Monday, January 31, 2005

7K day

It was a $7,000+ day at the doctor’s office. Thank goodness for Health Insurance. And that Frank is not on my job’s plan….

Round one day 8, a shot of bleo and Neulasta.


Bleo is being pushed by the nice nurse. Frank's holding the $6K box of Neulasta. Posted by Hello

The boy worked this morning and so did the girl. In the afternoon we went to get “shot up”. All in all it was a short day, considering last week.

Frank: I might have overdone it a bit today, working a half-day and then showing up to my choral group tonight. But I thought it was important to put in an appearance to thank my many friends for their moral and spiritual support through this journey. Plus, it was an opportunity to boost the stats for the blog… Regardless, It was a good thing to show up and be seen.
Sarah again: thank you for reading this, it is an ego boost to see the number of hits grow on the stat counter…

Anyway.

The blood work done last week as round one started showed a marked increase in the tumor markers (specifically AFP). This is not unusual or anything to worry about. But it does change his classification (for those of you keeping track) from a IIC to IIIC. The Dr. was not alarmed as the chemo seems to be working b/c Frank’s back is not hurting as it was this time last week. Classification/staging is a very complicated formula. For those of you who are United Methodist, it is much like the apportionment formula, complicated and in the end you are still wondering what it means. If you want to read up on staging check out one of the links in the side bar. I spent time Sunday afternoon studying up on this. Unfortunately, there is not a place I can send you to understand the apportionment formula.


The little blue box.
Has anyone every told you that the active ingredient is E coli bacteria?
E coli!
If so you wouldn't have that impish grin, now would you? Posted by Hello

This week we are to expect the Neulasta to do its work (it better work, it is a very small injection that costs $6K) at stimulating the bone marrow to produce produce produce the white blood cells. Consequently Frank will have achy bones most of this week. (Frank: can I just say that for $6K, I think it’s only reasonable to expect the injection to not only NOT HURT, but give me one of those coveted 4-hour erections or something. I mean, come on…)
Sarah: I wanted him to say a 4 hour Cialis or Levitra “reaction”….sigh.

Anyway.

He may be achy (from the Neulasta), BUT he will not be going to the chemo room at all for the rest of the week. Next week is also just a Monday appointment. I don’t know what we will do with all our “free time”!! (sarcasm implied)

We asked a few questions of Dr V today.

When is the next time we get to see inside Frank’s body?
  • The next CT will be the 3rd week of round two (the week of Feb 28 or 1st week of March).
Should we go to Indiana? (IU is one of the premier TC treatment centers in the universe; they pioneered the BEP chemo regimen).
  • Since Frank’s TC is non-seminoma and he has that mass on his kidney, removal of renal lymph nodes is a possibility. The surgery is called RPLND for short, I can‘t remember what it is called for long. (Frank: retro peritoneal lymph node dissection) It is a very delicate surgery. IU does many, many more of these each year than Dr. D does. Dr. V told us that a 2nd opinion is always ok and if we wanted to pursue one that the week that the CT is done would be the best week to travel to get their opinion. He also assured us that Dr. D would be ok with us doing this as well. It is good when Drs. check their egos at the door. So tomorrow I will begin to make phone calls to set that up. (Frank asked me to do the scheduling.)
Today I’m not so freaked out about all of this. Getting to work in my office made me fell somewhat normal for a while. It comes in waves. When first diagnosed, there was the shock. Not freaked, but shocked. Friends called after hearing the news to ask how we/I was. I was ok, numb I guess, I didn’t really know what to expect. Which is strange b/c in my job I’ve been around more illness issues than the average person. But when we heard about the mass, ok there was some freaking going on. And there was Dr. D (the urologist) commanding me not to cry. He comes across as such a tough guy, but he’s really a big softy and so I saved him from the waterworks. =)

That evening, January 12 will be remembered as a watershed moment in life for us. The many decisions we made….maybe I’ll share more later….I‘m just amazed at how much life we live in each moment, and yet there are only a few times we that we are fully are aware of it….

Know that we appreciate the many ways you are in touch with us, esp. when you hold us in the light.

Peace,
Sarah (& Frank)

4 comments:

Andrew Molenda said...

Hi guys, I got sticker shock when I saw the bill for the Neulasta shot too. But it's worth it, when I had the BEP regimen I became Neutropenic and had multiple infections due to the weakened immune system.

If I were in Frank's shoes I would set up an appointment with Dr Einhorn for a second opinion. If he thinks a RPLND is in order Dr. Foster/IUPUI is the best in the country. Last November he performed a lymphnodectomy on me.

Anonymous said...

hey guys....just dropping a note to let you know i've been reading and praying for you. martha again said it best: "life is not always easy, and we deal with it the best we can..." here's for a bit o' joy in your day, a smile and a hug (even though they are over the internet) and remember, you guys are AMAZING people! love always, danielle

midmomom said...

Frank, Sarah:

I feel priveleged and honored that you are sharing this time that is so diffucult.

Frank, how does it feel to be the 6,000 dollar man?
Both of you are in my prayers.

Andrew Molenda said...

I've got contact information for both Dr. Einhon and Dr. Foster if you are interested in talking to them. Just shoot me an e-mail with your e-mail address.

ajmolenda@sbcglobal.net