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