted it in public) or maybe its something worse. But regardless, I really don't want this happening 2 feet from my girlfriend. Call me strange and old fashioned. Let's also bear in my that I'm trying to have a relaxing (and not inexpensive) evening out to relax and forget about chemo and cancer for awhile. 

So, I storm up to the lobby, find a burly-bouncer looking guy doing nothing whatsoever, and explain the situation. I get a blank stare. The 3 women at the concession counter slowly stop talking and also stare blankly. I'm trying to find every was to say (that I can think of) that some guy is -- as fas as I can tell -- trying to expose himself to my girlfriend in their theater and they appear to be giving it about the same priority level of a squeaky seat. Somewhere in there, what with my persistence and increasing disbelief that no-one cares about this sort of thing at Pepito's Parkway Theater, the burly-bouncer dude says "I'd better tel.... ( I can't hear the name) and wanders off in the opposite direction, away from the theater, in no particular hurry. There is clearly no preplanned process here for any sort of security concern.

Still fuming, I go back down into the theater. Mr. Fun-in-the-pants is leaving as I sit down and mutters something about "leaving your 'perfect town'". A few minutes later a managerey type comes and asks me for the story, starting from a place of disbelief, as If I'd said there were aliens coming out of the walls. I explained my story clearly again and the guy, extremely dubious, said they'd "try to keep an eye on him". I would have expected that he'd be asked to leave at very least. No, they're still trying to find a place for him. They come back a few minutes later and say they'd like to put him here, in the same exact spot. Next to Jen. I say no: he needs to be far away from us. And I had to insist. I get a look that makes it clear they think I'm being insensitive.

No, it cannot be overlooked that this man was in a wheelchair. But it seems that Pepito's Parkway theater was ommibilized with fear by this fact. Clearly they had quickly decided that the concerns of a woman -- subjected to essentially indecent exposure -- was nullified by the fact that the perpetrator was in a wheelchair. Where do I figure in: the guy with terminal cancer. Do people add more or less weight to my claims because of my situation? Honestly, I'd hope I'd be held to the same standard as everyone else, and I'd hope that this guy would also be held to the same set of societal norms that we all establish and agree upon. If I take too much oxycontin and my pants fall off in a theater, this is a partial *explanation* for why it happened -- but not an excuse. I could still be held accountable for indecent exposure, even with the cancer pain and prescription narcotics. For the record, I have not yet done this, but perhaps I should try it at Pepito's tonight and see how they deal with it. My guess is that I'd get relocated to a better spot closer to the stage and get free Mountain Dew.

When Jen called today to talk to the manager, he did not apologize, and in fact *bitched her out* for saying that a guy in a wheelchair could be creepy. She was not saying that he was creepy because he was in a wheelchair. She was saying that he was in a wheelchair and was also acting creepy (and creepy is an understatement). She cancelled her ticket for tonight. The manager should have done mush more to protect his business and his reputation. Perhaps, when the initial report came in, having a manager kneel down and talk to the guy in a low-key way to see how he's doing/feeling would have given them a sense of his condition. Its where I'd start as a manager. They were petrified of tossing him out so instead they froze completely, did nothing, and (like so many rape cases) put all the burden back on the accuser.

I do not like how our society treats the physically (and, in this case, possibly also mentally) disabled as invisible. I have spent time on crutches and in a wheelchair and you become invisible. I have a terminal disease and technically am disabled because of it, though it is not outwardly visible, though there may be a time that I too, am confined to a wheelchair because of my condition. Being physically disabled is a lonely state to be in that I don't envy, and I don't hate this guy. What I *do* hate is Pepito's male-chauvanist "you're just a woman" attitude that they seemed to have with Jen on the phone, and their hyper-lawsuit avoidant approach (without realizing the possibility for other lawsuits becuase they are so petrified.)

Anyhow, if anyone feels like calling the Pepito's Parkway theater, be my guest. I have a ticket to go to tonight's show as well with a large group, and Jen was planning to go as well (something that I was very much looking forward to) but now she is not going and I really can't blame her. They promised to refund her ticket, but as of this writing they have not done so. I'm pissed. Not at all at her, but at this situation and at Pepito's Parkway's bungling of the situation. 

I think that if Pepitos' Parkway were to say of the audience before the show "Ok, raise your hand if you do *not* want to watch some guy root around in his underwear right next to you for a minute or more?" I bet they'd get a solid 90% or better. Though, they would likely subtract the women from those voting, because their opinions and feelings don't seem to matter. Welcome to the 1950's, Pepito's. 

Wednesday, September 14, 2011

6 Rounds and a Cancerey evening

Around about 2 am I was awoken by intense low back pain and lower abdominal pain. This is what I've experienced off and on to varying degrees for the past 6 weeks or so. The pain last night was near to the level that had me rushing to the ER two weeks ago. The difference last night is that I've already been through the pain-management ringer. I'm already *on* the heavy-duty painkillers they'd prescribe, the only difference would be that they'd be IV painkillers, which work more quickly. Last night, I also suffered from severe chills, shaking and teeth chattering. I simply could not get warm. So I took 2 oxycodone (10mg -- a lot) and waited it out. Jen, ever concerned and supportive, watched me like a a hawk until she was sure I was out of pain. During this time I also talked to the on-call oncologist and proposed my theory: since this exact same thing happened two weeks ago, this might mean there's a related cause: I have chemo, and two days later I have a strong, painful kickback from the tumor. Like stirring up a beehive. She thought there was some validity to this, and has seen tumors act similarly, but recommended that I talk to my regular oncogist. I left a message for him this morning.

I also found out today that I am scheduled to have 6 rounds of chemo. Last year I did only 3 rounds, and that was tough. At 3 weeks per round, this  works out to 18 weeks, or 4/12 months. I have not heard this information before so it means that I'll need to get my mind around doing chemo until nearly Christmas.

Y'all should start a betting pool as to when my hair starts falling out and I will need to shave my head. It will likely need to be in the next month. I'm currently planning to have Ming the Merciless do it at Hilda's Hair Hut. Or we could do it at my place as a party, if anyone actually knows how to do it without massive lacerations.

p.s. My new thing for winter is going to be hats with hair built in. Like that rasta hat with dreads? Priceless.

Tuesday, September 13, 2011

Feeling cancerey

I had the first treatment for round 2 yesterday. It was basically as planned, which is not to say that it was uneventful. The 2 drugs that they give me, Carboplatin and Gemcitabine, both can cause nausea. We had to stop the treatment more than once and slow down the flow becuase I was afraid I was going to vomit. Everything takes longer than planned and I grow weary of doctors and nurses telling me that "it shouldn't be causing nausea" becuase it is, for some reason, causing me nausea. Does that mean that I'm imagining the entire thing and stop whiling, or does that mean that perhaps we should dwell not so much on the middle part of the bell curve where the "average" patient sits, but on me--the patient sitting in front of you that *is* having this reaction, regardless of whether I should be or not?

I also grow weary of doctors, hospitals, clinics, waiting to have my name called, appintment makers, picking up prescriptions, having by blood drawn, weight taken, my lungs listened to and my blood pressure taken. I hate being asked about things that are right there in my chart, and I really hate being asked how are you feeling?" by doctors, nurses, and nearly anyone because it is never a short answer when you've got a laundry list of things going on and subtle-to-severe side effects of the various meds and chemo drugs that push and pull at each other. And I always feel that I should answer "fine" becuase that's what we're trained that people want to hear. Do they mean on a scale of 1-100 with one being dead and 100 being rapture? Are any of us really better than about a 75 on this scale? (29). Do they mean compared to yesterday? (not in as much pain, though my mood is worse and I am more fatalistic -- so is that a net gain?)  are they asking about my blood pressure (normal) my digestion (unpredictable) my pain (changes hourly) my depression, (changes hourly as well), my weight (down) my 12 month outlook (average) my appetite (none) my nausea (changes hourly), what? How do I answer this? Do they mean compared to pre-cancer days? (very shitty). Today I finally decided on "cancerey". Which is annoyingly vague (as annoyingly vague as the original question can be). What should one ask? Specifics are good, and will help me to answer in a useful way, if information is desired. Though my health concerns occupy 92% of my own brain processes at any given moment, I am always happy to talk of nearly anything else as a distraction.

On the subject of nausea: problem with the nausea is that not eating makes it worse, and also eating makes it worse. So during chemo you know that if you're feeling nauseous it probably means that you haven't eaten recently enough, but the process of eating now will make it worse. But if you wait, it will get even worse. So this is why, in my experience, anti-nausea remedies (prescription and herbal) are so helpful to people undergoing chemo. These days I set a timer for 2 hours and make a point to have something little. This avoids most of the not-eating nausea as well as the eating-nausea.

I have been sleeping an enormous amount recently, which is good in terms of recovery, but might be hinting at depression as well. The cause is easy to see, but fighting it off is difficult without medication, since it is increasingly difficult for me to do the things (get lots of exercise and sunshine) that can prevent depression. I may need to add in one more pill to my daily handful, though I hope not. If I can get this bout of chemo finished before winter, I think my chances are good at staying off antidepressants.

Other than that, how am I doing? About the same. Still angry at this thing and tired of the myriad of social/emotional garbage that comes with the physical junk. My most recent source of frustration is that the back pain has been returning. This has been severe enough that I stopped tapering off the methadone and actually went up on my dosage yesterday. I'm still at less than I was (they started me at 30 mg per day and now I'm at 15) but it makes me angry that I will have to stay on this toxic and addictive drug a little longer at least. The side effects are severely life changing, and you do not want to be on this drug. Is it better than the pain? On the whole, its about even.

I get chemo another treatment next Monday, and then I have a week off. I'm not sure if I'll have one more round before my followup PETCT scan or not. The followup scan will tell us if the chemo is working and will give an idea of how many more round I'll have to do this year.

I have been told that "chemotherapy is in my future" -- meaning I'll likely have to do a few rounds every year for the rest of my life. The docs have explained to me that these treatments are "palliative and not curative" meaning they have no illusion of making this cancer go away. It will always be there, it is now just a mater of baling out the sinking ship for as long as we can. So that might be contributing to my depression as well.

Wednesday, September 07, 2011

Round 1 winner: me

My first round of chemo is technically done. It consists of two weeks of treatments followed by a week to rest and recuperate, and I'm in my "off" week right now. My energy is low but steadily improving. I actually have plans to go to the gym on Friday, though I will be amazed if I manage more than 5 minutes on the treadmill. I won't push it: if I've learned one thing during this experience, it's how to read my body and know when I'm pushing it too hard.

The pain has been steadily decreasing over the past week or so, having seemed to level off at a generalized tightness and faint soreness in my lower back. Sitting at the computer chair (which I'm doing right now) aggravates it a bit so I'll make this brief for my own selfish ends.

I called an talked to Dr. Bonzo (the Palliative Care Doc.) when I realized that the pain was decreasing. The Methadone (which I'm on for pain) is scary-ass shit, and I don't want to be on it one minute longer than I need to. With the pain gone, there is no reason for it. The problem is, there is a reason that this is used as a replacement for people who are addicted to heroine. NOTE: I am not addicted to heroine. Nor have I ever even tried it, but I sincerely think that there are Facebook friends of mine who believe that I'm on methadone as some sort of drug-recovery tool. I always say that the only thing more dangerous than no information is a little bit of information. But I digress.

So I'm on Methadone. If I were to go off the drug cold-turkey, I would have withdrawal symptoms similar to going off heroine. Ever see Trainspotting? Get the buckets ready. I would have the shakes, the vomits, the squirts, sweats, and generally wish I were dead... for a period of days. So I must follow their tapering-off schedule, which takes 9 days. Today is technically day 2 and it is going all right except for a few random muscle jerks and twitches and a poor mood in general.

The nausea is also fading, but I've learned a few things about keeping that in check as well. Its sad that this is becoming routine, both for me and for the people around me. No one should ever get used to this feeling.
My next round starts up next Monday, 9/12.

Friday, September 02, 2011

Halluciations and Other Fun Stuff

The pain did return today, and is fading as it gets later in the evening. Possibly a trend developing. So far, the all-natural remedies are working quite well to keep the entire transit system moving without any roadblocks or speed related incents.

For the past 4 or 5  nights I have been hearing music at the edge of my hearing. It sounds like the neighbors next door have their stereo on and you both have your  windows open. Its not like a radio station where I can say "I'd like some Latin beats, now." No, its more like like occationally I hear something that emerges from the background noise, finding (or being given by my sunconscious) some rhythm, structure and tonal accompaniment. It turns out I can imagine some pretty cool and pretty complex stuff. Last night it was Norwegian electric fiddle folk, and the other night it was a 70's era stadium rock band. 2 night ago it was bagpipe music (I played as a drummer in a bagepipe band, so I have been exposed to a lot of it). This usually happens late in the evening (when the music's seeping through). The big tip-off for me that it was not real was when I put in earplugs and the music was at the same relative volume, still very faint but audible. I don't control it, can't guide it or manipulate it: its just there, like your roomate's CD player.

Sometimes I really wish I could write it down. I guess its all original anyhow, as far as I can tell. I guess I can retain trademark to my own halluciations.

I went to go and see my sister in the hospital today. It looks like she's getting the hospital runaround and the docs are afraid to admit that they're not sure what's going on. Or maybe they caused the complications and don't want to admit it. Anyhow, I hope she can take the trek to Mayo if it doesn't resolve soon. They're the people you want to talk to when no one else can figure it out, I find.

Thursday, September 01, 2011

QVC Time

At about 8 pm tonight the pain magically drifted away. Whether temporary or permanent, I have no idea.

I have a feeling that it was the opiates finally reaching some sort of baseline level. I know it takes a while for the methadone to get into your liver. From there it is dispensed constantly to the rest of the body in a sort of internal IV drip (as I understand it). I hear that it itakes about 5 days for the 'done to stabilize, and it has been about 5 days.

Drugged up as I am on prescriptions, I feel fairly unsafe to drive and -- as two friends pointed out tonight -- I probably shouldn't be doing any online shopping anytime soon.

Regardless of the cause and duration, I am enjoying this pain-free oasis.

A Rough Day

Yesterday, Wednesday, was a tough day for a variety of reasons. I had chemo, but I was in rough shape before that.

It started out quite manageably, and I was able to make time to bang out a relatively chipper-sounding blog post. But shortly after that it all went downhill.

They sent me home from the hospital on Tuesday with handful of prescriptions, which turned into the largest Walgreens prescription bag I've ever seen, approaching the size of a grocery-store bag. Due to the difgestive-stopping-up nature of the opioids (methadone, Hydrocodone, Dilaudid) they have been trying to make sure that everything was working, down there. They gave me a prescription for Senna, which is a relatively neutral and subtle over-the-counter med. But it didn't stop there, not my a long shot. They also sent me home with Docusate Sodium, Milk of Magnesia, Miralax (which is made of Polyethylene Glycol, a cousin -- ironically -- to antifreeze) and suppositories. And I was to take all of them. I think that with this particular concoction I could have ingested a mixture of cheese and super glue and it would have broken the sound barrier on the way out.

So, things started moving. That was discomfort #1, which ties into discomfort #2. In days previous, I alwasy took a few prescriptions daily in addition to a handful of vitamins and other herbal formulas. On a normal day I take about 10-15 pills twice a day. But this has increased with the pain pills (and the pills I take to counteract the side-effects of the pain pills, and the pills that I take to contract the side-effects that *those* pills give me) to so many pills, unguents, powders and elixirs that Jen has created an excel spreadsheet to track them all.

So, I take a lot of pills, Which is, by itself, only annoying and time-consuming. But the chemo takes away my hunger and makes me nauseous, so I don't eat very often, or very much. Yesterday morning I had about 6 cubic inches of bread with my handful of pills and laxatives.

About an hour later I felt strung out: sweaty, nauseous, light-headed, weak. It all hit when my brother and I were arriving for breakfast before chemo. Before our food arrived, I was scouting out good placed to throw up outside if I needed to. This reminded me of something from my pilot training, where you're always searching for and noting emergency landing spots, just in case. Same thing: if you think you're gonna vom, best to plan your route. The bathroom in this particular joint is hard to get to and I wasn't sure if you needed a key. So I made an exploratory trip: no key needed. My inner dialogue went like this: Bathroom, no key needed. Good. Now, that's an option unless someone is in there, which I'll need to keep a close eye on. Otherwise, that bush outside would work well, but its right next to an outdoor table where a young couple is eating eggs....

And this is a place I frequent. I wouldn't want to be remembered as "the guy that puked on the patio".

I breathed deeply, sipped water and nibbled at my food -- balancing between throwing up because I was eating too fast, and throwing up because I didn't have enough in my stomach. Getting the food to go, I felt even worse: now afraid that I was just plain going to faint or pass out.

As this point its good to remember that I was also likely dehydrated because by digestive system had been turned into an expressway over the past 24 hours.

At the chemo clinic, I was too light headed to walk on my own. A wheelchair was found, and in the clinic they put me in one of the two infusion private rooms that they keep on hand for sick people THey're probably shielded from the very worst end of the cancer treatment folks, as those people do their chemo in their hospice bed.

Dr. Grampa recommended that I go off all of the prescription stool softeners and laxatives until things started moving again. A good idea, I thoght.

Today I feel similarly weak and woozy though not as bad. I think the Methadone is responsible for part of it. Today is also a day-after-chemo day, so its understandable that I'd feel poorly. I'm eating and drinking high fiber stuff and drinking plenty of water so here's hoping that there is a pain-free way to fight the opioids and their side effects.

Og, and I have learned that methadone makes me hallucinate music. More about that tomorrow.