FYI: This is a repost of my last blog post that many of you didn’t get a chance to read before our hosting company (justhost.com) dropped the ball and left our website inaccessible. They have also said they don’t have a backup after Nov. 23, which means my last two posts have disappeared into nowhere, along with all the great comments we’ve received from many of you. Starting on Monday, we’ll be looking for another hosting company. Here is my latest post:
Oncologists, neurosurgeons, radiation oncologists, family doctors, nephrologists, nurses, techs, physicists, engineers, pharmacists, insurance companies, church family, immediate and extended family and a hoard of friends numbered seemingly like the sands on the seashore — individually, in prayer groups, on renal cell internet forums and on the street. This is my village.
As just a sneak peak at what I have to tell you tonight, I messaged Dr. Mike Gorum late this afternoon to thank him for his good work (good work, that in concert with his partner Dr. Marc Goldman, likely kept me from writing this message in a wheelchair instead of my comfortable leather chair). He said the most un-brain-surgeon-like thing: “You don’t need to thank me, you need to thank a bunch of physicists, engineers and other doctors that work behind this scenes. I just stand out there and take all the credit.”
After the rather curt dismissal we received when we went for follow up at Emory University Hospital in late summer, we began to assemble our village here in Columbus. Drs. Andy Pippas, Mike Gorum, Marc Goldman, Clark Gillett, John Cabelka, Doug Ciuba, Raj Alappan and a host of their PAs, nurses, techs, engineers, physicists, pharmacists and all the advice and drugs they rendered and prescribed. Also, the John B. Amos Cancer Center, The Medical Center, Hughston Hospital and Atlanta Falcons Physical Therapy.
My love fest with our village started from the moment I announced that I had been diagnosed with kidney cancer. It crescendoed on March 19 of this year at the American Cancer Society’s Crystal Ball, where I was this year’s honoree. That was one of the greatest nights of my life. It was very much like being able to attend your own funeral while you are still alive (minus the DJ, band, silent auction, liquor and dancing).
Having cancer sucks, but getting the drop-to-your-knees-and-cry benefit of learning how much you’re loved by your community is a gift that will keep giving until I draw my very last breath. It has been life-changing for me and my family. If you don’t already know how much I love all of you and how much we appreciate each gesture of concern and encouragement, let me be very clear. Our village has healed us, sustained us, fed us — physically and spiritually — cried with us and shouted for joy with us and this has been what has sustained us through dark hours of pain, fear and suffering.
I spent all day yesterday at the JBACC getting fluids. Went back this morning at 7:30 and they stuck another needle in my right arm and kept on pumping. We reported to The Medical Center a little after 10, where they checked my creatinine (1.8, not great, but not bad enough to keep them from using contrast media to enhance the scan), fed me another cup of delicious barium and slid me onto the CT scanner table.
Then it was back to JBACC for an after-scan flush of another bag of fluids to protect Strainer (in case you don’t know, Strainer is the name of my right, remaining kidney). I texted Dr. Pippas’ nurse to let her know that I was in the cancer center, and that it sure would be nice to be able to get some feedback from Dr. P about my scan.
She texted me back and basically said, “Come on down.” Only, it was really up….to the 3rd floor where the team of top-notch medical oncologists ply their profession. So, Jill and I headed on up, signed in, got triaged and settled in to get this very important call to come in to see the doctor.
We were called and made our way back to a treatment room to wait to see Dr. Pippas. After a few minutes, I could hear him dragging my rather voluminous chart out of the door pocket and could see the door handle turning, signaling the imminent delivery of the news we’ve been to anxious to hear.
After a few formalities and the typical barrage of questions from my favorite mad scientist, he opened the three-inch-thick folder and drew out two sheets of paper that represented the salient facts gleaned from the scan that I had had only a few hours earlier.
“This scan is completely clear. There are no metastases in your lungs, abdomen or pelvic area,” was how Dr. Pippas characterized the information. Hallelujah! This is going to be a great Christmas.
In my yesterday post, I outlined two possible outcomes of this scan. This was the one we were hoping and praying for. No Evidence of Disease. NOW, the wolf is still at the door. We will have another MRI scan in about two weeks to determine once and for all that the stereotactic radiosurgery has effectively killed the tumor in my spine.
The MRI could also see if there are any other small soft tissue tumors in that general area. The bottom line is that we (our medical village) still thinks we need to pursue some type of systemic therapy to go after any other cancer cells that might be floating around inside of my body.
Today I heard from a representative from Dr. Janice Dutcher’s office in New York. I have already heard from Dr. Dan George at Duke. After we get the MRI results in mid-December and correspond with those two docs via email and/or phone, we’ll know whether the HDIL-2 systemic therapy is feasible and if so, will schedule it either in New York or at Duke. For all sorts of reasons, I am adamant, and Dr. Pippas agrees that I am not going to settle for any kind of tyrosine kinase inhibitor (read it and weep: http://www.ncbi.nlm.nih.gov/pubmed/19689244) before I know without any doubt that HDIL-2 therapy is completely off the table for me.
So we press on. Happy for the gift of this news so that we can brush cancer aside and enjoy this advent season, watchful, hopeful with the scent of Fraser fir (named for the Scottish botanist John Fraser) in our nostrils.
I am not cured. The chances are high that this cancer will come back. We will remain vigilant, hopeful and keep a fresh can of whupass handy if we need it. For now, we are blissful! I can concentrate on getting back the strength I’ve lost and try to figure out how to properly thank my village for standing by us for the past two and a half years. This time has changed me.
I didn’t intend for this to be a thousand-word post. In fact, when I finish this sentence, it is at 1,104 words. I will shut up, now.