Friday, October 25, 2013

Halfway there.

Beautiful morning in Boston


I don't have much to write about, which is a good thing, but I figured since I hadn't updated since I started treatment that I would do a quick check in now that I'm at the halfway point.

"How are you feeling?" Gets the award for most asked question on a daily basis. Answer: "Fine. Good. Normal. Great." No really. So far I am experiencing none of the side effects (well one but I'll get to that in a minute) that they told me I would. No fatigue, nausea, headaches (yay no steroids!), I'm knocking on wood as I type this since I still have three weeks to go and all those things are still possible, but so far so good. Even my labs are healthy person-not-taking-chemo perfect. Biggest side effect of feeling good? Boredom. I don't like to watch TV during the day (except for Ellen). I don't exactly have money to go shopping all the time...and I don't need anything anyways. My friends that are in the area have normal people 9-5 jobs (but I have been able to get lunch with some in Boston after my treatments so if anyone wants to get lunch I'm free) or they live a few hours away. So I'm left to entertain myself and I don't find myself very entertaining most days. Still getting my hour of exercise in a day, it's starting to get cold though and I hate running indoors so I might have to go get some warmer clothes since I didn't bring enough home. Also reading. A lot. I just finished the Wicked Years series and highly recommend it. The first book Wicked: The Life and Times of the Wicked Witch of the West I'm sure you've all heard of (musical is based on it) but it has three additional books which I highly recommend if you don't mind a little darker (ok a lot darker) of an OZ than is portrayed in the movie. Side note, the books are long, 400-600 pages, read best if you have a lot of free time on your hands like me :-)

So on to my one side effect that has kicked in, my scalp feels like a constant mild to moderate sunburn and my hair has started falling out. Started on Tuesday of this week. For those of you who know me well you know my biggest phobia is wet hair not attached to a head. I have PTSD from a childhood spent in public pools. My showers all week have consisted of me silently screaming to myself "get it off get it off!" While simultaneously trying not to gag and actually make it out of the shower clean. And I am in the early stages of hair loss. I can guarantee it's not going to last long because I will shave it soon and solve that problem. It's a challenging situation because unlike with traditional chemo where people loose all their hair I will only loose mine where I'm getting radiation. It will be more hair though than what was shaved off for my first surgery and being that it's all in front that would make for a really awkward mullet for who knows how long. So I think I will shave it and keep the remaining hair buzzed and then once it starts growing in again (could take 3-6 months) give it a chance to all come in one length. I will probably get a wig since insurance will cover part of it but how often I will really wear it who knows, I'm not a very high maintenance person but it might be nice for holidays and going out (because I go out SO often). And there is a perk to this. I have greasy hair, I have tried countless shampoos and products to combat this and have been unsuccessful so I typically just wash it every morning. In the winter though if I shower in the morning I risk having my hair freeze while waiting for the shuttle before work, and I refuse to wake up 20 minutes earlier to blow dry it so this winter I get to shower at night and sleep in an extra 10 minutes in the morning. Win - win situation I think.

So that's the update for now. I'm hoping things stay this smooth and my next update comes when I'm done...maybe I'll throw in a post about the head shaving when that happens.

Thanks again for checking in!

Friday, October 11, 2013

Week one down!

Today finished my first full week of chemo + radiation. For those of us counting (me) that's seven radiation treatments and nine days of chemo completed. So far so good! I've had no side effects yet...I'm told they'll probably start around weeks 2-4 but who knows and I'm not too concerned about it. My days this week pretty much revolved around driving to/from MGH, getting radiated and going to the gym or biking/running. My goal is to get at least a good hour of exercise in every day for as long as possible. It helps me keep my sanity.

I asked one of the techs today to take a picture of me in my headgear - that's what I call it anyways, it probably as a more technical name. So here's the pics and I'll explain them:

Rockin' my Dr. Bear garb this morning
So this is my headgear. There's two main parts. The frame and mouth piece are attached, this goes over my head and I bite down on the mouth piece - much like a mouth guard. The white part is a cushion which was also molded specifically for my head, that goes in the back. Then velcro straps meet in the top center and are pulled very tight so the whole thing is secured to my head. It is not painful but it is very very tight.


Medieval torture device...or modern medical technology at it's finest?
This is the table that I lie on. I climb up the stairs, slide through the tunnel and then my head frame is literally bolted down to the table on the right side of the machine. Once it's bolted down I wouldn't be able to get out of there if the place was burning down around me. I can actually barely move my mouth/jaw enough to swallow. Once my head is bolted down they add a bunch of cushions and straps at my sides, under my arms, across my chest, waist and around my legs to strap me to the table so that when it rotates I can't fall off. If you look at the right upper part of the picture there are two circular...things (maybe one day I'll actually find out what everything is called). This is where the proton beam comes out. Since that part is stationary the rest of the machine swivels and rotates around it to get my head in the right position. There is a shiny plastic box on the ceiling...I think it has something to do with the x-rays since it lights up when they take x-rays (an x-ray is taken before every treatment to make sure I'm in the right spot). Anyways I can see a slight reflection in it and in that way I can see what part of my head is being radiated in each treatment. Each day I do 2-3 treatments and from what I've noticed this week it seems like they're hitting me from 5-6 different spots so every day they do a different area. I only have to be rotated when they radiate through my upper forehead (which requires me to be facing the proton beam) so on the days they don't do that area I don't have to have my whole body strapped in. Whole thing takes about 20 minutes from start to finish...and about 90 minutes in the car.

So that's the rundown on what I'm up to every morning for the next 5 weeks. There's no radiation on holidays (go figure) so I have this Monday off (not from chemo though). I am headed out to Amherst for the long weekend to enjoy the peak of fall foliage and a mini UMASS regatta. Thanks for checking in!

Thursday, October 3, 2013

1 Down, 32 to Go

Today was my first radiation/chemo combo. I take my chemo an hour before radiation and I can't eat for two hours before chemo. So today my radiation was scheduled for 2:30. I got up and had breakfast this morning, took a 10 am yoga class then got home and shoved down some brunch before my 11:30 NPO time.

So far so good. Radiation was quick, they took me right in when I got there (note to self: no matter how on time or behind time they are, ALWAYS pee before being strapped down to a revolving table for 20 minutes...I should know this from my MRI's but didn't think of it). The techs running the machine were very nice and not at all weirded out when I told them I've been listening to the Wicked soundtrack for the last month and if they had that to listen to it would be great. Unfortunately they couldn't find their CD (told me they would find it but I don't think I need to listen to that every day!) but they put it on Pandora...so I got some Wicked and a variety of other show tunes but ended the treatment with "Defying Gravity" which I think was fitting.

At some point I'll ask them to take a picture of me all strapped into the contraption. The proton beam is stationary so besides the headgear that is bolted to the table my body is also strapped down so they can rotate me around the proton beam. One of my treatments (I did three treatments...or positions) requires me to be at about a 45 degree angle facing the beam so I'm strapped in but kind of hanging there. The actual treatment times were probably 2-3 minutes but took them 5-10 minutes to set up each position.

I'm hoping my treatment times can be a little earlier next week since 3-3:30 is a terrible time to try to drive home from Boston. Definitely spent more time in the car than at the hospital.

And no side effects yet, hoping to keep those to a minimum. There's a good chance I'll have to go back on steroids for a few weeks due to brain swelling from the radiation, and my hair will fall out in the affected areas around week 2-3 (my chemo does not cause hair loss so it will only be local to radiated areas). I haven't decided what I'll do with the hair yet, whether I can get by with a comb over or just go ahead and buzz it all off. If it's significant I don't think I can pull off the half shaved Miley Cyrus look and I'd rather give it a chance to all grow at the same time.

I will be getting a total of 33 treatments + taking chemo on the weekends so its a total of 49 days, I should be done November 20th (two Monday holidays pushing that back). Seems like a long ways away but I am ready to just plow through and get it done!