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 is...no 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...