January 6, 2011

  • The Biopsy Shuffle

    Posted by Stephanie   6:00pm CST  From Joe and Sarah's   Pearland, TX

    So, the past couple of days (as Sammy mentioned in his last post) have been full of nothing but waiting.  Waiting for a call from the Sarcoma Center scheduler, who was waiting for a call from the radiology people, who were waiting for a cancellation, and so on.  Yesterday we were informed that the biopsy was able to be moved up from next Friday, but only to next Tuesday.  Still not ideal, but definitely better in terms of travel and timing for myself and whoever is going to be with me for the biopsy and followup appointment to get results.

    After we got the final, sealed-in-stone word about the biopsy yesterday, we spent a good chunk of time thinking up every possible travel scenario to figure out what made the most sense timeline-wise and with finances, etc.  Sammy's already home at the moment, and conducting a concert later this evening, but we needed to decide what I was going to do between now and the biopsy next Tuesday.  Do I go home for a couple of days or stay down here?  I mean, there's a couple loose ends at school that I could take care of, and of course it'd be nice to sleep in my own bed, see the cat, etc.  But, on the other hand, we'd pay a couple hundred dollars for me to fly home for literally 48 hours (and then have the cost of getting back down here).  It's hard to justify that cost for such a s short time, especially when there's nothing I absolutely had to do at home.  I struggled with it back and forth all day, but finally decided that I should just stay down here.  That's the least stressful scenario.  People keep telling me that what I want to do right now should be the most important factor, but I can't lie in saying that I'm freaking a bit about the financial side of things with the potential of missing so much work looming in my future.  Ugh.  I hate that this disease has made that a ruling factor in our lives for so many years!

    Okay, so that part was decided.  Next we had to figure out who was going to come down for this biopsy (Sammy or my mom), when they were coming, and how they were getting down here.  Do they drive?  Fly?  Driving is cheaper, but more time consuming, and with Sammy needing to work and my mom needing to take care of my grandfather, it makes it tricky.  We even toyed with the idea of Sammy driving down, then flying home after the biopsy and being replaced by mom for the results followup, then she and I would drive the car back.  Sound confusing?  Yeah, it's like playing musical chairs only with plane flights and people.  The other factor to consider in all this is when that followup appointment would be with Dr. Benjamin.  We should get preliminary results in 24 hours, but it could take 2-5 days for full results.  If we wait to get into the week after the biopsy (the week of the 17th) for the appointment, then we run into a conference that I had already made plans to attend.  Long story short, all this is one giant logistical mess.

    Yesterday I emailed Mara, my nurse, to see if she had any thoughts on the timeline of the results followup.  I heard nothing until just about 20 minutes ago, when she got back to me and said Dr. Benjamin wanted to know the dates of my conference, and could see me after I got back from that.  Um, hello, NO!  No way I'm waiting nearly two weeks after this biopsy is done to get the results.  I immediately called and left a message, and sent an email back, but they're out of the clinic tomorrow, so sadly it looks like it'll be next week before I know anything, and we'll have to go ahead and make travel plans, at least to get someone down here, without all the info.  Frustrating.  Don't get me wrong, I know from years of experience that in a major hospital setting like this it takes time to get things scheduled and moved around and all that, and they can't cater extra to me just because I happen to be an out-of-towner.  I just wish it were working out to be a little less stressful than it is.  Make sense?

    This morning, I had bloodwork and the pre-biopsy evaluation at the hospital.  Basically, it was just so a PA (Physician's Assistant) could come in the room and walk me through the biopsy procedure and have me sign consent forms.  There isn't much she told me that I didn't already know from having a CT-guided biopsy five years ago when we were working to get me initially diagnosed.  The biopsy should last about an hour.  They'll sedate me (though I'll be conscious) and do a preliminary chest CT so they can pinpoint the exact area for the biopsy.  Then they'll numb my skin and insert the needle.  For each small increment they go further, I'll be run through the CT machine again, just to make sure they're on track.  A pathologist will be in the room so that once they reach the lymph node and get a sample, he will be able to decide if it's viable/enough, etc.  That's it!  I'll be kept in observation for 3-4 hours after that, so that they can monitor me for any problems.  They will also do a chest x-ray immediately following the biopsy, and then again before I leave so they can check for a pnuemothorax (collapsed lung).  If I do have one, they'll insert a tube to help reinflate it.  On rare occasions they have patients stay overnight in that case, but normally they go home with the tube in for 24 hours then return to have it removed.

    I think that catches you up on everything that's been going on medically.  In other news, I'm fretting a bit over stuff at school (though all my colleagues are telling me not to).  We're having a hard time finding a musically experienced sub for the next week or so, and in the meantime, they're juggling to get my classes covered with just the staff that are there.  Bless them for that, it's got to be tedious.  I just feel awful that although this obviously isn't my fault, it's having such a domino effect back home.  Honestly, that's one of the things I feared most about going back to school (second to physically working myself to the point of exhaustion or beyond)--having to go back on treatment mid-year and leave a giant mess that everyone is scrambling to get covered.  

    I guess I should go for now and scrounge up some dinner.  I started coming down with a cold yesterday (like I needed that on top of everything else), and I'm so plugged up I can't taste anything.  That's super sad.  I'll be back on here tomorrow with more.  Nighty night.

    -Steph