No matter when I go to bed these days the body seems to want to get up at 3am. Could it be that I've become a European without realizing it?
Philip Pullman: His Dark Materials Trilogy (The Golden Compass; The Subtle Knife; The Amber Spyglass)
Some children's stories are not children's stories. (****)
Hilary Mantel: Wolf Hall: A Novel
Tough sledding to get through, but brilliant in spots.
Anthony Bourdain: Kitchen Confidential Updated Edition: Adventures in the Culinary Underbelly (P.S.)
If Hunter Thompson was a foodie. (*****)
Elizabeth Moon: Command Decision (Vatta's War, Book 4)
Good basic space opera (***)
Orson Scott Card: Ender in Exile
Boring in spots, but sprinkled with diamonds of writing. (***)
Timothy Ferriss: The 4-Hour Workweek: Escape 9-5, Live Anywhere, and Join the New Rich
Tim's a little crazy, but there's lots to chew on here in the area of questioning your basic assumptions. Good for that if nothing else. (****)
James Ishmael Ford: Zen Master Who?: A Guide to the People and Stories of Zen
Middle section reminds me of Genesis (begat, begat, begat) but the best up-to-date (2001) explanation of how all those Zennies got here. (****)
Soko Morinaga: Novice to Master: An Ongoing Lesson in the Extent of My Own Stupidity
Delightful book about a Zen master's progression. (*****)
Linda Greenlaw: The Hungry Ocean: A Swordboat Captain's Journey
Nuts and bolts of swordfishing from the world's only female captain. More fish than polemic. (***)
Natalie Goldberg: Writing Down the Bones: Freeing the Writer Within
Best book on interior of writing I've read in quite some time. Great advice for we the writing afflicted. (*****)
No matter when I go to bed these days the body seems to want to get up at 3am. Could it be that I've become a European without realizing it?
Usually I feel more like the Scarecrow, but today it's definitely the Tin Man. Who's got the WD40?
I've received from feedback that some of what I've put up on this blog over the past few days has been useful to someone that was about to undergo brachytherapy at MGH. So, in the spirit of "this is what happened to me - it may not be that way for you," I've decided to put up my notes about what happened during the procedure before my mind actively forgets the whole experience. Maybe this will help someone else get a sense of what the whole thing is about. Overall, I thought that it would be pretty weird having radioactive seeds place in your body. It was.
"The Procedure" (as we love to call it) actually starts the day before you get to the hospital. You're given a long list of things not to do before the day of the operation, but the most important is that you can only eat "clear liquids" the day before. So, unless you're into bullion as some sort of life-style cleanse, this means that you're pretty much living on soda for the day. This is not my favorite diet and one that makes me sluggish and hypoglycemic. So, if you're like me, don't plan on actually getting much done the day before. You're not going to have a the fuel to do it.
Also, they tell you to get a bottle of magnesium citrate (a powerful laxative) and drink it at 3pm. I gather that the object here is to clean you out so that there are no obstructions to the ultrasound that they are going to put up your butt so that they can guide where the seeds go during the operation. For whatever reason, it means a start on developing a relationship with your plumbing which will come to full fruition Post-Procedure.You might want to check what you want in terms of reading materials in the bathroom at this point in the process. You're going to be there for a while.
On the big day, Denise and I slide along the roads into the MGH from Roslindale for a 6am appointment at the start of a January snowstorm. This puts a bit of an edge on the festivities that would have been edgy anyway. Though I had a "sick kid" childhood, I've somehow managed to avoid being hospitalized all my life. This is my first big meet-up with Extreme American Medicine and, for this fact alone, I'm not looking forward to the day. I'd had no real food the day before and I've ingested nothing at all since midnight. This made me even more out of sorts for some reason. And then also, for some reason, I found it hard to sleep, especially since I had to get up at 4am to make it to the hospital by 6am. This should have made for a very cranky Spriggs, but I'm focussed as I get ready for the hospital.
On the other hand, I have to be happy that I'm the first surgery of the day. This is fine with me - I'm getting worked on before they get tired of doing what they do for a living (and it is Friday, after all).
So we arrive at the Wang Building of MGH, just prior to 6am during a snow storm - making it difficult to read the portents of the day. Me? I don't seem to care much since I'm already in some sort of strange, calm altered state that means that I"m either very Zen or hypoglycemic. Maybe both.
Denise and I check into the slightly crowded and quietly anxious pre-op waiting room. At only a few minutes after 6, Denise and I are collected by Suzanne, a pre-op nurse who's obviously been doing this stuff for a while who leads us into the outer sanctum of surgery. She's the first in a number of waves of nurses and doctors who will ask me questions in order to get a more complete medical history, tell me what's coming, and, most importantly, ask me what my birthday is (am I the real Marshall T. Spriggs that they're going to be working on?) This whole process takes about an hour and a half to two hours.
We are taken into one of those little curtained "rooms" off the operating room and I was told to take off my clothes which are then bagged and put on a hosptial Johnny. They were very happy that I left my jewelry and partial plate at home (they were very impressed that I did this for some reason) and that I had brought an eyeglass case. After this was accomplished,, I was in my regulation hospital togs, and I was directed to lay down, the interrogation started for real (in the nicest possible way).
After this Suzanne disappears, the pleasant and busy Susan (as opposed to Suzanne) introduces herself as my nurse/anesthesiologist. Susan also asks my birthday and several other more pertinent medical questions as she tells me what is going to happen. This leads eventually to her inserting an IV into my arm for a dose of Demerol that she says will "relax me." This it does, though I feeling pretty relaxed anyway for no rational reason. In a couple of minutes I start of feel a bit fuzzy. Thankfully, no one asks me my birthday.
I do get a chance to have a good discussion with her about my anxieties about breathing during the surgery. I am anxious about this part of the tour probably most of all as a result from having quite a few times in my earlier life where the breathing thing was an issue. So it feels good to be able to emphasize that I want to come out of this continuing to have this function. Though she's very busy, Susan does listen quite closely to what I have to say and that makes me feel better about this. Score one for the wonderful Susan.
I get one last shot at the medical professionals as the operating room nurses come by. They seem to be worried about getting me from one table to the other in the OR and ask if I have any problems with my back. I say, "yes, sometimes I have back spasms." I explain that I used to study a martial art that was like judo and I landed on my back quite a bit when I did it. One of the nurses asks what I do when this situation arrives. I reply that I stay on the couch for a couple of days until it stops hurting. They give me odd looks and then leave.
The final member of the team finally shows up almost as an afterthought. The anesthesiologist and I joke about the size of the needles that they're going to use on me. (Yes,long, but not as long as I thought). Seems like just another Friday for him, which is strangely comforting to me since it definitely isn't for me.
Denise is told that it is time to go. They get her cell phone number and tell her where it's probably best to get breakfast and wait. They will give her a call when they are finished and will come out to talk to her while I'm recovering.
Of course, time passes quickly when you're having fun (and on Demerol) and the pre-op process takes a quick two hours - scheduled for a time of 8am - and they, on time, roll me out of the curtained area in through some doors directly into the operating room. By this time I'm unfortunately very unfocussed and incapable of asking about all the fun shiny steel stuff that's all around. I do notice that members of the team is there but I don't really see the surgeons to talk to them. I just a wave at them as I move myself onto the OR table. Not that I couldn't see them to talk to, I suppose, but by this time I'm so "relaxed" that I couldn't have a coherent conversation with them anyway. They know this and don't even bother to talk to me
Susan is there with an oxygen mask to cover my face. Three deep practice breaths, one more, and then:
Big pain the in dick. Or maybe the ass. Or maybe somewhere in between. Hard to get that specific when you're coming out of anesthesia and everything is a jumble. But I awake to pain - but not massive, overwhelming pain, but pain nonetheless. And this oddly provides some sort of focus for returning to the light.
The first thing that I can focus on is Moira, the post-op nurse. She has a calm demeanor and pleasant face, but also the look of the sadness of someone who's seen a little too much of life. I wish that I could make her smile. But in the meantime, I'm in pain. She looks at me, asks me if I'm okay, and I seem to be able to talk or mumble something. She asks if I'm in pain and I say that I am. She asks me if I want a Percocet. I nod yes. There's a reason that they call nurses Angels of Mercy.
The next hour is spent slowly coming back to consensual reality and getting help taking a couple of trips to the bathroom. These trips are the next major landmarks and adventures of the day. They want to be sure that there aren't any urinary blockages before they'll let me go home. But, of course, first I have to be able to stand and that takes a large measure of effort and concentration. The pain begins to subside and I drink a couple of ginger ales and eat a couple of crackers, Moira determines that I can go home and she gives me my bag of clothes, escorts me back to the bathroom and I start to complete what has become a complicated process of dressing myself. They told Denise that I'd be out for about 20 minutes after getting into recovery. Knowing me, she told them that I'd be out for an hour. She was right.
By the time that I'm finished dressing, Denise has arrived with a wheelchair and I find myself being wheeled out of the operating suite, down the elevator, and out into the MGH lobby where I get to see everybody cope with the snow storm while D goes for the car in the parking garage across the street. Very nice cops on duty at the entrance allow D to live park while she picks me up and make sure that I actually get into the car since footing isn't very good in the snow and I'm still not very steady.
The storm has backed off and the streets are just wet heading back home. We roll into the parking place in front of the Roslindale house at 1pm. Eight hours house to house. Just a quick trip to pick up a few dozen radioactive seeds.
I imagine that this is where this chronicle of my experience will be of least use to the general population. All us have different bodies that will react differently to having foreign objects placed in them. But, since people don't go through this process everyday maybe there is some useful stuff in here. But please be advised that all conclusions that I've come to, especially about this phase of the process, are up for re-evaluation as I go through them. The process is not only an on-going one, but has provided me with some surprises that I didn't expect.
First, there seem to be at least two phases to this recovery thing - immediate recovery and acclimatization. At the point of this writing (two weeks later), I seem to have gone through the first, with the second being what I'm in at the moment. After this? A third phase? Who knows?
This first phase seemed to take about a week.
The first order of business is to shake off the anesthesia. This actually seemed to take me a couple of days. My pain was very minimal and well controlled by Tylonol. I was sore both inside and out however. The body seemed to be going through a lot of subtle internal changes and I made sure to follow what it told me it wanted: food (especially after being starved for a day and a half), sleep, and frequent trips to the bathroom. It seemed that I could go for a period of time lying down without heading to the john, but as soon as I sat up it was a signal that it was time to hit the plumbing. Fortunately, I live in a small apartment and the distance between the couch in the living room and the bathroom is about 30 feet.There was some blood in the urine, but very little and my appetite was surprisingly good.
All in all it was pretty much of a seat of your pants week with me trying to find my way back while eating, sleeping, and especially peeing according to no prearranged nor regular schedule. Energy levels were up and down and though I could do some intellectual work, I couldn't do it for long. Since I'm a primarily a writer when I'm home, this lack of concentration wasn't much of a problem. Actually, it was alot like life, execept that it happened at 4am.
I was given a set of three drugs to take once I got home. First was Cipro that guarded against infection at the points where they put the needles into the body. Second was a steroid that tried to keep the prostate from swelling and shutting down the urethra that goes through it. And then there was Flomax which is used to relax the prostate in general making it easier to urinate. A note here: a talk with your pharmacist is a good thing to do when you pick up your drugs. Mine noted that Flomax can result in a lower blood pressure and therefore it is best to take it just before bed. Neither of my uro-guys mentioned this when I talked to them about the drugs.
The most amusing part of the first three days was the necessity for me to pee through a paper strainer. It seems that seeds can actually be ejected through the urethra during the first few days if they are not placed perfectly and the docs want to cut down on the Iodine-125 in the water supply. So, I was instructed to pee through the strainer and, if anything came out, to pick it up with tweezers and put it into a lead-lined salt shaker that I had been issued. In my case, no seeds emerged, but I may keep the salt shaker as a souvenir – my own personal Yucca Mountain.
I do remember sitting on the couch on the Wednesday after the Friday and suddenly feeling like I was "back". I was grateful for this. I was weak but functional and had my center back under me for the first time. I went outside for a few minutes the next day for the first time and that felt significant. For the first time, I could actually get away from a bathroom for a half an hour. Of course, I was careful to go somewhere with easy access to a Men's room.
It was also at this point that my radiation oncologist called me up to check on me and tell me that I should remember that the "symptoms" would be coming back with a vengeance very soon. He also reminded me that I had purple balls due to bruising. Love that guy, even if he was right.
Phase Two -
Saturday of last week I woke up warm. I was especially warm way down deep inside. It had taken a week for the seeds to start to cook the prostate (and hopefully the cancer cells in it). As far as "symptoms," it was back to not quite Square One again. Let's say Square One and a Half.
The body feels okay, but somewhat alien as it tries to digest the fact that it has radioactive foreign bodies in it and it's a little wonky as a result. Or maybe it's my reaction to the steroids that I've taken to keep down the swelling. For this week, I get burst of energy followed by periods where I feel like I weigh 90 pounds. My concentration goes from being able to concentrate to write pieces like this to being confused about how to empty the dish washer. Not being a terribly linear thinker in the first place, this is not terribly upsetting to me, but it is pretty weird that my most productive part of the day has somehow been transferred to the 3-5am timeslot. I was constantly feeling dehydrated and pouring liquid in translated directly into liquid immediately coming out.
I've gone off the steroids for the past couple of days and many of the above symptoms have eased off. Head is clearer and I'm able to get more sleep. Of course, I'm still going back and forth to the bathroom approximately once a half and hour but I'm not feeling so thirsty all the time.
Progress has been slow, but it does seem to be happening.
So, that's the way it stands here on Day 15 of "My Brand New Radioactive World" (probably a good name for a band at some point). More updates as data becomes available.
For those of you interested in how I'm doing (80 hits on this blog alone during the past 4 days- wow, I wasn't this popular in high school), I thought that I'd give you a quick update:
Physically: Swelling seems to have gone down on the floor of the pelvis where they stuck the needles, but it can get a bit sore during the night which I control with the use of regular Tylonol. In general, pain hasn't been a problem here.
The biggest problem is that I'm still having problems with standing up, by which I mean that whenever I do it I must immediately head to the bathroom - which is conveniently located only seconds away from the couch where I have stationed myself for the duration. Once I am at the plumbing, I get to pee through a strainer just in case any of the little radioactive seed beasties want to make a break for it. If this happens (it hasn't as of yet) I'm to gather them up and put them in my very own small lead-lined container for delivery back to MGH with my next appointment (and then they probably on to somewhere in Nevada).
The process of transport from couch to bathroom and back happens many, many times a day and can be pretty annoying since it does sort of limit my range of motion even putting my study upstairs out of reach for the moment. But, of course, it does give me something to do.
Mentally: I've been groggy during the past couple of days after being pretty clear headed on Saturday. This may be due to the fact that my sleep cycle is all messed up. Either that or the body is getting used to the fact that it now has foreign objects in it. Or most likely both. Either way, I'm groggy during the day and wide awake at 4am (check the time stamp on this post as proof). Having always been a guy who goes solidly to sleep for a full 7 or 8 or 10 hours a night, this is a new development.
Emotionally/Spiritually: Besides being somewhat annoyed with my body not functioning properly (nothing new since I grew up as a asthma and allergy-ridden kid), I seem to be the usual fairly stable personality that a good Yankee should be. This may change as the time I spend going back and forth to the plumbing extends further down the line. Or I may just not be understanding what's going on here. If you want better information, about this aspect of the recovery, you might get a more accurate assessment from Denise than from I.
One surprise that's starting to come to me out of this process is that I feel much more like someone who actually has/had cancer than I did for the past three and a half years since diagnosis. Prostate cancer is unusual among the long line of cancers that one can get simply because you can have it for a very long time before it will kill you or even give you symptoms if you have the "right" kind - the passive kind that I developed. This can lead to some very long mind games if you choose not to do anything about the fact that you have it for a long time like I did.
Living in a death-denying culture like we have, it's hard to simultaneously keep the fact that you have to keep on top of where this thing is going so that it won't get away from you and kill you while you don't have any significant symptoms. The cancer becomes a mental game where you try to effect the progression (something that is not easy to do since no one has come up with proven ways to do this - lots of theories, but no proof), while not getting any feedback as to how you're doing except a crude indicator (PSA) test every three months and maybe a biopsy once a year. Did cutting milk out of the diet work? There's no real way to know.
But now that I have titanium seeds, I guess that I feel like I've had my ticket punched. I'm now a full fledged cancer-survivor, even if I didn't have to go through all that invasive surgery and chemo that the other members of the Club That No One Wants to be a Member Of have had to go through. For this I am grateful. Having to go to the bathroom all the time is a pain in ass, but it's not anywhere near what others have to go through to cope with their particular version of these diseases. If anything and somewhat ironically, my initial feeling about all this is even more gratitude that I got away with cancer-lite than when I had no symptoms at all.
Ah, but life is strange.
Thanks for being interested in all this. I don't have a choice. It's nice that there are people who do who are interested anyway.
Please take care of yourselves.
Well, I got to MGH at 6am (first in line, no waiting) and it's now 1pm and I'm back home. Procedure seemed clean and efficient to me (from what I could see, being unconscious for most of it). The only major problem being the constant question of do I really need to go to the bathroom or not.
Now it's to bed to try to sleep off the anesthesia. I'm sure I'll come up with some up with some sort of philosophical implications of all this. But it's going to be later.
Thanks to all who have been so supportive. Check you later.
Denise and I went and saw the main radiation oncologist at Mass General last week for a second opinion on "The Bulge" in my prostate and his idea of what I should do about it. Dr. Anthony Zeitman is a lean brit with a three day growth of beard and a pretty young resident hanging on his every word, but seems to very much know what's he's doing around Madam Curie-ville. And he's seen lots and lots of cases like mine.
His evaluation of the situation was much the same as that of my urologist Kevin Loughlan: yes, I have to do something - though he's more lax on the timetable as to when this has to happen. He doesn't seem to think that I'm in any immediate danger, which is good to hear. However, when he made this evaluation and handed the discussion back to me for a decision, I decided that it was time to do what I've been avoiding for the past three and a half years - treatment and all the ugliness that goes with it. Hopefully, the implantation of radioactive seeds won't be too much of a horror show.
I have to admit that I underestimated the mental strain of having cancer - even the super slow version that I have. Though you can forget about it for a while, it's always seems comes back to be in your face day after day. You can run, but you can't hide. I'm somewhat relieved to be doing something about the situation that is at least more definitive than taking supplements or adjusting my diet. I don't feel good about giving in to the disease, but then I always knew that I would probably come to this in the end.
And besides, I asked Zeitman if there were any miracle cures on the horizon, he quickly said, "no." I am now, however, negotiating for superpowers as a result of being temporarily radioactive.
Don't have a date as to when this transformation will happen. I'll let you know when I do - it's probably going to be sometime in January. And, yes, I want one of those cool Spiderman webshooters for Christmas.
So, the urologist put his case this morning: rising PSA, suspected bulge in the right hemisphere of the prostate which may be the prelude to nasty spread of the cancer, cancer of some type found all over the right hemisphere: therefore, time to treat. Of course, I've been resisting treatment for the past three years since the "side effects" of a 50% chance of impotence and messed up urinary function for the next two years (at least) have not been palatable.
But the side effects are better than the pretty ugly death that I say my friend Bill go through (they diagnosed him too late) and I don't see any miracle treatment coming down the pike for at least two to three years (and I've been looking hard). So even though I could put things off for a while more, I guess that it's time to go to the treatment hoedown.
Of the available treatments, I'm thinking that the radioactive seeds may be the best way to go. It's the least invasive (the operation is done as an out-patient procedure) and it has about the same stats for side effects as surgery, and it has the potential for giving me super-powers if those Spiderman comics are really true.
Next step: talk to the Radiation Guy at Mass General and then, probably, set a date. And alaman-left.
It isn't everyday that you get a compliment from the Director of the National Science Foundation on your work followed closely by a voice mail from your urologist saying that your cancer has spread and your probably going to need surgery or radiation. Odd day.
I bet Dennis Hopper never thought that he would become the poster boy for Prostate Cancer: Today's Daily Mail
So, I stumble downstairs last night at half-time of the usual American excuse for sport in the fall (large men running into one another) and turn on the TV to get the score. As it turns out, it's half-time and what appears on the screen are many blonde cheerleader-like smiling women shaking pompoms and wearing some sort of costume that includes a particularly gaudy shade of pink. This all makes more sense as the camera pulls back to reveal a replica of a giant pink ribbon being held up by many people on the field and I suddenly knew.
Cancer had finally made it to the American main stream.
First I heard of it in the 60's, cancer was a death sentence. Then it was a tragedy. Then it was the object of a war and then something to be overcome with heroic effort. Now it seems it now has evolved into a marketing opportunity. Congratulations cancer, you've made it to the center of the mercantile American culture.
Now you too can emote along with the women who suffer – for a price. You can buy the pink towel that Tom Brady wore during the game or perhaps a pink chin strap that your favorite Miami player wore as a part of his helmut. For a price. And you will get to feel get that you contributed to wiping out something that you were "made aware of" compliments of the NFL. Or maybe having your awareness raised is enough - but I doubt that this is what the organizers of half-time had in mind. They were after money and awareness is only the royal road to the dollars. Of course, the dollars will bring good things - they always do, but I didn't notice anyone talking about longitudinal studies during half time. This was not about education. It was about bucks.
I guess that those of us with unpopular cancers will just have to hope that some day our cancer becomes popular so that we can have our night on Monday Night football too. Maybe we'll get the commentators to tell their stories of urinary incontinence and how Viagra has worked wonders since the operation. Maybe, but I doubt it. Anyone want to buy a blue jockstrap from the prostate cancer survivor?