I have chosen to be transparent during my cancer journey. Part of that decision, as you’ve heard me say before, is a selfish desire for support. My community of readers has become invested in my family’s situation and if you’ve chosen to be a regular reader of this blog, you’re riding this roller coaster with us. Another reason that I’ve chosen to write about all this stuff is that writing about it helps me to organize my thoughts as I research what my very able team of doctors tell me I need to do to get well. Though I don’t doubt for a second the advice they give me, I have to be able to understand how that particular test, drug or treatment is supposed to work for me. If I have that understanding, then I’m not only receptive to the treatment, but I’m able to intelligently contribute my voice to my overall regimen of care. A motivated, engaged cancer patient is a mighty important ingredient for a good outcome.
The other reason to research and, for me, to write is to calibrate my bullshit meter. When I walk into my doctor’s office I will have made every effort to know as much I can possibly know about what is going on. When I first met my nephrologist, Yale trained Dr. Raj Alappan, Jill got a bit uncomfortable as I peppered him with questions. She spoke up and apologized to him for my barrage of questions. I remember that he laughed and correctly stated that he knew what I was up to. He said, “Mike’s just trying to see if I know as much about this as he does.”
My point is that you can be fat, dumb and happy if you’re in the doctor’s office talking about the flu, but if you’ve got a cancer diagnosis, you’d better be ready to study because when it gets right down to the nut cutting, you’re the one who will make the decision about what care you receive.
Which brings me to where I am right now, at another crossroads. I subscribe to a forum where some 2,000 people from all over the world who are either RCC patients or people who are living with or helping to care for someone with renal cell cancer write about their experiences. On that forum we discuss treatments, insurance issues, doctors and how we’re feeling. Forum administrators keep the discussion on topic. I have discovered a mountain of information and a whole lot of satisfaction from the knowledge that the person I’m talking to has walked a mile in my shoes.
Since mid-June of 2009, I have been a regular daily reader of posts to this forum. They’re pushed to my Blackberry and I can sift through them by title and only read the ones in which I’m interested. Since I always thought my next course of action would be a treatment called high-dose interleukin-2 (HD IL2), I read every single post that came across on that subject.
Now it seems that a different direction may be warranted and I’m struggling to get up to speed before my 7:15 a.m. Monday morning appointment with Dr. Pippas. Here’s the good news about the last 6 days. Despite the fact that it is very likely the pathology report from the Thursday biopsy on the spot on my spine will show positive for renal cell cancer, I have confirmation from CT scans, a bone scan and a brain MRI that this small tumor in my spine is the only active metastasis in my body. HD IL2 is a very difficult systemic chemotherapy treatment that would be used if I had multiple mets, particularly in my lungs or brain.
The prevailing wisdom from my research is that I should hold back on the HD IL2 and utilize stereotactic radiosurgery to treat the single metastasis in my spine. So, this weekend will be spent studying radiation therapies. I talked to Dr. John Cabelka at the John B. Amos Cancer Center.
John and his colleague, Dr. Doug Ciuba are in the midst of a major $10 million upgrade to the radiation oncology equipment at our cancer center. The new state-of-the-art equipment that could be used to treat my RCC is still 6 months away from being online. A bone metastasis of RCC is resistant to elimination by lower level radiation therapy. It takes powerful stereotactic radiosurgery to do a proper job on this type of cancer. So, I’ll have to go elsewhere for my treatment. I can’t wait 6 months to be able to have this treatment locally. Drs. Cabelka and Ciuba have weighed in on my situation and they recommend a top-notch radiation oncologist at Emory in Atlanta, Dr. Walter Curran.
Our brilliant Dr. Andy Pippas was recently named a Georgia Cancer Coalition Distinguished Scholar. That award came with a $5oo,ooo research grant to further his clinical research. Dr. Curran is also one of those GCC Distinguished Scholars. We are so fortunate to have world-class cancer care in Georgia. Kathelen Amos is another local cancer warrior who is the current chair of the Georgia Cancer Coalition board of trustees.
If Dr. Pippas blesses this change in direction, I’ll meet with Dr. Curran this coming Wednesday morning at 9 a.m. when I hope we’ll get about killing this cancer in my spine. This treatment is highly successful in most cases and doesn’t come with much in the way of side effects. I might have to have infusions of a drug called Zometa for a year or so to strengthen my bones and prevent other bony metastases from developing.
This is all I know at this point. Although getting this setback has been devastating to us, things could be a whole lot worse. A single spine met is much more treatable than being attacked on multiple fronts in the lungs, bones and brain. I’m going to be thankful for this apparent single enemy and makes plans to take it out. Soon.
I apologize for the length of this post. Some of you may have already bailed before you got to the end. But, if you’re still with me right now, I’m going to be honest with you. I intend to write every word of this journey because I don’t want the next person who hears those words from their doctor, “This is cancer, Mike, I’m 90 percent sure of it,” to feel they’ve got no place to go.
To all of you who have posted on this blog site, in emails and on facebook over the past few days, Jill and I thank you. It is a humbling experience to know so many people care about you. That is the beauty of our developing social media world. We are enveloped in the arms of a loving community of friends and complete strangers who are walking our same walk. If you’ll keep reading, I’ll keep writing. And, I want to say again, that we’re trying to get the email notification system on the blog working correctly. I will get there. But for now, I hope you’ll be patient if you get multiple notifications or no notification of a new post.
We’ll all get through this. Again.
Mike, You amaze me. I think you are ready for your medical license. Prayers and support from me.
You all are in our prayers dear friends. If we can help with the magazine in any way, we are ready with whatever we can do. Right now, we will just continue to pray.
Much love, jodi and james
We are definitely reading….and then praying as hard as you are researching.
Mike !! Don’t ever apologize for the length of your blog…My prayer is that Dr. Pippas will,as you say, bless this treatment ,and we can begin the fight asap….We do have the most wonderful Doctors in the world !! I know of none better anywhere, and thank God every day for them and the JBA Cancer center.
You certainly are a testament to Second Timothy 1:7. I clung to this scripture ( and many others, but this was-is-my favorite), and still do. AND you are right…We’ll get through this together….
You are an inspiration to us all…
Yes, it absolutely pays to be as fully versed as you can when you go in there, and I commend you for that as well as many other things you have done in your situation. However, not to sound like Julie Chen on “Big Brother,” but you goatta ‘expect the unexpected,’ and remember Dr. Pippas may know something you haven’t found yet, or a treatment in mind other than the two you mentioned, or another diagnosis of the spot than RCC, or. . . .
All your research will reduce the unexpected, but not eliminate the possibility.
Now, a question, and I apologize if I missed the answer somewhere between the phaseout of your participation on carepages and my picking up on this blog, but others might be in the same fix: Are you now privy to find out which of the treatments you received in the blind clinical study you were a part of?
Keith, if the pathology report comes back positive for RCC, Dona Ferguson will contact the manager of the ASSURE trial and I will be “unblinded” and told which of the trial arms I completed. Then, all bets are off and I can pursue treatment. I found your comment most interesting because one of the speculations that Dr. Pippas proposed at our last appointment was that maybe I was indeed on one of the therapeutic drugs all along and that could have been a reason for my NED status. That the drug had held the cancer at bay.
Monday will be an interesting day.
OK, this dummy will bite. “NED” stands for what, now?
mike, I will be with you everyday and every step of the way. writing is healing and you are already on the road to recovery with your determination and positiveness. we will all be on this journey with you and sending out lots of prayers. I am a phone call away. All my blessings mp
No Evidence of Disease. Sorry about that. Cancer-speak.
Mike, you are surrounded by a growing group of friends and supporters. We hold you in our thoughts and hearts and prayers. You are doing all the right things. Keep doing them. And keep writing.
Sybil and I will keep you and Jill in our thoughts and prayers.
Keep up the best blog in the region.
Read every word and I’ll keep reading for sure. Sending positive thoughts and prayers your way.
Mike, I for one read every single word and appreciate it for what it is. I hear you loud and clear my friend. And you are correct about having exceptional medical care in our hometown. It helps so much NOT to have to transplant at such a time of need. And the beauty is that friends bless each other —- and you and Jill have many.
it’s ok to cry, right??? but these are tears of total admiration of how your are handling this…but more importantly WHO is empowering you to be this open, honest…and OTHERS FOCUSED! don’t you see, world, that God is only interested in our true heart…a foul-mouth once in a while is totally understood! 🙂 we serve an awesome God and Mike, you are totally serving as you ride this rollercoaster of RCC. selfish you are NOT. reaching out to your community of faith, family and friends is STRENGTH. we have been here for you and will continue to be. attitude is everything!
Thanks for keeping us up to speed! Hugs and Kisses, Your wife’s favorite sister!
Fred & I are in the car right behind you on this roller coaster. May God guide you as you and Jill walk this path.
We’re pulling for you Mike. Keep the words coming, it keeps us in the fight!
You continue to astound me. You still make me cry – but now it’s because of the inspiration of your strength, the eloquence of your writing and the beauty of all the family and friends who love you as I do.
Ned is a good guy.
Mike,
You have to keep writing or it wouldn’t be you! I will continue reading and praying and I know that you and Jill and family will make it through. You keep researching and asking questions — that is what I did when my Mother faced cancer and even though her doctor told me I shouldn’t research I continued to do so — so I would know what to expect and ask. Mine, Libba, and Jud’s prayers are with all of you and we know that you will fight and win! God is watching over you!
We remember you well, Mike. Thank you for being open about everything.
You always were a brave one.
Mike,
I pray for strength and courage for you.
You are an inspiration in your writing and to us all…
Mike-
Just found your blog. I have really missed reading your writings on Care Pages. I will continue to pray for you and read your words. I will also be cheering you on when you come out with a wonderful book for people facing cancer in days to come! May God bless you and Jill as you walk this road.
Miracles unleashed. Prayers answered. Joy unfolds. Love uplifted. Peace, LeAnn
Yes, Mike, you will get through this. Again. I’m just so sorry that your have to take on this battle. Again. Follow the advice of my good buddy, Dory: just keep swimming, just keep swimming, just keep swimming…
love and prayers to you! Marguerite (I’ll be up and praying at 7:15 tomorrow morning!) just keep praying…just keep writing…just keep swimming…
Mike- You are always an inspiration to all of us. Without you writing and letting us know it would not be real and that is what people really need. You hear about conditions but you don’t live them. We need to know what is going on and how you are dealing with it you never know what is in any of our futures. You are a great communicator and giving a gift to all of us. We will learn to be strong. The uncertain is what we fear the most.
You are never alone. God bless you. I Love you! Cathy
Mike:
Ed and I are praying for you every day. I appreciate the amount of time you have taken to update all of your friends through this blog. You are truly amazing. You are also strong and remember that! Good luck with the latest treatments Pippas has planned for you. We love you!
Mike and Jill, still keeping up with your posts and please know Paul and I are still keeping you in our prayers and always in our thoughts each day.
Mary and I are keeping up with you Mike– and you have our hearts and our prayers! We will continue to give updates as people ask after you on Wednesdays.