One year Cancer free!!!

Well, it’s been a long time since my last post and I think that’s a good thing!  It’s now been a year since I finished radiation treatment and was deemed ‘cancer free’.  I’ve been back for a number of PET scans, and still have to get poked and prodded once in a while, but things are so much better.

Physically I think I’m pretty much back to normal.  I have some reduced lung function which will likely stick with me, but it’s not enough to bother me unless I really exert myself.  I also recently had surgery to correct a severely deviated septum which has helped my breathing a lot.

The chemo has made me a sweaty mess, literally!  If I get even slightly hot I’m sweating buckets.  Not sure how or why but that’s the nature of chemo side effects; every one has a different reaction.

The dentist is still watching my teeth very closely.  I go in for cleanings every 3 months and use a Sonicare (love it BTW)  along with some powerful fluoride toothpaste.  The teeth have been much better, no pain, lessened thermal sensitivity.  However he did find a small cavity in the affected area on my last visit.  I haven’t had the appointment yet to fix it, but I think it’s just a little guy, hopefully nothing to worry about.

My radiation tan is completely gone.  I can still see the line on my cheek, but no one else does.  I’ve still got the chemo port in my chest, they say we need to wait a little longer before we take it out.  I barely notice it anymore unless it gets hit with something hard.

My job is going well, I’ll have been here a year next month.  If you recall from earlier posts, I got laid off weeks after finishing my radiation!

Once I make it to two years cancer free my odds of having a recurrence drop dramatically.  Half way there!

Civil Disobedience

I mentioned in one of my earlier posts that i got a ticket for no front plate the same day I got laid off.  I think this is the stupidest law ever, and I refuse to obey it.  Partially because I don’t want to devalue my car by punching holes in the bumper, partly because I think it looks terrible, and partly because I don’t think it serves any purpose other than revenue generation (more on that in a minute).  Most cops don’t even care to enforce it and I’ve been pulled over many times and I have not gotten a ticket or even a warning for it until now.

So the ticket is $154!  But if you go get it taken care of within 21 days they will dismiss it.  Now living in a big city, the government officials aren’t going to get out of their little bulletproof plexiglass fishbowls and go inspect your car.  This I know.  So you have to provide some sort of proof that you have indeed installed the font plate on the car.  All I did to get this dismissed was put suction cups on the plate,  stick it to my bumper, and take a cell phone picture of it.  That’s it.  I even did it while parked in front of the courthouse. Now here’s where things get annoying.

Once inside the courthouse, armed only with my ticket and cell phone pic, the fun began.  Step one, I wait in line.  Talk to lady at counter, showed her the ticket.  She looked annoyed and typed a lot into the computer.  Soon the printer started spitting out my next instructions and I’m told by the angry lady to take all the paperwork and go up to the third floor to see the judge.  Upon arriving at the ‘courtroom’ (really just an empty room full of old folding chairs and tables)  I handed my paperwork over to the bailiff and was instructed to sit.  After sitting for exactly 3 seconds (I was the only one there) I was called up to the ‘Jr. DA’ or something similar.  She reviewed my case and looked at my cell phone picture.  Apparently that was enough proof for her and she told me she’d recommended that the judge dismiss the case based on compliance (HA!).  Then I’m told to go sit again and just as my butt hits the seat the judge calls me up.  As expected, he dismissed the case and I’m done!  Right?  Wrong.  Now I had to pay an administrative fee of $10.  Then I waited in another line and met another angry woman in a fishbowl who scowled at my paperwork, approved it,  then sent me to another angry lady in the next fishbowl down.  Finally she’s willing to take my money and give me a receipt saying my case is dismissed.  All told, it took maybe an hour of my time.

Now lets look at all the personnel involved in this transaction:

-Cops (two in the car that pulled me over, and two in the second car that pulled up to make sure the first could handle this tough call, and at least three when I went through security at the courthouse)

-Angry ladies in fishbowls = 3

-Bailiffs = 3

-Judge

-’Jr.DA’

So we’ve got a minimum of 15 government employees that attempted to enforce a $154 ticket and ended up getting $10.  These are our tax dollars at work.

The fact that it was so easy to thwart the system also shows me that the law is not in place to ensure that the car has proper registration, it’s there for revenue generation.  It’s not as easy to dismiss a ticket for no rear plate, or no inspection sticker, or no front registration sticker.  All of those laws make sense to me and are enforced in a manner in which indicates their necessity.

When I was done, I took the plate off and drove home. Oh, and I didn’t have enough change for the parking meter, so I didn’t pay that either.

Dallas’ finest make my day

I didn’t mention this the other day because I didn’t think it would be a big deal.  On the way home from the pharmacy Wednesday (the day I got laid off), I got pulled over by an unmarked Dallas cop for having no front license plate.  I’ve been living in Dallas for almost six years now and I’ve never had a front plate on any of the three vehicles I’ve owned in that time.  I’m perfectly aware that it’s illegal, but I refuse to comply because it’s a stupid law, and because I don’t want to put holes in my front bumper to mount an ugly Texas license plate.  The cop indicated at the time that I could fix it, take a picture of it, and send it in within 5 days to get it dismissed.  So I thought, no big deal.  Wrong.  After spending the better part of 45 minutes searching the City of Dallas website, I was unable to find the fine amount or the instructions for how to get it dismissed.  Then after waiting on hold for 20 minutes, I’m told that I have to take the car in and have it looked at and then the judge will dismiss it.   But you can only do this on Wednesday between 1pm and 4pm.  It’s a good thing I don’t have a job or I’d have to take off for this bureaucratic nonsense.  If I don’t do this, it’s a $154 fine.  It’s a sad state of affairs when the police need money so badly that they have to go to these lengths to attempt generate revenue.  Even if I did pay it they would probably only break even.  When I go in a get it dismissed, they’ll get nothing and it will have cost all of us taxpayers for the time of 2 cops, the use of 1 cop car, and at least one judge.  For a front license plate.

Instead of going to the dealer and buying a license plate and punching holes in my bumper, I’ll make some little brackets out of angle aluminum and zip tie them on.  As soon as I get out of the parking lot of the city court the zip ties come off.  If they want to enforce pointless laws using my tax dollars, I’m not going to let them fine me as well, and neither am I going to blindly comply.

when life gives you lemons…..

…you’ve got a lot of lemons that you could make lemonade with and sell in a healthy free-market economy to make a living.  But alas,  there is no economy to buy our lemonade.  We just have a bunch of worthless fruit that will be a rotting stinky pile in a few weeks.  Why can’t life just give me something I can actually use?

Boooooo

Enough metaphors and rhetorical questions; I was laid off this morning.   I’m pretty disappointed because I actually liked this job and it’s been very hard for me to find a company that I liked.  I liked all the people I worked with and the work I was doing.  They were also very accommodating during my cancer, which is rare and very very appreciated.  Mine was the third round of layoffs in a couple months.  The engineering staff went from seventeen when I started to seven as of today. Ultimately I fear the company will be doomed as the sole proprietor sold to an investment firm just before all the layoffs started happening.  It’s looking more and more like they’re just trying to break it apart and sell it off.  Money talks, the customers don’t have any money and we’re all out of talk with which to silence the investors.  Every week that sales don’t meet the goals more people get laid off.  This practice seems very counter-productive and I can only imagine what the rest of my ex-co-workers will have to face in the coming weeks and months.  I expect it will be more of the same, and they were already understaffed after the first two rounds of layoffs.  Without the necessary personnel the company will cease to exist.  I wasn’t a ‘necessary’ employee for the company to operate, but if there are no engineers, the shop won’t have anything to build and there will be nothing to sell even if someone were buying.  The downward spiral has begun to suck it in like a black hole.   Once you realize you’ve reached the event horizon, it’s too late to turn around. I worked there for 13 months which seems to be the longest I can keep a job without something bad happening.  I’m tired of looking for jobs.  I hate it so much.

I’ve tried very hard to stay upbeat and positive but I want to take a moment to revel in self-pity as I review the last year and a half.  I have:

Left a terrible job for a better job and more pay ++

Got married++++

Got two dogs++

Lost one dog to cancer –

I got cancer –

Got a puppy ++

My parents split up–

Got laid off–

As you can see, it’s bad, but not all bad.  In fact, I’m glad I just did that.  It makes things a little less terrible.  The negatives were some pretty big ones, granted, but getting married was also monumental.  I’m sure Elaine didn’t expect our first year to be this hard.  I sure didn’t.  I guess I’ll keep chugging along, taking the bad and the good and hoping not to be overrun by the bad.

On the cancer front my nuclear sunburn is healing and has almost completely peeled.  It was very strange, exactly like getting a sunburn VERY slowly over the course of weeks.  It took a week or more to become visible.  It continued reddening over two weeks and then it started to tan, just like a sunburn.  The ‘burn’ felt exactly like a sunburn too.  It was itchy at first, like you’ve just come out of the sun and know you’ve gotten burned even though you can’t see it.  Then the sunburn gets red, itches, and hurts when you stretch the skin.  After the redness peaks the skin begins to tan.  For me the resulting tan was dark brown, thick, and rough to the touch.  Now it’s started to peel off and show new pink skin underneath it.  My (little) facial hair has still not tried to grow back in the irradiated area.  It doesn’t hurt anymore and I can turn my head normally without looking like my head is fixed in place atop my neck.  The mouth sores are almost completely healed.  I still can’t use the right side of my mouth to eat though, and my teeth are VERY sensitive.  I’m going to need to go to the dentist soon.

*big sigh*

I’m done!!!!!!!

I’m finally done with radiation therapy!    It’s been 20 treatments over almost a month and I was so ready to be done with it.  If all goes well, this will be the last of the cancer treatments for me.  There’s always a chance it could come back at some time in the future, but the doctors will be following up with me on a regular basis to monitor my status.  I see the radiation oncologist again in a month, and I’ll probably be going to see the regular oncologist in a month or two.  I’ll probably be having another scan sometime after that, and every few months after that.

Did I mention that I’m glad to be done with this?!???  All-in-all I think radiation was worse than chemo.  Having to go every day wears on your psyche.  Twenty treatments doesn’t sound like a lot, but it sure felt like a lot.  You’re at the hospital so often you get to know a lot of the staff and that’s a scary feeling to me.  As far as side effects, I didn’t have the fatigue with radiation that I did with chemo nor did I have the severe constipation.  But I did have more mouth sores, very sore and sensitive teeth, a killer radiation burn (thats now peeling, gross), and a host of other maladies.

I’m so lucky it wasn’t harder than it was.  It wasn’t easy and it wasn’t fun, but I know lots of people have it worse off.

All somber thoughts aside, here are some pics of the torture chamb…er…radiation therapy room.  The big machine is what shoots the radiation.  It come out of the area just above my face.  They tilt the machine 10 degrees to help miss my spinal cord.  After it shoots me from the front (as shown), it spins around and shoots me from the back.  As I’ve mentioned before, your head and shoulders are completely immobilized and you have to keep the rest of your body perfectly still during the whole process.

T-minus 4…3…2…1…

Four radiation treatments left and I’m soooo ready for it to be over.  The burn is a lot worse now and itches constantly.  I’ve been putting the cream on it religiously but the skin still seems to be hardening up and tanning pretty badly.  The doc said it will go away with time, I just don’t know how long he means.

The hair is getting much thicker and is probably almost ready to start growing.  I’m keeping it short now because it’s not totally filled in and will look funny if I let it go now.

Things are a little better than the last time I posted, but cancer causes a lot more problems than just the physical illness and those are the effects I’m dealing with now.  It’s very unpleasant.  I think I’d take chemo over this any day.

Looks like some kind of bizarre tanning accident.....

Anyway, here are some new pics of my rockin’ tan.

Nuclear sunburn & Hair musings Part 2: The Return

I’m almost done.  So close.  I have nine more radiation treatments to go and I’ll be really glad  when I’m finished with it.  The side effects are more severe than I anticipated in many ways.  I’ve talked to several people having radiation on other body parts and it seems that the face/neck/head area is the most sensitive area.  The radiation is very precisely focused so as to minimize damage to surrounding tissue.  Unfortunately the technology isn’t yet available (at this hospital) to focus the beam in three dimensions so the damage to surrounding tissue is still an issue as the beam is essentially exposing a squarish area from the front and back of the body.

Treatments are completely customized for each patient and it took several ‘marking’ sessions to complete the alignment process.  The first was just another CT scan so that they can determine the area they want to treat and the direction they want to treat it from.   The second marking session wasn’t as easy as the first.  They told me they were going to make a mask that they could put marks on to help align the beam.  Nothing about that sounds bad.  I can handle a mask, right?  They had me lay down on a treatment table with a formed plastic piece holding my neck in position.  Then they placed a hot, wet, plastic sheet (with small holes in it) over my face and pushed it down into position.  Then THEY LOCKED IT TO THE TABLE.  The panic didn’t really set in until the plastic began to cool, harden, and contract.  Suddenly I’m attached to the table via my head.  It’s so tight that I can see my heartbeat in my cheeks which are squeezed up around my eyes.  I can’t move my head AT ALL.  It took some serious breathing activities to make it through that.  After the mask hardened they took some x-rays and made some marks on the mask.  They also gave me my first tattoo!    It’s a small dot on the center of my chest.  It looks like a tiny black mole from more than a few inches away, but it’s still a tattoo!

Each treatment session consists of me laying on the table and getting locked down by my mask while the nurses use lasers to precisely align my body with the table and my head with the beam.  After the nurses go out of the room the machine moves over my head and buzzes a few times.  Then it spins around underneath me and does the same thing.  The whole process only takes 10-15 minutes and is totally painless.  The aftermath isn’t painless but it’s not immediate or acute, it just sneaks up on you slowly.  I get treated from just above the bottom of my nose to the middle of my chest at an angle of 10deg from straight ahead.  This is intended to miss my windpipe and spinal cord but may cause some damage to the top lobe of my right lung.  I don’t think they actually missed the esophagus because I have a constant sore throat.   The most obvious effect I’ve had is the ‘nuclear sunburn’ (my words, not based on actual science, it just sounds cool).  This is what it currently looks like:

Notice the nice line from the bottom of my ear to my mouth.

The top is very well defined, but the bottom of the treatment area isn’t as obvious in this photo.

I don’t know the exact dose I’m receiving but the doctor described it at mid to high level dose.  I would have liked a more specific answer.  Anyway, I’m about done with it and the effects should wear off within a week or two after cessation of treatment.  The chemo will affect me long after the radiation damage wears off.

hair musings part two: the return

My hair has begun to grow back!  I’m disappointed to have to shave my face again but at least I can cut my hair with clippers instead of shaving it with a blade.  It was very sparse at first so I haven’t let it grow very long before I buzz it, but it seems to be filling out more all the time.  I even have a hairline now!  Oddly, I continued to lose my hair long after chemo was over, and even more strangely the last of the hair loss had not stopped before some hairs started to grow back.  My armpit hairs were the last to fall out except for some leg hairs that weren’t in ‘high wear’ areas.  The first hairs to come back were my nose hairs and they’re back as strong as ever! I never completely lost my eyebrows or eyelashes but they got very sparce.

Click for a larger view, it's there I promise

All in all, things are better than they were a few weeks ago, so lets hope that things continue to look up.

Tales of Radioactive Man

I haven’t posted in forever because I keep hoping to have something positive to post about but it just hasn’t happened that way.

I’ve started radiation therapy now.  I will have a total of 20 treatments every day except weekends and holidays.  So far I’ve had seven.  According to the literature and the doctor, I shouldn’t have many side effects but I feel like crap.  I have a sore throat and just about everything on that side of my face hurts.  I have some sores in my mouth and my gums and teeth are super sensitive.  I think I underestimated how severe the side effects would be.  I breezed through chemo fairly easily; at least this won’t last for as long.

Unfortunately cancer doesn’t just affect your health.  I’m now starting to have to deal with the other areas of impact.  Even with insurance cancer is expensive.  Without insurance I don’t know how you would do it.  One of the shots I received during chemo was $11,000 for a 100mg dose.  That comes out to $50 million dollars per pound of product.  I had three doses of that.  The PET/CT scans are about $8,000 each and I’ve had two of those.  I don’t know how much the radiation is going to be.  My part of the bills is manageable but has come at a very bad time for us financially.    Another thing cancer affects is your relationships with family and friends.  Sometimes this is positive and sometimes it is negative.  I’ve definitely found out who really cares about me and who’s just going through the motions.  As a previously [somewhat] active and healthy individual it’s been hard for me to adjust to not having the same energy I did before.  It’s even harder trying to get it back without over-doing it.  I feel as though I’m way behind at work and on chores around the house but as much as it bothers me, I can only do as much as my body will let me.

I wish I had more positive things to say, but I don’t feel very positive.  I thought the hard part was over, but I was wrong.

news from the doctor

I hope everyone had a good Thanksgiving.  Elaine made a huge amount of yummy food and we ate a lot and slept.  Not a bad day, all in all.

We went ot the doctor on Wednesday for our post PET scan consultation.  As expected he told us that the scan hadn’t shown anything of note.  He wants to do some radiation therapy over the next few weeks.  We weren’t really expecting to have to do that after the nurse had assured us that the doctor had misspoken when he previously mentionted it, but I guess she was wrong.  Apparently in cases like mine there are two alternate schools of thoughts regarding therapy.  The ‘old’ way was to do 6 rounds of CHOP-R.  The ‘new’ way is to do 3 cycles of chopper and radiation.  The stats show slightly better results with the latter method, and although likely not statistically significant, the radiation route is much easier on the patient while producing the same results.  I’ll probably begin radiation early next week and last I heard I’ll probably do it for something like 17 days in a row.  It doesn’t take long to complete each treatment, but it’s going to be inconvenient to go to the hospital every day.  Side effects are (I’m told) not too bad, but I haven’t done my own research.  Anyway, I guess it is what it is.  La-dee-dah.

Cancer free and feeling eh….ok

Great news!  I had my PET/CT scan last Thursday and they called with preliminary results on Friday.  The scan didn’t show any traces of cancer.  We have to go in for an appointment next week to discuss what all this means, and what the course of action will be.  Here’s my understanding of what they’re likely to tell us…

The PET/CT has a limited resolution.  There is probably (certainly?) cancer still in my body.  It’s not possible to say that someone is ‘cured’ of cancer because there’s no way to know that every single cancerous cell is dead.  What the scan tells us is that there are no actively growing (metabolizing) sites (tumors).  This means that the advance of the cancer was halted and that previous growth has receded to a point that it is undetectable with non-invasive means.  I will have to go back in for another PET/CT scan in 3 months to make sure that the cancerous cells that remained haven’t managed to gather the strength for another attack.  They might never.  Or, someday, out of the blue for no apparent reason they could gain a foothold again and try for a comeback tour.  We’ll probably continue to get scans every 3 months for a year or so, and if all is going well, they’ll begin to move the interval out to 4 months and so on.

I know I should be feeling really good about this but for some reason I’m not.  We had originally planned to celebrate tonight and now I just don’t feel like it.  For one thing I don’t physically feel better yet, and I probably won’t for several months.  I’m still losing more hair all the time, my eyelashes and eyebrows are still going fast…getting really spotty.  My legs look poorly shaven with small patches of hair here and there.  The hair loss will slow and halt and eventually it’ll start to grow back, but this is going to take quite a bit of time.  My fingers are still very numb on the tips, and I’m very short on energy.  I still don’t feel like I’m rebounded from the last chemo to a normal ‘between chemos’ level of energy despite it having been almost 4 weeks ago.  I know all this will all slowly go away, but that’s just not enough to get me excited right now.  Not having to go to chemo again sounds good, but that wasn’t really that bad (the after effects were though).  It will be nice to start feeling better, and I look forward to that but my body and mind are really worn down at this point.

Cancer doesn’t only effect your health, it affects everything else.  Those effects also don’t go away instantly and I feel like I have a lot of rebuilding to do in my life as well as on my body.  Everything got put on hold, some things fell apart completely.  None of it will be easy to fix and I’d be lying if I said I was ready to get to work at it.

I also feel guilty on many levels for having the feelings I’m having.  On the same day I was diagnosed as ‘cancer free’ a co-worker’s sister died from cancer.  Not every ending is a good one and I know I had it VERY EASY compared to many.  I feel guilty for bitching about it but even my path was hard and I need to vent.

I’ll continue to post here as the days and weeks roll by.  I’ve felt well enough the last few weeks to build a robot with a friend of mine.  We entered it in our first competition today and did pretty darn well.  Look for more on that in the next few days.  I’ll probably start converting this blog to more coverage of my projects and other goings on in my life as the cancer (hopefully) continues to wind down.  It’s amazing to think that I’ve gotten over 5,000 hits on this site since it’s inception and the top post has nearly 200 unique reads alone.  Thanks for all the support and love!