Thursday, March 19, 2015

Time flies when the MRI's are clear! :-)

It has been a long time since I last posted. This is a good thing of course, I have had no updates. "No news is good news" as they say.

I am about ten months since finishing chemo last May and all my MRI's have been clear, no changes, boring, which is how we like them. They've been so good that I've been stretched out to MRI's every three months instead of every two. I will stay on every three months at least until I'm two years out from chemo. If all is well at that point I'll likely settle out at MRI's every four months indefinitely (aka my lifetime).

So life is good over here. I finally got to go on a cardiac surgery medical mission trip last month with the Novick Cardiac Alliance ( A group of 15 or so of us from all over the US and Canada headed to Honduras for two weeks where we provided cardiac surgery and cath interventions to 22 children who otherwise would have died from their congenital heart disease. It was two weeks of high heat, humidity, hard work, learning and fun. I met and worked with some pretty amazing people, took care of some amazing kids and attempted to teach local nurses (despite significant language barriers) how to care for the patients so that some day in the future they can successfully provide surgeries and care to these children without our help. They are pretty far away from that point but learning has to start somewhere and that is the mission of the Cardiac Alliance.

They encourage the volunteers to take photos and share the children's stories in order to help them raise money to continue doing surgeries. So here are a few pictures of the kids we helped.
David - Transposition of the Great Arteries, 4 months old

Quiet night in the ICU

Valeri - Pulmonary atresia with intact
ventricular septum, 2 months old
Eduardo - VSD

Estephany - VSD, 5 years old

Cristian - VSD, 18 months old

Those are just a few of the kids we were able to help. I had a wonderful time and I do hope to someday be able to go on another trip.

Last but not least, it's that time of year again. The Boston Brain Tumor Ride is (too fast) approaching and Team Erin will be hitting the road again. Hopefully the ride won't be filled with potholes after the crazy winter Massachusetts has had! Last year Team Erin was able to raise over $14,000! We are hoping to break that record again this year but cannot do it without your help, please consider making a donating either to my personal page or the Team Erin page. Every donation no matter how big or small is appreciated and goes towards life saving research. There have been numerous new breakthroughs in brain tumor research in 2014 but there is still no cure - because there is no cure I will continue to get MRI's for the rest of my life. We are optimistic that my tumor will never return but no doctor can give me that guarantee. For this reason we need to continue funding this vital research and find a definitive cure. I hope I won't need it in my lifetime but every day thousands of people are diagnosed with a brain tumor and they need that cure. Please help us top last years fundraising, any little bit helps!

You can donate by visiting:

Thanks as always for checking in, I know it stays pretty boring around here but that's how I like it!

Thursday, June 26, 2014

Good riddance

I packed up my wig, wig supplies, shampoo and 22 headbands and scarves today. I won't toss them but hopefully won't be using them ever again. Well some of the headbands are nice and I will use - accessories only though :-)

Wednesday, June 25, 2014

Wow, it's been a while

Well I can't believe it's been four months since my last post, I've been pretty busy (and without a computer for the last four weeks or so, Katie is letting me borrow hers so I can get an update out). A whole lot has happened since February, most importantly I am DONE WITH CHEMO! I took my last dose of Temodar on May 19th, the last cycle that almost didn't happen. Very long story short my insurance company suddenly decided I no longer qualified for Temodar because I didn't have the "right" kind of brain tumor. Well once again, sorry my tumor has to be so rare and difficult, trust me I'd rather have had a nice straightforward diagnosis too. Anyways I found this information out while I was at work and if it weren't for the fact that I had a post op patient (meaning I had no patient until around 2pm) and for my wonderful coworkers who helped me out so I could go make 32+ phone calls I would not have completed my last round of chemo. Up until this point I have had zero complaints about my insurance company and have been so thankful for the good insurance I do have, over the past three years they have (almost completely) covered over $400,000 (and yes I just did that math off my claims website and my noggin is apparently worth that much) of surgeries, tests, treatments, doctors appointments and medications without denying a single thing. I made it to the very last round before they dropped the ball (and when I say they denied it I mean they wouldn't even let me have it, not just that they wouldn't pay for it). Anyways thanks to my persistence which ultimately involved escalating things to the manager of my insurance's pharmacy as well as every doctor at Hopkins I could get a hold of, I was able to get my meds, even on time, to finish my last round.

So I finished chemo in May. I had an MRI in April that was picture perfect and more importantly I had my first post chemo MRI just last Wednesday that was also perfect. My doctor told me he wants to keep me on every 2 month MRI's for a few more years. Having them so frequently is good in that we will notice changes very quickly should they occur but it also means every two months going through the stress of sitting in the hospital all. day. long. just waiting to hear the results of the MRI. It's been eleven months since my second surgery, 7 months since I finished 33 rounds of radiation + 44 days of chemo and now 1 month since I finished 6 additional rounds of chemo. That's enough I think and here's to hoping for clear scans here on out.

Now to the fun stuff.

On May 4th, along with several coworkers and friends, I completed the first 5K I've run probably since graduating five years ago. Team Onward with Erin joined over 12,000 other people in the DC Race for Hope and our small team raised $630 for the National Brain Tumor Society. My only goal for the race was to finish it running and I did, we all did and with it being one of the biggest events NBTS puts on we had a lot of fun.

CICU Representing with Dr. Bear at the Race for Hope

Team Onward with Erin pre-race (next year we plan on getting
our act together sooner and getting cool shirts so get ready to join us!)

Next, on May 18th, I completed my third Boston Brain Tumor Ride along with my dad, Daniel, Katie and two additional team members, Joyce who I used to row with and Sean a friend/coworker of my brothers. It was my second to last day of chemo but I went to bed early and was feeling pretty good. We were able to finish as a group in under 3 hours. Team Erin was also able to raise an astounding $14,500. So incredible and only possible thanks to all the wonderful supports and donors we have out there. We thank you all.

Team Erin before the ride, I promise we only look professional,
don't be intimidated by the cool clothes, we are always looking for new riders!
Katie, Joyce and I before the ride
Team Erin with our supporters who came to cheer us on, we got awesome team shirts
this year and will again next year so please come out!
"In Celebration Of...My Last Day of Chemo!"

So many thanks go out to everyone who donated to/participated in/came out to support the Race for Hope and Boston Brain Tumor Ride. I wish I could thank everyone personally but the list is so long. Just know that you are appreciated and every little bit counts and is going towards research for new and better treatment options. I am often reminded that there is still NO cure for brain tumors and only four FDA approved treatments for over 120 types of tumors (by the way, when I talked with my insurance company only two tumor types were approved for the type of chemo I received, there is no "approved" treatment for my type of tumor specifically). I was lucky that my tumor was in a place deemed "easily accessible", I am lucky that I work in a hospital and am therefore a "doctor snob" and chose (and knew how to choose) only to go to the top facilities for my care, I am lucky that I live in an area that has easy access to top of the line care and treatments, I am lucky that I work in healthcare and knew how to work the system when my insurance denied my medication. I have been lucky, most people are not that lucky.

I will leave you with links to two interviews I did to raise awareness of both the Race for Hope and the Boston Brain Tumor Ride. My next post may not be for a while but know that no news is good news in this case.

Arlington Connection - Race for Hope

Stoughton Journal - Boston Brain Tumor Ride

Till next time (but please don't hold your breath waiting!)

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