The good news, and believe me the only good news of yesterday, is that my MRI with contrast has been completed to Dr. Stapleford’s requirements.
The DVD has been shipped to her at Emory via UPS overnight package. The bad news is that in our haste to get this project moving in SOME directions, other than sitting here twiddling my thumbs while this cancer is growing in my back suffered from an almost comical list of missteps and mistakes that almost shot me out of the MRI water yesterday and postponed it for another who knows how long.
The purpose of this blog is not ever to intentionally throw anyone under the bus. But, when you’re dealing with your own healthcare or your potential mortality, if you expect everything to run like a well-oiled machine and be assured you’ll get the correct test and that it will be done on time, you’ll likely be left completely disappointed.
First of all, the tumor in my spine has been proven to be growing at an alarming rate. We know that from the difference in CT scans from only 4 weeks apart over August and September of 2010. We got confirmation of the tumor on October 14, almost 30 days ago and if I had waiting on doctors to get a plan in place for us to get this cancer removed from my back, I promise you we wouldn’t yet be out of the gate. We might not have even shown up at the racetrack.
I have muscled my way into this process, with emails and phone calls, forcing conversations between doctors. One of the doctors refused to give me his cellphone number and would take sometimes a day a half to return phone calls. This one difficult-to-communicate-with physician not only left this cancer patient standing flat-footed and in pain but he also left three other highly-communicative doctors waiting for his input so that we could determine a course of care.
I’ve since been deemed worthy of having his cell phone number and I used it once today when it looked like our well-designed plan was going south. The plan, which I cobbled together with help from the good folks at the JBACC, was to spend eight hours getting IV hydration on Monday morning, four more hours of IV hydration on Tuesday doing the same thing and to sandwich an MRI with contrast into a carefully picked spot in the middle of that second day. I was calling most of the shots since Friday, because I was asking people to do things out of their comfort zone and I was definitely the only one of this group who was exhibiting any sense of urgency about my situation.
I made contact with Dr. Stapleford, who generously gave me some email time on her vacation. She promised to contact Drs. Vahjen and Alappan to let them know her requirements for the MRI scans. She did that before the end of last week. So far, so good. I started a barrage of emails with Dr. Vahjen and the occasional phone conversation with Dr. Alappan to try to determine whether I could have the MRI contrast, and if so under what conditions and in what dose.
Once I got all that information collected, I made the decision to have the scan done here, because my doctors here know my case, my situation with Strainer and my need for speed. So I communicated this plan to all my doctors. The plan was that I would be going to the JBACC early on Monday morning and be IV hydrated for 8 hours. I’d show back up on Tuesday morning for another 2-hour infusion and I was told that I’d be ready to be “placed on the table immediately,” for the MRI. Then after the MRI, I’d go back to the JBACC for another 2-hour infusion of fluids to help drive the gadolinium from my system.
I realized that my plan had slid off the rails the second I hit the registration desk at The Medical Center. “Do you have your orders?” said the very nice attendant. “What type of procedure will you be having today?” she continued. This is one of the cases in point that shows that when cancer is your diagnosis and you’re fearing for your life and at the least your way of life. You had better have done your research. The world of medicine is keeping these fabulous, well-meaning doctors from being able to hold your hand and walk you through the miles and miles of dirt road you’ve got to travel to either get a cure or some relief from your particular brand of cancer.
Here’s what happened yesterday: We were on a mission-critical, perfectly timed, optimum scan window of time that should have started as quickly as I could have made the trip from the JBACC to the MRI table at The Medical Center. When we got to registration, none of the doctors with which I had been working for the past two weeks had ordered the MRI. There was no record of any test for me that day. It wasn’t Dr. Vahjen’s job to do. His job was to supervise the MRI by making sure we got the images we need and not kill or maim me with the gadolinium contrast. It wasn’t Dr. Pippas’ job to do. He’s my overseer, my medical oncologist and the one who successfully set up my IV hydration plan which was executed perfectly. It wasn’t Dr. Alappan’s job. He is my nephrologist, the one who weighs in on all things related to Strainer and who can and can’t be done to assure my kidney remains healthy and functional.
So we sat in the registration waiting room for over 2 hours and I worked my cell phone to try to keep from more critical days of non-action toward my goal of zapping this tumor going by or even worse having to be re-done. The person whose job it was to have given us the order for the MRI was Dr. Stapleford, at Emory in Atlanta. I’m giving her a pass on this one, because I’m sure she’s not used to a patient being the one who is calling for an MRI order. Her first attempt at faxing the order didn’t work because the fax machine whose number we gave her was broken. We lost another half hour on the broken fax until someone walking by realized she had seen Jill and me sitting (well, I was pacing) in registration both on the way to and from her lunch hour and stopped by to see what surely must be going wrong.
I’m tired of the hand wringing. I’m sick of the discussions. We had a plan that if it had been executed well, would have had us on track to be at Emory by the end of this week getting ready for a next-week dose of stereotactic radiosurgery. We managed to keep it on the rails only because I took things into my own hands and bitched and cussed my way through it. I hope all the accolades and kind things I’ve said about my entire medical team has banked me enough positive credits to outweigh this last couple of days of FUBAR.
Let’s just hope that the person whose finger will be on the radiation trigger doesn’t read this blog!
Dianne Henry says
November 10, 2010 at 7:58 amHey Mike,
My sister in Nashville needs you as her Medical agent. She has been going thru alot of the same things, such as, one dr doesn’t have her records, one has moved and doesn’t have them, etc, etc.
Consequently, things have slowed down and she has made many calls and cussed and moaned and whatever it takes. Yes sir, you have to be very pro-active. I will certainly refer her to your blog so she knows that she is not alone.
Hang tough, Bro.
loads of love, Di and Johnny
Allison Kennedy Owen says
November 10, 2010 at 8:05 amMikey, arrgh.
Thank you for such a poignant reminder that we have to be advocates for our health. … sometimes I back off, in my fear of “what will they think of my pushiness?” But you don’t! … and you shouldn’t. Love you!
Denise says
November 10, 2010 at 8:27 amMike: I think you should have been able to call of ANY of your physicians (here or in Atlanta) for the MRI order. It should have not been that huge of a deal for you. Next time, just call Pippas. I bet he would have written you the order and saved you hours of your precious time!
Ann Blondheim says
November 10, 2010 at 9:00 amYou are an inspiration and example for all of us. I hope when this is behind you you will write a “guide book” for managing your own medical care. You certainly have the experience.
Sally Morgan says
November 10, 2010 at 9:00 amI am sorry to hear things are not going smoothly! I know you have to be your own advocate (and you seem to be getting pretty good at it.)
Hope today starts out better!
Tripp Wade says
November 10, 2010 at 9:02 amWow, thanks for sharing Mike. Will keep all in mind as health care becomes more important to all of us !!! Keep fighting !!! U will win !!
Tripp
Crisa McCarty says
November 10, 2010 at 9:51 amAble to put the derailed train back on track in a single afternoon! THAT’s why we think of you as Superman! (Plus, taking the time to share the FUBAR with us in such a way that we feel the frustration and anxiety. You are the man!) You’re worth the fight. Keep going! Pooh said it best: you are braver than you believe, stronger than you seem, and smarter than you think. but the most important thing is, even if we’re apart.. i’ll always be with you.
Becky Marks says
November 10, 2010 at 9:54 amSorry you had such a terrible experience. It’s what healthcare has become today. We use to listen to and care for our patients but now it’s so different. Just think of all the people who don’t know enough to manage their own health care. Thank goodness you did bitch and cuss. I really admire what you are doing by educating so many other people.
Callie says
November 10, 2010 at 10:36 amI shudder to think what happens to people who don’t advocate for themselves. You are a shining example to others of the importance to get informed, to do your own research, to communicate well and thoroughly with your docs, and when all else fails, to be assertive and persistent in getting what you know you need NOW–later is not acceptable.
I HATE that you are going through the medical maze and grind, but I am so glad you are raising your voice so that we all hear your message. As much as we would like to turn our health over to the professionals, we can’t. Whether cancer, an undiagnosed illness or the sniffles, no one cares about your personal health as much as you.
Preach on, Brother Mike, preach on!!!
Callie
Betsy Lawrence says
November 10, 2010 at 10:47 amSo glad you got through this! It is a shame and added stress when you have to check and recheck the professionals but in today’s world you have to have some medical knowledge to survive. Hang in there!
Betsy Covington says
November 10, 2010 at 11:02 amWell done, sir — NOW I see the public benefit of your blogging! One of the sad, sad things about our healthcare system is the degree of personal advocacy it demands from each patient. No one is going to “take care of you” but yourself. It’s an important reminder. I worry about those who aren’t able to play that role for themselves. On the other hand… YOU, my friend, are innately suited for that task, as you so adeptly demonstrated yesterday. Give ’em hell, tiger!
Jerry/Laurie Bozeman says
November 10, 2010 at 12:41 pmSounds like a job well done … by you .. I must admit your patience is well above mine ..
It is extremely hard to be a gentleman when major key people presume or hinder;especially doctors.
Best wishes ,Mr Mike,, We watch carefully each day for your progress and success .. God Bless … Jerry .
Hallie says
November 10, 2010 at 2:06 pmI hear ya, Mike. Not to mention all the pains from insurance companies you have to deal with on top of it. You practically need to hire a “girl Friday” to keep everything filed & in order, etc., etc., etc!
You & Jill BOTH are in my prayers, buddy.
Karen says
November 10, 2010 at 2:10 pmMedical Agent… Dianne, maybe you are onto an idea here. We have sports agents – why not medical agents… Mike & Jill, the prayers continue in the Rankin household.
Susan & Fred Morgan says
November 10, 2010 at 3:31 pmOur love and prayers are with you and Jill as you travel this path. We hear & understand your frustration.
Fred & Susan
Margie Ivey says
November 10, 2010 at 4:48 pmI can picture you pacing and so sorry you’ve had these delays. Hope things are straight now. Several have asked about you and are praying too. Thanks for the update, I’ve been looking for one!
S says
November 10, 2010 at 9:50 pm…no claustrophobia? That’s good news! So proud you managed to keep it together and persevered to make it all happen. It’s as though you are the contractor for the project and it’s up to you to make sure all of the subs do their jobs. Stay strong. Continued love and prayers.
Joseph says
November 12, 2010 at 1:18 pmMike,
I wish I had been reading this blog four and five years ago. It was then that I was down in a hole, importuning without a voice. It took me several dozen angry and bitter months to find a voice that I am still learning to use. Your voice, your words, and your thoughts would have propelled me down the path of the Heard and Respected. My hole is gone now, mostly, and you’re no less inspiring today than you would have been before I knew you. Thank You.
If you’re not familiar with it, I’d recommend having a look at Shakespeare’s Twenty-Ninth Sonnet. It helped remind me why it was necessary for me to get out of my hole. At the time, the “sweet love remember’d” was that of my mother, my sisters, and a few close friends. Lately, that sweet love remember’d are the friendships that I am so honored to share with an Übermensch, like you.
Keep writing, Mike. We’re listening.
Shannon Gill says
November 13, 2010 at 11:40 amMike,
Thoughts and prayers are with you!! It’s sad to say, but patient advocacy is a huge gap in today’s medical system. You and my Mom both have a lot in common – she did the same thing with her cancer, forcing her way into treatments that made her doctors uncomfortable because they were conservative in their plans. As a hematologist by profession, she always said she knows this nasty beast called cancer, and you have to hit it with everything in your arsenal. And at the end of the day, she’s now 8 years in remission. It’s your life, it’s your body, it’s your decision. No one has more at stake than you (and those of us inspired by you). Keep it up my dear! Don’t let the doctors and medical system drive – it’s your car, they are just the mechanics. What you are doing in being your own advocate is part of the “Recipe for a Cure”. I wish we could bottle it and give it to every cancer patient. They should not have to fight the system – it should all be about fighting the disease. But unfortunately it doesn’t always work that way. Hang in there and please let us know if we can do anything at all to help!
All my love and prayers, Shan