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!

Friday, September 20, 2013

Almost go time...

I finally had my treatment planning day. It's been two months since my surgery and right now I'm scheduled to start everything October 3rd. I've been pretty frustrated about that. I literally could have been working this entire month rather than sitting around, not working and trying to hold onto my sanity.

Anyways treatment planning consisted of three appointments. First I had a head/mouth mold made. The mouth mold (which was just like making old school mouth guards) is screwed to a head frame, the head mold goes in the back of the frame/back of my head and then the frame is screwed on; VERY tightly. That frame will then be bolted to the table I'll lie on during treatment. I'll try to get a picture of it at some point, it's quite the contraption. The purpose is so that I cannot move my head at all during therapy so the beams go to the right spot every time.

The second appointment was to have small silver fidicules (aka silver BB's) embedded into my skull. These are also used in the precision of treatment and help them guide the proton beams to the same place each time. Nothing more precise than having the markers screwed into your skull. They were placed under local anesthesia (lidocaine) which I actually didn't even feel because my scalp is still numb from surgery. I could feel a lot of pressure though as they were screwed in (three of them), and the sound of hearing your own bone crushed and drilled into is not something I would ever want to experience again.

Last but not least I had a CT scan which they will use to plan my treatment and where they want the radiation beams to go. I would say it was by far the easiest part of the day if the tech placing the IV (for contrast) wasn't so nervous and shaky about it...where are my NICU nurses when I need them?

So that's it. It takes the doctors about a week to get my treatment planned. Right now I'm scheduled to start October 3rd but it could be moved up if they finish planning sooner (I'm not holding my breath though).

I am ready to get this show on the road for sure!

Sunday, September 15, 2013

No news news

Pretty much sums up things around here right now. I still haven't heard from my doctors on when I can start treatment. They warned me that patients often think they've been forgotten while insurance stuff is getting worked out so I'm not worried, just ready to get things started. The longer the delay starting the longer treatment gets dragged out the other end. We're already looking into the beginning of next summer for finishing up the 6 months of chemo. I'm just antsy and done with sitting around, at least when I'm doing chemo & radiation I'll be actively killing tumor cells while sitting around.

In other news, we went and saw Wicked last week which was phenomenal! I'm already trying to figure out when I can get to New York and see it again, so if anyone is planning on seeing it sometime soon on the east coast contact me, I'd love to come! Till then I bought the soundtrack and am learning all the songs so I can be an active participant next time I see it :-)

We also sat pretty far away, next time
I want to get orchestra seats and actually see their faces
We also had the new boathouse opening and rowing reunion last weekend and that was a lot of fun. There were SO many alumni there, some from as far back as the 70's so it was pretty impressive and probably the only time in UMASS rowing history that we'll have that many alumni together at once. Just goes to show how important the rowing program is to so many people and how many lives it has impacted.

The new Boathouse is beautiful and the girls now have the job of making sure no one regrets giving it to them, which I'm sure they'll be able to do just fine.

Our old boathouse, lovingly called the "Tin Can"

The new beautiful boathouse as seen from Rt. 9
This picture probably doesn't even do it justice, it's amazing
So that's all for now. Hopefully I'll have some news on moving forward with treatment this week.

Friday, September 6, 2013

Protons, chemo & an EPIC weekend ahead!

*This is a long one. I'm sorry!*

Whew! Another busy week but mostly because I've been traveling all over and I'm not quite done yet. There's going to be an EPIC UMASS Rowing reunion this weekend and I CAN'T WAIT!

As of Wednesday I am officially back in Massachusetts for the next 2-3 months (TBD). I lucked out last week and very last minute found someone to sublet my room for part or all of the time I am gone. Since I didn't completely move out of my room I didn't ask for my whole rent but this is a significant help. Plus someone has to keep Katie in check :-). Of course this person rowed at umass. College sports can continue to be significant networking devices throughout life, for all sorts of things.

Wednesday my dad and I met with the Mass General team. No big surprises. They agree with Hopkins plan. They have not had the chance to look at my pathology themselves yet (I've been dealing with pathology drama for two weeks now because I chose to get second opinions before deciding to be treated at MGH, pieces of my brain have literally been up and down the east coast). I had to cancel the Dana Farber consult all together, Memorial Sloan finished there's but it's so difficult to get copies of reports done at outside facilities that I probably won't get it for a while or at all. The oncologist joked about how my tumor has been stumping pathologists all over...I'm interested to hear what MGH patho has to say. I signed consent for them to keep any "extra" tissue in their tumor bank for research, Hopkins has some in their bank as well; someday when the paper is written and someone decides what kind of tumor I have I'd like to read it :-).

Our meeting with the oncologist was pretty straightforward. Like I said he agreed with Hopkins and we discussed some general things about the chemo - Temodar. It's an oral chemo that tends to have fewer side effects than more traditional IV chemos. I would do 6 weeks of it daily with radiation then have a month off. Then I would start "maintenance" chemo which is 5 days on, 23 days off for about 6 months. He was pretty confident that I would be able to return to work when I started that so that's what I'm hoping. Six months out of work might put me in a psych ward and I've got enough problems at the moment!

After that we met with the radiation oncologist. Here is where the plan changes ever so slightly. She is recommending (and actually the oncologist too, he was the one to gave her a heads up about me and suggested it) that I do proton therapy rather than traditional radiation. Proton therapy is very similar to radiation, well in layman's terms it is. It's still radiation but it is more precise and does less damage to the surrounding tissue, which means less chance of long term damage. From the MD Anderson website:
Proton therapy is a form of external beam therapy for which powerful equipment is used to generate beams that penetrate the body. Oncologists use proton therapy to precisely deliver high doses of radiation to a tumor to kill the cancerous tissues without damaging surrounding healthy tissues. 
In traditional radiation therapy, X-ray beams are typically used to treat cancer. The X-ray beams go through the cancerous tissue (tumor) destroying both healthy and cancerous areas along the path of the beam. Proton beams enter the body and deposit most of their energy at the target – the site of the tumor. Radiation oncology physicians are able to focus the energy of the proton beam within a tumor, minimizing damage to nearby healthy tissues and vital organs.
You can also check out: Is proton therapy better than traditional radiation?

So why are they recommending proton therapy? Well for one the chance of fewer long term side effects. Proton therapy is typically reserved for children, well in the brain tumor/cancer world I am still considered a "child". I'd prefer the term young adult but that could be a whole other post about the differences & issues in the young adult cancer world. Not today. Anyways it's used in children because their brains are still developing and proton therapy reduces damage to other brain tissue. That's the hope for me...not because my brain is still developing but compared to the typical 60-70 year old brain cancer patient I am planning to use my brain to it's full potential for a few more decades. Also because of where my tumor is located there is a good chance for damage to my pituitary gland or hypothalamus. This doesn't guarantee that they won't be damaged but will hopefully minimize it.

Hopkins could not offer me proton therapy because they don't have it. There are less than 10 hospitals in the country with this technology and this is probably why my oncologists recommended MGH over Dana Farber because DF does not have it either. The only issue with the proton therapy is that doing this will actually delay my treatment by another 2-3 weeks. Very frustrating. The radiation oncologist still has to present my case to their tumor board (we didn't really give her much time to do that) and make sure they agree that I'm a candidate. Then they have to get insurance approval first which can take a week or so. Once approved I will have a treatment planning day where they will make a mask for me to wear during treatment and...this is where it's a little unnerving...actually embed 3 small stainless steel pellets (look like small BB gun pellets) into my skull during an awake "dental like" procedure (meaning they use local anesthetic). Ok then. I hate the dentist. These pellets will guide the radiation oncologists to be as precise as possible during every treatment. Once that is done it will take the radiation oncologist an additional week or so to plan my treatment. Then I will start. I will not start chemo until they are ready for me to start radiation, so it's going to be a few more weeks of waiting around. I am ready to just get this done and over with!

Because this is getting long, here's some pictures!

Katie & I at the USA vs Mexico Women's soccer game Tuesday night. USA won!

View from MGH's 9th floor oncology clinic. I think this view beats Hopkins by a landslide!
So, moving on to today...I promise I'm almost done!
Today I met with the two nurse practitioners who work with my oncologist. Turns out one of them is the mother in law of a nurse I used to work with in the NICU (who no longer works at CNMC). Small world! Anyways they went over all the side effects and how to manage them of the chemo I'll be on, as well as the dosages, schedule and other meds I'll take with it. While I'm doing radiation I'll take the chemo daily, 7 days/week for the entire 6 weeks (or however long my radiation lasts). Then I'll have a month off before starting the maintenance dose. She mentioned I could be on the maintenance for up to a year, everyone prior to her has said six months so for now that's what I'm planning for. We also discussed potential long term complications which include secondary cancers later in life. Wonderful. I then signed consent for treatment. I also had blood drawn, let me tell you, best blood draw I've every had. That woman was magical, I didn't even feel it! I have great veins so I'm just hoping they are able to stand up to weekly blood draws for the next 6 weeks and then bi-weekly for the next year. One last thing, we also went over exactly which labs they will be monitoring. It is normal and expected for certain "counts" to drop during chemo. Well I looked at my results from today and I am already on the low normal for all the labs she mentioned (I haven't been able to donate blood in years) so I'm hoping that's not indicative of my having a more difficult time lab-wise.

So that's the update for now. I probably won't have another new post until I find out when my treatment planning day is going to be and when this is all going to get started. Maybe I'll post some pictures from this weekend's rowing reunion. My parents and I are going to see Wicked tonight in Boston. We were supposed to go back in August but someone had to have brain surgery instead...

Wednesday, August 28, 2013

There was no I-5...

So if you work with me you'll get the "I-5" reference, for everyone else, lets just say, communication was poor.

We have a new plan - subject to change at any time of course. I received a call on Monday from the fellow who works with my oncologist, he had promised to call after the meeting of the "tumor board" to discuss my case. Present at this meeting were my surgeon, radiation oncologist, neuro oncologist, pathologist and radiologists (people who looked at my tumor & read my MRI's). There's been quite a bit of discussion around my case so I'm told. Somehow my oncologists were left out of the loop with exactly what the pathologists were seeing (which apparently is still a mystery) and the concerns the rest of my team had for potential increased malignancy of my tumor. The oncologists are now on board with the whole chemo + radiation thing and believe that is the best route for me. Boo in the sense that I now have to do chemo but a little relieved as I've read that chemo actually helps the radiation work better and will hopefully give me a MUCH longer time to recurrence or what would be even better, no recurrence at all. Plus most of what I've read says that once a tumor comes back, regardless of grade, patients are often given the full spectrum of available treatments.

And just a quick side note on the radiation because I've had a lot of questions about it, it's not an injection. It's basically a very high tech x-ray beam that will be aimed directly at the tumor bed. Five days a week for six-ish weeks. I will have to have a special mask made that will be marked to ensure that the "beam" is directed at the same exact spot every time.

Things are a little complicated now because I'm trying to get seen up in Boston to start treatment there. My oncologists are actually recommending Mass General over Dana Farber so this week has been busy with setting up appointments, getting medical records, pathology, MRI's and actual pieces of my tumor sent up there. It's essentially starting over at high speed (minus the surgery part). The coordinators there are aware that I need to start treatment as soon as possible since it's already been 4 weeks since my surgery. They are working on getting me appointments for next week and I will have to have additional treatment planning appointments after that before being able to start. The doctors there will get up to speed on things and then give me their treatment recommendations which my Hopkins oncologist believes will be the same ones they gave me, but things could change once I get there though I don't anticipate anything major. I'll update more on their plan once I meet with them.

For now (when I'm not spending hours on hold with some doctors/medical records/insurance office) I'm trying to enjoy my last few days in Virginia for a while. I also got to spend some time in Chicago last weekend and had a fabulous time, thanks Anne & Alex for having me over! I went for a bike ride today, my first since surgery a month ago, 16 miles! It was slow going but felt great! It rained but that also meant it was about 20 degrees cooler out which made it much more bearable. I wish we had such nice trails in Massachusetts, makes getting out there on long rides a lot easier. While I'll miss being here, my apartment, roommate, friends and work, I will also enjoy getting to spend time in New England in the fall, by far the best time to be there.

Next update will probably be from Massachusetts, Happy Labor Day everyone!

Thursday, August 22, 2013

Kickin' it part 3

So I know people have been waiting for an me when I say me too! My dad and I met with the oncologists yesterday. I see a radiation oncologist and a medical/neuro oncologist...the same ones I saw after my first surgery two years ago. We saw the radiation oncologist first and her recommendation is to do radiation, starting sometime within the next 2-4 weeks. We discussed location of treatments. We are all in a bit of an agreement that Hopkins would be too difficult. Radiation is 5 days a week for 6 weeks, it takes me an hour in no traffic to drive to Baltimore and they estimate spending around an hour there, and then an hour drive back. The biggest side effect is fatigue. That will probably be too much. Which is a shame because I really like this doctor. Other options are to do it here in Virginia at Inova Fairfax - a great hospital but not a brain tumor center, or go back to Boston, which will probably be what I do but we're still working it out. If I go somewhere other than Hopkins I would temporarily transfer all my care to that facility and then transfer it back for follow ups when I get back to Virginia since I'll be getting MRI's every 2 months (serious downgrade in the MRI department).

We saw the oncologist next. From talking with both my surgeon and the radiation oncologist I was pretty much prepared to be told I would do chemo too as that was both their recommendations. However he does not want me to do chemo at this time. The most frustrating issue we have right now is that the pathologists at Hopkins won't grade, or even classify, my tumor.

Here's a quick brain tumor rundown (more info on the right sidebar). Brain tumors are classified by cell type (we know mine is an astrocytoma) and then further classified by other features they see so there are quite a few types with each type having it's own standards of care. Then there is the tumor grade 1 (benign) to 4 (not good, don't google it). After my first surgery the pathologists classified my tumor as a low grade (2) astrocytoma with unusual features. Two other hospitals classified it as a pleomorphic xanthoastrocytoma (PXA) with anaplastic features. Here's the kicker - that tumor is so rare it doesn't have a grade under the current World Health Organization guidelines, nor does it have a standard of care since it's so rare. This time around Hopkins pretty much said the tumor was similar to before but with some features concerning for increased aggressiveness (for lack of a better word), but no grade, no name, only the possibility of it still being the PXA with anaplastic features. The radiation oncologists said we're basically in a gray 2-3 area. My pathology is again being sent to Dana Farber & Memorial Sloan Kettering to see what a few more sets of eyes think.

So back to meeting with the oncologist. Because of the pathology report his take is that if it's still grade 2 then chemo won't be effective on it and might cause me a lot of problems/side effects with no effect on the tumor. He has valid points and laid it out for us pretty well. Chemo won't cure a grade 2 tumor, nor will it cure a grade 3 or 4 tumor. There is no "cure". There is hope that it won't come back, many people have had their tumors treated and not come back for many many years. That's what we want. However his take is that if/when it comes back and it comes back as a definite grade 3 then we can use chemo because we know it's more effective against grade 3 tumors (that is the "natural" progression of brain tumors by the way, when they come back they tend to be more aggressive/higher grade). In any case I have a lifetime membership to the MRI center. He does agree that I do radiation and we hope that radiation will give me a lot longer than 20 months before we have to talk again.

The oncologist also said that he and the other doctors & pathologists would discuss my case again this Monday, which is a little annoying because you'd think they'd have done that before my appointment. The radiation oncologist told us she was going to try to push the pathologist to put a number on it but I haven't heard back from her so I'm guessing he didn't. So I will have final word on Monday about their thoughts on the chemo although I have a feeling the oncologist will win that battle.

That of course brings us to second opinions and if I already end up going to Dana Farber for radiation I'll probably see an oncologist there too who might have a completely different opinion and want me to do chemo. So who knows how that will work. All I know right now is that I will be going forward with radiation in the next few weeks (hopefully after the Umass boathouse opening) and chemo probably won't be happening.

I am back in Virginia, hopefully until shortly after Labor Day (going home for the boathouse opening and of course potentially 6-8 weeks for radiation/recovery), and headed to Chicago this weekend for a long overdue visit to see Anne & Alex.
Thanks for checking in!

Monday, August 19, 2013

Not much going on.

I saw this movie recently (50/50) and just had to laugh. I don't do the "why me" thing, I'm a nurse, for sick kids, babies mostly. There is no reason why this stuff happens other than a flaw in the assembling of DNA; which if you knew anything about DNA, genes and how our body gets put together (which I claim to know little to nothing about) then you would think, like I do, that it's a miracle any of us come out NORMAL ("healthy" would probably be the PC term here), or stay normal, for an entire lifetime. The human body is an amazing thing.

Also, I miss work. I've had work dreams for the last 3 nights. It sounds crazy but I truly do love my job. Not for the pay, or the benefits (although I am thanking God for those things every day right now) but because I really love what I do. I like to take care of people, not sit around like a useless lump thinking about myself. And focusing on other people's problems takes my mind off my problems, and puts my problems into perspective really (although that is probably exactly why it took me 6 months to drag myself to a neurologist in the first place 2 years ago, "headaches, everyone has headaches, there are worse problems out there").

Anyways that's all. Still no news. We drive back to Virginia tomorrow for doctor appointments Wednesday and then we should have the plan. I am looking forward to this because I am sick of not knowing what the next few months are going to look like, it's hard to make any plans without knowing THE plan, ya know?

**I also apologize to anyone who may be Facebook friends with me, sitting around doing nothing for three weeks has me horribly addicted to Candy Crush. I'm ashamed to admit it but there you have it. Sorry for the spam.

Monday, August 12, 2013

Staples Out

Well I got my staples out today. Nothing too exciting about it, it actually didn't hurt as much as I was expecting it to either, since they had been in for two weeks I thought it would be worse. We also met briefly with my surgeon and went over the pathology. Basically they don't know what to call my tumor, or grade it. They are leaning towards a diagnosis of Pleomorphic Xanthoastrocytoma with Anaplastic Features but it doesn't fit entirely into that diagnosis, and that tumor type makes up less than 1% of brain tumors, so to say I have something rare is a bit of an understatement. Since they won't really commit to a name or a grade we're probably going to treat it like it's acting, aggressively. There are only a few treatment options for brain tumors in general and once a tumor has recurred the treatment is basically all the same regardless of tumor type. My surgeon seems to be leaning towards definitely doing chemo and probably radiation, however I need to meet with the oncologists to determine that plan. I have appointments with them next week. They won't start any kind of treatment for a few weeks after surgery anyways. The good thing is that the type of chemo they typically use for brain tumors is generally well tolerated and has few side effects, but I'll learn more and be able to tell you more about that after my appointments.

Tomorrow we are driving back to Massachusetts where I'll be until we have to come back for the appointments next week. I have a movie date with a certain five year old this week that I'm very excited about :-)

Thursday, August 1, 2013

2nd Crani Down

This past Monday was the day of my surgery. All went well! I was in the OR a little before 7:30, no sitting around all day like last time so that was great! My OR team was fantastic (though I can't speak for the anesthesia resident who stuck me about 7 times for an art line...but at least I was out). The anesthesiologist putting me out reminded me of Cam, from Modern Family, asking me how much "wine" I needed to be knocked out. He figured out the right concoction :-)

My surgeon's part of the surgery ended a little around noon since that's when my parents got to talking with him. Everything went perfect! Better than expected. Pre-op he had had me sign consent for Gliadel Wafers which are kind of chemo-infused wafer that is placed in the surgical cavity after removal of the tumor. This helps combat the "blood-brain" barrier issue of most traditional chemo's. My preliminary pathology though looked about the same as my prior patho so my surgeon decided he didn't need to place the wafers! Very good news!

Preliminary pathology is not final, I won't have the final results for two weeks or so but the fact that the preliminary results looked about the same is great It means that my tumor hasn't transformed into an obviously more aggressive/malignant tumor yet (it's still considered malignant, just not as "high" on the scale). While I am hoping this means I can skip out on radiation I wouldn't be surprised if they still recommend that I do it. At this point even though the tumor appears less aggressive a recurrence in less than two years is pretty quick and they may still want to treat it aggressively. I should know more after I see my surgeon next week, he may also have me set up appointments with the oncology/radiation oncology doctors I saw before.

The rest of my hospital stay was uneventful. Even though I told the anesthesiologists that I do NOT handle anesthesia well and they gave me "all" the drugs, I still spent the first few hours post-op nauseous and vomiting until they pulled out all the big guns in that regards. After that things went much more smoothly. I spent about 36 hours in the ICU even though by the next morning I was up and getting around, and then spent another 18 hours or so on the "floor" once they finally had a bed ready. The new digs up there at Hopkins are MUCH nicer than the old hospital though so while that helped a little it's still better to be back at home in my own bed on my own couch. I had a post-op MRI (MRI #10...hit the double digits!) which looked "great" (I haven't seen it) and after spending most of Wednesday convincing people that I was ready to leave, I was discharged around 5pm (they didn't want me to think they were "kicking" me out, I told them they could kick faster if they'd like).

Panorama of my ICU room - definitely an upgrade!

Arterial line pokes!
At least I was knocked out!

Day 1 post op - the bandage was actually stapled to my head and removed the next day

Views from the 12th floor at Hopkins

Panorama of my "floor" room, note, no roommate! :-)

Post op day 2, bandage removed

Views from my bed.

I've been home (Virginia) since. My parents are still here and Kim showed up this morning to help "babysit" me for a few days after my parents leave. Helen & Will should arrive this weekend and I'm up for visitors so just shoot me a text or phone call. I'm here until at least the 12th which is when I'm getting my staples out (they have to stay in for two weeks the second time around). I'm not sure they even shaved my hair at all this time so while that helps with the appearance it's a lot harder getting all the gunk out while still keeping my incision dry...I think Kim will be helping me with that at some point soon. I'm not sure who makes the call as to how much to shave but it's nice (if I don't have to do radiation because that will make my hair fall out) that I'll get to miss out on the awkward hair stages.

That's all the updates I have for now. Should have more after my appointment on the 12th. Thanks for all the love, prayers & good thoughts! You're all very much appreciated!

Kim washed my hair :-) It's pretty hard for me to do since I can't see the incision, I also didn't mention that I can't feel it, nor can I feel most of my scalp at the moment (side effect of having all the nerves torn apart as your scalp is peeled off...sorry for the visual). Also means I can't feel the staples, but it won't stop me from feeling them coming out.

Sunday, July 28, 2013

Tomorrow's the Day

It's been a busy week. Besides finishing up work I also had to take my car to the shop (small fender bender), attend a memorial for one of my favorite patients, have my Lasik surgery follow up - which required a second follow up for a small fiber under my corneal flap to be removed (eww), and see my primary and have blood work, an EKG & a chest xray. I've also had to figure out insurance, FMLA and short term disability...which I'm still working on. The week concluded with a 7 am MRI this morning to get all the pre-op "brain mapping" done. I also squeezed in as many visits with friends as possible. I'm exhausted!

Surgery is scheduled for "first case" tomorrow morning which means we have to leave Virginia at 4:30 to get there by 5:30. I have a 7:30 start time. My last surgery was somewhere in the ballpark of 5-6 hours long. Katie will try to post an update on Facebook when it's over. Right now we are planning on a one night stay in the ICU, one night on the step down and then discharge - that's how it went last time so I'm hoping it's the same this time around.

Out to brunch after my early MRI, stuffed french toast!
Wearing the "fidicules" that help with the brain mapping. They stay on until surgery.

Thank you to everyone who has called/emailed/texted/facebook messaged prayers, well wishes and good vibes. I don't think I've gotten around to responding to everyone but I appreciate them all! Special thank you to Betsy who joined me for the car ride to that 7am MRI, really appreciated the company!

I'm off to bed now, early morning tomorrow!
Check back in at the end of the week for a new update.

Sunday, July 21, 2013

Well now that my hair's grown back...

It's been a rather uneventful, quiet and HOT summer around here. Unfortunately it just got interesting. I had a routine MRI two weeks ago and it showed new growth of my tumor. The new tumor is just to the left of where my previous tumor was which means it's likely grown back from some of the tumor cells left behind previously (surgeon's can't get them ALL out). This new tumor turned up in about a four month time frame too since it was not noticible on my last scan in February.

It's not enterierly unexpected, this is why I get MRI's so frequently. However my doctors originally predicted 10-20 years before regrowth, not 20 months, so a little surprise there. I've had mild headaches but nothing even close to what I had previously, and no other symptoms. It was caught early and is only about 1/5th the size of my original tumor.

Original Tumor - November 2011

Last clear MRI - February 2013

New Tumor - July 2013
So what now? My surgeon doesn't want to wait very long. I will have it removed THIS Monday July 29th. I will follow up with him a few weeks after and will most likely have some kind of additional treatments. Both radiation & chemo were mentioned. Nothing will be final until they have seen the tumor. My surgeon did say though that now is the time to be aggressive. We did the "watch and wait" approach and this thing has decided it wants to stick around so now we have to hit it harder.

Once again I will stay in Virginia for a week or two post-op until I get my staples out and have my follow-up. Then I will head home to Massachusetts (at least I'll be out of this heat!). What happens after that will be up to my doctors to decide, depending on what kind of additional treatment they want to do - I may do part or all of that in Boston. I do have a trip planned for the end of August to spend a long weekend in Chicago with a friend I haven't seen in a very long time, so as long as I am able to stand on two feet (which I don't anticipate any issues with) I am planning on going on that trip.

I'll try to keep this updated with my progress, but give it a few days after surgery :-) If you're friends with me on facebook you might get more info there for the first week.

Now to do some fun summer hat shopping because my poor scalp won't know what hit it with this sun!

Thursday, May 30, 2013

Thank You!

Thanks to all your generous donations "Team Erin" was able to raise $9765.00 for the National Brain Tumor Society! We couldn't have done that without your help.

We had a beautiful day for the ride and no complications this year. We finished in just over 3 hours. 

"Team Erin" at the finish line!

Wednesday, February 13, 2013

14 Month update & Upgrade!

A few weeks ago I went up to Baltimore for my 7th MRI, 14 months since my surgery. All looks clear & stable once again : )

Because all my MRI's have been good thus far I was given an MRI upgrade! To every four months instead of every three. I was kind of expecting a six month upgrade but hey, I'll take four months. It will actually probably be more like five months because four months is May and I have two events that require me to be out of state in May and will make scheduling a Thursday appointment difficult (only day my doctor has clinic). We'll see. No reason to stress about it.

On that note, one of my out of state May events is the Boston Brain Tumor Ride. If you click the link to the right hand side of the screen that will take you to my fundraising page. If you're able to donate, any little amount can help! Also if you'd like to join our team and ride with us please contact me, we'd love to have you!