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.