On the surface it seems we have been successful in relegating my case of stage IV renal cell carcinoma (kidney cancer) into acting like a chronic disease. Something like diabetes. Something you can live with and keep at bay with medication. It doesn’t appear to be actively trying to snuff me out and thankfully it also appears that the oral chemotherapy I’m taking daily, although it is making me very nauseated and giving me constant diarrhea, has done a number on at least two tumors on my left adrenal gland. The tumors are gone!
Jill and I met with Dr. Andy Pippas yesterday morning. Except for a slightly elevated billirubin count, my lab work is exceptional. The higher than normal billirubin is a direct result of my taking the Votrient, which is an oral chemotherapy drug called a tyrosine kinase inhibitor. Our discussion with Dr. Pippas went toward the shocking weight loss I’ve experienced — now almost 100 pounds! He looked at my chart and proclaimed that I’d lost about 10 more pounds since I last saw him just 4 weeks ago. He is concerned, as are we, that I’m really starting to lose muscle mass and tone.
We talked about my nausea a lot during this visit, I guess because it has gotten worse over the past month. I am really having a difficult time eating almost everything EXCEPT Vietnamese food. I’m surviving on a dish at Uptown Vietnam Cuisine called hu thieu, which is a pork broth based soup, similar to pho (pronounced /f?/). It fills me up. It makes it happy and it is a very healthy dish, according to Beth Bussey, my nutritionist. Other than that meal, I am finding it very difficult to eat a single other thing without feeling nauseated. For a former fat foodie, this is really quite difficult to take.
Dr. Pippas prescribed a timed-release patch containing a drug called ondansetron (trade name Zofran), and the idea was for it to provide me with a constant infusion of the drug for a solid week and keep my nausea at bay. I applied the patch yesterday afternoon and so far, I have been nauseated almost every waking moment. I’m not sure if I’m experiencing a “breaking in” period or whether there is something else going on, but I’m at the edge of a dry heave all the time. So far, today hasn’t been much fun.
Dr. Pippas also told me about another product which is a wristband that gently stimulates the median nerve in the wrist and signals the “vomit center” in the brain not to fire. Who knew the brain had a vomit center? I am doing some research on that product now and may add it to my anti-nausea regime to see if we can get me back to a better place.
So, all things considered, I am in a pretty good position right now for someone with stage IV cancer. I’m not in immediate danger of dying. I’m able to enjoy my family and friends. And, even though I have a real intimate relationship with my toilet, I can enjoy and fairly respectable amount of good time during a day. As I see it, things could be a lot worse. If this is all there is, I’m happy to have it.
The other news is that I’m feeling like I might be able to write again and I hope that will translate into my being more communicative in this blog. Time will tell. In the meantime, I hope you have a fabulous Christmas with your family and friends. If you celebrate other holidays at this time of the year, I hope yours is a great one! For all my brother and sister cancer sufferers out there, hang on, there’s a better year coming.
Dianne Henry says
Mike, you and Jill remain in my prayers daily. You are an incredible warrior with great strength and courage. it is a daily battle. You have legions on your side. Stay strong. I love your attitude. I love you and Jill.
See you soon. Di
Jan Venable Davenport says
Merry Christmas Cuz ! Love you and pray for you every night….hope they can get a handle on your nausea.
Jennifer says
Spark up! From what I hear, it really helps.
Grandin Eakle says
Mike…. Man you are the definition of WARRIOR!!!! and a blessing to those that are on this journey with you!!! Your words are gold man.. I am glad to hear you are feeling in the writing mood. SOme of the other news definitely sucks but there is a lot of positive that makes me happy!!! Keep it coming. Tell your toilet I said hello or KERR-FLUSH or whatever the proper greeting is for a toilet and pass along my sympathies that it only gets to see that one side of you all the time. That can’t be fun! Well maybe for a toilet that is what fun is all about… Oh hell.. I don’t know. Anyway it is good to hear from you.
PS. I stayed alive on Chocolate Ensures for a month or two. Can you stomach one or two of those a day along with your Viet Food?
Hope you get that nausea under control!
Prayers continue for you and Jill!
Grandin
Sherron Hughes-Tremper says
Hi. So sorry to hear of the constant nausea. You are such a good writer. Thanks for sharing. I am not too computer wise, so hope I get to read your blog again. I pray for you often. Now, even more.
Pegi Taylor says
I love you.
Janet Sue Gibson Gray says
Mike~
I’m not sure if you remember me from our younger years at CSU but I just have to say, you are an amazing writer….an amazing person. Your words emit such peace & positive energy! I have a friend here in Cobb County with renal cell and I’m going to get her connected to your blog.
I’m praying for you & your drs to quickly get a handle on the nausea. When you can – just know there are readers that need you. I’m praying for a peaceful gastrointestinal landscape with a forecast of strong waves of “blog energy”.
My best to you and yours this Christmas and for 2014 to full of miracles! (I still believe in them!)
Much Love!
Janet Sue
Richard "Dick" Cobb says
Mike, Carter and I are sitting here thinking of you. My best to you, sir! You are in my thoughts and prayers.
Becky Ivey says
Merry Christmas and many, many, many prayers lifted on behalf of you both!!!!
Don says
Hello, somehow ran accross your postings.. You are one tough warrior.. and you are not alone.. My father was diagnoised in 8/12 with RENAL RCC.. Had the right kidney removed but they found cells in a renal vien.. Anyhow no other signs for 1 year.. Then 09/13 TUMORS came out of NO WHERE.. All other 3-4months scans WERE CLEAN.. These just showed up… We have been on the viotrient for 5 weeks, but doctor took us off because LIVER AST or ALT was about 600(suppose to be 50)..
Doc wants us to not take meds for 1 week then we will start taking a lower does.. When my dad is on 800mg HORRIBLE SIDE EFFECTS but he was dealing with it.. he did go down to 600 for 1 week abd BOY he was like a changed man.. totally different..
Anyways my friend just saying high and sharing our story.. Hopefully they will let my dad getback on next week and then we will hve agreat sCAN… We are all on a timeline, but love to get AS MUCH AS POSSIBLE OUT OF ALL OF US!!
GOOD LUCK MYFRIENDand i will be looking for your update!