I don’t know quite where to start. So, let’s do the uncharacteristic thing and just get right to the point and maybe that will spare those of you who’re not interested in my usual stories, incessant details and dramatic setups. After all, life is short and sometimes it just makes sense to eat the dessert first — especially if you’re suddenly able to taste it!
This past Thursday afternoon, Jill and I met with Dr. Andy Pippas at the John B. Amos Cancer Center here in Columbus, Ga. The previous week, I had submitted to yet another painless blood draw at the hands of the one of the fabulous phlebotomists in the lab there at JBACC. I was hydrated, also during that week, and had CT scans (with contrast) of my chest, abdomen and pelvis. Just two weeks before that, I met with Dr. Raj Alappan, my nephrologist. The point is that I had fresh labs, scans and updated reporting from the person who is helping us watch over Strainer, my only remaining kidney. All of my systems have been checked and the news we got on Thursday was current and as accurate as modern medicine can make it.
Dr. Pippas gave us the news that we’ve been hoping to hear after living through 15 months of raging hell. “Mike, at this moment you are cancer free.”
He said it, despite the fact you’ll not hear me say it. I prefer NED, no evidence of disease. Not sure why, other than NED seems less provocative. A little more humble as I stand in front of the open curtain staring up at the feet of the “All Powerful Cancer,” complete with flashing lights and smoke. I’m sure as hell not the Cowardly Lion. Despite my fears, I have not been any kind of a coward through this thing. But I’m a little superstitious and just not a fan of appearing too cocky in the presence of something that has the power to kill me or strike me down.
All that said, I appear to have been hugely and wonderfully responsive to Votrient, the powerful tyrosine kinase inhibitor drug I have been taking for the past 15 months. My adrenal tumor is gone. The apparent tumors in my right kidney are gone. The tumors in my spine are gone. I have no tumors in my lungs or in my brain (the places kidney cancer cells love to invade).
Looks like the loss of a hundred pounds, the loss of the cuticles around my fingernails, the loss of ALL the pigmentation in my body hair, the chronic daily diarrhea, the almost daily vomiting, the maddening itching of my skin, the inability to taste food, the ever-present brain fog and some peripheral neuropathy in my feet were all worth enduring to get the news we got from Dr. Pippas on Thursday. We are thrilled at this wonderful news and extremely grateful to our medical team, our prayer warriors, our friends, our church family, our family and all the legions of people who are concerned about us and who have found so many ways to let us know that they care. This is epic good news!
I asked Dr. Pippas, “What do we do now?” “The good news is you’ve got a couple of options,” he said. (This may get a little tedious, but this blog is about what it is like to LIVE with cancer, so I’m going to take some time to let you into my thought process. You’re welcome to read as much as you can stand.) Here are my options: Since I am now almost at a month off Votrient, we can go back on a “maintenance” dose of 200mg daily to try to extend the reprieve from actively growing cancer. That isn’t a great option, because as I tapered off the drug back in January, I was actually as sick on the 200mg dose as I had been on the full 800mg dosage. Why would I want to do that? Well, I don’t.
The next option is that I can stay off the Votrient and be extra vigilant with CT scans every three months for up to a year and reevaluate again at the end of the year. This is a better option, because the prevailing wisdom (although this wisdom is only anecdotal, as there isn’t any real data to support it) is that for people like me who are excellent responders to the medication, there is every reason to believe we’ll respond just as strongly when and if the medicine is restarted. Andy strongly cautioned me about a couple of things if we choose this option. Although my taste buds have blissfully re-awakened, I have to keep my weight down. My daily routine needs to embrace a spartan diet, mostly vegetarian, with an occasional splurge to keep from going crazy. He wants me to keep my weight at or near where it is today. He also wants me to add back as much exercise as I can stand. Bike riding is a definite. I also need to be lifting some light weights and walking. I’ll need to get myself motivated to get this done. Plus, I’m still really weak from the pounding my body has taken over the past 15 months.
Dr. Pippas is in communication with our medical oncologist at Duke, Dr. Dan George, who is familiar with my case. I’m also making contact with Dr. Hans Hammers (through a friend) at Johns Hopkins in Baltimore who is a world-class kidney cancer specialist. When we get those pieces of feedback, we’ll sit down with Dr. Pippas and make up our minds about what we want to do. My guess is that we’ll likely choose the second option and stay off the Votrient and remain hyper-vigilant going forward and hope and pray the cancer will leave me the hell alone.
I feel like a new man right now. I feel my strength coming back. Next time you see me, take a look at my eyebrows. My hair is beginning the process of growing back in with color. If I get to stay off the drug, the pigment will come back into my hair and it will grow back in some darker shade. Maybe it will be straighter, or curlier. We don’t really know what to expect. I’m just happy to begin to see some hope that my daily prayers of being able to get old with my Jill, see our sons find love and hold a grandchild or ten are looking better. Thanks be to God!
Thanks to all of you who are following our progress. If you know of anyone who is struggling with cancer, especially with a kidney cancer diagnosis, please forward a link to this blog to them. Those of us who are living with cancer need to see that the news doesn’t always have to be bad. Although, it damn sure feels like it sometime.
Great news!!!
What wonderful news Mike!I like the sound of NED too. Keep strong. Mo
Praise God!!!!! I am thrilled for you Mike! Answered prayer for sure!! I hope you and Jill can go do something awesome and celebrate! Wahoo !! Love and hugs to both of you! Xxoo
Great News. Oh happy day! what a journey you’ve been on.
Mike I am thrilled to hear this. You have been such an inspiration to everyone suffering any kind of cancer. I have followed your posts with interest because I have very fond memories of working with you so long ago. You were great to work with and I wish you a long, long, long life free from this terrible burden you have endure for so long. Good luck and God bless!
Mike, as a two-time cancer suvivor, I know where you are! I’m so proud of your news! I’ve been cancer-free for six years, but a day doesn’t go by that I don’t thank the good Lord for his healing!
Mike I am over the clouds happy for you right now! Enjoy this wonderful news,..celebrate endlessly! This is truly fabulous! Congrats!
I am so happy for you Mike. This posting has absolutely made my day. I can feel the joy that you must be experiencing. I hope that you have already gotten to enjoy that juicy steak you were craving. Life is sweet! Congratulations my friend.
PS Thanks for introducing me to that delicious Vietnamese restaurant uptown. I absolutely love it!
Outstanding news Mike! The feeling that you get when you hear the words “you are cancer free” (or NED)can bring such a joy of relief to you! I am so proud that you have reached this pinnacle!! God is so good!!
Mike I am so happy to hear the news! A true answer to prayers. Now maybe we both can find some time & get together for the first time in what about 30 years. Hard to believe it has been so long!
PTL! I like NED. Prayers for continued good news and plenty of required motivation. 🙂
Dear Mike and Jill,
I am almost speechless…and that is a rarity…and teary-eyed which is NOT a rarity!!! 🙂 I have prayed so much for you and asked God so many times, if it be His will, that since He is still in the miracle-working business to PLEASE put your name on one of them! I have referenced your army of prayer warriors different times during this journey and I give Him all the praise, glory and honor for answering the cries of all of our hearts <3 Congratulations on defeating this enemy! You have taught us all how to battle with strength when you had none, hope when it may have seemed somewhat hopeless, humor when there was very little funny, and love which you knew that, without a doubt, you were surrounded by and undergirded with. Thank you for life lessons that will remain with me for my lifetime, and for the smile in my heart and on my face tonight!
So happy to hear this. It was only an hour or so ago that I was thinking about you and was going to check with Jill tomorrow to see how you’ve been since off the meds. I checked my emails and saw you had posted this blog. I was thrilled to read this. You will have no problem doing what they want you to do. Just look at what you have already done.
What a happy day! Thanks be to god and your cancer-fighting team.
We have no words — just smiles from ear to ear. We love you and Jill so much. Mike and Pegi.
Mike and Jill, this is wonderful news. Bob and I are so happy for you. My old Mike is coming back. Now we have to get one of those boys married and get us a grand baby! Oh how spoiled it will be. I am just so happy right now. God is good and prayers have been answered. Love to you both. Bob and Beth
What wonderful wonderful news!!! So happy for you and your family!
Thanks be to God! Happy to hear this wonderful news!
Fantastic, Mike! I’m so happy for you and Jill. Mighty thankful!
Mike and Jill, how very exciting. You are a true warrior. Now as we continue to pray for you as you to follow doctor’s orders please continue to pray for Jerry Smith, our brother-in-law with pancreatic cancer, so that hopefully he will have the wonderful news that you have just gotten. Our love to you and Jill.
Hey Mike, wow that is awesome really great news!!! Praise God for many prayers answered, Roger
So very thankful to hear your good news. God is good. Judy
I just don’t know that I can tell you how happy this news has made me. You’re one tough dude!
Praise be to God !!! So thankful for great news !!!
Wonderful, wonderful news!
Praise God!!!!!!! Greatest news ever!!!!!!!!!
Mike and Jill, What wonderful news!! We are so happy for you!! What a wonderful blessing for wonderful people and family! Love to you all!!
SOOOOOO HAPPPPY !!!!! Love you……;)
Could not be happier for you and Jill…Just thrilled!! Thanks be to God for this wonderful news.
Great News! proud to know you. You are an inspiration.
Let the church say AMEN! This is such fabulous news! My husband, Jan, had a cancer diagnosis last April and has been through chemo and radiation, all at the Amos Cancer Center. Dr. Nukala and Dr. Catherine Ferguson have been fabulous, as have Beth Bussy and Taryn Satterfield. We have not encountered one negative or unpleasant employee there. Jan has also received good news regarding his cancer. We, like you, are so hesitant to use the words ‘cancer free’. It’s just too cocky! Your prayers and diligence have been answered with this good news. We can respond to this great news by living our best life every day. Congratulations! Enjoy every precious moment.
Congrats ~Mike!!!!!!!!!!!!!!!!!!!!!!!!!!
Praise God. So glad for y’all!
A big AMEN!! Gene and I are just amazed at all you’ve gone through and all that you have shared with everyone. NED is fantastic — but I will still keep adding you to the prayers I say for my kids. Every night I ask that you all “Be happy, healthy, long-lived and productive”. I think that covers most bases. For the kids, though, I will add “Courageous in the bad times” Just like you, Mike, and your lovely wife Jill. You are an inspiration to all of us!
BestReport Ever!!!!
Mike,
You are a warrior, and I am so happy for you and Jill. I love you guys.
I just feel like squealing! Enjoy every minute of your new life with NED.
Beyond happy for you. This post made my day!
That is just awesome!!!!!!!! Praise God!!!!
Wow! What wonderful and happy news Mike. Just made my day and I KNOW it made yours!!!! Love to you and Jill.
Praise God from whom all blessings flow!
What a compelling story of belief, commitment and determination. A truly exciting day for you and all of us you have taken on this journey. God has wrapped His arms around you and Jill for a purpose. Giving others insight and hope may be the answer as to “why me.” So happy for you my friend.
Mike! What great news. We are so happy for you and Jill! Praise be to God !
Mike, that’s awesome news. Wow, that’s answered prayers for so many folks. You truly are amazing! God bless you both! Give Jill our love!
I am just thrillled that is other ioption you have chosen. Seeing you off of the Votrient, back to yourself, made me so happy. It was so good to see you back to yourself, full of life again. You are in my prayers every single day.
That’s wonderful news. God bless you and keep you safe and healthy!
Great news. Let us know when you can have that steak . Be proud to furnish a tenderloin or a slab of ribs. Best news we have had in some time.
Dear Mike, Mary and I are so happy to hear this good news! May God continue to bless you and Jill.
PTL!!! Awesome news! Love y’all.
Really great news, Mike! I think your good report and positive attitude go hand in hand. Keep it up!
Mike, great news for you and Jill. I’m thrilled for you. Look forward to seeing you out eating around town!
This just made my day, Mike!! Praise be to The Lord!! What a blessing!!
What joy! A wonderful way to start a Monday and a week! You and Jill have been amazing. What a testimony to love, courage, faith and perseverance. No one could be happier than I am to hear this. Can’t wait to give you a big hug. Thank you God.
Wow! Wow! Wow! Am sitting here trying hard not to tear up. What astounding news and so, so, so happy for you and Jill! So many arms around you, Mike, so much proof that God works miracles! I hope you live to be 105!!! I also hope you spit in the face of cancer and smack it right to Hell where it belongs! My heart is just bursting for you!
So very, very, very happy! Thanks be to God! Both of you will remain in our prayers. Yay!
There have been times reading this blog when I have closed my eyes to words I did not want to see. But today, when I sqeezed them shut, it was so I could open them again & be absolutely certain they weren’t deceiving me. Hope fulfilled is a beautiful thing! May the Good News enjoy a very, very long run. xo
I can’t find the words except to say: Wonderful wonderful wonderful wonderful news!!!!!
I’m so proud of you for living through what you and Jill have had to face and maintaining a decent attitude. You are both exceptional people. I love you!
I do have tears of happiness, joy and lots of love for you—-Mike and Jill…I think of the song “God will take of you”!!!
Wow! Just Wow!! So happy to hear this wonderful news. Welcome back to LIFE!! 🙂
This is GREAT news, Mike! Not that I need to remind you, but stay vigilante. You have a lot of us on your side.
If anyone deserves a reprieve, it’s you! I have been no less than astounded at how well you tolerated the relentless nausea and exhaustion, 24/7 for months on end. Through it all, you managed to maintain your sense of humor, your concern for others and your drive to live a good life. You never lost the essence of who you are. But what a thrill now to see the glint of joy return to your eyes, to watch the color flush back into your skin, to see you vibrate with your energy at full tilt. Congratulations on your NED status and your triumphant return to full Mikeness. May you enjoy many years of clean scans and Mikeful living!
Much love,
Callie
Sharing in your joyous news!!! Praising Him for healing. Prayers will continue for an EXTENDED remission or NED!!! What an inspiration your writings are!
You are the two toughest people I know. You earned this diagnosis by working like hell (and THROUGH hell) to get here. This is a major Life Trip, and we’re buzzing.
Mike, this news is amazing beyond amazing! I can’t tell you how happy I am for you. I cannot wait to meet those grandbabies!! Prayer is powerful! I rejoice with the many people who know and love you. You, Eric, Clay and I must celebrate. I’ll let you know when Trower is in town! with Love, in Him
Mike, along with those ten grandbabies, I wish for you a big equal helping of CATS and at least one victory over Uncle Bob on the tennis court!!!
I am so glad to hear about your news.
Love
Björg
I don’t know where to start…. Yes I do! THANK YOU GOD FOR THIS MIRACLE YOU HAVE GIVEN MY FRIEND! Thank You for the medical staff you surrounded him with and the researchers and developers of the treatments….. Lord just THANK YOU!!!!!
Great news Mike. I hope you and Jill can now lead a normal life. You deserve it.
Alleluia ….oh boy …oh boy….sooo happy wonderful news. Bob and I read together and are in tears…love to you and Jill ….if you need some curly hair ideas ….I’m your go to person.
Carole and Bob
Fantastic News ! You are such an inspiration, we will keep praying for you continued recovery! Patty and Larry
I have been away for a long weekend and came back to an e-mail saying you had updated your blog! I cannot tell you how happy I am to read such phenomenal good news this morning! You are a true warrior and you have the best battle partner ever. So glad that the two of you can now have a reprieve from that battle and I am praying that it is a FOREVER reprieve!Praise God!
Mike, That’s fantastic news! Andy probably doesn’t realize that I need your weight to change regularly (so you’ll need to buy new clothes)
!
You said it best, Mike…”Thanks be to God!”
Mike, you are a real inspiration to us, especially to June and her current challenges. Keep the good news coming!
Such great news! Answered prayers. I am so happy to hear this. It is great to see you clearly feeling so much better.
Mike, I don’t know if you remember me… think you were in same grade as my brother Bruce… but your story is very inspiring, as I’m almost certain you’ve been told. May God continue to bless you, as well as those amazing doctors. You and your family will certainly be in my prayers. May God continue to watch over you.
Reading this brought tears of joy to my eyes!!!! I am so happy for you and Jill. Love yall, Dee
Time to do the “happy dance”. We are so fortunate to live in an age of so many advances in the fight against this terrible disease. Dr. Pippas is a jewel1
I found ur blog after googling votrient and nausea. I too am NED and have been on votrient since July 2011 after a right nephrecotomy with mets to the lungs. Do you seems kidney oncologist? Have been seeing a regular oncologist and he is leaving me the option of coming off the votrient . I am torn because althgh side effects of the nausea, loss of appetite,vomiting, etc and annoying they are tolerable . Anyway, thanks for your response and great news of NED.