Cancer: A story of Contentment

Say what? Contentment?

Yeah, but it was long time getting here. So let’s begin at the beginning, some 23 years ago. My wife and I took a mini-vacation at a Tennessee campground while our two sons stayed with my dad. I made a flat, racing type dive into the campground pool. A freak hydraulic concussion during the dive crashed into my right testicle. The pain was exquisite.
A doctor gave me a little blow-up ring to sit on while it healed itself and insinuated the testicle was not damaged by the dive, but was a manifestation of an STD. The exquisite pain gradually subsided to nagging pain, then aggravating pain, and finally to no pain at all. Scar tissue could be felt, but apparently there were no other issues. STD, my eye.

Flash forward to three years ago when it took several months of diagnosis - including repeated nerve conduction studies, a nerve biopsy and a lumbar puncture - to show I have an immune system disorder called chronic inflammatory demyelating polyneuropathy, or CIDP. The bottom line for the acronym is this: My white cells like to eat the coverings of my nerves, particularly those in my extremities. This makes my nervous system misfire, causing pain, tremors, impairment of motor skills and micro-motor skills, fingertip numbness, sudden lunges in my legs, hyper hiccups and other such novelties.

CIDP cannot be cured, but it can come and go, wax and wane, and it can be suppressed after a fashion. Prednisone is the usual treatment, but it makes me fat and crabby. Last autumn, my neurologist suggested I try Imuran. He warned me that it could cause liver damage, and that I would have to be monitored with monthly blood tests for six months to see if my body could handle it without damage. If I proved tolerant, he would wean me off the Prednisone, and leave me with Imuran, which does not cause weight gain and crabbiness.

So there I was, peddling along with two strong immune system suppressants, with no apparent issues, looking forward to the possibility of dropping Prednisone. Then came winter, and I started feeling something, a slight presence if you will, just under my left short ribs. There was no pain, mind you, just a localized feeling that something wasn’t quite right. I was seldom hungry, which was truly strange. A bad cold led to some congestion a few weeks later, so I decided a trip to my internist was in order.

My doctor pushed, prodded and kneaded, trying to feel anything that might be causing this presence. He could not find anything, but sent me to X-ray, he said, “just for kicks.” He wanted to be sure I was free of pneumonia. He said he’d let me know soonest if the X-ray showed anything of interest. I got a call that afternoon. The X-ray showed I was pneumonia-free, but it also showed two nodes on the upper right lobe of my lungs, far from my left short ribs. This led to a CT scan of my chest. It confirmed the two nodes. But because the CT technician mistakenly included a small portion of my abdomen, it also showed an apparent shadow on my pancreas.

This led to another set of CT scans, with and without contrast, that verified a spot on my pancreas, and inflamed lymph nodes nearby. Now then, how are these CT scan results and the CIDP and a freak diving injury connected? Please bear with me. The findings set off a series of procedures. First came an endoscopy with a needle biopsy of the lymph nodes. Biopsy showed presence of poorly differentiated cancer cells in two lymph nodes, which are located very near the pancreas. My wife got the call from our internist, who said, “I’m sorry; it doesn’t look good.” She called her father, who is a retired surgeon. “What does he mean when he says, ‘It doesn’t look good’?” she asked.

“It means it doesn’t look good,” her dad replied. “I had a friend who managed to live two years after that diagnosis but I have never known anyone else to last that long.” This conversation my bride did not share with me until just now. But I felt at the time she and her dad might be holding something back. A colonoscopy followed, that showed no apparent signs of cancer in lower tract.

Then came the first trip to the oncologist - the same man who successfully treated my bride, Katie, for breast cancer eight years ago. He scheduled a PET scan of my trunk. It showed the lymph node hot spots, the as-yet-unidentified spot on my pancreas, and the two warm spots in my upper right lung lobe. I e-mailed my neurologist with the news, and he told me to stop the Prednisone and Imuran immediately so my immune system could get back to normal.

Meantime, we had the needle-biopsy samples sent from UAB to Trinity, where my oncologist is based, and where any further surgeries would be performed. We requested Trinity do its own analysis on the cells. With the results, the oncologist made a preliminary diagnosis of pancreatic cancer, using all of the data available at the moment. But the first surgery was biopsy of the lung warm spots to remove them as a cause of the cancer cells.

It was a relatively simple surgery that required only three incisions. One of those incisions was for a half-inch-diameter drain tube that rattled against a rib whenever I moved. The busted testicle provided an exquisite pain. The drain tube provided an exquisite pain with teeth.

The nodes were sent to the lab. It was time for another surprise: the nodes were caused by a common fungus found in river bottoms all over the world. It only becomes a threat to anyone with a compromised immune system, which I had, thanks to the CIDP treatment. My bride and I have lived on the Warrior River for several years, and is where we still live. I started a 12-week treatment with Diflucan, the standard for the fungus and yeast infections worldwide, while the cancer diagnosis process continued.

As the nodes were removed, a port was installed near my right collarbone, going on the assumption that chemotherapy would be required. While recovering in the hospital, an infectious diseases specialist scheduled a lumbar puncture to check spinal fluid for any sign the fungus had gotten that far (it can be lethal, if so). No one told me after this puncture that I needed to lie still for a couple of hours before going home.

Uh-oh. Here came a lumbar headache on a Friday. There would be no chance for a lumbar patch to cure it until Monday. There was no cancer fungus in the spinal fluid, but all I cared about was the headache. Let me insist that no one should have to undergo a headache like that, for a whole weekend no less. So, under anesthesia again, this time for the patch.

Another, but more dangerous, surgery was scheduled as soon as I felt up to it, which was in about three weeks. This time, a specialist in pancreas surgery would do the work. He warned that surgery on and around the pancreas is delicate work, and that removal of the hot lymph nodes would be especially dangerous because they sit so close to the superior vena cava. At this point, we all believed I was going to have a full or partial Whipple procedure to take a hunk of the pancreas because there was some question of whether I had poorly differentiated carcinoma or sarcoma, or adenocarcinoma, along with pancreatic cancer. The surgeon also warned that if his scope showed my liver to be involved, he’d just close me up, and chemo might or might not be scheduled.

He made his first small incisions, and the scope showed the liver itself was clear. The plan at this point was to do what was normal: make a massive incision to open me up for a good look at the pancreas. By God’s grace, the surgeon said afterwards, he never had to make that incision. For the first time in his career - a career that included hundreds of such surgeries - he performed the delicate feat with five small incisions. He took a small piece of the cyst for biopsy. The cyst proved to be cancer-free, and the lymph nodes proved to be infected by very small carcinoma cells - and lots of fungus. But what kind of cancer? Where was it located? What was the source?

UAB and Trinity pathology reports were sent to the University of Maryland at our request to a pathologist who was said to be a bit of a young gun, and eager to solve the mystery. We knew of him through my daughter. One of her best friends from Sewanee is married to the pathologist. The friend knew of my mysterious bout with cancer through my daughter’s e-mails requesting prayer from friends and family.

While I was at Trinity waiting on an appointment with my oncologist a couple of weeks after the pancreas surgery, my oncologist appeared, grinning. He had just come from a meeting of my ad hoc tumor board (the oncologist, pancreas surgeon and others). They had received a call from the Maryland pathologist. My cancer finally had been identified - as pure seminoma, a kind of testicular cancer that is easily treatable nowadays with chemotherapy.

But this pointed to the probability of a third surgery to verify the source of the seminoma, so an appointment was made with a urology surgeon and his ultrasound technician. I told the technician that I was absolutely sure her equipment would show a beat-up, scarred right testicle whether it was the source of cancer or not. Sure enough, the tech confirmed what I predicted. Next came the bare-naked examination by the urologist and an assistant surgeon - who was, of course, a woman like the ultrasound technician. This is when any remaining dignity dissipated, by the way.

Yes, the surgeon agreed, the testicle looked to be in bad shape, but it would have to be removed to determine if were, indeed, the source of the seminoma. A needle biopsy through the scrotum cannot be done in such cases because it might very well set loose more cancer cells. So here came another surgery, this time an incision in my right groin that would allow the surgery to pull out the offending testicle, remove it, then tie off various tubes and put them back in place sans testicle. Let me tell you right now, the edema and discoloration that resulted should not be visited on any man. A biopsy showed the banged and battered testicle was not the cancer source, but as Occam’s Razor would dictate, it was covered in scar tissue.

So what, then? The urologist explained that after we are conceived and the fetus develops, the kidneys and gonads - whether testicles or ovaries - are part of the same ridge of flesh. Therefore, testicular cancer also can occur anywhere between the kidneys and testicles. Well, my kidneys, liver and pancreas were cancer free, and so was my newly invaded nether regions. What now?



Chemotherapy. This was necessary even though it was possible that the seminoma found in the offending lymph nodes was the only cancer in my body, that the cells had spontaneously appeared only there, and that the cells were entirely removed with the lymph nodes. The oncologist did not want to take any chances, and neither did we. Chemo was scheduled. BEP was used: Bleomycin, Etoposide, and Cisplatin, which contains platinum, the source of the P in the acronym. B causes high fever, E causes nausea, and P causes hair loss. The plan set a three-day regimen for each of two rounds: BEP on Monday, EP on Tuesday, and P on Wednesday, then on Thursday, a shot to enhance white cell production.

On the Thursday evening of the first round, I made a scene at the local Mexican restaurant. My bride declared it a seizure. My son declared it a seizure. The nurse who happened by declared it a seizure with ventricular tachycardia. The ER doctor declared it absolutely not a seizure and especially not a seizure with tachycardia. With the seizure/not-seizure in mind, my oncologist decided to go with a five-day regimen for the next round just in case, to spread out any effects.

The rest of my treatment was no more exciting than an occasional episode of syncope and a whole lot of fatigue. Chemo ended on June 20. A PET scan in September showed no cancer or hot spots anywhere. I will have to undergo a PET scan in six months and yearly after that to check the spot on my pancreas. OK. So where does contentment come into this rollercoaster cancer/fungus/surgery/procedure ride? Was it the six times I was under anesthesia?

I was content, almost blissfully peaceful, through this ordeal, no matter what the news from any appointment or scan or lab result. With the pancreatic cancer diagnosis, I never got alarmed, anxious, or even slightly nervous. I did set about making lists of stuff that I needed to get done should I be told I had six months or a year to live. And whenever someone asked me how I was doing, on Facebook or in person, or when I posted my own updates on Facebook or in my photography forums, I always noted that I was content, followed by a smiley face.

I knew people were praying for me; the pancreas surgeon prayed before my surgery. I prayed always for courage, strength, wisdom, grace and, yes, for miraculous healing. I also prayed continually my Father’s will be done, and that my ordeal somehow glorify His name. Hey, how else could I have photographed rides on the gurney to surgery, my children and grandchildren in my hospital rooms, my trips to chemotherapy?

What a ride it has been. I suppose some people might point to this roller coaster as a series of coincidences, that many of the surgeries and procedures were not even necessary, and that the immune suppressants allowed the fungus and perhaps the cancer as well. But I have to say, if not for the fungus nodes, the cancer might not have been discovered for months, if not years, when treatment would have been too late. Everything was necessary for this story to happen, and I am content to have felt every ounce of pain, every shred of fatigue, every hour in the hospital.

You know, that little presence is still there. It can’t be the lymph nodes; they are gone. The cyst on the pancreas is in the wrong place. I feel it usually when I eat a little too much. I also feel it at other times, out of blue, hungry or full. Maybe it is something like what the Apostle Paul called the thorn in his flesh; a humility check, you might say.

Well, I figure the presence is there to remind me that I do not belong to me.

And that I do belong to Him.