Thursday, February 20, 2014

Almost Halfway

I know it's been a while but with being back at work and back to life I don't have much to say here.
This week I had an MRI and appointment with my doctors. My MRI looks great and my doctors are happy with how well I am doing. This week starts my third (of six) round of chemo. So far it has been tolerable. It's a much higher dose than I was getting back in the fall with radiation so I have side effects but all are manageable. The two main ones are loss of appetite (which, no worries, comes back very quickly a day or two after chemo is over) and fatigue. All in all I really can't complain about a couple days spent on the couch. The other thing my doctors are watching are my platelets (cells in your blood that help form blood clots) that are starting to get a little too low for comfort but not low enough yet that we would have to decrease my chemo dose. But because of that there will be no winter olympic type sports for me for the rest of this year.  :)

We're also starting to get into that "event" season. I will be partaking in two National Brain Tumor Society events this spring. One here in DC and one in Boston. In DC my friends are putting together a team for the DC Race for Hope. There is no team page set up yet because we haven't come up with a good enough name, so if you have ideas please share! If you are interested in joining us it is on May 4th and is a 5K walk/run. I plan on running it (slowly) so my training will start up again soon.

For those of you in the Boston area, and those willing to travel there with a bike (or rent a bike), Team Erin will once again be participating in the Boston Brain Tumor Ride on May 18th. We would love for anyone to join us either in the ride or just at the event. There are a few rides to choose from starting at 10 miles and going up to 62 so take your pick! You can take a look at our team page here. The ride will mark the end of my chemo so while I'm not sure yet if I will be up for a 62 mile ride I will definitely be there celebrating.

Thanks for checking in, I know the updates are few and far between but it's a good thing! I do hope some of you will be able to join us for either of the NBTS events!

Taking off at last year's ride

Saturday, December 21, 2013


Sorry for the long delay in posting, I've been busy. A good busy! After finishing radiation I hung around Massachusetts long enough to enjoy Thanksgiving Dinner and then I drove back to Virginia the following Saturday. I had a relatively "normal" four weeks with only one doctors appointment and then getting back into work full time.

It has been wonderful to be back at work, I missed having a purpose to my life. I won't lie, being back at work has been exhausting but not so much that I can't get through a shift fine. I'm just in bed pretty early after work, and I haven't done any threes in a row yet, or any overtime. The hardest part was just getting back on that work schedule of waking up at 5:45, my sleeping patterns were all out of whack. It's been great to see everyone at work, lot's of new people too, and I don't know who any of the patients are (that's probably a good thing). What surprised me the most was how many doctors have welcomed me back and asked how I was doing. I guess we do work pretty closely with them but still, there are a lot of nurses, I don't really expect them to notice when one goes missing so that was nice haha.

Ok, so the update you've been waiting for. This Thursday I headed back to Hopkins for the first time since August. I had an MRI, blood work, met with my surgeon and my oncologist. They say my MRI looks great! I've got a whole lot of scar tissue in my noggin now thanks to two surgeries and 33 rounds of radiation but nothing that looked like tumor or anything suspicious. Definitely the best Christmas present. My surgeon still wants to see me every three months or so and I will continue to get MRI's now every two months. Of course I am also continuing with chemo for another six months. It will be the same chemo I was on previously (Temodar) but it will be a higher dose. For the first round they will double my prior dose and then it will be increased once more for the second round and stay that dose for the remaining cycles. The cycles are five days on twenty three days off. I will start this week on Christmas night, which was my choice because I have a weekend trip in early January that I didn't want chemo to interfere with. I will take my chemo Wednesday - Sunday which should give me the best chance to not have to miss any work. I will be able to work Sunday-Tuesday, do my five days of chemo, recover for 2-3 days if necessary then work the last three days of the following week. This first week around will be a trial. Since I had no side effects with the low dose I am hoping that any side effects this time around are mild and manageable. I will tweak my work schedule the following cycles if I have to but for now I'm hoping this way works.

I'll be going home for Christmas on Monday and staying until Thursday. I had already bought my tickets without knowing what my work/chemo schedule would be so I won't be working any day but Sunday this week but hopefully this will be the last time I have to miss so much work for a while.

I'll try to post a picture from Christmas at some point, I got some new hair :-)

Enjoy the Holidays! Thanks for checking in!

Tuesday, November 19, 2013

Thirty-three down.

Rang the bell

Today was my last radiation treatment! While time has dragged it's also gone by very quickly, if that makes sense. Thirty-three days of driving up the "express" way in bumper to bumper traffic, of being bolted down to a metal table and having high intensity radiation beams aimed at my head all in hopes of killing off every last tumor cell that might have been lurking in my brain. For the last forty-seven days I have also been taking daily chemo. Tomorrow I am looking forward to sleeping in, not having any med alarms set and eating breakfast when I wake up. My chemo had to be taken on an empty stomach (no eating for two hours before) and one hour before radiation so I usually didn't eat anything until my granola bar on the ride home. For most people who experience loss of appetite during chemoradiation this probably isn't a problem but my appetite stayed strong and I am someone who needs to eat first thing in the morning so I am glad to be done with that.

Really I have been absolutely blessed with a completely smooth course. I experienced none of the side effects they told me I would, never had to go on steroids and was able to keep up with my "C25K" training. There is still a chance over the next week or so that I could have some late effects but I'm hoping since everything has gone so well that I won't.

"Ring this bell three times well, it's toll will
clearly say, my treatments are done, this course
has run, and now I'm on my way"
Now I have a confession. I didn't shave my head. I was all set and ready to but when it came down to it, I can hide the bald fairly easily with a headband so I figure I'll give that a try for a while. If it drives me crazy I could still shave it, it will likely be anywhere from one to six months before it even starts growing in again so I'll just have to see how it goes. I am including some pictures of what my hair loss looks like because before I had radiation I tried to prepare by looking for pictures. While every person's hair loss is different these pictures might help someone else prepare. Just know that I am going to be wearing a lot of headbands, scarves and hats for the next few months.


My plan now is to hang around here another week and a half, through Thanksgiving, and if all goes well then I'll drive back to Virginia that Saturday. I hope to get back to work as soon as possible. I will have my next MRI December 19th, one month from today. Then we will plan out the next part of treatment. That MRI will become my new baseline to compare all future MRI's to and will likely show residual scarring from now two surgeries as well as radiation. The plan right now as I know it is to continue with monthly chemo for at minimum six months but could be longer. It will be the same chemo I've been on but a higher dose and I will take it five days a month. Since I've done so well with the low dose I'm hoping any reaction to the higher dose is minimal.

I am extremely happy that this part of the challenge is now over. While I know this tumor is something I will have to deal with for the rest of my life I try not to let it dictate my life. I will do whatever I have to do to keep it from coming back, to make sure we catch it early if it does but I refuse to let it have any higher influence than that. It doesn't deserve to consume my time with worry, fear or stress.
Life is too short for that.

**ps: if you haven't, please read the blog post right before this one regarding my friend who is setting up a soup kitchen in his home village in the Philippines**

Thursday, November 14, 2013

Non Tumor Related Post

I think I've said it before but I'll say it again. I work with a fabulous group of people and between the NICU & the CICU I have worked with many great nurses who came here from the Philippines. The recent devastation to their home is incomprehensible. One of those nurses has a plan to help. He is headed home to the village where he grew up to start a soup kitchen with plans to feed around 800 people a day. Many of them will be children. They will feed people for as long as they can and to do so requires our help. Please consider taking a moment to look at his webpage and donate. It doesn't need to be much, $5-$10 can go so far for them.

Click here to Help

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 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!