The surely epic bucket list item I won’t get the chance to check off today has finally lost enough pain for me to talk about it. Tonight I would have stood on hallowed concert ground in Morrison, CO with all four of our sons and Michael’s wife, Janice Rice Venable, one of my dearest childhood friends, Craig Hospital Occupational Therapist Perry Ann Williams, and her husband retired landscape architect, Keith Gartin; Principal Architect and Senior Partner Sam Andras, of 2WR Architects, his spouse, educator Victoria Andras, and a host of their friends, band mates, lighting and sound professionals and advisors.
Today we all would have watched our son, Adam Venable/Obeah, perform with Daily Bread as they open for Pretty Lights on the Red Rocks stage. If you know about Red Rocks, you can likely conjure my deep loss for having to miss it tonight. If you don’t know Red Rocks, think Carnegie Hall and and I’ll conjure my deep loss for having to miss this tonight. I’ve had to unwind a 12-day walkabout while in the midst of enduring 2 surgeries, a CT scan, an MRI, some sweet Jesus pain and chronic nausea and vomiting. Thanks to my medical team, everything on that list has been fixed or alleviated. But without time on my side and the sensibility of putting the importance of my health first, tonight, my best hope is to be able to live stream the show, if they can figure how to send it.
Adam, I hope you leave a raw, bloody piece of your soul on that important stage tonight. That it comes from a place so deep that it shocks people to know you kept things like that in there. You have worked hard for this and you deserve your hard work and dedication to make an audience swoon. I will be joined with your spirit in the Colorado breeze. I could not possibly be prouder of you, son, and your brothers and that sold out show will watch the virtual walls come down in the foothills tonight. Now go out there and kill!
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.
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.
First of all, a big thank you to the angel who provided flight time for us today. What got accomplished in exactly 11.5 hours would have taken two whole days and more energy and expense than we had to throw at it right here at the holidays.
Despite the great flying accommodations, it was still a very stressful day, and we are exhausted from all the stress and conversation. Roosevelt Hospital is well over 100 years old, located in the Hell’s Kitchen area of lower Manhattan on 10th Avenue at 55th Street in New York City. Funny story: Our cab fare from the airport to the hospital was $102. The return trip cost us $56. Go figure! Guess which trip was made in a yellow car? By the way, it was a 20-minute drive. I’m in the wrong business!
I had completed all my new patient paperwork and sent them to Dr. Dutcher’s office a couple of weeks ago, so the check-in process was a breeze. The people we encountered at Roosevelt were extremely nice and helpful. When we got off the elevator on the 11th floor, we must have looked like a package of pork rinds at a bar mitzvah. A guy walked up to us wearing a welcoming smile and with his arms extended out to his sides, palms facing us, said, “Baby, or cancer?” Both the maternity stuff and the oncology stuff are on the 11th floor. As we approached the check-in office for Dr. Dutcher, we ran into the same smiling guy who engaged us in another upbeat exchange of words. He was such a great ambassador for the hospital. He seemed to enjoy his work and honestly, I don’t know what his job is, beyond making Alabama people feel comfortable in a strange place.
Before I get to what you really want to hear, I want to tell you another story about the elevators. There is a “Sabbath Elevator” at Roosevelt. During the sabbath and on Jewish holidays that elevator is programmed to stop at every floor, no matter who is on it or where they’re wanting to get off. I know that strict observers of the Jewish faith can’t turn on lights on sabbaths and holidays. Now, I know they’re also not supposed to press elevator buttons. It is interesting being in a big city surrounded by so many people who are different from you. Interesting and fascinating.
By the way Gayla and Sandy, we were two blocks from the Columbus Circle Mall, which is next door to the Time Warner building. It is three gargantuan floors of every kind of shop, restaurant and boutique you can imagine. I thought of you both when we walked through those revolving doors looking for a place to lunch. I know you two could have done to damage to your Visa cards in that place!
We checked in and while we were sitting there waiting, Dr. Dutcher walked in. I said, “I know that face! Hello Dr. Dutcher.” She said, “You must be Mike.” She only scheduled four appointments today, so it was easy to know them by name. We only waited for about five minutes before we were escorted to a consultation room.
I promised video. I have about an hour of video of our meeting, but I won’t be able to post it until tomorrow. First of all, I don’t know how to post it, and I’m just too tired to fiddle with it tonight. That will give me something to figure out tomorrow.
That reminds me of one of our most cherished family stories, and my son Michael is going to kill me for this. When he was five years old, he came roaring into our great room like a house on fire. I was sitting there watching TV and he ran right up to my recliner and said, “Dad, does your penis get big sometime?”
OMG, this was it, I thought. This is the time when I’m not supposed to lie. I’m supposed to answer the little guy directly. Nothing more, nothing less. Just answer the question. So, I did. “Yes,” I said — hoping that was the end of it — and he’d go on back to, Lord only knows, what he was doing. He didn’t. He continued, “Is it cause you’ve been fiddling with it?”
“No,” I said. What the hell, I wasn’t going to go THERE with a five-year-old. “Okay,” he said and roared back out of the room. I was thinking, “Well, alrighty then, that went better than expected.”
But I digress.
Dr. Dutcher came into the room and Jill and we over the renal cell carcinoma history, all my medications, surgeries and procedures. One at a time, she popped in the two disks I had mailed her containing the images from the recent CT and MRI scans. After much discussion and many questions from her and from us, she has agreed that the HDIL-2 procedure is the next best step for us.
I will outline her protocols in my tomorrow post, but we determined that it really doesn’t make sense for me to have this therapy in New York. Dr. Dutcher is very familiar with Dr. Dan George and Dr. Andy Pippas, my oncologist, is a Duke colleague of Dr. George’s. Duke is the place we need to be. Dr. Dutcher said there were three facilities that she would recommend that are nearer to us. One of them isn’t in Atlanta. So, we’ll be making a drive up to Durham as soon as I can get an appointment and have a talk with Dr. George. If we are satisfied that he will be agressive enough, and if I can pass the physical testing that will be done to assure that I’ll be able to withstand the therapy, we’ll likely do this at Duke University Hospital.
Dr. Dutcher says that about 30% of people respond to the HDIL-2 therapy. Respond means that the tumors in their bodies shrink more than 50%. Seven to ten percent are complete responders. Those are the lucky ones where the disease disappears and stays gone. I want to be a complete responder.
I want to be able to live much, much longer and continue to be able to embarrass my children. Sorry, Michael, you are a beautiful man. You were a beautiful child. And, that was a beautiful story. It just needed to be told.
This was a good day. HDIL-2 is a good option for us. It is one that could cure me. Even with the side effects that we know it will bring, I’m ready to take it on. The sooner, the better.
I didn’t sleep much last night. The last time I looked at the clock, the green digital numbers read 3:45 a.m. I was grinding on the realization that my 8:15 appointment (only 8-, then 7-, then 6-, then 4-and-change-hours away) would tell the story about whether or not the stereotactic radiosurgery had put a proper killing on the tumor in my spine. I thought I’d leave Dr. Pippas’ office this morning with that knowledge in hand.
I did leave with a little bit of good news, though. The cancer doesn’t appear to be anywhere else in my body. It is localized to the place in my spine that has been biopsied twice (a week apart), operated on twice (eight weeks apart) and blasted with 32 grays of radiation (two treatments, nine months apart). My spine, though ravaged by surgery and radiation, is in a much better place than it was in just a few weeks ago when my spinal cord was being encroached upon by the tumor.
That is where the good news ends.
The tumor may not be dead. And, if it isn’t, Dr. Pippas thinks I may have reached the limit of how much treatment trauma (surgery and/or radiation) I can successfully stand in that spot. I haven’t had this conversation with my neurosurgeon or my radiation oncologist and I will do that. Before I address this any further, I’ll have those conversations. I’ll say at this point that my options appear to be narrowing. This tumor needs to go.
I need systemic therapy. The kind of therapy that courses through a body and kills cancer cells where they are — one by one, if that’s the way they come. I have sent the latest CT scan and yesterday’s MRIs of my lumbar spine and thoracic region to Dr. Janice Dutcher and Dr. Dan George for their review. We hope to be able to get a consultation with both of these fine physicians by the end of December and get scheduled for the HDIL-2 therapy as soon in January as possible.
HDIL-2 is the beast I’ve been reading about almost since the day of my diagnosis in May, 2009. I have read volumes about how the therapy is administered and hear dozens of first-person accounts of the actual treatment from members of the kidney cancer forum on acor.org. There is an 15% – 20% chance of a cure for people with clear cell kidney cancer. I want to be one of those people. I’m counting on being one of them.
Dr. Pippas, Jill and I talked this morning about the decisions we’ve made over the last two and a half years since I was diagnosed. I’m confident that we’ve made great choices. I’m at peace with all of the decisions we’ve made that, at the time, seemed like we were having to cut the baby in half. Right now, we’re standing at another crossroads. An important one.
Beginning with this next therapy, the price of poker is going up. Each one of the available therapies we try ticks off, one-by-one, the few available options we have to try. My hope is that I’ll only have to check off one of those boxes and it is the one that gives me a durable cure. Unfortunately, HDIL-2 is the only one that can do that. If it fails, then I’m on a train with no brakes going downhill with only pinestraw bales to stop me. Targeted therapies, tyrosine kinase inhibitors, vascular epithelial growth factor (VEGF) inhibitors are only band-aids that can’t cure me, but can lengthen my life until they stop working — and they will stop working.
So, this is why the HDIL-2 therapy is so important. It is the big arrow in my quiver and I’m ready to draw it back and let it fly.
I’ve done all I can do today. No sense in worrying about what I can’t control. Tonight, I hope I’ll sleep.