The FFR is here!

Got a call from Dr. V. (the onc) today.

me: "What's up?"

Dr. V.: "Well, the 'FFR' is here."

me: "What's that?"

Dr. V.: "The final effin' report."

That's a verbatim quote by the way; I'm not sure the f-word is in Dr. V.'s vocabulary. Anyway, the final pathology results are in from the local lab. Turns out the mass that was removed was not active germ cell cancer after all as the preliminary report said, but was metastasized teratoma, as we had originally expected. Phew! Good news for now.

He had also spoken with the pros from Indianapolis, and they want the pathology slides so they can do their own study and report. Works for me. More news as it develops...

Thursday Update

1^st for church members. There is a funeral w/ a meal following at our church tomorrow. If you are wanting to help with the meal (brining food/setting up/serving/etc.) please let Marjorie know. If you are on the church email list you need to make sure your responses to the email request were sent to Marjorie, not to me. There’s a few things on my plate right now and I *think* I’ve forwarded all the emails that came to me through 7pm last night (Wednesday).

Ok, Frank.

He had a good night—as good as can be experienced while on a morphine drip and being in a hospital where they take your vital signs every 5 minutes or so. (Ok, not that often)

He’s still requesting no visitors but thanks everyone for all their thoughts and prayers.

All tubes execpt IV were removed around noon today. He may get to go home tomorrow.

The hard stuff:

While the surgery went well, we have encountered a “speed bump”. His oncologist, who says we “pay to be paranoid” (Dr. V’s words) has indeed earned his money on this one. He was the one who insisted that the spot on his lung come out. The initial pathology results in the OR say that the spot was germ cell cancer. These are the same cells that were in his original tumor. It is a metastasis of his Testicular Cancer.

Yeah.

Kinda takes the wind out of your sails doesn’t it?

Personally I felt like someone was sitting on my chest all day yesterday.

Dr. V has a call in to IU to get “some hand holding on this from the experts.” The Dad, my mom and dad and I were all there when Dr. V gave him the news. Dr. V even called Frank's brother Dr. Scott so that Scott could interpret for the the ladies in Atlanta. (Frank's mom and sisters).

Today, we wait happy b/c it is out of him, but also anxious to find out what IU recommends.

Things we know:

• There were no tumor markers in his blood work when the CT was last done on April 5
• The spot did not show up as active cancer on a PET scan—but we also don’t know if germ cells show up on that type of scan—a question for IU
• The spot was small and the Dr. M, the surgeon, did get it all and with only 4 small incisions instead of opening him all the way up
• Frank has a great attitude
• And most importantly we WILL get through this

I’ve gotta run.

Peace to you all.

The Rev

Long Time, No Post

Well, it's just about three weeks since the great RPLND took place, and I am slowly matriculating into the normal world again. The trip is not without occasional bumps and stutters: I had a sneezing fit last night and thought I was surely going to die, as I know my stomach had ripped open and my insides spilled out.

I've transitioned from Vicodin to Ultracet so that I'm OK to drive again, and I drove to my Board of Directors meeting on Saturday. It was a local trip, and the meeting lasted about 4 hours, which I seemed to tolerate well.

I got Dr. Foster's notes from the operations and confirmed what I had suspected - they had to severe a bundle of nerves that were tied up with the tumor, so I have a bit of nerve damage in my left thigh. Not sure if this is permanent; others who have been in a similar situation say that the tingling will go away after a couple of years, but that's just anecdotal evidence.

I had another one of the church RNs come by and pull the staples and apply the Steri-Strips. The incision is healing nicely, although when I went to the cancer box this morning for blood tests one of the nurses who obviously has a scab fetish picked off a bunch of my scabs. OW!!! Supposedly it will make for a nicer looking scar, but with as much chest hair as I have (and it is coming back with a vengeance), pretty soon you won't be able to see a scar anyway. I'll try soaking in a bath tonight to get the rest of the steri-strips and scabs off, hopefully in a less painful fashion.

I head back to Indiana next month for a follow up visit, then the rest of my care should be handled locally from then on. I'll have regular blood tests and x-rays, as well as the occasional CT to make sure that no teratoma comes back (so I get to keep on chugging those berry-flavored, yet earthy, barium shakes - whoopee).

I had Sarah shuttle me around this afternoon to pick up various medical records so I can put together a packet for the FAA and get my butt back into the air (naturally, the club plane is in the shop due to a little fender-bender, so there won't be any flying happening for the next couple of months anyway).

That's the way things are right now. I'll check back in a few weeks, unless anything new pops up.

the low down diagnosis

Here's what we found out on Wednesday Jan 12, 2005 (from Frank's email to Schmink)

the nitty gritty:

--
The pathology report says the tumor was mixed germ cell, 95% embryonal,
less than 5% mature teratoma, focal seminona.
It was classed pT2 (tumor extends through tunica albuginea with vascular/lymphatic invasion).

CT scan shows: "There is a large inhomogeneous mass seen in the left periaortic area that
measures 6 cm x 5 cm in size.  This displaces the left renal vein anteriorly and extends over
routine 7 mm images anterior to the left psoas into the region of the left common iliac artery."
(the orchicetomy was on the left side)  N.B - the onc thinks the size is underestimated by
at least 2 cm (in the head-to-toe measurement).

Bloodwork on 12/27 (10 days before the orchiectomy):
LDH 258, AFP 9897, B-HCG 372

Bloodwork on 1/10 (5 days after the orchiectomy):
LDH 216, AFP 9464, B-HCG 451

So it's non-seminoma that has metastatized into the retroperitoneal lymph system,
with a big frickin mass sitting on my aorta.
The urologist suggests chemo first and maybe surgery later after the mass has shrunk.
The oncologist/hematologist suggests the same, except he will probably insist on
surgery after chemo.

The urologist isn't big into staging; the oncologist said pT2, N3, S2; or stage IIC.

Here's the plan: I go get a port-a-cath next week, then start chemo on the 24th.
3 rounds of BEP (maybe a fourth if the tumor markers don't fall like they should) with Neupogen
between rounds; 12 weeks total (more if 4 rounds).
Intermediate CT scans, with the likelihood of surgery after the chemo is done.