This is the time where it would be advisable for someone to lock me in a closet for a couple of days. Lock me up and render me unable to type, so I won’t say something stupid and burn a very important medical bridge. Here I sit, feeling like I’ve been dipped in hot french fry grease, itching from the top of my head to the soles of my feet. Looking around and nobody’s come to lock me up, so I’ll continue.
<Pause>, while I argue with myself.
Should I say it?
Maybe I shouldn’t.
Hell, I know I shouldn’t.
I’m trying so hard to keep this disease from making me irreparably angry. Irreparably, as in I can’t recover from it and return to being a non-angry person. A little anger is a good thing. But, if I can’t recover from it, I’ll become Jack Basset, and I damn sure don’t want that (even though I love Jack Basset and he’s never been angry with me…until now).
I have now been officially told that I’m not going to be given another dose of HD-IL2 at Duke. That my creatinine soared too high during the therapy and that it didn’t rebound back to baseline quickly enough after the last dose was given. I’ll reserve comment on that for now (an uncharacteristic show of discretion).
Here’s what I have asked Dr. George:
• What are your plans for scans to determine whether HD-IL2 round one, part A’s 9 doses have benefitted me?
• If those scans show efficacy, what will we do next?
• If those scans show disease progression or disease stability, what will we do next?
• What about the tumors in my left adrenal and right kidney? Is there a surgical option to remove them and under what conditions?
These are the questions I’ve posed in an email to Dr. George this afternoon and I’m waiting for his reply.
I’m particularly agitated right now because I’m so itchy, but I also feel untethered. Dr. Pippas has spoiled me. When I was (and, technically, I still am) under his care, he made me feel like I was the only patient he had. This is a gift that man has that is more valuable that gold. I felt connected to him. He had my back. He always knew where we were and knew what to do next if something went awry, and he communicated that to me when we talked. And, we talked often.
Right now, I feel like I’ve been thrown out of the community pool and I’ve got a hankering to swim, but I’ve got no place to do it. I have active tumors in my body and with the news I got this afternoon, there isn’t a plan in place to deal with them. Dr. George may well have a plan, but as I sit here right now, I don’t know what that plan might be. I don’t like feeling this way.
I know I’ll hear from him, even though it wasn’t on Tuesday as I was promised. What I have to realize is that the Duke operation is a large, regional cancer center, not a community cancer center. That comes with all sorts of volume demands on the gifted doctors who practice there. I marvel at how much these doctors have to do to manage their case loads and still have time for research. I know all of that. But, I am fidgety as hell when I want information and it comes more slowly that I want it to. Right now, I am just fidgety. And itchy. These things don’t play well together.
I either need a tall glass of Woodford Reserve bourbon…..
JUST HEARD FROM DR. GEORGE: We have set up a phone call for tomorrow afternoon. He’s got some time when he’ll be traveling (not driving) in a car that we can talk. I expect much will be accomplished with this call and that I’ll have some direction about next steps.
or a massage, or some sleep, or to be dipped in a large vat of motor oil, laced with coconut butter or all of the above. I probably should just throw this post out and start over, but that would be dishonest. I intend to chronicle my life with this cancer, the good parts and the bad parts. This is one of those not so good days and I feel like I should talk about it.
I am looking forward to my talk with Dr. George tomorrow. Maybe the pathway will become clear again. I need for that to happen.
Marianne says
Sorry to hear they are saying no more. Fingers crossed Dr. George wil have positive ideas for you.
virginia pope says
So sorry you have had such a difficult time.
hope it helps to know we are praying for you and jill.
Mary Choi says
God Bless you Mike. I think of you everyday. Nothing else to say..just want you to know that you are not forgotten.
Jim Thomas says
No need to apologize for being angry. If you don’t have a right to…. Then no one does.
Let it rip.
Carter Seaton says
Hang in there Mike! The good doc still has your back…and so do all your friends, including the Big Guy in the Sky.
Jan Venable Davenport says
Glad you’re still feisty 🙂 Looking forward to what Dr. George has to say…….here’s to clarity.
Jane Bayer says
You are a brave person to write so honestly about this journey, and you are an inspiration to others. We are praying for you and Jill.
Sandy says
Mike – this may not be an option you even want to consider BUT I feel I know you well enough (after @50 years of friendship) that I can pose a question that I would want to know the answer to if I was in your position. “Doc, what if I am willing to potentially sacrifice my ‘good’ kidney to the drug if it shows I had a positive response to the HD-IL2 and I want to continue?” If thats not an option, I would want to know it was off the table and that there would be no second guessing myself or the Docs later. Love you! Praying without ceasing!
Patty Branch says
Mike, I am sorry. I know that that wasn’t the news that you wanted to hear. I do understand how it feels to feel miserable and nobody seems to be able to have a help plan! I pray that Dr. George will have a great positive plan for you tomorrow! Stay strong and know that I am praying for you! Remember God is good and gracious. Lean on him for your strength and peace.
Love to you and Jill!
Donna says
I don’t know this will help but I’m feelin about the same..(except for the itchy part) Im 11 months in stage IV clear cell & my onc up & left…(he made me feel safe) just had scans on monday….trying to stay afloat…..at least I know I’m not alone. All we can do is hold on this bumpy ride as best we can & hope for the best. Good luck & prayers for the both of us…..
Gwen says
Lots of prayers for you and Jill.
Patti Trotter says
Praying for a positive conversation with the doctor tomorrow. I’m so sorry that you aren’t able to move forward with the treatment.Don’t apologize for anything. You are one of the most courageous people I know….and an inspiration to many. I continue to pray for you all through the day. We lifted you up tonight at services.
Doug Sumrell says
What if your creatinine goes to normal next week? Can’t they admit you to Duke again?
Sorry to hear you are having such a bad time. Your strength inspires me.
Doug
Jack Basset says
Well, I get pissed off because we have a president that I don’t think this country deserves, I make a number of comments about this and Mike decides that I’m the personification of “angry.” Now Mike gives me one more reason to be angry. Mike and all of us who love him don’t deserve his damn cancer either. I want Dr. George and all the Duke professionals to give Mike more hugs and a lot more information or I’ll get angry with them too.
Callie says
If I were a good friend, I should probably write something supportive and bolster your attempts to ward off the anger and other negative emotions, but I don’t want to. Instead, I want desperately to write all that you haven’t. I want to start with a few paragraphs of “Why Mike?” followed by several pages about how “He just can’t catch a break.” Then a long rant, “Hasn’t he been through enough?” concluding with a detailed list of “All the things docs need to learn in medical school but are never taught.”
You and Jill amaze me. You keep the needle centered on normal (well, your wacky version of it) and positive, when I’m sure I would be flying off the charts–a sobbing puddle one minute and a raging lunatic the next. Come to think of it, I already fly from puddle to lunatic on a regular basis, and I’m not even fighting for my life. I don’t know how you two do it.
While you are wise to maintain the bridges to the medical community for your own best interest, I hope you will feel free to yell and scream and cry to your friends and family. We’re with you. We get it. You can tell by the responses you get on this blog. We all want to second guess the docs and plead your case. We all want to rail against the unfairness of it all. We all want to weep … well, I can’t even write that.
You two have set the bar so high. Just know there are many of us who would have no problem if you dropped it several notches from time to time. We’d be happy to pour the Woodford while you yell, scream and cry. Just don’t be surprised if we join in and yell, scream and cry right along with you.
Hoping for encouragement from Dr. George for you tomorrow and an itch-free night tonight.
Kisses, hugs and rants,
Callie
David Adams says
I have no words because I can’t think of any that would be appropriate. Only know I am & will continue to pray for you & your family.
Bob Ludwig says
Keep the jab going and your guard high. It is okay to take a nip between rounds. You’re only one good upper cut from decking this guy. Stay feisty and out of the corners.
Lynn says
PRAYING! Love and hugs to you and Jill.
Debbie Seeley says
All has been said, only when all of this s*** is over, I want you to write a damn book. And I want you to title it “Why I Wrote This Damn Book”. I feel you should have MD behind your name because you are a plethora (I just love that word) of walking knowledge. You go with your gut, and we all love you for it!
Hugs,kisses and arms around you and Jill!
Perry Ann says
Durn, you wrote all the possible treatment algorithms out so clear , even I understand them!!
I like your thinking. Yeah, sacrificing Strainer for the cause was big thinking
You and Sandy Gunnels are quite a combo 🙂 and should probably not drink a lot of wine together!! Ha
I have been itchy in solidarity. Keith calls me Fidget.
Always here for ya!!!! PA