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

Overdue.

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!