The Humor of the Situation

What ho? December already? (12/2/07)

So I've gotten a lot of comments on this blog, some about how well it's written (really, guys? I mean, who's humoring who, here?), but a lot about how upbeat I seem, at least in writing. Well, strangely enough, it's not really an act at all. Sure, there are days when I really don't feel like talking to anyone or am just kinda down and frustrated, but for the most part I guess I am pretty upbeat about all this. Maybe I just don't know any better. I guess after the fifty-millionth time hearing someone exclaim, "Oh, but you're so young!" or "But this is so rare!" you can't help but laugh, really. Even when the PICC nurse puts your line in way too far because of a bad radiologist's read of a X-ray, you kind of just have to take it in stride. These people are supposed to be the best of the best, and they still make those kinds of mistakes? Sure, you get a bit angry and miffed, but at the end of the day my heart got a little tickled (literally) and that was about it.

There is a fine line between being accepting of new obstacles and being a pushover, though. That's where it's really important to have people who can root for you and pull for you and push for you when you need it. I think in all this I have tended to be a little too forgiving and too patient, whereas my family (mom, sis, Serena) have been really advocating for me - can't we get that appointment a little sooner? where's the pathology report? can we send slides out to another hospital? When will we get the results? So for all my laid-backness, they've been supplying the fuel to get things done. Now that we have our superstar doc, some of those fears are allayed, but you always have to keep diligent.

Anyhow, for this installment, I thought I'd describe a bit how I ended up (finally) in chemotherapy this past week.


Chemo, Schmemo (or "How I was almost treated at the Children's Hospital")

So for those of you following along, the PICC saga was but a small side vignette of what really went on the week of Turkey day. First off, here's what my schedule looked like that week:

Mon - 8am - injection for bone scan
Mon - 9am - PICC placement
Mon - 11:45am - PICC adjustment 1
Mon - 12:40pm - bone scan
Mon - 5:30pm - PICC adjustment 2
Tues - 10am - echocardiogram to confirm PICC was in the wrong place
Tues - 11am - PICC adjustment 3
Tues - 2pm - Appointment with pediatric oncologists in the children's hospital
Wed - 10am - appointment with radiation oncologist in adult hospital
Wed - noon - PICC bandage change
Wed - 2pm - Chest CT scan at Children's hospital

I suppose this is how things can become a full-time job. Of course, each appointment lasts at least an hour, and that's if things are going smoothly. And each discussion with a doctor seemed to bring up more questions and even more frustration with the slowness of things.

As mentioned before, the original diagnosis was slightly off from what our second (and now third) opinion hospitals said, and so it looked like embryonal rhabdomyosarcoma would be the final call. You might think that here's a situation in which to get pissed off at the pathologists for not calling this sooner, but at the same time, if it takes top experts at three hospitals this long to figure out what something is, you've gotta think it really is that unusual and rare.

Going into the appointment on Tuesday we had verbal confirmation of the new diagnosis, but not official word. Having rhabdomyosarcoma is good in a sense, since there's actually data on this kind of sarcoma, and the docs have a good sense of how to treat it. There are still open questions of course - in the carcinosarcoma case I was too young to be getting such a strange cancer, and now I'm on the older side of rhabdo. What this means is that they don't know quite if I'll respond like a child with rhabdo or like an adult (in a lot of adult cases the patients are into their 50s or 60s). In any case, we had a conversation with the pediatric oncologists that was fairly general in nature, given that the pathology had still not been set-in-stone finalized. They said basically we would need to get the cancer under control first with chemotherapy (systemic therapy), and then move onto local control (radiation or surgery) after that. Because the thing is so aggressive, surgery at first probably wasn't an option, given the amount of recovery time needed and the possibility that the cancer might grow again during that time. The one scary catch is that rhabdo does respond well to chemo in both children and adults, but in adults there tends to be more likelihood of recurrence once the chemo is stopped. Still, I choose not to take this kind of information too seriously, because there are so many factors that could cause different people to respond differently.

Into the mix of all this you throw in the idea of clinical trials. Usually these are research trials that the drug companies are conducting to see how effective their new drug is against the standard care. For rhabdos, these trials have been pretty good in terms of effectiveness, so it seemed like a good idea to be in one. In our case, there's this new drug that's shown to be effective in treating recurrence of rhabdomyosarcomas, but now they've set up a research trial to test its effectiveness at the first pass treatment. This was something that was being done as a national study, and the children's hospital was participating in the study for low/intermediate risk patients. The fact that they can even stage the disease tells you there's at least some information out there about the prognosis of this cancer. But they needed to know what stage I was in order to be in the study (and actually, to determine the treatment plan in general), and of course that meant we would have to do some more tests.

Basically the staging tests involved different scans to see if the tumor had metastasized at all. The bone scan showed up negative, so that's good, but to truly identify bone marrow involvement we had to get a bone marrow biopsy. In addition I needed a chest CT to see if there were any metastases in the lungs.

As of Wednesday, we had the chest CT scheduled, but the bone marrow biopsy was not scheduled til the following Wednesday. Given the holiday weekend, things were tight, and it felt like it would be forever before the biopsy was done and staging was complete. We met with the radiation oncologist on Wednesday, mostly just to meet her and catch her up on all our conversations. There were still no definitive answers until we had identified right stage.


An aside about bone marrow biopsies

So as you may have heard, getting a bone marrow biopsy is not a very pleasant experience. It's so unpleasant for kids anyway, that they usually just put them under general anesthesia in order to do it. Usually, the biopsy consists of two parts, actually getting a physical core sample, and pulling out some of the liquid for an aspirate. For the study, I would need bilateral biopsies (one on each side), plus extra samples of bone marrow aspirate (the super painful part) for some biology tests. Well, as it turns out, my ped onc had had this procedure done before, and he strongly recommended getting general anesthesia for it. Only problem was that they would have to wait to get an anesthesiologist to do it, which meant delays, which was why they couldn't do it til Wednesday. We spent a good part of that Wednesday fretting over whether we were once again waiting too long to do this, and now with 4 days of fretting, I finally said, if we could get it done on Monday without general anesthesia, I would do it. . . . And then came Monday...

Monday after Turkey Day (11/26/07)
We went in to see the peds onc at the children's hospital for our follow up appointment on Monday. First thing he says is, "unfortunately, the chest CT did show a few nodules in your lungs, the largest of which is about 4mm. They're very small, and likely they'll go away quickly with chemotherapy."

Huh. So...?

"So that means you're actually in the high risk category and can't be treated on the low/med risk protocol".

Double huh. Okay, so is there a high risk study?

"Well, there's a high risk study, and actually I'd feel more comfortable with you getting a more aggressive treatment anyway."

Oh, okay, I guess that's good. But...?

"But oh wait, the high risk study isn't open here, so you can't be treated on it."

I see. So why am I over here at the children's hospital away from my superstar doc (Dr. J)?

"So I guess there's no reason to be over here when you could be treated at the adult side with Dr. J."

I thought so. Well, check ya later, bud, cuz it's back to Dr. J for me.


And so, we went back to the adult side, that same day, when Dr. J scheduled an appointment for us. And indeed, that same day she finagled me a spot into the chemo ward so I could start infusion the very next day (couldn't start that particular day since the chemo slots were all filled up). Quite the ridiculous rigamarole to get there, but I finally started treatment that Tuesday (11/27) after months of trying to figure out what the heck was going on...

Whew.

To top it all off, the bone marrow biopsy ended up being this 10-minute procedure that the nurse practitioner did at my bed side on Wednesday. It definitely hurt and wasn't that pleasant, but it was not the all out painfest it was cracked up to be. (BTW, the biopsy results were negative!)