A lodge called Hope

Kevin here. M is sleeping.

We've had a long few days. Last week, our aunt Norma (mom's older sister, and an awesome lady who I loved very much) died, and we had her funeral. I don't know about other families, but in our family, funerals are a mix of sadness for the one who is gone and joy at sharing memories of them with the rest of the family, and of renewing our bonds with one another.

We got to re-connect with family we don't see often enough, and tell stories about all the dumb things we did when we were kids. I got a chance to go out drinking with three generations of the family - Uncle Terry representing the elders, and my second cousins Amanda, Brenton and Taryn representing the next generation.

We drove down on Thursday, and back up to the Cities on Sunday. M had an ER visit on Sunday night (due to internal bleeding from an unnecessary catheterization for PET/CT scan, which is annoying in addition to being painful and frightening), and so he got about an hour and a half of sleep. I managed to get more than that, mom and M having decided that since I was driving down to Mayo, I should be well-rested. I don't know if I'd describe myself quite that way, but I did get about six hours of fitful sleep. Go me.

Today's developments in the ongoing saga: M does not qualify for the cancer study after all, mostly due to the internal bleeding - the agents they are using limit the body's ability to heal, so bleeding is bad - so we're going to be doing chemotherapy back in the Cities after all. This is disappointing but not without a silver lining, as it takes out the drive to Mayo for chemo and scans. One of the things we were hoping for with the study is increased scrutiny on M's condition, and it sounds like we are going to get that, at least to some degree - the Mayo oncologist we met with today wants him back down here for scans between the 3rd and 4th cycles of treatment.

The other silver lining is that it dropped a boatload of scans and tests from the schedule, and let us move the cortisone injections for back pain up to Tuesday afternoon instead of Wednesday, which is good twice: one less long drive, and one day less to wait for a chance at relief from pain.

Of course, all the schedule weirdness meant that we got to eat lunch about 3pm. We tried Newt's (which has nothing to do with former Speaker of the House and current presidential candidate Newt Gingrich), which has won "best burger in Rochester" for 8 years running. It was the best burger we had had in Rochester, but then again, it's the only burger we have had in Rochester. I'm guessing the competition isn't too stiff.

Now M takes a nap, I get in this update and a little work time. And then we go find dinner about 9pm, I guess. Tomorrow is MRI and cortisone and the drive back to the Cities, and then later this week with Dr. Straightshooter and the beginning of "second line treatment" chemo.

Chemo, Drugs, Studies and More

While the reality of more chemo -- right away -- sets in, I also have other decisions ot make and new information to process.

The Drug

One of the things we learned at Mayo this week is that I have graduated from the platinum-based therapies (cisplatin and carboplatin) and into the docetaxel realm. This is a common "second line" chemo drug for people in my situation. Basically, this is the drug that is used when the other ones appear to reach the limit of their effectiveness and is used after the initial round of post-metastasis chemo.

I'm still educating myself on the side effects, but the most common ones sound like what I've come to expect from a chemo drug: tiredness, nausea, hair loss, loss of appetite, and temporary decrease in blood cell counts, to name just a few. I had all of those with both my past chemo series'.

Docetaxel can also cause loss of feeling or numbness and tingling in the extremities, and the irritation or loss of skin on the hands of soles of the feet. I had the numbness/tingling with my first chemo series when I was on cisplatin, but this most recent series on carboplatin had virtually no side effects in that area.

Rarer -- though scarier -- side effects include seizures.

On the list of the rarest side effect are: holes in the intestines, liver failure, and death.

I realize that these side effects lists paint a worst-case scenario, but you have to understand how difficult it is to take a drug that lists "death" as one of the possible side effects, however uncommon.

Treatment would be given once every 21 days (or one week on, two weeks off). I have a feeling that this long recovery time is due to the harshness of it.

The Study

There is also an offer before me from Mayo. They're inviting me to take part in a clinical trial of two new drugs. These would be given in addition to the docetaxel, also via an IV, One would mean an extra treatment (two weeks on, one week off) and the other would be the same schedule as just the docetaxel.

The control group at Mayo is given just the Docetaxel, meaning that the worst case is that I'd get exactly what I'd get from my local oncologist anyhow.

One advantage to the Mayo study is that I might get added benefit from one of the experimental drugs. The downside is that it could also be damaging, and some of the side effects aren't that well confirmed. It doesn't cost me anything (there is also no compensation for it) but I can feel like I'm a part of the cancer research process in a way that few get to be. Cancer Walks and such can be great for building morale and bringing survivors together, but actually physically helping researchers test a new drug that could be helpful to millions would make me feel like I'm a big part of the bladder cancer solution, as opposed to just being a statistic. And you know how I hate statistics.

On the downside, I'd have to drive (clarification: I'd need to be driven) down to Rochester at least once every 3 weeks (and possibly twice) for a very long day that would on some occasions include an overnight stay because I might have more tests the next day.

If I need to stay down there, I could stay for free at the Hope Lodge right across the street from Mayo. The Hope Lodge is essentially a free hotel that houses people undergoing cancer treatment. Its tough to get into, and there is a waiting list besides. Normally you need to be doing ongoing treatment and there is a minimum 2 night stay, but study participants are different. I am assured I could stay there any time I need with no problem. After a 12 hour day, just staying in Rochester would be preferable, I'm sure.

Its a big hassle to get all the way down there, and when you're already nauseated, spending 3 hours a day in a car is hell.

If treating in Rochester, I'd also need to co-ordinate (at the very least) someone to stop by and let Boo out on each of those long days, and possibly have someone prepared to pick her up and take her over night.

The advantage to doing the chemo locally, where I've done all my previous chemo, is that its 10 minutes from my house, and anyone can drive me. I know the facility and the people, though they're not perfect by any means. I spend more time at home, more time with my dog, and less time in a car.

At either location, its 100% covered by my insurance, so cost is not a factor.

Mayo ought to have top notch care during chemo, though their infusion center looks more like an ICU. It's clean, but not terribly inviting. There are about as many glass-walled treatment rooms with beds in them as there are infusion chairs. I guess they get a lot more patients who are in a worse way down there.

Currently I'm making simultaneous plans with Mayo and my local oncologist (to cover all my bases) and will have to decide by tomorrow (Thursday) which route I'll take. The Mayo study coordinator needs to know ASAP. We'll all be discussing this in detail tonight and making a decision by tomorrow morning.

The Back

While at Mayo, we managed to meet with an orthopedic surgeon, who ordered an MRI on short notice, and was able to read the results by the next morning. Basically, my back pain is a result of "arthritic changes" in the vertebra of my low back. It does not appear to be linked to the cancer. Injections into the disc (such as cortisone) are the therapy that is recommended, though (for various reasons) there wasn't time to have them done before I left Mayo. I will have to plan to go back down next week to get the shots. I have found some temporary relief by doubling (as per the new doctor's recommendations) the amount of Naproxen Sodium (Aleve) that I was taking. I now take two with breakfast and two with dinner. This is twice the recommended dosage. Based on the success of the Aleve, I have been able to come down a bit on my Oxy-tin, which is a huge relief in many ways.

So tonight will be a busy (yet hopefully productive) one, while we decide on the the best option.

The Family

In addition to all of this, I learned on Monday evening that an Aunt (my mother's sister) that I was very close to had just passed away unexpectedly. Needless to say, its been a hard week for everyone in the family.

Mayo Results: More Chemo.

After two days of grueling and needlessly painful tests, persistent scheduling mixups, unexpected allergic reactions, too little sleep, early mornings and hours spent waiting for (and talking to) doctors... we have finally gotten some concrete information.

Basically, the cancer is "progressing" (growing) and shows signs of appearance in new areas in the lung and in the lymph nodes in the abdomen. Chemotherapy will start up again, most likely next week. 

That the cancer isn't gone is not surprising. That the cancer is spreading is highly disappointing, though not entirely unexpected for my type of cancer. That its growing to the rate where I will have to start a new, no-end-in-sight chemo series -- next week -- on a new and most-likely-harsher chemo drug -- really sucks.

So much for a last fun trip with Jen while I'm feeling at my best before chemo begins again. I thought I'd have at least a months' notice. Not 6 days.

This also answers the earlier school dilemma: I'll drop both classes. I don't know anything about this new chemo drug or how it will affect me, and I just can't risk it.

I'm sure I'll have more soon to say about this trip and the other information we learned there about the back, etc. But right now I'm far too fried to clearly process it all. Though writing it down will be good. Hopefully in a few days at the outside.

The future (statistically speaking)

Today (and by today I mean for the last year and a half) I have been thinking a lot about the future. It surprises me that I'm not thinking about it constantly, but there are so many unknowns that its a subject that is easily avoided. In terms of longevity, life-expectancy, etc., there are boatloads of statistics that could make an argument for nearly any outcome. As previously mentioned, I don't really believe in statistics. Or rather, I get the concept and understand that they are helpful for allowing people to quantify things and put them in neat little boxes of expectation, but I maintain that statistics are irrelevant in my case. I will either live longer or shorter than other people in my situation. The likelihood that I will live precisely the average lifespan that is normal for people in my situation is unlikely. Statistically speaking.

When I spoke with my new oncologist (whom I shall call Dr. Straightshooter because of his ability to give the real, unvarnished facts if asked) he laid out the situation in a way that no other oncologist has before. I mentioned to Dr. Straightshooter that one of the major reasons I was changing oncologists is that I couldn't get Dr. Grampa to give me a straight answer to save his life.

Dr. Grampa would talk in parables and similes. When asked, for instance, how likely it was that I'd be back in chemo within the next 9 months, he said, "Well, I'd like to know how many times I'll have to mow my lawn next year, but there are some things we just can't forecast this far ahead of time." It would be cute and endearing if we really were talking about lawn mowing, but we're trying to figure out if I can continue getting the hell on with the rest of my life, to whit: taking a full 5 month semester of classes in fall without having a drop all of them for another chemo series.

My take on him is that he's very close to retirement (many of his parables had to do with playing the market accurately in preparation for retirement) and his aversion to being tied up in any malpractice lawsuits post-retirement. His strategy? As far as I can discern, his strategy for these next couple of years is to be as vague and noncommittal in person on any predictions of anything, and also to be highly pessimistic in his written reports. Also, do everything strictly by the book with no deviation. To the average patient (who doesn't read the written dictated notes afterwards) the picture would be very different from the story he paints in the office visits. Which involves nothing more than poking me in the stomach, feeling my neck, and jotting down my pain level. That way he can't be held accountable if it works out different than he said it would. Or maybe he's one of those doctors that is used to dealing with patients who don't want to hear bad news. And no one really does, but if the news is bad, I'd rather have it than nothing. And if the predictions are gloomy, I'd rather have them verbally than read them afterward in a cold, clinical, written transcript of a dictated report about me. 

I wasn't asking Dr. Grampa to sign a sworn affidavit saying that I would be guaranteed of a full semester off. I was asking whether it was likely that I would need chemo again within 9 months, which would mean that I could take some control of the situation and plan to do chemo over the summer. This would give me the illusion of having some control of my life, which would be good. Again, once we got that clear, he still wouldn't predict. He also really likes to say that he doesn't have a crystal ball. Which really made me want to buy one for him. 

So, Moving on to Dr. Straightshooter, I asked him a number of the same questions that I'd asked Dr, Grampa, and I did get the answers that I was looking for. Yes, they were not really positive. But I prefer having information than the opposite, even when it isn't positive.

I mentioned to Dr. Straightshooter that I knew almost nothing about what the progression of this disease would be like. Its an oddly lucky situation to be in that while I am at stage 4 (the highest it goes), the cancer has not apparently affected any vital systems. The cancer has spread to the lungs, but only on a small level and -- as Dr. Straightshooter put it -- there is a lot of redundancy in the lungs. This cancer also has a habit of spreading to the liver. That one scares me, as I don't welcome the idea of liver failure. He mentioned that the liver has a lot of redundancy as well. One of the most encouraging things he said is that, "we'll know before you know" that things have gotten serious. The spread will show up on scans, etc. before I start showing signs of jaundice, etc. It can also spread to the bones. That just sounds painful. As far as we can tell, it is not in the bones either.

There was a scary statistic that Dr. Straightshooter mentioned (and I'm actually kind of glad that no one told me this initially): when a patient is first diagnosed with stage 4 cancer (which was about 9 months ago) a common life expectancy -- after that initial diagnosis -- is about 2-4 months. Which brings us back to the fallibility of statistics.

Don't panic. I'm not going to drop dead tomorrow. Before anything like that happens, the cancer would need to affect a vital body system, and it hasn't done that. Hopefully it will not. There are no clear predictions other than saying that (statistically) it will, eventually. As it stands, it is conceivable that I could carry on for a good long time (which is annoyingly vague, I know) with chemo keeping things neutralized as much as possible. There is the possibility that chemo will eventually have a reduced effectiveness. There is the possibility that I will be too sick to get enough chemo to make a difference. There is the possibility that it will spread, regardless. There is also the possibility that a Airbus A-330, on final approach for MSP, will lose engine power and plow through my house when I'm sleeping. Though -- statistically speaking -- that is somewhat more remote.

Basically -- and this is what's really hard -- I need to be at peace with the idea that I may depart this earth well before my time. I also need to prepare for the possibility that I'll be here for quite a long time yet.

And this gets to the very heart of this quandary. I've been working since 2007 to be a teacher. I picked up my long-abandoned BA in '07 and finished in 2009. Then I went straight into a Masters in Teaching program to get my high-school English teaching license. This is something that I've wanted to do for 20 years or more, but got sidetracked by an career as a designer and writer. Which I enjoyed, but had for the most part burned out on. Right now I have 2 full semesters of school (plus a full semester of student teaching) to go. The problem is, I can't seem to be off of chemo long enough to actually complete a semester. 

I need to face the possibility that I may simply never be able to get enough traction to complete another full semester of school. Or at least not in the next few years. If I put that dream aside (which makes me very bitter) I may need to be okay with the idea of continuing do to what I do now. Which recently has been being under what amounts to house arrest while going through chemo and dealing with the crippling back pain. And, as a side note, unless I get the back pain addressed soon, I'll continue to be on so many painkillers that I shouldn't be driving to work, let alone actually working. So my options are that I can keep teaching classroom driver's ed. This is a known quantity, I'm good at it, I have a great boss and I like the work. Really, other than the fact that it's not what I had in mind for a career goal, there's nothing wrong with it. 

I also just went through the excessively laborious and needlessly-complex process of becoming a substitute teacher. Subbing is teaching, but its also highly-stressful. Some teachers prefer it over classroom teaching because there is no lesson planning and no homework to grade. To me, it sounds extra-hard mentally because you don't get to build a relationship with the students, especially since there are 30 of them and they know that it's party day because there's a sub. For this reason, subbing seems like about 90% classroom management. Great experience if you have a thick skin, but I'd rather teach. I'm pretty good at classroom management by this point, but it's my least favorite part of being in the classroom.

But I went through the process of getting the license anyhow. Partially so I can say that yes: I'm a licensed teacher. Of sorts. Its a little like choosing between dropping out halfway through your BA or getting an AA. It's a half-assed measure that is nonetheless better than nothing at all.

So, I got the sub license partially for me, so I can look at it and remind myself that I can be teaching in any Minnesota school where there is need and an opening. Albeit for a day. And with the understanding that the students and I won't be able to get to know each other, and that the students will most likely be trying to make my life hell. 

The substitute teacher license could also help me when teaching driver's ed. Sometimes we have classes inside schools, and the sub license would make me more attractive to the schools. At very least, it should mean a raise. But, perhaps oddly, teaching driver's ed already pays a lot more than subbing.

With spring semester approaching, I have a decision to make. Take classes (which will cost about $5,000) and face a decent (statistical) probability that I'll have to drop them or take incompletes. Or, take the time off and teach. And travel as I'm able.

Right now I'm leaning towards not taking classes. In an odd way, this is taking charge of my future. Or rather: filling it with fewer opportunities for disappointment. Is that sad? I can't really tell. It feels a little like giving up and a little like being a realist.

When I go down to Mayo next week I'll be able to speak with all 3 of my docs down there. Hopefully (but not necessarily) I'll have some predictions as to what the next few months will be like. Whether it's back to chemo or take a breather is unknown. Regardless, I still have some decisions to make in the next week.

And now for something completely different

Blah blah blah blah blah-de-blah bah back pain. Blah blah blah blah Mayo blah blah blah blah blah Oxy. Blah blah blah-de-blah blah blah blah Acupuncture blah blah blah blahbidy blah. Blah blah sleep blah blah blah blah-de-blah blabidy blah neutrophils blah blah blah blah Ambien blah blah blah-de-blah blah.

Boo

Is painfully cute! 

And that's the news.

Its Boosday!

Boo is doing great, and is starting to respond more and more to her new name.

I got up last night to use the restroom and noticed that she had moved off the couch and into the office, where she also has a bed -- she has a bed in the bedroom also, but maybe she was shy about coming in uninvited. So I invited her up on the bed for the first time. I know that this can a slippery slope if you don't plan to have the dog on the bed all the time, but its nice to have a dog on the bed, I think. Boo will learn eventually that the rule is: she can be on the bed, but only when Jen's *not* here. This worked great with Kaia, though there was nearly always some pouting on Kaia's part.

Boo on her couch.

So far, it's eerie how familiar Boo feels. She's been here less than 48 hours and already it seems like I've known her for far longer than that. She does look a lot like Mia (the all-white girldog that I had before Kaia) and acts a lot like both of them. But its more than that -- she's so easy to have around that I have to keep reminding myself that we only just met, and that this house and my expectations are all new to her.

I left briefly yesterday and there were no accidents or destroyed furniture or chewed-up shoes when I returned, and I heard no howling or barking. I wasn't too worried, but this is all a good sign. I'll leave for a little longer today at some point, and I'm hoping that it all continues to work out.

Mia in about 2009

In my experience with adopted hounds (Boo is my 8th greyhound) there is a pretty standard process by which they settle into their new homes. All greyhounds have had lives before, and have been uprooted many times. Most are shipped off to trainers in other states and may race in various different locations as well. Boo, as far as I can tell, was raised in Georgia, and raced in Kansas and West Virginia. It seems that she was then sold to a farm in Iowa where she had 4 litters of pups -- 15 total. Then, after retirement, on to Minnesota to live with a foster family for 2 weeks, then another foster family for a few weeks, and then -- finally -- here. So it's understandable that she doesn't really know whether this is just a stop off, or if she lives here now. Even still, she's quiet and well-behaved. This is one of the reasons (and a sad one, honestly) that greyhounds are favored by animal research facilities: they take well to being kenneled, and are quiet and don't complain very much. Some veterinarians also keep a greyhound as a blood donor: all dogs have the same blood type, and greyhounds have a higher than normal Total Blood Volume (TBV). They also tolerate having an IV in all the time, will live in a kennel, and are quiet and well mannered.

Kaia about 2010

So, after many changes in their past lives, I find that the first 3-6 months of being in their "forever home" the dogs are friendly and social, but aren't sure what this new place is. After that period, when it seems like they've figured out that they're really going to stay, I find that the next 3-6 months are key as they become very attached and may have some separation anxiety. The dog's personality determines what form this insecurity takes and the degree to which it manifests. After that 3-6 month separation anxiety period, the greyhounds seem to relax and settle in. My job is to be as consistent a fixture in her life as I can, and to establish safe spaces for her and a reliable routine. The more she feels safe here, the more she'll relax and trust that she's not going anywhere.

The Back, etc.


Over the past few days I've been stretching out my lower back in a quest to find something -- anything -- to alleviate the pain. This seems to help a bit, and I'm hoping that it will continue to get better. Likewise, I've been walking. No marathon treks yet, but 6 or 8 blocks at least each day. Hopefully this will strengthen the back and encourage the muscles to relax a bit.

Strangely, this sounds really good about now.

The leg has been better. I still don't know what's going on down there, but I do think that the nerves (that were messed up in the surgery) are coming back, as I feel mildly painful electric jolts into my inner thighs. And -- a new thing -- my thigh muscles in both legs are sore, not just the left leg, which was the troublesome one before. You know how sometimes your muscles cramp or spasm when you get really gold? My thighs feel like that sometimes during the day No spasms exactly, but the same soreness that might come from being punched in the thigh. Its not in exactly the same area as the numbness was, though. So it might be related, it might not. Its an annoying mystery.

The pain meds (60 mg daily) appear to be working for the most part. Coupled with the stretching and walking, I don't feel the need to go any higher. I'm hopeful that Mayo will have some insight, and I have a lot of eggs in that particular basket, hoping I'll have some answers sooner rather than later. I really do need to get off of these pain meds, though. On the day that I hit the 60mg/day level, I noticed that my skin looked ashen and there were dark circles under my eyes. It reminded me of my first glimpse of myself post-chemo. Anyhow: nothing new to report on that front, other than its all holding steady.

Introducing... Boo!

The new dog is here! The new dog is here!

I tried out a host of names for her that rhymed with both "Kool" and "Show" (as well as trying out both names by themselves. Each was met with a lukewarm response. Names tried included:

(Names that rhyme with "Show":)

Sharona ("my my my my Sharona")

Lola ("L-O-L-A , Lola")

Shaniqua (sounds like a hairdresser)

Shona (too close to "Sho Nuff")

Siobhain (sha-vohn) (Sounds like an Irish hairdresser)

(Names rhyming with  "Kool":)

Zool

Kahlua

Cujo (just for the heck of it)

and finally, Boo.

Her ears perked up at Boo repeatedly, so I think that's the keeper. It will still take a while to get it locked down in her fuzzy little brain, but I think it fits her very well.

She's a cuddle-bunny, curling up with people (more like on people) on the couch and dozing off immediately. I may need to invent some sort of automated petting machine, though, as there can never be quite enough petting for her liking. There are worse problems to have in a dog, though.

In my house the dogs get to go up on the couch, and -- once invited up -- she prefers it to all other dog beds or places to sleep. Her first night here, she abandoned the people (and comfy dog bed) in the bedroom two rooms away and chose to stay on the couch by herself. She was quiet as a mouse all night, sleeping until about 8:30 am. When I got up to see how she was doing, she was awake and just quietly waiting on the couch.

She's perfectly behaved, and doesn't go through the trash or have any house-training issues. 

She's been used to being kenneled, but I don't actually have a kennel. My last 3 greyhounds have not been kennel dogs. I have a feeling that the couch has already become her "kennel" and her safe spot. Its totally fine with me, but I thought it was interesting that she was waiting on the couch for me to "let her out" of her kennel this morning.

She's far more interested in stuffed animals than the other dogs I've had. Last night, when getting ready for bed, she laid down on the dog bed in the bedroom, and then seemed to remember something, got up and left the room. She came back a moment later with a stuffed duck, which she put next to her bed. Like it needed to go to bed also. She then put her head down and went to sleep for awhile. Its all highly adorable.

Oh, and the neighborhood bunnies and squirrels will have to learn that there's a new sheriff in town.

Dog Day Afternoon

A new dog!

There is an all-but-forgotten 1975 Al Pacino movie called Dog Day Afternoon, but this has literally been a dog day afternoon for me. Today (specifically this afternoon) I got a new dog. In the afternoon. Today.

Work with me, people. I'm on painkillers.

Hopefully, our first day together will not devolve into a bank robbery and a hostage situation as it did in the film. Though the banks are not even open today, so I think the chances of that are slim.

The beautiful new dog is just over 7 years old, and -- like my last dog, Kaia -- was a "brood mama" meaning that she raised puppies after racing.

What's the dog's name, you ask? The funny thing is, that's still undecided. Her racing name (all greyhounds have oddball names like racehorses do) was "WW's Kool Show". All of the greyhounds have a racing name (that long, odd name that they race under) and a kennel name, which is usually a shorter version of their race name.

We were told that the new dog responses to "Kool", but her foster family (the family that transitions her from the track) found that she ignored that altogether. They tried "Show", and she seemed to respond to that. But that's an odd name for a dog, I think, so Jen and I have been thinking of names that sound enough *like* "Show" that she might not notice too much.

"Camera!"

I have been trying out a host of names to see how she responds to them. I have a feeling that I'll have a final name for her by tomorrow.

It was incredibly hard to lose Kaia. It's always hard to lose a companion or a friend, but when I was going through chemo, there were times that she was propping me up and giving me direction and purpose every day. I didin't realize how helpful it was to have a creature that relies on you for basic needs such as eating, walks and attention. Having a reason to get out of bed every day is helpful, though its sad to have to be reminded of that.

As I write this I've had The Dog Formerly Known as Kool Show for about 2 hours. She's settling in wonderfully and I'm devoting much of the next 24 hours to setting up a routine for her and making her feel safe here. All greyhounds are used to having other greyhounds around (though any dog or person will do, when you're lonely) and that constant sound and smell and sight of other dogs is comforting to them. It's a unique kind of greyhound that can be in a house without other dogs around without getting too bored. And it's an even more unique greyhound that can be home all by themselves. I know that the new mama-dog will be able to handle it, but I'll be easing her into it by leaving for 5 minutes at a time, then 10, then 15, etc. That will be my project for Monday. She's still a little too excited by the new surroundings (and departure of her foster family) to sleep just yet, but is coping by staying glued to my side. I noticed that she was not too nervous to snarf down her dinner in record time, so that's a plus. 

"Is there food?"

I'm sure I'll be oohoing and aahing over her here for quite a while, and its nice to have some positive daily distractions these days. 

Update: she's crashed out now. That didn't take too long.

"There was not food."

Free Beer and the Answer to All of Life's Questions

Not really. Just checking. Some of these posts -- and it seems to be the ones with the most provocative titles -- have been getting more readership than others. I have noticed that my post entitled "The Axis of Evil" has been getting a lot of love from Russia, and "The 20 mg Solution" (and a lot of my posts about Oxy), have been getting a similar amount of attention from Colombia. And I'm huge in Denmark, Romania and Slovenia, for some reason.

Likewise, an older post named "Psychosomatosis" continues to be perused regularly. Perhaps it's a shoegazer-death-jam band name or the name of a gripping, grocery-store mystery novel that perhaps involves someone waking from a coma... only to name the person that tried to kill them! 

For that matter, I also think "The 20mg Solution" would be a great band name. I might still use that one myself.

I can't see who's reading, but I do have some stats that give me some interesting information about how people access the blog in general. Safari (a Mac browser) is the #1 browser used, with Explorer and Firefox close runner-ups. Chrome (which is what I use, though I have excluded my own vists from the results) is a distant 4th. It's a great browser, people. Really. Firefox? That's so... 1998. A handful use the Opera browser, which is an off-off-off label browser that is simply horrendous. Whoever that is, you *really* need to switch to a better browser. 24 visits came from an a browser named Glue. I have no idea what Glue is.

Windows is the dominant operating system used, and not surprisingly. Windows accounts for 80-90% of all computers used worldwide.  This means that only 10-20% of worldwide computer users have any sense whatsoever. Oh no he di-int. Oh yes he di-id.

Desktops are still the primary means to access the blog. But desktop Linux lags well behind the relatively small numbers of iPhone, iPad and Android users. There is just 1 recorded access using a Samsung operating system to access the blog. Maybe that's my mystery fan from Belarus.

Drugs, and Conversations with Dr. Hunter

The pain has been ramping up to an almost unbelievable degree for me. 2 weeks ago I was on my 10mg 2x a day (20mg per day). Last night Jen and I nearly headed to the ER, but more and more opiates took care of the pain. As of today, I've managed to creep up to 20 mg 3x per day -- 60 mg total, or three times what I was one a few weeks ago. Likewise, the remaining pain is twice as bad as it was, even after the pain meds. At this point I'm feeling the pain constantly. Its like a sedative, and waking up is more like coming out of anesthesia than anything else. It is fixing the pain for the most past. I feel like now I'm at the pain level of people who live with some soreness in their backs. This level of pain management simply cannot continue, though. Right now I've crossed the line back into the "should not drive at all" category because of the pain meds. The side effects are of course ramping up as well, and I'm starting to develop nausea from all the Oxy-tin. I'm starting to feel like I'm in a room with big spiky walls that is is closing is, with decreasing options: pain, or soupy-headed dopiness. Today they may have converged: I have both.

I have an series of doctor appointments set up next week at Mayo, where I'll see a Urologist, an Oncologist and an orthapedist. I just talked with Dr. Hunter (my urologist, who is my primary Mayo doc) and he said that the orthopedist will likely need to request the scans she needs when I meet with her, rather than me being able to do them the day before with my other scans. Dr. Hunter said that rarely will the pre-order scans, since they're not totally sure what they will need or want without meeting with me. This makes sense, though it just isn't what I want to hear. What this means is that I will need to be back down to Mayo soon after our initial meeting to get an MRI (I could also do this locally to the Cities, I assume) and then meet with her again. I had been banking on the idea of finding some relief at this meeting, or at least some direction, but now it seems that I'll have to wait yet again for a different type of scan. 

Dr. Hunter mentioned that if the leg pain is tumor pain, they could do some localized radiation in that area. This might provide some relief, I would hope. 

What has me losing sleep right now is only partially the pain itself. Its also the thought that I may never get out from under it again.

People have asked, but I don't have a Caring Bridge site. Perhaps at some point -- when/if I'm in a state where I can't really take care of myself -- I may break down and set one up or something like it. But I have a feeling that I will resist for as long as I can. I'm just too independent, and I can pick up the phone to have Jimmy John's deliver me a sandwich, or to have a housecleaner over, or have a guy shovel my walk or mow my lawn easily enough. I may have to admit defeat at some point, but hopefully not anytime soon. 

Right now my brain is exceptionally fuzzy because of the pain meds, and my eyes don't quite focus correctly. I have no hunger at all. Please don't take it personally if I'm more forgetful than normal. Reminders are a great idea, and putting things in writing (email, text, etc.) is always best. 

There's really no chance that I could do my grad school classes (especially two intense classes than both involve teaching clinicals) with this level of pain and medication. And my classes are scheduled to start on February 1st. I have until then to decide if I'll cancel classes or not, but I'd rather have some idea beforehand. It may very well be down to the wire.

Dogs

One bright spot recently is that I've been auditioning new dogs this week. This sounds odd to put it this way (and its not like I'm making them read a selection from Shakespeare or anything) but its a process of figuring out who will best work with me and my house, my life and schedule, who will get along best with Jen's cat, etc. Losing Kaia was exceptionally hard, and tougher still as it came at an extremely bleak time for me. Its been incredibly difficult to have an empty house these past months.

A few weeks ago I volunteered to help ferry a crop of 6 new greyhounds, newly retired from the track, up to the cities. In that vanful of 6 excited and bewildered dogs (everything is new for retired greyhounds) I found two that I felt would be a good match for me, and I was able to observe them for a few hours on the trip back. I met one -- a big shiny, black, mellow, 3 year old boydog -- on Wednesday, and another -- a smaller, clownish, quiet, lovey-dovey, mostly-white 7 year old mamadog -- last night. Currently, the mamadog is my clear favorite. Like Kaia, she was a champion racer and then went on to raise 4 litters of pups. I'll have more information to share here once I make the final decision, but I hope to have a new dog-companion buy the end of the weekend. No one could ever replace Kaia, but it would give me a wonderful added daily purpose to have something else to focus on.

One interesting note: The mamadog has an ancestor in common with Kaia, and also an ancestor in common with my dear departed Woody, who I lost back in 2001 (purebred racing greyhound lineage is clearly documented for each dog back to the year 1820). Strangely (or perhaps not) I can see elements of both dog's personalities in the new mamadog.

I am the Ambien Walrus

This is the world's least interesting blog. Sorry about that. Log in to hear some guy complaining about his aches and pains. Who doesn't have those?

But, in my defense, I'm trying to track my experiences and make note on improvements, declines, etc. Its a diary that has unfortunately recently been a pain diary. All of us hope that I'll start writing about something else, soon. Today is not that day.

http://tinyurl.com/yed9a5n

Last night I went back to the Ambien. I wanted to see if I'd sleep through the night and not be awoken by pain. It worked! I still feel a bit run-over-by-a-truck-ish this morning, but I was not awoken by leg pain. I popped one (a full one, which is more than I had been taking) because the leg was bothering me so badly last night that I was afraid I wouldn't be able to get to sleep. But then when you develop virtually incurable (temporary) double vision, you know the Ambien is working, and its lights out.

I won't try any Ambien tonight, simply because I don't want it to be an every-night kind of thing and don't want to risk getting used to it and needing to eventually take more and more just to sleep at all. However, if the pain is excruciating before bed again I may change my tune and try one, though I feel like 1/2 would do it.

Ambien has an amnesia effect that makes you forget you're not sleeping. I once took it on a plane when the pipe band was going to Scotland years ago. when it was bedtime Scotland time, I took an Ambien, trying to get on the local sleep schedule. This is my preferred way of adjusting to jet lag, and it works great. But the problem was: I wasn't tired in the least when I took it, so I just stayed up and talked to people on the plane until I felt tired. I eventually drifted off, but afterward was told of conversations that I'd had with people before I went to sleep that I simply did not remember.

I'm convinced that it does actually put you to sleep as well, but perhaps it reduces over-thinking. And I do far too much over-thinking these days.

Another Possibility

Last night, right about at 4 am, I woke up again with pain in my leg. But I think I may have another idea as to the pain's cause.

About 15 months ago I had abdominal surgery. This was a deep and invasive procure that left an enormous scar. The scar is small potatoes in the scheme of things, though it still surprises me when I see it in the mirror. The incision, when open, was probably big enough to pass a cantaloupe through, easily.

When I awoke from the anesthesia I complained of numbness in the inner thighs, which the doctors originally attributed to normal post-operative stuff. But as months went by and I still couldn't feel anything in the thighs, they mentioned that there are many tiny nerves in the area where they had to operate, and likely a few of them were cut in the process. It was, they assured me, a delicate multi-hour procedure that involved 3 surgeons. And its fricking Mayo Clinic -- not Doctor Nick's Hollywood Upstairs Medical Center -- with one of the world's leading specialists in bladder cancer on the job. The nerve group in the area where they were operating ties into the inner thighs and -- if cut -- could indeed cause numbness there. I was told that this numbness would just likely be the way that it is. The implication was that its a small price to pay (without it they would not have been able to do the lifesaving surgery) and that it doesn't affect quality of life very much. And they're right. Until now.

I have gotten used to the numbness over the past year and happened to notice a few days ago that it is not as numb as it once was. It is not back to 100%, but it's definitely better. I feel that the pain in the left leg could be part of those nerves coming back to life, reattaching, or recovering from that trauma. When I really pay close attention when its at its worst, its not always a constant pain, but more like a shooting pain. This implies (at least to me) that it is neurological and possibly not bone related.

Oh: one more thing to add in, here: I tried the Tiger Balm patch yesterday on leg and back. The back seemed to improve by about 10-15%, which was very nice. Although the burning feeling from the Tiger Balm is a little distracting and makes it hard to forget about the back. Possibly its just that I was focusing more on the Tiger Balm than on the back pain, but it really seemed like I was able to sit in uncomfortable chairs at dinner without pain. Of course, that could just be the Oxy 15. Anyhow, not really a perfect scientific experiment, but one that I'm continuing again today. Heck: it's worth a buck to have some relief. I could do half-assed testimonials for them, with a quote like that.

But the Tiger Balm on the leg: not so good. I had it on for about 3 hours, and it seemed to progressively make the leg pain worse, feeling finally like I had my upper thigh in a hydraulic vice that was made of molten lava and operated by satan. The pain faded after I removed the patch (which I tried to stick on to my back with only limited success, the adhesive quickly loses stickiness). So, for whatever reason (and I have a feeling that doctors couldn't tell me why, either) the Tiger Balm aggravated the leg and soothed the back. Which -- perhaps scientifically, now -- implies that they are different kinds of pain, or at least come from different sources. It implies to me that the back pain is largely muscular (though it may have a bone/spine/disc origin) but the leg is either bone or neurological. 

Catching up to the rest of the story here, the leg pain *could* be those nerves regenerating or rebuilding or whatever they're doing in there. The plus side, if true, means that the pain is not cancerous. And having the beginnings of never-ending cancerous bone pain is a pretty bleak horizon to stare at. The downside of the nerve-ending hypothesis is that the pain may continue for an unspecified period of time, with no treatment that I am aware of to dull the pain... other than my pal Oxy.

Doing some research (the internet is a dangerous thing) it seems like the pain could also possibly be sciatica. BUT: The sciatic nerve runs down the back of the thigh. My pain is definitely on the front. So, my armchair self-diagnosis is currently neurological.

Perhaps Ironically, I saw an neurologist at Mayo last fall, who said that my back pain was not neurological. I'm meeting with 3 docs at may in a few weeks, none of which are a neurologist. Now, I do wish I had a meeting with a neurologist scheduled, as I have a feeling that the orthopedist is going to want to send me back to the neurologist for the leg pain. I'll call tomorrow and see if I can squeak in a neurologist visit, also.

It is still odd that the pain centers on the old bone break. And I do know that feeling well: it would sometimes ache a bit for a day or so when there was a storm or pressure change, for a few years after the break. It hasn't really troubled me at all in many years, and it has never been this painful, this consistently.

To further confuse the issue and disagree with myself, the theory of post-chemo pain does still make sense, also. There is documented evidence of old bone break pain after chemo (Jen was nice enough to dig some up for me).

More will be discovered at Mayo. And if not, I'll be highly frustrated and extremely discouraged. I'm still hopeful at the moment, of course, but expect a rant or two if I come back from Rochester with no better insight into the back and leg pain.

Tiger Bomb

While picking up a few things at the co-op today I walked past the Tiger Balm rack. For some reason I always forget about Tiger Balm. Even though it works, I've always felt that it falls into the classification of Things That Trick You Into Thinking You're Not In Pain. But then, I guess that's really okay in some circumstances. Certainly, all of us would have the root cause of the pain go away rather than mask it if we had the choice. But -- if that's not really an option -- I feel better about slathering a bunch of natural-type stuff on my skin than taking addictive pills, if all either is going to do is cover up the pain.

I tried the Tiger Balm patch, which I've never really done before. They're like $1 each, so maybe it's just my innate cheapness that has kept me from trying them. Or -- and this is more likely -- I probably bought a pack and kept them around for something special, and finally tossed them when they expired 3 years later.

Right now I have one on my leg (just over the femur-break that has been troubling me so much) and one on the back. The back area is tougher to treat, because at this point I'd need one that's about 1 foot by 2 feet square to get the entire affected area. The leg is easier to cover.

Are they working? I think so. I'll leave them on for about 12 hours and see how long they last and what they do.

Meanwhile, I can't think of Tiger Balm without thinking of this clip from one of my favorite shows, The Venture Brothers. (The clip is work-safe, assuming you're allowed to stream stuff from cartoon network.)

http://video.adultswim.com/the-venture-bros/tiger-balm.html


New Blog Feature

I just added a widget to the blog that allows people to subscribe via email.

The Dark Side of Morning

As has happened for the past few nights, I have been dragged slowly and inevitably from the depths of sleep at almost exactly 4 am. Whereas the back pain is usually the primary source of pain, these days it often takes a backseat to the bone pain that I feel in my left femur (the upper leg bone, and the biggest bone in your body).

I know I've talked about it, though it is worth mentioning again that I broke this femur in a motorcycle accident in 1991, and there is also a rod down the middle of the femur. It seems odd that a 20-year old injury (that has caused me no pain at all since about 1994) has started hurting again within the past 2 months, and so deeply and intensely. I have been told that old scars and wounds can reopen during chemo, but I have not yet been able to get an answer as to how this might relate to old broken bones. And also: chemo is over, already.

Of course, my brain goes straight to bone metastases -- or "bone involvement" as doctors so gently like to put it. I've had bone scans (but, admittedly, not since before I felt this pain) that *should* catch any metastatic disease in the bones. Though I'm still unclear exactly how bone scans work: I don't know if they're head-to-toe scans, or simply confined to the same area they're doing the PET/CT on, as some sort of bonus ("buy a PET/CT now and get a free bone scan!") freebie. After my last PET/CT scans in October, Dr Grampa (my now-former oncologist) told me that my bone scan was negative. I was surprised: I hadn't been told that I was even getting a bone scan, I thought I was just getting a PET/CT. Yet they somehow managed to do it at the same time using (apparently) the same equipment, without me knowing. Maybe its just a guy in the control booth eating a sandwich who looks over at me lying on the table -- really carefully -- for like a minute, and then checks a big box that says: "Bone Scan = Awesome."

All I really know about bone scans is that in the movie "The Pursuit of Happyness" (sic), Will Smith's mustachioed character sells bone-density scanners when he's not napping with his young son on public bathroom floors, getting arrested, working his ass off for the unappreciative Man, or having his wife leave him. You should watch it: its really an uplifting movie. In the end, it taught me very little about bone scans, though.

But the main point being: my leg hurts. And so far no one knows why. Add that to the list of complaints that I need to talk to an orthopedist about, which will happen at Mayo in a week or so. 

Yesterday night when the leg was hurting I thought it might be because I'd walked more than normal that evening (about 2.5 miles), more than my usual route. And when I woke up last night I took an oxy(co)done because the pain was keeping me from sleeping, and also because the docs are always bugging me to take them for what they call "breakout" pain. So I did, but really felt no relief from it at all until about 6. And then I slept uncomfortably and groggily until about 9:30.

The Oxy-co-done is a shitty sleep aid, I find. It leaves you not rested and fresh as a daisy, ready to solve the world's problems... but instead the Ox claws you slowly awake until you find yourself in a (hopefully metaphorical) greasy heap: sleep having snuck out on you without paying the rent some time ago when you weren't looking, and leaving you glaring grumpily at the sun and feeling like you ought to be deciding between warm beer or vodka from a styrofoam cup with a cigarette floating in it for breakfast. As it turns out, I had yogurt, granola and a banana -- but it felt like I wasn't really being true to the character.

Tonight I did not go for a walk at all, partially to see if there was any difference in the pain. There wasn't. So I might as well at least get the exercise of walking if I'm going to have the pain anyhow. I'm also not taking any of the extra Oxy tonight, for the aforementioned reasons. 

I look forward to getting this bone stuff looked at, and I have decided that if they also (as pretty much all of the other doctors have done) throw up their hands and say: "Huh. Well, that shouldn't be happening! I sure wish we knew what was going on, there!" I may start trashing the place. Luckily, Mayo is great at figuring out stuff that is hard to figure out, but I wasn't pleased with their Harlem-Globetrotters-esque lightning fast handoffs that I went through last time there, only to learn that my back/bone issues are not something that falls under the purview of urology, medical oncology, radiation oncology or neurology. Knowing what it is not is strangely not as satisfying as doctors might guess. I'd rather focus on what it is. 

Anyhow, the leg pain has subsided again for the moment, so I guess I'll see if I can get some sleep.

The Axis of Evil

The Axis of Evil.

Though really not a great photo, there are times (like this) that one can see that I still think like a photo art director for a healthcare company. I thought that the brushed aluminium (a metal tin lid) gave the tiny pills a nice pop.

Today I took the plunge and spent $268 on the prescription for a month's worth of the 15mg oxycon-tin pill. The 20mg every 12 hours option really just wasn't lasting long enough, so now I'm going to try taking the 15mg every 8 hours (45mg a day).

At this point I have no confidence that it will be perfect, but I'll give it a try for a few days at a minimum, and am hopeful that it brings more consistent and reliable relief.

In the British parliament, they can call for a vote of "no confidence" when they're pissed off at their prime minister, which is always. The British parliament is famous for loud jeering and grumbling, so I am currently envisioning a similar metaphor happening in my body right now, complete with indignant-yet-deeply-witty catcalls -- expressing doubt at the newcomer's ability to fix what the predecessor could not -- plus a lot of gavel-banging and some shameless grandstanding and attention-seeking behavio(u)r on the part of other systems during the transition. Poor 15mg. It has its work cut out for it, make no mistake.

The Inevitable Pendulum

Things are better today, partially becuase I haven't jacked around my Xytincon-ay (how does one piglatin-ize oxycon-tin anyhow?) but also because of a couple of a nice, low-stress couple of days with my sweetie. She's great at helping me talk though things and listening to me rant when needed.

I feel like the whiplash effect is fading and maybe I'm getting back to some sense of normalcy, which is good. My mood is better, anyhow -- which is always a plus. A day spent anti-shopping helped. A stop at Midwest Mountaineering where I bought a bungee dog leash while Jen spent nothing, yet still walked away with a brand-new camping air mattress (her old one was defective and had been warrantied). On to REI, where we bought things using gift cards (thanks, Santa!). From there, we went to IKEA and managed to avoid its insidious Swedish compact/convenient affordability by only having lunch. $3.99 for a plate of 15 Swedish meatballs, mashed potatoes and lingonberry preserves simply cannot be much of a money-maker for them. They're likely subsidizing this because they know that the average shopper will need to eat after a few hours of hardcore shopping, and they'd rather that you keep shopping than leave and maybe never come back. Or they are subsidizing this because there is no way to get out of the cafeteria without walking by lots of things that -- at these prices -- who can afford not to buy? I love IKEA, don't get me wrong, but it's virtually impossible to breeze in about out of there, and we both felt superior that we were able to escape their marketing clutches and take advantage of their insanely inexpensive (and pretty decent) food. Of course, we did have to exit through the emergency exit, with the help of a staffer. I didn't want to be temped by crazily-priced trivets, or Christmas lights, or spatulas, or mixing bowls, or rugs, or dog toys, or enormous bars of chocolate, etc. They make it nearly impossible to just hit the cafeteria and then bolt. For good reason.

Next, we went across the street to the dreaded Mall of America (known by locals as the MegaMall or the Mall of Doom). It is a place that I avoid at all costs because it (like IKEA) has a tarpit-like siren song that is hard to escape from in any sort of timely fashion. We foiled them yet again: I returned something at the Crocs store, stopping only to drink free samples of tea (one of which was called "Samurai Chai") and beat a hasty retreat. We felt very ninja-like, and my checking account balance actually went *up* today, over all. Take that, corporate America... and Sweden.

**Addendum**. In an attempt to get more relaxed (something that virtually all of us could use, but I could currently use more than most) we looked up meditation in Minneapolis on the internets. We found a place that does open, guided meditation a few times a week and put 10:30 am Sunday on our calendar.

Holy cult, Batman. This was not what I was expecting at all. I'm all about the alternative approaches: I see an acupuncturist regularly, as an example. But this felt like branch-Davidian, cultish, creepy, out-there to a degree that I was instantly uncomfortable with, and I'm glad that Jen felt the same. The room was smallish, maybe 30 x 15, and completely packed with people seeking enlightenment. All white and looked to be middle-class and upwards. They were shoulder to shoulder in concentric circles radiating out from a single kneeling dude, who was reciting some mantra over and over again. Everyone was following along, most with closed eyes. I believe in meditation (or at least I think I do...) but this felt more like brainwashing. I should have thought it was fishy when the greeter was extra-excited and sparkly-eyed about having new people. There wasn't room to sit or stand when we got there, and its probably a good thing, or we would have been looking for another excuse to leave. I have no evidence that there were automatic weapons hidden in the floorboards, but it would not have surprised me to learn this on the evening news. The insipid fake-friendliness, cramped quarters, the fervent, closed-eyed adherence to the mantra and being all-too-easy to get locked in to that room made us both extremely uncomfortable. They were cagey about the cost, also. Yoga places tell you straight up how much a class costs (and they ain't cheap). But we realized that this meditation center *can't* charge -- because they likely hold tax-exempt status as a place of worship. If the sign had said "Church of Steve the Extra Groovy" on the outside, I don't think we would have gotten out of the car.

I have done some Buddhist "mindfulness" meditation with my therapist, and that was cool, easy, and helpful. There were no Krishna-esque chants to learn and it was not necessary to play follow-the-leader to a guy chanting into a Britney-spears boom-mic. Likewise, with my therapist it was not necessary to "out-meditate" your neighbor, which is what this group was shaping up to be.

It was an interesting place, but one that I will not be rushing back to. It made for good laughs afterward, though.

Still Adjusting

Only just this afternoon did I feel like I had my full lung capacity back after the Great Trazodone Incident of 2012. Okay, so as I breathe really deeply now its still a tiny bit constricted, but how often do we breathe in to the limit of what our lungs will hold? It was scary when it wasn't possible to take in a full breath comfortably. But my main point here is: wow. This stuff really affected me, and must have been a a full-blown allergic reaction. The drug will go on the list of things that I've had allergic reactions to (which currently includes penicillin and contrast dyes).

I'm still felling a bit groggy -- though how much of that is the Trazodone and how much is the upped Oxy-tin is unsure. I've found that whenever I modify my Oxy-tin dosage (which I've done several times out of desire to be on the lowest dosage possible) my system goes through a bit of whiplash and I get a truckload of the worst side effects for a few days, then it tapers off as my body and the drug get used to each other. I'm still not driving yet, but will likely give it a try by Tuesday. I was on the 20mg (my current dosage) for about 3 months straight and felt basically fine. Though there is an argument that could be made for getting used to how things are and thinking that that is normal. The world did seem a little brighter and grittier when I went down to 10mg, but then I didn't drop as many things, either. So I'm committed to the 20mg train, at least until my appointment at Mayo.

Regarding that (which I don't know if I've talked about) I'll be meeting with 3 docs a Mayo: my urologist, Dr. Hunter, a new Oncologist, Dr. Abbott (who I was scheduled to meet with originally but because of some scheduling complication I ended up with another oncologist who didn't really do very much for me). And 3rd doctor, yet unnamed, who is a back specialist. My hope (which may fall in to the pipe-dream category) is that she will have a solution other than oxy-tin, like perhaps a cortisone injection, or a specific type of physical therapy, which will eliminate/reduce the pain so that I can start trying to be oxy-free, just to see what life feels like again when not one is not stoned all the time.

Its going okay, though of course I'm tired. And -- in that way that one gets when you discover that you're the only person at the party who is drunk -- extremely self-conscious about my actions. I'm convinced I'm saying and doing dumb things constantly. In fact I may well be, but there is no way to know if it has anything to do with the oxy. I try to resist the urge to draw the blinds and reject human interaction, though it is easier on some days than others. Reaching equilibrium on the meds is helpful, which will happen in a few days to a week, my experience tells me. Until then, as always, I ask for the patience of those around me as I get up to speed.

The 20mg Solution

***Note: as I'm using the names of a bunch of drugs that are addictive and have street value, I'm starting to be consistent about mis-spelling and mis-punctuating them. I really don't want my blog to end up in some junkie's Google search. ***

Today, as I mentioned previously, I just feel beat-up. I know that after a seizure (and I don't think I was having a seizure, but I feel that the aftereffects of intense tremors could be similar) people feel sore and wiped out, spent. That's me today. I've been napping virtually all day and I'm surprised that I can continue to climb back into bed and keep sleeping. Usually if I go down for a nap (which isn't every day, even when its a possibility) I'm only good to sleep for an hour max. Today, since 11 am, I've managed about 5 hours of sleeping.

I really think that the 20mg Oxy-tin is the way to go, now. That's what I'm on as of last night, and there is a subtle difference. Its more than the dosage, its like a subtly different drug. I remember taking vico-din as a kid after some dental work. That's the famed hydro-codone 5/325 tablet, according to Uncle Mike's Virtually Bottomless Store of Pharmaceutical Knowledge. 5mg of Oxy-done, and 325 of Tylenol/acetaminophen. Put simply, I really liked it. It made me feel like I was sitting under a warm blanket, inside on a chilly fall day, all safe and comfy. The world was quiet, I was kind, things were simple, and there wasn't that much to be concerned about. This is exactly why I've been leery of it: I clearly liked the stuff.

When they prescribed the Hydro-done 5/325 to me, they eventually stopped refilling the prescription because I was taking too many of them -- not out of some high-seeking behavior, but because it wasn't really doing enough for the pain at the recommended 1 pill every 4-6 hours. I was taking 2 of them every 2 hours at one point, or, put another way: dumping 650 mg of Tylenol into my system every 2 hours. That's way too much. The prescription didn't call for me taking it that often, but it was the only way to nuke the pain.

The maximum allowable daily dose of Tylenol/Acetaminophen *had been* 4,000 mg a day. Johnson and Johnson (the makers of the drug) announced in July 0f 2011 that they were reducing the maximum allowable daily dose to 3,000 milligrams. According to an article in the Huffington post, taking too much Tylenol can cause bad things, including liver damage. "In the U.S., it's blamed for about 200 fatal overdoses and sends 56,000 people to the emergency room each year." (http://preview.tinyurl.com/7h8fp79)

Perhaps Tylenol should adopt the use of Jace Everett's "True Blood" soundtrack song, "Bad Things" in their commercials. Of course the talkie bit would have to be replaced with a 3,000 mg a day warning. It would be entertaining, but sales would plummet.
http://www.youtube.com/watch?v=MDY42pFwq7c

And so, back to our story.

The 5/325 was too much because I was (though without knowing it) exceeding the recommended daily dose by over 4,000 milligrams daily under the old schedule, and by more than 5,000 mg daily under the new recommended limit that Johnson and Johnson proposed. This only went on for a few days, but still.

So, then they took away (or allowed the prescription to run out, anyhow) my vico-din 5/325 and gave me just straight oxy-done 5mg -- no Tylenol. This is a drug that I was allowed to bump up to 2 pills every 2 hours, but they still weren't comfortable with that long-term. Which is what led to the Oxy-tin long-acting.

But, to get back to my 20mg vs 10mg comparison, the 10mg just didn't seem to be cutting it recently. Taking a 20mg oxy-tin last night and this afternoon seems to have changed my world view for the better. Yes, I am definitely more clumsy. I dropped a dish in to the sink yesterday, shattering both the dish and the pint glass that was already in the sink. I felt that warm-fuzzy-blanket feeling, and I'm sure that why I'm able to sleep more, also. I feel much less tense and irritable than I did yesterday.

Apparently being Tense and Irritable runs in the family, occasionally.

Tense and Irritable is the name of a book that my dad did in 1964, that I remember us having boxes of in the attic when I was growing up. I always liked it. I found a copy for sale on Amazon.com, of all places. They have everything. Even books! But I digress.

My main point being that I feel much better on the 20mg. Oddly, the pain is still there sometimes (though not as bad) but I just don't care about it as much. Which is guess is all that really matters. The calm and inner quiet that I feel can be linked to the wondrous absence of pain that I feel more of the time, today. Or it could just be that I'm doped up on prescription opiates. Same difference. I resisted as long as I could, but I think upping the dosage is the best for me and for everyone around me. 

I'm able to focus enough to write, anyhow. Though I drove my truck briefly this morning and probably shouldn't have been behind the wheel. I think that was still the Taze-O-Done working its way out of my system, more than the 20mg 'tin.

Anyhow, I continue to breathe better and have almost no difficulty swallowing. I guess I did have a big allergic reaction to the Taze-O-Done. Lesson learned, for me: don't take Trazodone. Put another way: Don't Traz me, bro.

False Alarm-ish.

So the nurse at my doctor's office thinks I should go to the ER, but my doc disagrees. He definitely wants me to discontinue the Trazodone (which I had already decided to do, anyhow) but said that if I'm improving (which I am slightly as time goes by) that its not necessary to go to the ER. If it gets worse, certainly go in, he said.

So I *may* go in, but it remains to be seen.

The plan of the moment is that I'll spend the day at home -- which is a whole lot better than spending it in the ER.

ER Time

Off to the ER, I guess. I just talked to the doc and the shortness of breath that lingers worries them. They way the nurse put it: we're not sure what caused the interaction/reaction (other than: it seems like the Trazodone is part of the equation). And they'd feel more comfortable getting me on IV fluids and possibly getting some epinephrine in me. They would have preferred if I'd gone to the ER last night, but I wasn't in much of a state to drive myself when I was having the shakes, and then it passed about 20 minutes later.
Anyhow, I guess that is what I'll be doing with at least part of my weekend. Hopefully I won't stay over night.

More when I know more.

Trazodone? Taze-O-Done is more like it.

I had one of those things where I typed a long update this morning at about 8am and then (due to the combination of the iPhone keyboard and my big fingers) briefly saw a screen that gave me the option for saving or deleting the draft, and -- just like lightning -- I accidentally pushed the big red "delete draft" button and it was all gone.

So, in a nutshell, I made it through the night OK. I slept fairly soundly from about 4 am unit 8 am. I don't remember if I got up at about 6 to use the bathroom or not, but if I didn't, it underscores the dehydration possibility -- as I chugged about 50 ounces of water at 3 am.

Another observation that points to the dehydration possibility: I woke up with a pounding hangover. I didn't have a drop to drink last night, of course -- but a hangover is basically dehydration. When I lived at high altitude I got used to humidities in the single digits for most of the year, and drinking water was essential, or else I would get what felt like a hangover headache.

But, to put this another way: I've had a dehydration hangover headache like this in the morning *without* having experienced muscle tremors and uncontrollable shakes in the middle of the night.

And, because I think it must be commented on as well, the chills and shakes that I experienced when they had me on Methadone were quite different. That was a cold-sweat-chills-clammy-shiver that told me it was time for my next dose. This one was more like MS, or my take on what it might feel like. It did not feel like withdrawal of anything, since I haven't changed any dosages recently except for adding little more of the Oxy'tin daily.

I have a call in to Dr, Larry to talk about last night and also see if there is any possibility of this side effect being from the Trazodone, the new sleeping pill.

But, due to the wonders of the internet, I already have part of my answer:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000530/#a681038-sideEffects

"Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately:"

"Normal" side effects:

-- Nausea (yep)

-- Vomiting (nearly)

-- Weakness (yep)

-- Dry mouth (yep)

Some of the worst side effects:

-- uncontrollable shaking of a part of the body (you becha)

-- shortness of breath (yep)

-- chest pain (yep)

Symptoms of overdose can include: (remember... I took only 1/2 of what was prescribed)

- vomiting (very nearly)

- difficulty breathing (yep)

- Seizures (I didin't exactly have them, but: scary!)

So, no more Trazodone for me. I'll talk to my doc and tell him what I experienced, and I'm guessing he'll agree with my assessment that its a bad one for me that I appear to be particularly reactive to.

Looking into it further, I don't like that I was essentially given an off-label usage for a medicine that is intended as an SSRI antidepressant. I know they're convinced over there that I'm depressed (and surely, I'm not crapping rainbows over here) but their little 2-minue Depression test that they run you through doesn't take into account the idea of chronic pain. I feel like if we get that addressed, I'll be a lot less "depressed". 

My doc is good and I don't think this was anything sneaky on his part. I've been working with him for years. But I'll certainly ask for clarification.

There is an option at the the NIH site that has the option to send a report after a particularly strong reaction. If my doctor doesn't, I'll do one myself.

Right now I still feel wrung out: I can't inhale all the way comfortably, and I am sore all over. This is not the back pain per se -- more like how you feel the day after slipping and falling on the ice. Everything is just a little sore.

Whether from dehydration or Trazodone or both, I don't know.

Here at 10 am I'm still basically doing OK on the back pain, so I'll plan to go until 2pm for the 20mg tablet. This is once every 12 hours, for 40 mg a day -- a fairly low dose option.

Anyhow, more naps may be in order today.

Status Update (continued)

At about 2:30 the shivering faded away to almost imperceptible levels. Back pain is much better but not totally gone. It does seem like the 20mg pill is what I need right now. Although I have taken a couple of 10mg pills over the past 12 hours, so it's not really a very accurate scientific experiment. I'll see if I can get to 2 pm without the pain returning. If so, will pop another 20mg for 40mg total in 24 hours.

This past hour I have been feeling extremely thirsty, and have consumed about 1/2 gallon of water since I woke up. My tongue still seems dry, but coil be a side effect of the Oxy-tin. I did drink water today, of course: though less than normal.

I remember (with sadness) watching Kaia go through what looked like something similar (shivers, shakes) after she stopped drinking water, near the end. In her case, dehydration was almost certainly the cause. If my shivers were caused by dehydration it would have to have been pretty severe to get to the point of uncontrollable muscle tremors. Ir so I assume, in my non-doctor way. The water tastes good and so I'm continuing with that, slowly and steadily.

At about 3am I was struck by a intense wave of nausea. You know the signs: watering mouth, desire to spit, etc. certain that I knew what was next, I went so far as to move to the bathroom, bringing in (perhaps ironically) one of Kaia's old dog beds to sit on. I also took a 1mg antinausea pill (which I'm surprised stayed down). I'm not a throw-uppey person. I heaved just once in the past 30 years: the night after the first chemo treatment this summer. This time was close, though so far I seem to have avoided it.

I alao made myself a single piece of wheat toast a minute ago, which is what I would do for my dogs after they'd throw up, to settle their tummies if it seems like all they have sloshing around in there is pills. The pill is staying down as well, and the nausea is fading.

An odd night, but so far everything feels under control. The nausea and shivers are odd and new, and I really wish I knew what they could be from. Dehydration is possible, but seems like a long shot.

Likely heading back to bed soon, but will probably wait until 4am to be sure. The anti-nausea pills put me to sleep also, so I may not have much choice in the matter!

Anyhow: I hope this is just an anomaly, but I will call my G.P. (Dr. Larry) on Friday to keep him in the loop.

Likely I will have no more updates until Friday late morning, for those who might be worried.

Man, is it ever quiet this time of night. Even in the city.

Status Report

Awakened at 2am with intense back pain, mostly noticeable in the left mid-back. Before bed, I had taken a 10mg oxy-tin at 10 pm to try to get to 4x a day (every 6 hours) for that. It seems to have lasted 4 hours.

Upon getting out of bed I found that I have intense, constant, body-wide shivers that make it nearly impossible to type. They dont seem to be relate to cold or temperature. I took my temperature and it is 98.7. I took a 20 g oxy-tin at 2am for the pain but am now staying up (sitting on the couch, bundled up) because I am extremely worried. If shivers don't get better in a few hours I'll finish the night in the ER, which is really not how I'd planned to spend my weekend. If the shivers persist and I need a ride I *will* ask for one, don't worry. Right now this is scary and strange, but I don't think ER-worthy just yet. An hour or two will tell. I feel obliged to post an update as soon as I know more so that people don't worry.

Ps: I also took 1/2 of a new sleeping pill prescription before bed (can't remember the name, and don't really want to go to the kitchen to check). It didn't really make me all that sleepy, actually. It is always possible that all of this is related, but I have no idea.

Sent from my iPhone

Some New Ideas

I met with Dr. Larry today (my G.P.) to talk about pain issues. My experience with Dr. Bonzo (my palliative care doc that I was seeing for awhile) led me away from working with her and towards my experienced regular, head-to-toe doc. I haven't been keeping him in the loop enough recently, anyhow.

At the appointment my blood pressure was fairly high (146/90) which is way high for me -- or for anyone else, for that matter. Human normal is (last I checked) about 120/80. Possibly this high number was because I'd really only had coffee to drink that day, or possibly it could be that I have been in a lot of pain and irritable as a side-effect. Or maybe it was that I'd just taken a walk. Or some combination of all of the above. This is only a footnote to this account, anyhow.

At the appointment I asked Dr. Larry if one could be come accustomed to opiates and therefore experience a decreased effect, and he said yes: one could develop a tolerance to the drug over time. Another question I asked was whether or not I could take this 12-hour pill every 8 hours, and apparently that is totally fine. I also mentioned that when I take my 12-hour pill, it only really seems to last for about 6-9 hours. (It used to work great, and either the pain is increasing or the effectiveness is decreasing or some combination thereof).

I got some new prescriptions and was left with a few decisions to make.

Essentially, I am faced with the necessity of upping the dosage. I'm at the point where I can't really comfortably live with the pain on the current dosage. This will take some further monkeying to get them all right, but there are a bunch of options:

10mg 3x daily (30 mg total)

(Current schedule)

Downside: isn't really cutting it, pain-wise.

Upside: Less drugs in my system than all the other options.

20 mg 2x daily (40 mg total)

Downside: 12-hour pills may not be lasting long enough for me. So this could still leave me stranded here and there during the day. 

Upside: the 20mg tablets do seem to work.

10 mg 24x daily (40 mg total)

Downside: individual pills may not be strong enough to ever really cover the pain, though coverage should be fairly even. Also, will have to set an alarm for every 6 hours, day and night.

Upside: could cover all the gaps, if the pills aren't lasting as long.

20 mg 3x daily (60mg total)

Downside: Lots and lots of chemicals, and (potentially) doubled side effects over my current dosage.

Upside: Totally ought to work. It may be like hunting goldfish with a hand grenade -- in terms of precision and effectiveness -- but it should definitely eliminate all the pain. I may drop a lot of things and be a really dangerous driver, but I should be feeling great.

15 mg 3x daily (45 mg total)

Downside: this would be a totally new pill for me, I haven't ever taken a 15mg before, so I'm not quite sure how it would feel. But it might be the baby-bear-bed magical middle ground between the too-weak 10mg and the too-strong 20mg. Oh, another downside is that it is TWO HUNDRED AND THIRTY EIGHT FRIGGING DOLLARS for a month's supply. I was in a poor mood anyhow, but this news pushed me over the edge and I rejected the prescription bottle and walked out of Walgreens in a huff. So now this 15mg is currently *not* an option until I find out if there is a generic or something. Or actually pay the $238. Whichever comes first. 

Upside: May very well work, and is a good middle ground option.

Another alternative to shelling out $238 is to wait for about 3 weeks until the prescriptions will be completely covered by insurance. But really, it's just a shell game I'm playing by myself, here. My medical insurance, MCHA, has a $2,000 annual out of pocket deductible. Because it is still early in 2012, I haven't hit that deductible yet (I'll hit it just a few weeks). So: I can spend it now or spend it later -- but either way I'm still going to end up paying the first $2,000 that my health care costs this year. After that point, all doctor visits and prescriptions cost $0.00. Maybe its that I would personally rather give my money to Mayo Clinic than to Walgreens, but I know it really doesn't matter: each will get paid, whether by me or by insurance is immaterial.

For revised drug plans, I've all but decided on the 10 mg 4x/day currently, but I would also like to try the 15mg 3x/day. And now I really wish I hadn't rejected the prescription when they handed me the bill at Walgreens. Now I'll need to se if they can still fill it, or I'll need to get a new prescription.

I'm essentially balancing pill strength versus length of time that the pill is active, while trying to keep the daily mg. total to a minimum.

I feel like there's a way to write this all out in a mathematical formula. Basically I'm just making stuff up now, but I feel like it could be written out all sciencey, like:

Dmg = Pr - Lt

Where Pr is Pain Reduction, Lt is Length of Time and Mg is Daily milligrams. 

Or another example that just occurred to me (that looks similarly sciencey):

someone losing an eye ≠ everything being fun

Which is completely unrelated, but true.

Earlier tonight I took a single 5mg oxy(codone). Oxy(codone) is the fast-acting "normal" version of the sustained-release Oxy(Contin) that I usually take. I almost never take the Oxy'done at all, but this was a a "scientific" experiment to see if I felt any effect from it. The effect was only very slight, and my guess is that taking a total of 2 (10mg) would have probably fixed the pain for a few hours. I won't mess with taking more of those unless I really need them, but I was just curious. I'm sure there's some science to pill effectiveness and it seems like a 20mg tablet would be twice as strong as a 10mg, but it really seems to be more like 3 times as strong.  Also, the 12-hour 20mg Oxy'Tin is for some reason more effective than taking a 5mg Oxy'Done every 3 hours, and easier on the system also. Don't ask me why.

So now you know the sorts of things I spend my days thinking about.