Z80 - The Diagnosis Is Not Consistent With The Gender of the Patient: Category Cancer

New blog title

David Poncelow — Wed, 11 Apr 2007 23:09:00 +0000

I changed the name of this page after going through some of my insurance paperwork. I came across this gem and couldn’t resist- it’s just too well suited. Here’s an image of the ‘explanation of benefits’. The amusing part is the reason they rejected the claim.

Done with Radiation

David Poncelow — Wed, 11 Apr 2007 14:25:00 +0000

I’ve been really bad about writing here over the last couple of months, for a couple different reasons. I find that I have a hard time writing about something for public consumption that I don’t quite understand yet, and I’ve had quite a bit of processing to do.

As of Monday I’m done with radiation, (and I’m quite happy to be done). I’m doing OK, though it’s a bit painful as my skin renews itself. Luckily my skin held up quite well, and it’s only been the last few days that I’ve had any problems.

The radiation was an every day thing- every weekday morning at 8 I would take my scooter up to the clinic on first hill, change into a gown-shirt, and wait for my turn at the machine. When my turn came, I’d undo half of my gown and lay down on a steel table with a padded donut to cushion my head and a couple u-shaped cradles for my right arm. I would hook my left thumb into my belt loop and then the technicians would then raise the table to the proper height (a little over waist high for most of them) and use two laser beams across my chest to line up against three tattooed dots that I got on my skin when I first started. They would then roll me and put a foam pad underneath, lining me up in three dimensions so that I was always in the same position.

When they were satisfied that I was in the right location they dropped the table and moved me towards my feet. They then turned on a light in the X-Ray head (a large, roughly hemispheric head connected with a substantial rotating arm to a large box by the wall) and lined the light up against a sticker (‘tagaderm’) that marked the top of the radiation ‘field’. They would then place a long thick membrane onto my chest (strangely called a ‘bolus’) that acted like more skin, allowing them to focus the energy closer to the surface.

At this point, everyone would leave the room, moving to the other side of the 9-inch thick door. Lead shutters in the x-ray head would move to create a complex contour. These shutters are a little difficult to describe - if you put the fingers of both hands together in a line index finger to index finger and pinky to pinky, it would be something like them. Move each pair of fingers apart a little and you can describe a shape. That’s what these lead shutters were like, each pair of ‘fingers’ around 5mm thick.

The head would rotate to above my left shoulder, aiming at my right chest, and the beam would be turned on. The machine would create a buzzing sound and an flashing light would turn on. The beam would stay on for 6 or 7 seconds, and then turn off. I would hear some whirring in the x-ray head, a pause, and then it would be turned on with a different power- the intent was to give me an even dose of radiation from the skin to 3cm down.

The x-ray head then moved to the next position, over my right shoulder. A different shape was described, and the beam came on again. Another move to beneath my right side and two more beams. A technician then came in and placed a wedge-shaped piece of steel in front of the head to shape the strength of the next beam, left the room, and the beam came on a final time.

I believe that the radiation is measured in a unit called the röntgen- I’m not sure I caught the actual unit name correctly, but I got 6000 of them around my chest and 5000 around my right clavicle. If the unit actually was a röntgen, that compares (according to Wikipedia) to 50 that I would have received in background radiation over 60 years.

Over the course of my treatment the treated area got redder and redder. I put aloe on three times a day, occasionally getting some odd looks (but strangely no questions) while doing so at work. It held up quite well though, only becoming a little sore until last weekend, with one day of treatment to go. At that point I started getting blisters and the skin started turning dark and peeling off- I just posted a couple pictures up to flickr. It’s gotten a bit worse since and will likely continue to do so- the worst usually comes a few days (up to 7) after the end of treatment. From what I understand, it should get better fairly quickly after that.

So that’s radiation. Now that’s done (save the healing). Chemo is done. Now I just have the Herceptin and the tamoxifen. Each of those are a piece of cake- the tamoxifen is just a pill I take in the morning and evening (and will for the next 5 years), and although the Herceptin is injected into my port like chemo, it only takes 30 minutes to go in and there are no ‘pre-medicines’ needed to mitigate side effects or allergic reactions. I just have to do that every three weeks for the next year. So the worst part is over and things are looking up. Now I just get to start getting back into shape and lose the 15 pounds that I gained during these treatments!

I’ll try to post a little more on the emotional side of all of this (particularly chemo ending) soon. It’s strange, but the hardest time I’ve had emotionally was after the chemo was done.

Last Chemo treatment

David Poncelow — Sat, 27 Jan 2007 00:54:00 +0000

I received my last treatment of Taxol yesterday. It went well, and it’s such a relief to have that part of all of this over with. It was a pretty easy treatment… the Taxol always seems like such a long time, as it goes in over three hours. That plus the visit with the oncologist, the blood test beforehand, and all of the pre-medications makes it stretch out interminably. I sat in the treatment room with a rather nice and enjoyable (and talkative!) guy this time.

The nurses were all so sweet, too- they brought me a piece of cake with a candle in it and sang ‘happy last treatment to you’ to me. I know that I’ve gone on about how well taken care of I’ve felt at Swedish, but I really have been cared for by some remarkable people.

Of course, now that the chemo is done I get to start in on the rest of the treatments. Everything from here on out comes all at once. In two weeks I meet with the radiology oncologist for my radiation consultation, getting all set up for that bit. The treatment itself will start in three weeks, so I’ve got a little bit of time off. Unfortunately Ballard doesn’t have the equipment to do the radiation treatment, so I’ll be heading downtown for that part. It shouldn’t take too long for the treatments, but it’s going to be every day for six weeks. Luckily the downtown campus is on my way to work, so hopefully I’ll be able to do these treatments on my way too or from work.

In three weeks I’ll start getting my first Herceptin treatments as well. According to Julie (the nurse that usually takes care of me) this will be a piece of cake. No real chemo-like side effects, and it should take only about an hour to pump in with no pre-meds. So it will probably be only a morning rather than the full day that it has been. I’ll be doing that one every three weeks for the next year. At the same time I’ll be starting up on the hormonal treatment. tamoxifen. I’ll get that one for the next five years or so.

It’s such a relief to be moving on to the next step. More to come.

Over halfway through the chemo

David Poncelow — Thu, 21 Dec 2006 18:59:00 +0000

I haven’t fallen off the face of the earth- I’m afraid that I haven’t really known what to say lately. Three weeks ago now I got my last treatment of A/C, and a week ago I got my first treatment of Taxol. I have to admit that I’ve been having a bit harder a time these last couple weeks.

I think that it’s natural for the middle to be the hardest- the determination with which I started has waned a little bit, and the remainder of the treatment seems like a long ways left to go. But each treatment brings me closer to finishing, and soon I will be done. I expect that as I get closer it will be easier again. I think it’s a lot like Wednesdays- when it’s a hard week, that workday can feel so much longer than the others.

I’m also starting to get the fuzzy brain that Aunt Stacy has mentioned. It’s more than a little frustrating- I can’t seem to hold a train of thought, so it feels like I can’t think. I’ve had problems doing things like adding up totals while splitting a bill- I just can’t keep track of the numbers as I’m used to doing. Being able to read comes and goes as well. Sometimes I can keep track of the train of thought, and sometimes I can’t. It seems to be somewhat related to how ‘conversational’ the tone of what I’m reading is. I was able to read a book on Iceland last night without a problem, but a fairly easy book on programming was a lost cause.

I’m also finding myself with less going on in my head. I’m used to having thoughts vying for my attention, and I’m always thinking about something. Now I can sit and look out a window without thinking anything and just lose track of time.

The Taxol was different (and a bit harder) too- I had expected this treatment to be a bit easier than the A/C, but instead I had a harder time. Part of it was the pre-meds and part of it may have been this particular time, as I’d been fighting a cold and wasn’t feeling grand to begin with. I found myself getting very emotional during the administration for reasons I didn’t really understand and felt very ‘altered’. I wasn’t able to futz around on the computer or read a book- instead I tried to sleep through it. We had a wonderful windstorm that night, however, and I was able to take a very refreshing walk through the rain on the way home which revived me a bit.

The stuff can also cause pains in the joints and muscles- my oncologist described it as ‘feeling like you have been beat up’. I expected a bit of ache as though I had the flu, but was rather surprised by the reality- it wasn’t too bad, but it was enough to make me wince and limp!

All of this aside, I’m now on the downhill slope. Three more treatments and I’ll be done with this stage and on to the next. Three treatments doesn’t sound too bad- I can manage that. Somehow getting past this last treatment has made it so that the end feels much closer- I feel like I’m on the downhill slope now. Just a few more weeks, and those weeks are full of good stuff- my parents and brother are coming out to visit in a couple weeks, I’ve got time off for the holidays, and I’ve got a little trip out to the ocean this weekend.

I’m also (re)starting something I should have gone back to a long time ago- taking pictures. I used to love photography, but I allowed it to get sidelined, let it slip away. Now it seems like something that suits where I am- it doesn’t require a great concentration or focus, but it is something that requires awareness and mindfulness and encourages noticing one’s surroundings. I picked up a used camera last week and now I’m looking forward to playing a bit.

This is a bit of a rambling, unfocused entry, but that’s OK- I’m a bit rambling and unfocused right now. One opportunity that this experience has afforded me is the chance to practice being kind to myself- accepting that I have limitations right now and that they aren’t failings or flaws, but just the way things have to be right now. Difficult times are when we grow the most, and I do feel that I am becoming a stronger, healthier, and more resilient person through all of this. I won’t go so far as to say that I would have chosen to go through this, but I do feel that I will come out of it better than I went in.

Back from New York

David Poncelow — Wed, 29 Nov 2006 01:43:00 +0000

I got back from my New York trip on Saturday night- it went better than I could have hoped. This last round of chemo has been the best yet. It started with my blood counts: we had known since I started chemo that there was a possibility that I would be too prone to infection to be able to risk the plane trip. My oncologist recommended that we continue to plan for the trip, but understand that we might have to cancel at the last minute. It all hinged on my white blood cell counts. They came back in the midrange of normal. That’s not something I would have expected.

Then came the next surprise: on Friday, I had energy. I was still a little slow, yes, but the fatigue that I have come to expect for the first couple days wasn’t there. I was bouncing all over the place in anticipation for the trip. No nap, and I was ready to go to bed around 10pm.. normal time. That experience lasted the whole trip. I had one nap on Monday after walking around the Village with some friends, but they slept a while too. I went the rest of the week without so much as needing a nap. Most of the time I was almost wearing my girlfriend out.

It was a great time- my favorite thing to do in a new place is walk. I love seeing the different areas of a city, getting a feel for what the geography is like, how the neighborhoods fit together, the energy of the place. It’s kind of like looking over a new gadget the first time, seeing where the buttons and dials are before digging into how to really use it. New York is a great place to walk. Every day I walked and walked into new areas- through the Village, around Midtown, through Central Park, over the Brooklyn Bridge. I’m pretty sure that the 2 1/2 miles that I walked in the parade on Thanksgiving day was the least I walked on any of the days. I was so happy, so relieved- getting to walk like that was what I was most afraid I wouldn’t have energy for.

The Thanksgiving parade itself was a blast, though awfully wet and cold. I got to be one of the handlers on one of the Macy’s elf balloons- the red one. Being one of the very last balloons, most of the time was waiting in the staging area for our turn, talking and shivering. Once we got moving we had a great time. The reason I chose to do one of the elves is that they are small balloons, so we were able to play with them a little more- when the parade would stop (usually waiting for a performance in Harold Square or a commercial) we would sometimes run around in a circle to make the elf spin or wiggle the lines back and forth to make him dance. Again, I was _so_ glad to have the energy to do all of that- it was a great opportunity, and I would have been disappointed to have missed it.

Oh, and the food… wow. I’m wondering how much weight I’ve gained.

It seemed like a such a quick trip- New York is such a sprawling, chaotic, frenetic city that I feel like I got just the smallest taste. Now that I know just a little bit I’m looking forward to returning and digging a little deeper- going through some of the museums, seeing some theater. I’m sure that it won’t be too long before I’m heading back that direction.

Some more pictures

David Poncelow — Tue, 14 Nov 2006 07:06:00 +0000

I put some new pictures up on the flickr gallery - my dive buddy got a new camera and provided me the pics, so I’ve got some underwater shots of the last dive I did before I started chemo. There is also a shot of my new bald pate.

The hair is gone

David Poncelow — Fri, 10 Nov 2006 17:31:00 +0000

Well, I shaved off my hair and my beard a couple nights ago. I was just looking too much like Bill the Cat to keep going on that way- every morning in the shower more and more hair was coming out, leaving unsightly bald patches.

I didn’t expect for the change to bother me, but I found that it did. It wasn’t a problem with losing the hair itself- it was the feeling of a loss of control that bothered me. When I was washing my hair, every time I would touch my head my hand would be covered in hair and I couldn’t get it to stop. It wasn’t coming out fast enough to finish, but that constant flow of dropping hairs made me compelled to rinse it out one more time, bringing out yet more hair.

It really seemed symbolic of the way I have felt this last week, too- unbalanced, out of control, unstable. I’ve wandered around in a bit of a haze, discouraged, frustrated, and more than a little bit testy. I’ve felt needy and clingy, and have at the same time have actively pushed people away.

I’ve also noticed a great frustration with the disparity between the way I feel and the way I look. I don’t look particularly sick, so when I don’t feel well I feel as though nobody knows. I keep looking at myself as I imagine other people see me, and since I don’t imagine myself looking poorly, I have a hard time forgiving myself for my inability to behave ‘normally’. I imagine that this will work the other way, too- as I continue to lose my hair and look more and more like a ‘cancer patient’, I imagine that there will be times that I look really poor and feel quite well. It’s really the disparity I perceive that is disconcerting and a bit disturbing.

I’m feeling better about these things- it’s easier for me when I’m able to sort them out somewhat and figure out the causes and the sometimes mistaken assumptions. I can come up with ways of changing the way I feel about these problems, ways of viewing them differently and ways of taking responsibility for changing them. When I feel poorly, it’s OK to just say so- I understand that it’s not always apparent that I’m not doing well. Everyone I deal with every day knows what’s going on and is going to be understanding- I need to have the courtesy to be understanding of myself. The way that I appear physically, good or bad, is not really what matters.

Shaving my head feels empowering. While I still have a voice saying ‘isn’t that a bit extreme?’, I don’t have the frustration in the shower in the morning. I’ve acknowledged that it’s happening, and that I don’t have full control over it- it happens on it’s own time. Like so many things in this situation, I don’t have control over everything. But I do have control over the way that I deal with and approach my challenges.

Statistics

David Poncelow — Thu, 02 Nov 2006 21:43:00 +0000

I’ve been thinking a lot about statistics this past week. This cancer I’ve got is pretty uncommon, so I keep digging to try to find how uncommon it is, how unlikely that I ended up with this. The best I’ve found so far came from a study that my surgeon gave me a copy of. It’s a thirty year study, covering around 400,000 breast cancer cases. Of those, about 2000 are men, 22 under 35.

I also keep looking for statistics on my ‘chances’. I’ve found everywhere from 67% to 85% for my cancer and my stage. I’ve found graphs, charts, and mortality data. I’ve read many, many reports and study abstracts, and I’ve distilled it all down to what that data means to me.

Nothing. Absolutely nothing.

Statistics are wonderful things. When data is complex they allow us to find patterns and make intelligent decisions with incomplete data. Sometimes a graph or a table of aggregated data makes something obvious that never would have been otherwise. But that’s the key word - aggregated. This time, it’s just me.

When we read a book, we don’t look at likelihoods and chances. In a whodunnit we don’t try to calculate the odds that it was the butler, and when a character gets sick, we don’t try to figure out his chances. We may get agitated, scared or tense, but we wait for the story to unfold. By myself, I’m not a statistic. But I do have a story.

Numbers just can’t summarize me or describe this situation. They can’t tell the whole story. They don’t include my attitude, my health, my willingness and ability to heal. They can’t describe this particular cancer, my environment, all the people supporting me. It doesn’t matter if statistics say that I have an 85% chance- like it or not, there are plenty of stories in both sides of that number. Numbers can’t tell me what’s going to happen.

But trying to know what will happen is precisely why I find myself so obsessed with these statistics. When the doubt and fear descend, we cleave to whatever we can to try to reassure ourselves. Fortune tellers, throwing bones, ouija boards- all exist because we want to know what can’t be known, we want to have a glimpse into the future so that we don’t have to worry. We can obsess over statistics in the same sort of superstitious way. We know that a coin has even chances of coming up heads or tails, but the quarter that’s flipping through the air will come down only one way, and we have no idea of knowing which.

It’s reassuring for me to realize this - focussing on statistics reduces the way I view myself to a bunch of digits that don’t really apply to anything. Thinking of my experiences as a story that unfolds re-humanizes them, makes them real. There isn’t much room in a bunch of percentages for real life- for hope, disappointment, joy, humor. There is just doubt, and from that doubt, fear. I have no desire to suspend my joyful life for only uncertainty and anticipation.

I contribute to statistics, they don’t contribute to me. Aspects of my story can be abstracted, summarized and aggregated to find patterns that help scientists and doctors learn about this disease, but they don’t rule my fate. Whatever happens won’t be affected by the most recent study I can find with the most data. For me to know, I’m just going to have to be patient and let this story unfold.

Bone Scan

David Poncelow — Thu, 02 Nov 2006 18:38:02 +0000

I was able to borrow a friend’s scanner last night to scan in the image from my bone scan. I just put it up in the gallery (the link is on the righthand sidebar). I tried scanning the CT images as well, but they didn’t come out. I’ll try doing that another way in the next few days.

A week since the first treatment

David Poncelow — Thu, 26 Oct 2006 17:28:00 +0000

Well, it’s been a week since my first treatment, and I’m almost feeling normal again. It’s been interesting to see how I’ve responded - my understanding is that all of these things may get more intense, but this first treatment may serve as kind of a preview of things to come.

The overwhelming effect was just being tired. The day after chemo I was worthless, and through Tuesday I tired out really quickly. I’ve been trying to walk every day- running really is daunting and I’m not sure that I should do any real weight lifting as I don’t want to create more of a need for proteins and cell building materials than I already have. I’m OK with losing muscle, but I really want to exercise to keep my spirits up and my body feeling decent.

One bit that kind of surprised me was my food cravings- the first few days I had absolutely no appetite, but I woke up on Sunday with a powerful craving for rotisserie chicken. I haven’t had rotisserie chicken in some time, but I was determined to get it that afternoon. When I did pick one up I could barely make it home, and I’m afraid I must have made a spectacle of myself tearing into it.

My tastes have seemed to come back in the past week though, save that my appetite is greater. Even so I still had lost a few pounds when I went for my weekly blood draw yesterday.

I got my last checkup from the surgeon today- no more bandages. It was almost a little difficult- I’ve rather enjoyed talking with him and have felt well taken care of during the surgery portion of all this. Surprisingly, I’m thinking of the port surgery as having been an enjoyable experience. Bizarre, but actually fun.

So I’m up and going, not really hurting anywhere (save a bit of aching as my marrow kicks into overdrive), have my energy back, and I have a week before my next treatment. I’m doing well!