Columbus and the Valley

Amen and Goodnight

We just got back to the hotel from a long, really nice dinner at Table 16 in Greensboro, NC. It was a date! It was a date! Out of town, a couple in a different town, sharing a bottle of wine and two different fish dishes. A nice ending to an exhausting day.

I’ve decided to talk to God tonight. I don’t mind if you listen in. In fact, I want you to listen in and know what is in the back corner of my heart.

Dear God, we have tried to be all you would have us be since cancer came to visit us almost three years ago. We have helped raise $150,000 for the American Cancer Society and received the incredible gift of feeling the love of our community on one of the greatest nights of my life.

I have peddled a bicycle, worn makeup and posed for pictures and video for billboards, print ads and television commercials for the John B. Amos Cancer Center and Columbus Regional Healthcare System. We have written over 140,000 words, first on our Care Pages and then on this blog so that we can leave a very easily findable trail of crumbs for the kidney cancer patients who are visited by this disease after me.

We have bared our souls, discussed bowel movements, explained our fears and discussed medications, procedures and even videos of me getting shrink wrapped for a stereotactic radiation treatment. There isn’t a single thing that has happened to us that we’ve held back on. It is all out there — the good, the bad and the ugly. Our local doctors, PAs, nurses and techs have not failed us. We have received exceptional care. We left Columbus because it is time to seek care from a renal cell cancer specialist.

We didn’t hear what we came to Duke to hear today. Jill and I are in a “Damn the torpedoes! Full speed ahead” place. Dr. Dan George….not so much. The tumor that was in my spine is gone. The CT scans and MRIs confirm this. We came expecting to be offered high-dose interleukin 2 therapy, a brutal systemic therapy, which could cure me of this cancer. A 7% chance. A chance we were willing to take, in spite of the horrific side effects and stress on my body and on Jill’s soul from having to witness it.

Lord, I don’t like indecision. You know I like to lead, follow or get out of the way. I’m not good at waiting, even though I know that it is not my will, but yours, Lord, that will be done. I’m afraid of this tumor coming back in my spine. I’m afraid of my legs being taken away. Dr. George was emphatic today that HDIL-2 won’t keep this cancer from returning. He says the cancer in my body needs to declare itself. He feels that we need to continue to watch. We’re living in a constant state of cancer advent.

I asked about PET scans, or any other cutting edge scans that might not be available in the Columbus area. Dr. George will call us inside of two weeks to discuss those options, if they exist.

The good work that has been done by our caregivers at home may have healed me. It is entirely possible that this cancer is gone permanently. If you’ll grant me a wish, Lord, I’d really like this to be the case. In the meantime, we’ll continue to wait, and pray from cancer advent. We’ll continue the scans, the hydration and the needle sticks.

I won’t give up on you, if you won’t give up on me.

Oh, one more thing. Please get us back to Alabama safely.

Amen, and goodnight.

It Took a Village (Repost)

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.

Goodnight!

Please Join us at the 2011 ACS Crystal Ball

Times are tough, but I hope we’re coming out of the Great Recession and that folks are beginning to be able to breathe again. I know a thing or two about tough times. The past couple of years have been character builders for me and my family. What a horribly bad time for Jill and me to be partners in a small publishing business! Then there’s that cancer thing — the thing I wouldn’t wish on my worst enemy. Actually, cancer is my worst enemy. So, I guess I would wish cancer on my worst enemy. Cancer, I hope you get cancer!

So, let’s talk about cancer. Take a look around you. Cancer is everywhere. It is as simple as that. It is partially a function of my age, but also of the time in which we live. Every gathering, every party, almost every conversation is partially taken up with a discussion of who has been recently diagnosed with, died from or licked cancer. Our cancer centers are full of sad patients and their sad caregivers. What can we possibly do to turn this death ship around?

One thing that we can all do is support organizations like the American Cancer Society. The ACS is a massive support machine for people like me and others who are living with cancer. I have been chosen as this year’s honoree for the American Cancer Society Crystal Ball. The ball, which is presented by the Columbus Regional Healthcare System’s John B. Amos Cancer Center, takes place on Saturday, March 19 at the RiverMill Event Center.

It is going to be a hell of a party! Drinks, dinner, dancing and a great silent auction, and the evening will be topped off with a Fire and Ice after party, catering to a younger professional set. I set a goal early on in the process to make this year’s Crystal Ball the biggest one yet, but the economy has made the fund-raising a challenge.

Please look at your budgets and find a way to help us fight this disease. Your sponsorships, table reservations, silent auction purchases and contributions will go a long way to keep the help and information flowing to families who need the support of the ACS. Check out http://www.acscrystalball.org, the website for this year’s event and plan on coming out on March 19 to celebrate a successful fund-raising campaign.

Just Like an Angry Badger

Yes, I know. I know you need to hear from me. I was sitting at “my” Rotary table on Wednesday of this week and talking to fellow cancer survivor Larry Sanders. He asked me how I was doing and I told him that I feel great and that if anything bad was going on, I was blissfully ignorant of it. We agreed that sometimes that is a good thing, although please understand that I am on guard like an angry badger when it comes to my condition. But, damn, it is good just to be alive and going about the business of living!

Now I know why some of the most creative people have led tortured lives. When I’m the most afraid, when I’m wigged out of my mind is when I write. I know you know what I’m talking about because the feedback I get tells the story. So, just know this: If I’m writing hard and heavy there’s a better than average likelihood that I’m freaked out about something. So, don’t wish that on me, people! I promise to do a better job of posting here. I have been spending some time over the past couple of weeks working on some facebook stuff and soon you’ll see the fruits of my labor.

In the meantime, I’m going to see Dr. Pippas this coming Monday, the 24th. I’m hoping we’ll talk about more frequent scans for a while and setting up a Zometa infusion to protect my bones from further invasion by Mr. C. Unless I hear something to the contrary, I am feeling good and hopeful about this year.

Please make plans to support the American Cancer Society Crystal Ball on March 19, 2011 at the RiverMill Event Center, where I will be this year’s honoree.

Like Water From Another Time

The past couple of days have been interesting. This is the 5th day since my Thursday dose of Xanax and I am finally starting to feel human again. It is difficult to put into words how I’ve felt. Let’s just say that the dips of the cancer roller coaster ride that foster isolation for the patient are made more palpable with the addition of medically-induced fuzziness. I have told several people that I’ve felt “not right in my head” over the days since my last Thursday radiosurgery. This morning, I’m starting to feel like my old self. I just wish it could be the old self without cancer.

Last night I met with the planning team for the 2011 American Cancer Society Crystal Ball. I’m the honoree and with all the goings on in our lives over the past 15 weeks, I haven’t been much help to this wonderful group of people. Being able to sit and talk last night and see all the good work that is being done in my name for the benefit of the ACS was good medicine for me. I left there, still in my Xanax funk, but uplifted at the same time.

Last night I learned about someone’s friend who has had recent RCC surgery and has already had a return of his cancer. Another friend of mine has contacted me in the past few days to tell me about a friend of her’s who is facing upcoming RCC surgery. I have made myself available to talk to these folks to do what I can to shed some light on their upcoming days. I hope they’ll get in touch with me. It seems to help me to be able to help someone else.

Cancer creates families. Like a group of people struggling to keep their heads above the water during a tsunami, the members of this family are thrown together, bounced apart and pitched back into each others’ faces while we all ride the peaks and valleys in our own time. Quite together and quite apart. Lives moving to different beats, but somehow not quite in tune with the world around us.