It was just a simple Facebook post about being in Houston for my two month checkup. It was followed by a message from Tennessee’s husband, Sam.
“We are here and would like to meet up if we can,” Sam wrote. That stopped me in my tracks.
Tennessee and Sam and I have been Facebook friends for a long time. Debbie is also their Facebook friend. Tennessee and I met through Facebook when she discovered my blog. We both have CLL.
We have followed each other closely. We have exchanged messages and notes. I watched her post pictures with her grandchildren. She saw pictures of mine. We all knew what each other did for a living. We all knew the particulars about our particular variants of CLL, since it is different in everyone.
She had a favorable response to the same chemotherapy/immunotherapy as me (Fludarabine/Cyclophosphamide/Rituximab). I had a complete response. My complete remission lasted for five years. My relapse has been sort of soft. Her response was not complete, and her progression has been much harder.
She has a genetic karotype of CLL known as a Deletion at Chromosome 11q (part of that chromosome is missing, the damaged DNA that causes cancer makes the cell reproduce itself in that errant manner). This makes her CLL a more difficult case. I have what is known as a normal karotype. There are others….a Trisomy 12 (an extra leg at Chromosome 12), Deletion 13p (which is the most indolent, favorable kind of CLL, if indeed any cancer can be favorable), and the particularly difficult Deletion 17q, which indicates a poor prognosis and resistance to treatment. Gene p53 resides at Chromosome 17q. It is a cancer fighting gene. With it missing, the patient is far more susceptible to secondary cancers.
While I have a normal karotype at this time (this can change over the course of the disease), I have an Unmutated IgvH gene (immunoglobulin heavy-chain variable region gene). This is a permanent status, the Unmutated status. It does not change as karotype can. They sent my bone marrow aspiration off to the University of California at San Diego, where the remarkable Dr. Kips and his remarkable CLL research laboratory performed this very expensive test at no cost to me. It came back positive. Most commercial labs are unable to do this test at all. If they do, no research hospital like M.D.Anderson or UCSD will take their word for it. This puts me in an unfavorable category, as the mutated CLL cells are not nearly as robust and are more easily killed off or held at bay by any number of assorted treatments. The unmutated CLL cells are gnarly bad. They are much like the roaches that got used to the insecticide you were using and grew fat on it. They are much like the superbugs lurking in hospital corridors that no antibiotic will kill. It is a bad houseguest.
Tennesee and I both have unfavorable characteristics about our unfavorable disease. We do share in at least one good thing though: Dr. Gooday and his staff.
When I got word from Sam that they were there, I thought it fortuitous. She was there to begin a clinical trial for a combination of the proven immunotherapy drug Ibrutinib and the new, promising drug Venetoclaxin. The combination of the two drugs offers much to the CLL patient. I am hoping it offers much to Tennessee. So is Gooday. So is Nurse Alice. So is Sam. So are the rest of her family and friends. We all are.
Apparently ramping up to the required dosage of Venetoclaxin is tricky. She can’t do it at home, but has to be on hand in Houston for six weeks. On my clinical trial drug, Ruxolitinib, I had to come to Houston every two weeks for six months, and since then once every two months for follow up. My trial is designed to address and relieve the symptoms of CLL (extreme fatigue, the accumulation of auto-immune diseases, joint pain, bone pain, night sweats, etc.), promising a better quality of life without the promise of curing CLL or putting me back into remission. Tennessee’s clinical trial is designed to test the efficacy of the combination of drugs she is taking to see if they will put her into remission. I sure hope so.
HIPPA rules and regulations being what they are, Nurse Alice just looked at me and smiled when I told her I knew that Tennessee had a 10:45 appointment that morning and would be starting her Venetoclaxin trial that same day. It was about 10:15 when I told her this, since my own appointment had started at 9:45. She just smiled again. Nurse Alice has the nicest smile.
Dr. Gooday said nothing, other than nodding his head as if to say, “I hear what you are saying,” without tipping his hand. I understand the rules. The law is the law. He began to tell me about the hope they held out for the trial and what they hoped Venetoclaxin would accomplish for its participants. He also told me about the remarkable things happening with the CARS-T experimental treatments where they remove one’s own antibodies (T-cells), modify them to specifically target the cancer cells, and put them back in where they reproduce and will hopefully work like a cancer vaccine, in effect, arming your own body to fight your cancer for as long as your body continues its cellular respiration (as long as you are living).
He, Nurse Alice, and Nurse Sarah looked at my blood numbers. Remarkably, after two years of a slow, stready climb in White Blood Cell count (typical for the CLL patient) and a steadily climbing Absolute Lymphocyte Count (the number of bad B-type white blood cells, since CLL is a cancer of the B-white blood cells, thus the designation “lymphocytic”), I was looking at a 25% reduction in both those numbers since two months ago. Now a spike in any particular CBC may mean nothing other than you are just dealing with some minor immediately present infection, or even a major infection (like the flu—No!No!No!No!)…but a reduction after two years of a slow, steady climb? That is good news indeed.
Gooday: We have seen some patients show a reduction in WBC after being on ruxolitinib for an extended period.
Me: Does this mean that the Ruxolitinib may be having some effect on the ROOT of the disease and not just the symptoms?
Gooday: Indeed it might. We are hoping to continue the trial beyond the two year original scope.
Me: I’m in. I’m all in.
The ruxolitinib has been kind to me. I have hardly had any side effects. I started with some, but they were bearable, and now unnoticible. That does not mean that something terrifically awful is not lurking just around the corner, but time is too short to fear all the things that MIGHT happen. The thing that IS happening is that my WBC showed a remarkable decrease in the last two months. I’ll take that ball and run with it.
When Nurse Alice started to examine me, feeling around for my spleen, checking my lymph nodes, probing under my right arm for the golf ball sized (so it always seems) enlarged, sore lymph node I’ve had there for nine years, I realized I could not feel it. She could feel it, but it was not sore, and not as large as it had been. I had not noticed that improvement until then. Today, this very day, it seems to be back with me, sore as ever, but on Monday, February 4, 2018, it was not noticible. Perhaps everything was just behaving for Gooday and company. Perhaps my bad white blood cells are again up to their no good tricks. I doubt it, but we’ll see. I will not worry about it.
In my haste to get through and get back on the road to home, I anxiously waited for Nurse Alice to bring me a couple of prescriptions. She sent them to me by Nurse Coy. I got them and walked out of the clinic door and back into the waiting room. There is one of those electronic locks on the door. I made a quick scan of the waiting room, not seeing what I had expected. Tennessee and Sam were not there. I turned to go back in just as I heard the door latch click. I looked around the waiting room again. No Tennessee, no Sam. I stood there in dismay. I looked at the locked door. I looked around the waiting room one more time. I looked at Debbie. I was crestfallen. It was so busy in that clinic that morning there was no way I’d make it past the clerks, who had no time to even leave their post for a minute, to persuade them to get me back inside. My time was over.
Abruptly, the door burst open spewing forth a scowling Nurse Alice.
“Mr. Sharp, where are you going?” She demanded. “You said you wanted to meet Tennessee.”
“I do. I was hoping to see her and her husband out here,” I said.
“They’re not out there, they’re in here,” she said, nodding her head down the examination room corridor as she stood in the the formerly locked door. “Come back in.”
With Nurse Alice, you just follow your orders and are glad to do it. She is a first rate healer.
And in a brief moment, almost as brief as a Facebook post, but in the flesh, and face to face, there was Tennessee in real time. She got up from the examination table she was seated on, a smile on her face.
“I’m going to give you a hug,” she said, and she did. It is a surreal moment when our digital lives and our real lives intersect and turn out like they should, knowing that the Facebook person and the real person are one and the same. I like real people. I think everyone likes real people. What you see here is what you get. This is as it should be.
I then shook Sam’s hand, grinning like a jackass eating briars. “I am so glad to be able to shake your hand. This is very important to me.”
He smiled, continued shaking my hand and said, “I’m glad to meet you, too.”
I turned back to Tennessee. I put my hand on her shoulder, and said, “I have prayed for you. I have rooted for you. I have cheered for you. I have cried for you. I want you to know I am in your corner, and I hope this trial does wonders for you.”
“I know, and me, too,” she said. I had to bite my lip to keep it from quivering. The lump in my throat would not let me say much more than that.
Nurse Alice had a huge smile. Back down the hall a bit, I could see Gooday with a big smile, telling others that had gathered at all the celebratory noise, waving his hand about and saying in his not just Australian, but his Melbournese-Victorian-Australian accent, “What’s going on over there is beautiful. They have rooted for each other for a long time and now finally meet, here, in this place.”
He was continuing his big grin when I heard Sam say, “Maybe we could get together later this afternoon.”
Sadly, I shook my head. “We gotta go.” He nodded, needing to say nothing more.
One more hug. One more handshake, and we were gone. It was a busy place, and to have stayed any longer would have been bad form for the staff and the waiting room full of other patients. But they made time for us. They made it a point to make time for us. We are thankful for that.
“We’re coming to your part of the world, soon,” I said to Sam as I was walking down the hall towards that self-latching exit door, “Just as soon as Tennessee gets back home and on her feet, responding well to this new treatment.”
“We’ll enjoy that,” he said. Maybe he will, maybe he won’t, since, if we go out to eat somewhere, I’ll likely be trying to get him to pay! “Where did I put my wallet?” I might say as I fumble around pretending to look for it: a tired, old trick. [GRIN]
I gave Tennessee one last smile, and then the door shut with a CLICK. Everyone was back to business, except for me and Debbie. I was exhausted from an emotional experience, much like three weeks ago when author/novelist and fellow Mississippian Steve Yarbrough forever stopped being a mere Facebook friend. Much like I was when banjoist and remarkably good human being (like all Marines) Mike Caldwell forever stopped being a mere Facebook friend. Tennessee and Sam are no longer mere Facebook friends, though we did not get to share as much time as I did with Steve or have long since shared with Mike now that we’re bandmates in a fine bluegrass band (Clear Blue Sky).
That day will come, soon, though. Time, good medicine, and good medical practitioners are on our side.
And we are on each other’s side.
That makes all the difference.
However much they pay oncologists and oncology nurses…it is not enough. They have an unenviable job. I salute them, each and every one. Amid all the folks like Tennesssee and me, who walked in under our own motive power having a performance status of 0, surrounded by those with a performance satus of 1, interspersed with those whose performance status is 2 and 3, amid those whose performance status is 4, and a few whose performance status would soon likely be a 5 (see http://ecog-acrin.org/resources/ecog-performance-status), we have so much to be thankful for.
I saw those who were walking around in a bewildered state, hearing the clerks ask a time or two, “Is this your first time here?” You could tell it was. You could see in their eyes that they were not yet resigned to the fact that this had happened to them, as though it was all a bad dream, and soon they’d be waking up, restored from a bad sleep by the rising sun and sunshine on their face. I know that look, I know that feeling. Everyone there either had that look and feeling at one time, or had it that day.
In that sense, we are all the same, for cancer is a great leveler, leading, in the long run for many, to the ultimate leveler. Whether it is cancer or not, the great leveler stares us all down. He certainly has time on his side. He can and will outwait you. He can be a swift, relentless stalker, or he can be a patient hunter, biding his time until you come calling for him. He has an unlimited line of credit at the time bank. We all will eventually find ourselves overdrawn. In the meantime, what will we spend our limited time on?
As I recently heard one of the top CLL researchers say in a video produced by the CLL Global Research Foundation, “CLL may not ultimately be the cause of your death. Between now and then, you have a life. You should get on with the enjoyment of it.”
Amen to that!
Go Tennessee! I’ll even wear orange if it will help. [Grin]
PS – I am not a physician, an oncologist, or a hematologist. I may have a lot of things wrong here, as any layman might. I may not even understand all that I know, and likely don’t. You must trust your oncologist/hematologist. If you don’t, you should be searching for a new one right now. I wish you much success. I have TWO that I trust, respect, and admire. Hemosapien, I never forget you! Thank you.
©2018 Mississippi Chris Sharp
3 thoughts on “2/12/18 Houston as the Gathering Place”
Very moving Chris!
On Feb 12, 2018 9:17 PM, “Mississippi Chris Sharp CLL Blog” wrote:
> Mississippi Chris Sharp posted: “It was just a simple post on Facebook > about being in Houston for my two month checkup. It was followed by a > message from Tennessee’s husband, Sam. “We are here and would like to get a > chance to meet up if we can,” Sam wrote. Tennessee and Sam and I have” >
Thanks Chris. I just started my 25th bottle of ibrutinib. We are all thankful for our caretakers.
Indeed we are. I’m glad the ibrutinib is serving you well. May it continue to do so.