As you may have guessed from last night's post, the news we received in Indianapolis yesterday wasn't exactly what we wanted to hear. I'll give you the longer version of that visit today, as promised.
Our trip to Indy was completely uneventful (thank you, God!) and we made it to the hospital without any issues (thank you, TomTom!). I guess I am now officially spoiled by my new hospital, because I was totally underwhelmed by the waiting room and exam rooms. The last update either one received was circa 1979; however, the rest of the hospital was very nice, I should add. Am I focusing on the wrong thing here?
Every single person we encountered was very kind and very professional. When the medical assistant was finished taking Johnny's history she told us that she just knew we would really like Dr. House. She was so right. He is a young, energetic, confident man who is a great communicator and looks you straight in the eye when he speaks to you. I like that in a person, even more so in the guy who is going to help my Toad.
He starts in by doing a physical evaluation of Johnny and tells us that he has studied the MRI that was performed here. He says, "The liver has significantly more involvement than what the PET scans demonstrate." There are multiple malignancies still growing in the liver and the process for ridding Johnny's liver of all the cancer will not be as easy as just cutting them out or ablating (burning) them. We were so upset when we thought there was a possibility of 6 lesions, so I asked Dr. House about the actual number that he saw. "More than 20?" I asked. "More like 12, maybe more," was his response. The problem, he explained, is that if there are 12 or 20, then why not 100? Microscopically, there is no way to tell what has yet to produce a lesion. There is no single section of Johnny's liver that isn't involved.
Minimally we are looking at an extensive operation with additional chemotherapy directed straight in to the hepatic artery. Potentially we could be looking at two very extensive operations with removal of the entire right lobe of Johnny's liver (the biggest part). All of this is conditional on the response of the lesions in the left pole of the liver; we need the left side cleared for anything to really work. The good news, he tells us, is that he has been involved with several patients with whom this process has been successful. Additionally, Johnny is young and otherwise healthy. His liver function tests are STILL normal -- Crazy, isn't it?
Fortunately, Dr. House has two options available to us. Two options going in makes us much more comfortable with trying either one of them. Both hold anywhere from 70-80% response rates. According to Johnny's math, that gives us a 140-160% chance! I love his math skills!
Let me break down the options for you:
OPTION 1:
- Surgery to remove the remaining ulcer in the colon.
- Clear the left side of the liver of as many lesions as possible (resection).
- Remove the gallbladder (This will die from the chemo, so best to remove it up front.)
- Insert a hockey puck-sized reservoir directly into the hepatic artery for infusion of the liver with intensive chemotherapy. Four months worth of additional chemo to the liver with additional systemic (through his existing port) chemo.
Pros and Cons of OPTION 1:
- Less involved option from the surgical standpoint.
- Least amount of native liver removed.
- New procedure that may require travel to New York once a month to have the reservoir filled.
OPTION 2:
- Removal of the remaining ulcer in the colon.
- Removal of the gallbladder.
- Removal of the left-sided tumors in preparation of the "future liver". This is the term Dr. House gave the left side because should the right lobe be removed, the left side will eventually regrow (Yes, the liver regenerates itself or this procedure would not be possible.) into the functioning liver.
- Embolization (cutting off the blood supply) to the portal vein to the right side of the liver.
- Second surgery, approximately 8 weeks later, to completely resect the right lobe.
- Additional chemotherapy.
Pros and Cons of OPTION 2:
- Very extensive and involved 2-phase surgical process.
- Loss of 2/3 of the native liver.
- Chemotherapy is not infused directly into the liver.
Option 1 is our first choice. But, as I mentioned above it is a new procedure and very few oncologists are actually trained in the management of the implanted infusion pump. Dr. House is calling Dr. Ansari to discuss the possibility of having it managed here. If this isn't something that Dr. Ansari feels comfortable with, then we will look at other options which may include having the pump placed at the time of surgery, and going to New York once a month for 4-12 months to have the reservoir filled.
We could tell that this was the option that Dr. House was the most interested in, but of course there are roadblocks -- like getting to New York once a month. We told him that we have the most incredible support system at home and that nothing was impossible for us to do. Once we said that we are completely capable of getting there, his excitement in this option increased. I will drive Johnny to the end of the Earth once a month if it means I get to keep him. It is an outpatient procedure, so it would be a quick turnaround trip. Drive in, fill the tank, drive home. We could manage that in a weekend, easily.
Dr. House did an intensive fellowship at Sloan-Kettering involving this procedure and worked with the "father" of the technique. He said that getting in wouldn't be a problem, as a matter of fact he said he could get us in same day if need be. Seriously, he oozed confidence on this procedure. Very reassuring.
Starting with Option 1 leaves us with Option 2 open should the pump not take care of all of the lesions throughout the rest of the liver. Remember the two "BIG" lesions we were so worried about? Those are the "easy" ones according to Dr. House. "Cherry picking" is what he called it. Dang, I spent a lot of energy worrying about those two things, I could have spent my worry much more efficiently had I known!
It was just so much to absorb last night. Both Johnny and I had our brief meltdowns, but pulled it back together with the reassurance of Ginger in the backseat. (Have I ever mentioned how much I love my MIL?) This is not going to be easy. We know that. We also know that we have a HUGE support system who pray for us daily. You seriously don't know how comforting that is for our whole family.
So, the fight continues. We will never, ever give up. Please continue to pray for all of us, our entire families, and of course our medical professionals. We need you all now, more than ever.
Oh, one more thing: I have started a list for when we pack for the surgery. I am looking for suggestions of things I just have to take with us, for either Johnny, me, or Ginger. You know, things like our own tissues, chapstick, lotion, decks of cards. If you have a suggestion, please let me know. I want to be prepared!
Love, love, love to you all.
We love you guys!!! Let me know if you need anything at all! I can come drive some if needed or what ever... Just let me know.
ReplyDeleteAnything we can do to help, count us in. If you need someone to drive you...I know an out of work driver who would love an excuse to get out of town (Barry). For him it's cake- he use to driving 12-16 hours daily. If you want us to take the boys..I have an extra room since Casey left. ANYTHING, ANYTHING, ANYTHING- we'll do it. Just let us know. Love you guys TONS! We'll keep praying. Damnit
ReplyDeletePam...this whole topic sucks but keep writing. This is so amazingly detailed and accurate and thorough and I know how therapeutic it can be. Don't forgot how strong you are (and we know how strong Johnny is...)
ReplyDeleteOk. There are options and they sound like good ones and I LOVE Johnny's odds math! You are right when you say you have a huge support system. We will do whatever you need us to do. Huge is a good word to describe your support system. Remember the movie with Jim Carey where he gets to be God and all of the prayers that need to be answered are on sticky notes and the voices of praying people are in his head all the time??? Bruce Almighty, I think. I just keep picturing God waking up in the morning and heading down to his kitchen for some coffee and opening the kitchen door to find a room full of yellow post-its with prayers for the Toad (in various forms) spilling out of every corner and covering every surface of the room. THAT's how huge your support system is.
ReplyDeleteWe love you all and will pray until our yellow post-its spillout of God's kitchen and over into His dining room and beyond.....
Georgeann, Derek, Chad and Ryne Nolan