As I look around, there is a sofa, bed, kitchen, TV and other assorted furniture one can find on this site. You’d think I was in a hotel room and you’d be right. In addition to it being a hotel room, it is also a tiny slice of Limboland. We just left our meeting with renowned genitourinary surgeon, Dr. Christopher Wood at M. D. Anderson Cancer Center. He has given us sage advice, but not necessarily the advice I wanted to hear.
From studying my file, Dr. Wood told us about “another patient” (maybe a little tongue-in-cheek) of his who had “shopped around and found doctors who performed surgeries and treatments,” without anyone being in charge of a cohesive treatment plan. In addition to the stellar medical oncological treatment we’ve received at home from Dr. Andy Pippas, I guess Dr. Wood interpreted our attempts at getting opinions from the best cancer minds (including his) as a way to find doctors who would be willing to provide the surgery or treatment that we felt WE needed to have done.
I think Dr. Pippas would concur that I, after consulting with Jill, have made all the educated key decisions about every treatment or procedure we’ve had. Dr. Pippas wanted me to go on a TKI (tyrosine kinase inhibitor) systemic therapy over two years ago, but I refused to do it. Except for that one decision, we’ve pretty much been in sync regarding the direction of my care.
So here I sit in Limboland again. Dr. Christopher Wood, famous surgeon, doesn’t want to operate on me. “Yes, the money says that tumor on your adrenal gland is cancer. But, wouldn’t we look pretty stupid to put you through a big operation and it turned out not to be,” he said. “It needs to be biopsied here in our interventional radiology department first. If it is cancer, and we operate, it is highly likely that you’ll have a recurrence somewhere else. Because of that likelihood, my preference would be for you to be on a systemic drug for six months, or until you can’t stand it any more, and if it is cancer, THEN we’ll do the surgery to take the adrenal gland out. The systemic drug would likely shrink the adrenal tumor and would also deal with other problem areas that might exist outside the bounds of what we can now see.”
It looks like all my attempts to avoid a nasty oral cancer therapy might have come to an end. Dr. Wood’s nurse, Jan, is doing everything possible to have a biopsy scheduled early next week. We’ll know the outcome of that effort tomorrow. If we can do it early in the week, then we will stay out here and get that done. It is a two-day process. Regardless of the outcome, we’ll be able to leave to come back the day after the biopsy. If we find out the biopsy can’t be scheduled in a reasonable amount of time, we’ll have to come on back home and make another trip out here fairly soon.
I’m more than a little irritated that we were here until 10 p.m. last night to get a CT scan without contrast that was, according to Dr. Wood, “useless for determining whether or not there is anything going on with your right kidney.” That we stressed so firmly that we didn’t want to leave Houston without knowing exactly what is going on with Strainer and to be scheduled for a diagnostic test that wouldn’t provide that information really chaps my ass. I will be asking some pointed questions about that decision on the next conversation with Dr. Pagliaro.
There is good news, though. All the other diagnostic tests we had performed here yesterday are all in the clear. No issues with mets in brain, lungs or bones, the three places kidney cancer likes to go.
We have a follow-up appointment with Dr. Pagliaro on Monday at 1 p.m. If we’re able to get the biopsy scheduled early in the week, we’ll stay on out here and make that appointment. If the biopsy can’t be scheduled to our satisfaction, we’ll forego the appointment with Dr. Pagliaro and meet with him when we return for the biopsy.
In the meantime, Jill and I will do what we do best — enjoy each other’s company. We’re going to laugh, mock people, watch movies, look for great hidden restaurant gems, mock people and I will be sharpening my tongue for my next visit with Dr. Lance Pagliaro.
Jack Basset says
Mike, I know you ain’t thrilled, but it does sound like good news about your brain being clear. Lord knows your brain is screwed up enough already. I love you.
Mike Stephens says
Mike, Be careful if you mock any runners. You’re not as fast as you once were. You and Jill continue to be in our thoughts and prayers. Linda and I hope all goes well with the procedures you’re facing. Stay strong! I know you will.
Mike
Marquette says
If I can’t find a way to articulate what I want to say to you without cussing, I’m not gonna say anything….because I really want to cuss. I’ll just say ?!}^%{#!?*#€£#+}%. And I KNOW you know what that means. Now, for as to what you’ll do in the meantime, I can’t imagine you and Jill mocking anyone…or should I say mocking others WITHOUT all your OPPs buddies. You could surreptiously take photos, text them to me and Callie and then we could send our comments back. Walmarts a great place to start, mostly cause I know you won’t patronize them.. The store I mean, cause I know you’ll patronize the people 🙂 nothing changes how we all feel about you and miss you both. Prayers go up several times daily, Callie and I longingly look for you so someone can abuse us, or drive us to lunch., both of which you should be doing I stead of having to jack around there. We love you. Keep the faith and look for something tonight in your emails.
Callie says
ARGH! I wrote out a long, strongly worded rant about the condescension of some doctors, but decided I was preaching to the choir. I’m convinced that you are still with us BECAUSE you are an informed, empowered, opinionated patient. Sharpen your tongue, Mike! Tell Dr. Pagliaro your disease may be indolent, but it is still life threatening, and you need some answers. (After he looks up indolent, maybe he’ll get in gear and make something happen.) Whatever the schedule and whatever the decisions, the Venable Network is here, cheering you on … and wishing we were eating some of the great food you’ve been writing about … TEASE!!
Enjoy Jill and enjoy Houston! Miss you both!
Callie
Bob Best says
I just read your blog today as I have since you began posting them. I have always believed (and have living proof), that the key to any man’s success is a good woman! I have never met your wife,Jill, but after reading so much about your trials and tribulations with this ordeal,she is always by your side! To me this is how you are going to beat this. I pray for your good health and Jills as well, you truly have married “the best of the best”. God bless you both, your friend Bob
Fletch says
V-Man and Jill,
Enjoy each others company and the “lovely” city of Houston. The truth is,(IMHO)sometime we need to hear what we don’t want to hear. A very wise man told me some 30 years ago- “nothing is so bad that surgery can’t make worse”. That man was my orthopedic surgeon. I “knew” I needed my new hip. He knew I could wait. Last month was the 22nd year I have lived, skiied, climbed, danced, golfed,ran( fill in the blank) on my “10 year hip”. I am glad I took my trusted experts advice. (Please note, I am not trying to put a hip on the same scale as your precious kidney.)
You are a very wise man and you’ve made some extremely wise decisions(none wiser than marrying Jill). I am certain you will make a wise decision on the systemic treatment. Don’t forget, a few short months ago you were eager to poison your system with HDIL-2,one of the toughest treatments out there.
We love you Mike and trust you will think for yourself, question authoritity and make excellent decisions with the wise counsel of experts. Can’t wait to see you upon your return! Much love to both of you. Fletch
Brenda French says
Dang if you do and dang if you don’t….Doctors…I am still waiting for two more to die before I write my book about Cobb Memorial and my glory days there. That being said….if you decide not to follow their advice you are noncompliant. If you seek a second or third opinion you are doctor shopping. Hello we only get one body and it is ours…You are your best advocate and I say stick to your guns…do what you think is best. I think I shared with you on facebook some time back that you need to talk to E-Patient Dave deBronkart. I met him through an IHI conference. He is a cancer survivor and all around smart guy. He too was upset that test couldn’t be scheduled more easily, that doctors and records couldn’t be shared more easily, etc. He got involved and did something about it. You can find him on facebook or http://epatientdave.com/
Be strong. Kevin and I are thinking of you guys and wishing you the best.
Ed Helton says
Thinking of you and Jill. Go eat at the Rajun Cajun and enjoy a respite from all things medical. Hope you are home soon.
Cyndy says
Mike! You buried the lead!
So glad to hear to hear about the tests that came up clear. Yes, the rest pisses me off, too, but the good news is damn worth celebrating!
Miss you!
Helena Britsch says
Mike, I had my adrenal whipped right out as soon as it showed a tumour. My doc said he was cautiously optimistic about it then popping up again somewhere else. The fact that you were told it would is very much out of order.
Sid Kaminsky says
Mike:
You and Jill hold on to each other for this unknown bumpy ride. You have a boatload of friends going with y’all.
Pyayers will be in full force mode.
Becky says
Prayers do get answered. No mets. Halleluiah!
Gerrit DeWitt says
Mike, we’re pulling for you! Glad to see that you’re still going toe-to-toe with the best of them! Would love to see some of your impressions of the people you mock!
This is my favorite part: “…mock people and I will be sharpening my tongue for my next visit with Dr. Lance Pagliaro.”
Barbara Motos says
Mike & Jill,
Jimmy & I are keeping you in our prayers. You know that you have a devoted network of friends–and former teachers–standing with you!
Love,
Barbara Motos
Ann Renner says
Mike and Jill, You guys are doing doing so well! patience has to be tough right now, but Mike I always remembered you as being one of the most Patient people I know. keep it up and Have faith. There are so many praying for you and Jill and the rest of your family. I don’t blame you for not wanting to do the drugs. That is for you and Jill to figure out!! Not the doctor’s body. it is your body. I did see a lot of good news in this blog and so happy for!! go people watch and make fun. If I could only share a story with you here you would roll but it will have to be by phone. Something mom and I saw as we “people watched” at Lenox. It happened last year but I still see it very clearly!!! it was a riot. Will share on chat or by phone. We all love you and you guys hang in there. Lots of love and prayers!!!!!
Jennifer Chappell says
Re: “nasty oral cancer therapy”, my mother, Delane, is on an oral chemo regimen that Dr. Pippas prescribed for carcinoid cancer. We were worried that it would really devastate her, but so far, it’s been really pretty good. She has more energy and still a full head of hair. Plus, still as feisty as ever. If that’s what you gotta do, it may not be as bad as you expect.