I am a seasoned cancer patient. Something I never wanted to be. I am able to withstand painful needle sticks without fear. Something I never wanted to be able to do. I am engaged in a fight to live and to enjoy a robust life. Something I never wanted to have to deal with.
I feel the urge to talk about what I’m feeling today. I’m not phishing for pity, just telling it like it is. Sometimes it helps me in a big way to see a real account of the incredible privilege it is to be able to live with cancer, as opposed to it taking you down quickly. Without any doubt, the pain and suffering with which I, and therefore my family and friends, deal with because of this disease and the powerful medications I take, the gift of living that I’ve been afforded is a great victory.
So, let’s talk about positives: If you’re following, you know I had a CT with contrast of chest, abdomen and pelvis yesterday. The radiologist read the scan and so did Dr. Andrew Pippas. They read the scan. I read the report. We are all a bit flummoxed about this disease process. So, Dr. Pippas has ordered a PET CT, which is a nuclear scan to detect active disease. That should give my medical team enough additional information to be able to make recommendations about future treatment.
I’ll have the PET CT this Friday, May 26 at 1:45. What we hope to see is that the areas where we have concerns — my spine from L1-L3 and the spinal canal, and my remaining kidney which has a lesion that we’ve watched for 8 years, are not exhibiting active disease. That place on my remaining kidney is changing, based on the introduction of Cabozantinib, the drug I’ve been taking for about seven weeks. Changing into what, we don’t know at the moment.
I’ll share what we learn from the PET CT over the coming weekend. I hope we’ll have a more definite idea of what is happening and what we’re going to do about it.
My biggest issue in the quality of life department is that I’m hoarse as hell. 20% of the people who take CABO get extreme hoarseness as a side effect. I definitely am one of those 20%. Also, I’m dealing with some hand/foot syndrome. I have blisters on both of my feet and walking is difficult and painful. I’ve lost right at 60 pounds now and eating continues to be challenging. Also, my blood pressure is elevated and we’re concerned about that. High blood pressure is very dangerous to me because I only have the one kidney. This is a tough road we’re on right now.
Having all of my readers with us in spirit along the way has been a wonderful gift to Jill and me. I hope I can keep on track with posts as information becomes available. Thank you for your concerns. Thank you for your prayers. Thank you for your kindnesses. We could not be more grateful for all of you.
Brenda Oswalat says
Mike, The Oswalts continue to pray for you. This disease is not only physically but emotionally debillating. Thanks for sharing your journey. You never know when the information you share might help someone with their challenges.
Brenda & Gene Oswalt
Barbara Moushon says
Sending more prayers for a brave man. You inspire strength in others. God Bless
John Walden says
We are praying for you and Jill.
Cindi Ludwig says
Reading and hoping, praying, & wishing, that the PET CT gives you the results you need and want so you can move forward with treatment that will fight and irradicate this beast. May your sideffects subside and may you get relief from all your physical, emotional and spiritual challenges.
Karen Lewis says
You continue to be in our prayers. I’m so PROUD to call you our friend! Such a well-written article Mike. Praying for less pain and much brighter days ahead!
Carter Seaton says
Hoping and praying that your next scan shows that the beast is still. That won’t help your voice, feet, or hands immediately, but it should be a huge relief. Hanging in there with you in spirit,
Much love to you and Jill,
Carter & Richard
Marianne says
Good luck Mike. Think of you often.
Richard Illges says
Nothing can separate us from the love of God.
Jean Thomas says
Sending support, love and hugs to you and Jill! Hoping for best results on Friday! I respect your attitude, courage, unrelenting spirit and your choice of words. Continue to express if it helps; I will read.
Kathleen Farrell says
You know you have my prayers and good thoughts. This disease is a real pip. Cannot think of a weirder word for it. Keep up the good fight!
paula acton says
Sending prayers of healing to surround you. You’ve got a big, strong team of prayers warriors on your side!
Rob St. Clair says
Mike, thinking about you every day, praying for the best. Remember, for every one who writes, there’s another thousand who are wishing you well
Sherrie says
Your network of prayer, support and love continues Mike.
You and Jill are surrounded by it and hope you carry that knowledge and feeling daily. Love you both!
Liz Kendrick says
I have a feeling the upcoming PET is going to affirm that things are good. Love and prayers for you and Jill
Pat Etemadi says
Mike, My prayers are with you. You WILL win this fight as you have done in the past! Mike you are definitely a fighter. You have a fantastic suppprt group. Love you and Jill!
Jack Basset says
Mike, I love you and I know it’s not my place to tell you to keep up the good fight. You and Jill are the ones who have to summon up the strength to fight. I just want you to and would do anything in the world to help.
Brenda French says
Thanks for the update. I have been wondering how you guys were doing. The human body is a miracle. Medicine and the practice of it is an adventure. I am glad you are allowing us to ride in the back seat. Recently I heard of a book Driving Miss Norma and I bought it for a beach read. It is about a recent widow who after 60 + years of marriage received a diagnosis of cancer. When the doctors asked her about the treatment path she wanted to go on she told them she was hitting the road. Her son, daughter in law and dog joined her for the adventure. I am only a few pages in but so admire her decision to make the most of the life she had left and live. I know you have many years ahead of you. You guys seem to make the most out of every day. That is important.
Lori Schumann says
Mike, you and Jill continue to be in my prayers. You are quite the champ! I don’t understand any the “why’s” of what you’ve been dealt, but I DO understand that you are battling this “hand” with such God-steered grace.
Love you both,
Lori
Barbara Marks says
We LOVE you Mike! Andy and I continue to pray for you daily. Our family has been touched with this terrible disease in so many ways. You are so courageous in your journey. Remember God has gone before you and he is there by your side every step of the way. Through Him there is always hope. Keep the faith dear one….
Craig DuPriest says
We’re right here with you and Jill, Mike. Stay the course and thanks for keeping us posted. Peace.
Cathy Alford says
Checking in to say that I am still here, I am still reading and I am still praying. You and Jill are consistently in my thoughts and prayers each day. Stay strong – you are a warrior, for sure!
Cyndy Cerbin says
If love can cure, you surely have this beat. Wish we could give you more!
Cyndy
Mary Choi says
Mike…continuing to pray for you. I wish I had some magic wand to end your suffering. It breaks my heart to read what you are going through, but I am grateful to you for your honest account of what you are going through. HUGS to you and Jill.
Becky Ivey says
Continuing to pray without ceasing for you both.
Margie Ivey says
Thanks for the update…thoughts & prayers are with you.
Renee Ker-Fox says
I am sure Jill will agree, that a hoarse voice is a sexy voice! Jokes aside, we are praying for encouraging news on Friday and better days ahead. Thank you for allowing us to share your difficult road with us, Mike.
MICHAEL SILVERSTEIN says
Mike, you and Jill inspire all of us and give us strength. We continue to ask G-d to watch over you and care for you.
Dale Austin says
Mike, I ran across your blogs as I was doing some research of my own on Cabometyx. I am in the Charlotte NC area and I too have RCC. I had a partial nephrectomy in Jan. 2015, and after having some rib pain last Oct. discovered I had bone metastasis in ribs on both sides and on my pelvic bone. I started Cabometyx 60mg. in mid Feb. 2017, and after about 3 weeks started the side effect that you also had. Loss of weight, no appetite, some diarrehea, but the most bothersome was the sores on my hands and feet. My doctor after the hand foot syndrome showed up cut my dosage to 40 mg. after a month on the 40 mg. the hand foot syndrome got to the point walking was almost impossible as it felt like walking on thumb tacks. He then took me off the Cabo for 2 weeks and in one week, my feet pain diminished and during the end of the 2nd. week my appetite and taste buds began to return. So I went back on the 40 mg. Cabo again, and now after 4 weeks, the hand foot syndrome has flared up again. So I am right now taken off of the medicine for a week to recover and then I will be starting on 20mg to see how well I can tolerate it. Everything you have written about your experiences with the Cabo and side effects I can relate to. Also, I forgot to mention, that after 2 months on the Cabo my bone metastases showed clear evidence of shrinkage, and my Dr. is encouraged that it’s working. Just hoping that I can tolerate the 20 mg. dosage or I’ll have to be taken off of it altogether and try something else. Since starting on the Cabo I have lost about 30 lbs. I appreciate your blogs and will be following your progress. God is in control of this for both of us. Thanks.
Julie Harris says
I’m praying for you both as you fact this next test and it’s results. When Doug was diagnosed, I repeated Proverbs 3:5-6 to myself and to him quite often. It gave me strength and it will do the same for you! Love you both!
Geri M. Davis says
Mike and Jill, Thank you for taking us along with you on this journey. We are at your side in support and prayer. Much love, geri
Theri Brooks says
Continuous prayers!
Jenny says
You continue to amaze me with your pluckiness. I selfishly look forward to reading your progress. Keep up the progress Mike, never stop leaning forward. You are in my thoughts and my heart.
Lisa Deason says
Love, prayers and hugs.
Wanda says
Continuing to pray for you and Jill!
Jo McDaniel says
Mike, I am constantly amazed at the articulate, and sometimes even humorous way you take us with you. I can hardly believe all the things you have to go through to get well. I can only imagine how much you are helping others with your sharing, and how many you are sending to their knees to make their petitions for you. You are truly inspiring. We all love you and Jill.
Guy Sims says
Thank you for keeping us posted about your cancer, trestment and side effects. It enables us to pray more specifically for you. Just know I care.
Frank Brown says
Mike and Jill, know that you are constantly on our minds and in our prayers. Our God is able to do all things and our petitions will be fervent on your behalf.
Christopher Bowers says
Mike, I am praying that God will give you continued strength to beat this disease. You are amazing. I remember camping out in our backyard and visiting the airport to get Eastern brand matches for our backyard . Stay strong my friend!
Chris
Allison Estes says
Continued prayers for complete healing!
Fletch says
V, thankful for my brief visit with you yesterday. Looking forward to the return of your taste buds and a visit to Borga Italia. We love you both!
Bobby & Mary Dixon says
We are praying for you and Jill.
Richard Nurnberg says
Mike,
If you believe as I do that the harder the battle, the sweeter the victory, you’re in for a very sweet win here. Prayers with you……Dick and Amy
Pat Daniel says
Thank you for letting us know where you are in this process! Steve and I keep you and Jill in our prayers every day.
Celia solomon says
You didn’t want this disease, you have learned to cope with it as much as humanly possible, and you have given honor and love in abundance to all who you know and don’t know. Your blog might be therapeutic for you which I think is true, but my heart grows every time I read your words. Love to u both. Celia and Murray
Pat Vance says
Praying for health and peace. You both are so inspiring to so many with your bravery and willingness
to share your story. As you know many, many people in our community is praying, including me!
Love and hugs to you both. ❤️
Dwight New says
Mike and Jill- prayers continue for you both. Mike: I don’t think anyone that knew you would view this as you seeking pity. This has been such an ardous journey for you. Those of us that care appreciate being informed- be it good or bad.
Peggy Gray says
Mike, my heart continues to hurt for you & Jill, as well, to think of you having to go through all this ordeal YET AGAIN!!!!! Please know you’re never far from my mind & always in my prayers!!! Much love & may God bless you!!
Eric Maddox says
Thank you, Mike for your informative and inspirational blogs. Your bravery and perseverance are truly amazing. You are the model for the word “hero”.