Z80 - The Diagnosis Is Not Consistent With The Gender of the Patient: Tag 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.

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.

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.

Details on my upcoming chemotherapy

David Poncelow — Mon, 16 Oct 2006 20:20:00 +0000

OK, so here’s the full deal. Early Friday morning (early being 8ish) I had a CT scan done on my chest and liver. The CT machine looked like a big futuristic donut with a bed that fit inside - I laid down on the table and the technician made me comfortable and started an I.V. Once that was going she called Jim from nuclear medicine over to give me the radiation tracer for the bone scan I would get later.

I got one pass from the machine as a baseline- the donut began to move and a recorded voice said ‘Breathe’. A moment later it said ‘Hold your breath’ and the donut moved across the area they were scanning. The technician came back over (I wish I had caught her name, but well, it was early) and got ready for the real scan. During this portion there is a tracer that is injected during the scan under pressure. She got everything set up, hooked the hose up to my IV and started the scan. Almost immediately the cap on the hose gave way, spraying a clear sticky fluid all over me. She stopped the scan and frantically stopped the machine that was pumping the tracer that was now spraying all over. She apologized profusely and we laughed about it and then she cleaned me up and replaced the part that had burst. Everything started back up, I got a few more scans by the donut and was sent on my way.

I met with Dr. Garnett a little later about my port. The port is a little metal disc, probably an inch in diameter and half an inch thick that will be placed in my chest right below my clavicle on the right side of my chest. In the center of this disc is a pocket of a silicone-like substance that surrounds a small reservoir. A small hose leads off of the disc- this hose will be placed into my subclavian vein and fed down to just above my heart. A needle can then be inserted into the silicone center and injections given effectively directly into my heart.

When I’m receiving my chemo (and having blood drawn) everyone will use this port instead of IVs and needles in my arm. The main reason for this other than convenience is that the chemo drugs are very hard on veins. If they were injected normally they would have to find their way all the way up through the arm before getting distributed to the rest of the body, causing damage as it works it’s way through. With the port the medicine goes directly into the heart which mixes it all up and sends it packing through the body.

After I met with Dr. Garnett I went back to Jim in nuclear medicine for my bone scan. I had met Jim before my surgery when I was getting the radioactive tracer pumped in for the sentinel node biopsy. He’s a great guy, really willing to put up with my incessant questions. The injection he had given me before my CT scan was a radioactive material bonded to a phosphorous compound. The bones pick up this compound as they use it for building and maintaining themselves. During the course of the morning all of my bones had been picking up this phosphorous compound along with the bonded radioactive material. He led me into the scanning room, and as I walked by a shelf there was a loud buzzing noise. Jim looked over, turned off the gadget that was making the noise and said ‘sorry, forgot to turn the geiger counter off’.

He put me on a bed underneath a ‘gamma camera’. This looks like a big disc, around two and a half feet across and a foot thick set up to be moved around into whatever position is required. Jim positioned the camera into place, put me where he needed me and then asked me to stay still. The gamma camera picks up the gamma rays emitted from the radioactive material that was now in my bones. Basically, I was glowing and it was getting the picture of what glowed. Each picture took about three minutes, during which my job was to stay as still as possible.

The pictures that result are pretty amazing- they are very clear images of just the bones. There’s enough glow to the skin around that you get some context, but the bones themselves are very solid and easy to see. What they look for in these pictures are bright spots. When a bone is healing or changing, it’s picking up more of the resources it needs- in this test it ends up picking up more of the radioactive tracer. When we got to the scan of my legs Jim asked me how long I’ve been running- the front edge of my shins was noticeably brighter than the rest of the bones. On the right shin there was also a bright spot in the middle of the bone- probably a stress fracture that I didn’t know about. Just to be sure, Jim took a couple extra pictures from different angles. The whole test took about two hours, most of it spent just chatting with Jim. He was kind enough to give me a copy of all the pictures that he took- I’ll try to figure out how to get them scanned in so I can show them off.

Tuesday I will go back to see Jim for a MUGA test. This is somewhat similar to the bone test in that a chemical which will bond to red blood cells will be injected into me. After a while the same radioactive substance used into the bone scan will also be injected. The radioactive material then binds to the first substance. The result is that my blood will then be glowing. I’ll get back underneath the gamma camera and I’ll get pictures of how well my heart actually moves blood around. This is mostly a precaution- it may catch some heart problems I could have now, but mostly it gives a frame of reference in case something changes. A couple of the drugs I will be taking have a potential side effect of serious heart damage. This test allows us to check back to see if anything changes.

Wednesday morning at 11 I head back over to the outpatient surgery area at Swedish to have my port placed. Dr. Garnett will do it under local anaesthesia, though I’ll have an anesthesiologist there to make sure that I’m not paying attention too closely. I keep thinking of the ‘relaxant’ that I was given directly before my surgery last time- the anesthesiologist looked at me and said ‘I’m going to give you a little something to relax’, opened a little valve, and the world around me got really soft really quickly and I started slurring my words mid-sentence. ‘Relaxed’ is a pretty substantial understatement for the state I suddenly found myself in. So I’m not too worried that I’ll be anxious during the surgery. Anxious before then… well yes, I have to say that I am.

Thursday is when the chemotherapy actually starts. Dr. Garnett will leave my port ‘accessed’ on Wed- basically he’s going to leave a needle already in it (covered with a bandage) so that I won’t need to be stuck when the incisions are so fresh. I know that it should take me a couple hours, but other than that I’m not really sure what to expect. I’ll be getting chemo treatments every two weeks for sixteen weeks - the first 4 weeks will be a cocktail of Adriamycin and Cytoxan. Apparently these are the nastiest drugs I’ll get, so the first four weeks may be the worst. The next twelve weeks I’ll be taking Taxol.

After the chemo is done I’ll be doing radiation- I’m not sure for how long or how often. I’ll also start on the hormone treatment (Tamoxifen) and the Herceptin. The Herceptin is injected- I’ll go in for that every three weeks for a year. The Tamoxifen is an oral med- I’ll take that daily for five years or so.

I’ve got a busy week coming up, and then I get to settle into the chemo itself. I’m excited to be starting on this - it felt as though there was a lot of frantic action after the diagnosis and then a loooong couple weeks of waiting. The waiting is over and it’s time to get started again.

Tube's Out!

David Poncelow — Sat, 07 Oct 2006 00:11:00 +0000

I finally got my lymph tube out today- this makes me very happy! I’ll be able to take the bandage covering the hole off tomorrow morning- that will be the first time I’m bandage and accoutrement free since the surgery. Stretching out the arm is going well, and everything is starting to feel more normal. Where my nipple used to be now feels something like a limb does when it falls asleep, just a little numb and foreign, not sore or painful. The skin on the inside of my arm is still over-sensitive to being touched, but that’s also improving. Overall I’m quite happy with my progress! Now I’m about ready for the next steps- I’ll find out what exactly those will be on Thursday.

Friday's Appointment

David Poncelow — Mon, 02 Oct 2006 13:29:00 +0000

I had another appointment with my surgeon on Friday- not much new information this time around. I got my bandages off- they were these rather cool plastic bandages that pretty much just looked like package tape over the incisions. I figured that since they were designed to stay together for over a week there must be some special way of removing them, a solvent that made them float off, something of that sort. Not so much. Dr. Garnett simply said ‘sorry’ and ripped them off. It didn’t really hurt, but the low-tech technique did make me laugh! Overall I’m healing as well as can be expected. The scar looks to be very minimal and the difference between sides won’t be too noticible from the front or the side- it’s most noticible from the top as I see it, which few other people will notice. I got some new bandages that I thought were pretty nifty- an adhesive was painted onto the wounds and then some tape was applied. Eventually the adhesive will dissolve in the shower and the tape will just start falling off. I’m constantly impressed by the nifty ideas and gadgets that I’m encountering.

I didn’t get my tube out yet- I’m still putting out too much lymph fluid. My next opportunity to get it out is Friday. I am looking forward to it, but I’ve figured out that if I wrap an ace bandage around my chest to keep it in place it doesn’t bother nearly as much. Likewise I’ve found that the wrapping up my arm keeps the super-sensitive skin on the inside of my arm from bothering me too much, particularly at night. As a result I’m looking more bandaged now than I did before I got the bandages off. I’m a lot more comfortable now, though!

I also got my arm-stretching exercises on Friday, just as Mom described- crawling up the wall with my fingers until I feel a good stretch and then holding it there for a while. I can already reach about a foot above my head, so I feel like I’m making pretty good progress. The more I stretch the less my arm bothers me, so I’m practicing pretty often. As Aunt Stacy’s suggested my arm has gone into ‘most-favored limb status’- I’m learning to keep it more protected than I used to, but I’m also babying it less, making myself use it rather than keeping it rigidly at my side.

I won’t know much more until my meeting with my new oncologist, now scheduled for the morning of the 12th. Hopefully I will get some sort of schedule for treatment out of that appointment and know what sort of treatments I’m in for. I have no idea if everything is going to be concurrent or if it’s going to be sequential- I should be getting a whole barrage of treatments. I did also find out that this cancer is HER2 receptive, which gives me access to another medication that is apparently quite effective.

Back to work on the day after tomorrow! I think I’m about ready. I’m already pretty active, so I don’t think that it should be much of a problem at all.

Home Again

David Poncelow — Thu, 21 Sep 2006 14:45:00 +0000

Well, I got through surgery yesterday and am home now. I’m feeling pretty good, no real pain to speak of. I’m still pretty drugged, not too sure how much sense I’m actually making. I did end up losing the lymph nodes- I guess they were involved. Now I’ve got a plastic grenade-shaped container hooked up to a tube going into my side that’s draining off the lymph fluids and blood from the surgery. I don’t know a whole lot at the moment, and I keep seeming to forget what I do know! I’m sure my mind will be clearer tomorrow, and I should have the full results back from the surgery at the beginning of next week.

And now, perhaps another movie!