Robert G Thibodeau
My wife, Joy, had just left for her Tuesday night bowling league. I settled into my recliner in the family room and clicked on the TV. I set down the remote and crossed my arms across my chest. My right hand rested on my left breast and felt something strange, a small lump on my nipple. I didn’t think much of it as I’m a man. “Besides, tomorrow I’ll be getting my annual physical” I mused, and made a mental note to mention it to my doctor.
The date was March 11, 2002
Dr Silbiger was very thorough and poked and prodded all the usual spots. As he finished his exam, he was jotting notes, and muttered the usual admonitions. “Bob, you are in pretty good shape, but you should get more regular exercise, lose a few pounds, and pay a little more attention to your diet. Beyond that, keep doing what you’re doing.” It was at that point I remembered to mention the small lump on my left breast. “Doc, I noticed this last night” I said as I raised my shirt again and pointed to my left breast. He stared intently for a moment, felt the lump, and suddenly became very quiet and sullen.
He began to jot on a prescription pad. “I don’t know what it is, but it needs to come out” he said. His face and tone belied his uncertainty. Little did I know then that the inverted nipple and lump were pretty classic signs of breast cancer. He asked a few questions about any fluids or other things expressed from the nipple. My responses were all negative, giving me a false sense of security. It was only then my mind brought up the memories of the small “pea sized” lump I imagined I felt in my left armpit. His routine probe of my arm pits earlier had not yielded anything abnormal, and I took a small amount of solace in this fact.
“I’m giving you a script for an ultrasound, mammogram, and a referral to a surgeon” he muttered. “Get it all done as soon as you can.”
I immediately went home scheduled the imaging tests, and found a surgeon in my network. Given the tests schedules, I had to wait until early April to complete the tests and get to visit the surgeon. She met with me and explained the next course of action. She would schedule an outpatient lumpectomy for April 26. During the lump excision, the tumor would be examined to determine if it was malignant or benign while I was still under. If cancerous, she would go back in get clear margins, and then proceed with an excision of a sampling of the left armpit lymph nodes to determine if there was any metastasis.
The next thing I remember was waking in the recovery room felling a bit groggy and slightly nauseous. My beautiful wife Joy and daughter, Aimee, were staring down at me with red puffy eyes, forcing a smile as she delivered the news. “The tumor was cancerous and they did find some cancer in the lymph nodes” she said with a weak smile. Indeed, the tumor proved cancerous, and 11 lymph nodes were removed for examination. Two were found to be positive. I was prepared for the worst, and the news was shocking but not totally unexpected.
I was referred to Dr Charles Vogel, a highly recommended oncologist of note with a specialty in breast cancer and actively involved in clinical research. I got an appointment with him, and that first visit was my first and only audience with him. He reviewed my case and the family history. My mom and her mom had both died in their 50’s of ovarian cancer. Later I was to find out my maternal great grandfather died of breast cancer in his 80s. My brother died at 43 of a very rare and aggressive form of throat cancer. His oncologist said that he should not have had this form. It was most common in heavy smoking and drinking black males in their sixties or older.
“That’s a rather impressive family history” Dr Vogel exclaimed as he perused the sheet. “Impressive” was not the word that I would have chosen.
I was assigned to one of his protegees, and met with her. She reviewed my images, lab results of the tumor, and lymph nodes analysis.
“The good news, Mr Thibodeau, is that the tumor has been characterized” she said, “and of the five characteristics, yours shows that 4 of the 5 measures were the “good” types. “The only negative characteristic is the irregular, star shaped breast tumor as she pointed to the CT image from a month ago. “It’s not encapsulated, and as often happens in men’s breast cancer, it has metastasized to the lymph nodes. The scan does not show any other metastasis, so we put you at Stage 2 breast cancer. With proper treatment, your chances of 5-year survival is 85 to 90%!”
“I’ll take those odds, I thought.
In her consultation with Dr Vogel, she explained that my case dictated a 6-month course of a chemotherapy of a protocol called AC-T. The first 3 months consists of weekly infusions of the AC (Andriamycin and Cytoxin) cocktail. Following that, I would receive 3 months of the T (taxotere.) To save my veins, I would have a Port inserted in my upper chest. This would prove to be a God-send in the long run. Following the 6-month infusion protocol, I would be on an oral chemotherapy called Tamoxifen, a daily pill, for up to 5 years. It would suppress natural estrogen production which might cause a cancer re-occurrence.
After that, I could continue with Aromacin, an aromatase inhibitor, which does the same thing. Also, I was encouraged to consider the new DNA analysis to see if I possessed the BRCA gene mutation. It was highly likely given my “impressive” family history. I discussed it with my wife, as well as my daughter and sisters. They would most likely be affected if I were to be positive. The doctor explained that ovarian cancer is very common, second only to breast cancer, for those with the BRCA gene mutation.
At the time we decided not to proceed. All were advised of the risks, and all my sisters had undergone hysterectomies as a preventative measure after their child bearing years. Later, at the behest of my niece, herself a doctor, I chose to undergo the test. As expected, I was positive.
Our family mutation was characterized as a BRCA 2 with a particular twist that made ovarian cancer common in women, and breast cancer and prostate cancer in men highly likely. It is a dominant gene, and the likelihood of passing it is 50/50. But if the offspring does not inherit the mutation, it stops there. It does not later resurface in that blood line. My daughter tested positive, my son not. Subsequent tests of my siblings would prove that five of the six were positive.
Many other members of my Mom’s family would test positive and her half-brother later succumb to male breast cancer. We would later find that my great grandfather was probably the initial carrier, and he died at the ripe old age of 80 plus. We later speculated that he, despite being French in heritage, was likely descended of an Eastern European Askenazi Jews. There was always some ‘never to be mentioned” secret to his back story. And dogged ancestral research never turned up any clues as to where he came from, when he was born, or who his parents were.
Getting back to my journey, I realized we were on a long and difficult road. I immediately chose to inform friends and family of the situation and ask for the support, especially prayer support. I decided that there were things in my life that I could control, and things out of my control. My genetics were set, but I could affect how they would express by adjusting my lifestyle. So, I would change what I could, learn what I could about this curse, trust in my medical team, and leave the rest to God. Mark 14:36 was my prayer of choice. I leave to the reader to pursue that verse.
I had my port inserted by the same surgeon and I soon began my weekly infusions. My first visit found me in a large room fitted with about 20 recliners, all equipped with infusion pumps and other paraphernalia. I was the only male in the otherwise female environment. Ladies actively chatted, but I was unrecognized, save an occasional questioning glance. My nurse showed up with a large plastic bag or “Orange Kool-aid.” She explained that she would “access my port, give me some saline, and then start the Kool-aid infusion.” She also explained that it was so caustic, that if it dropped on your skin, it would burn a hole in it. Infusing it slowly in to the large vein would minimize any damage to the veins.
She explained that I probably would not feel anything unusual for 2 or 3 days, after which I would probably feel some nausea, tiredness, I would lose all my hair, and perhaps experience other unpleasant side effects. I was given a list of low probability high risk side effect to be aware of, and notify them immediately should they appear. After a few hours I was on my way home, feeling quite normal.
Indeed, after two or three days, I started to feel like a bad hangover, without the headache. I puked a few times and felt much better. Over the course of the next weeks the same: nausea, increasing fatigue, and soon clumps of hair were littering the pillow and shower floor.
When my final AC treatment was complete, my doctor exclaimed, “You did so good on the AC, you will have no problem the Taxotere!” Had I known what was to come, I would have asked more questions about the possible side effects
I was given the opportunity to enter a clinical trial for a new protocol. It would involve an infusion only once every three weeks, but I would need to come in the next day for an injection of the trial drug Neuprogen. The Taxotere causes, among other things, a reduced White Blood Cell (WBC) count, raising the risk of infection. This drug would boost WBC production, but it did have the side effect of bone pain as the bone marrow is kicked into high gear producing the protective white cells. After reading the disclaimers, I agreed to offer my body to the furtherance of science and join the trial.
When I appeared for my first infusion of Taxotere, I was assigned to a new oncologist, another protegee of Dr Vogel. She was an Asian doctor conducting the trial. I would be seen by her as we proceeded. That day, I was to receive a triple does on the Taxotere based on my body weight. I was given strict instructions as to possible side effects, especially an abnormal fever above 101. After my initial infusion I was to report the next day for my shot of Neuprogen to boost my immunity.
Within a day, my fever spiked to over 101. Called the special number that I was given and after a few questions, I was told to get to the ER in the adjacent hospital ASAP. I ended up there for a week as they worked to reduce my temperature. I was told my incident disqualified me from the trial, and I would go back to the weekly treatment followed the next day with the shot.
Harking back the fateful words of my first oncologist, we find out now that I have a rare and very severe reaction to taxol drugs. They are derived from the European yew tree, an evergreen. They really did a job on my white count and the progeny couldn’t keep up. Over the course of the next three months, I would develop all sorts of vile side effects.
The peripheral neuropathy began to affect my hands and feet, I also saw my toe nails and finger nails turn to wax, and slough off. As the neuropathy advanced, I found I could no longer tolerate touching anything rough. My wife’s car had a canvas steering wheel cover. It felt like sand paper to me. I took to wearing half-finger kid gloves. Neuropathy in my feet advanced, and I felt like I was walking in hot beach sand, ever present. It felt like some vile creature spent all his waking hours shoving toothpicks under my nonexistent toe nails. I soon found the only footwear I could tolerate was open-toed sandals, with super-soft padded leather insoles. It would remain that way for five years.
As if that was not enough, the neuropathy affected my most private of extremities. Erections were painful, as were ejaculations, but sex was still worth it. After all, who knew just how many opportunities for “marital bliss” would remain?
The final insult was the mouth and anus sores. Chemo targets fast growing cells like cancer, hair cells, and mucus membrane cells. Open lesions and low immunity fosters those painful cankers. A metallic tasting mouth wash concoction helped somewhat alleviate the mouth sores. Baby wipes soothed the butt.
Approaching the mid-point of treatment, I began to resemble Uncle Fester from the Addams family. Sunken black eyes protruded from the sullen pale skin of my bald head and bare face. I grew ever weaker. Any effort was exhausting, and I named the condition “crap and nap.” The efforts to get up, walk to the bath room and do my business demand a nap upon return. And I felt worse than I looked.
When I arrived for my last treatment in November, 2002, my doctor, a very competent Latina, reviewed my blood work, checked me out thoroughly, and proclaimed that after careful consideration they have decided to forgo my last infusion. They didn’t feel I could survive the trauma. That initial triple dose of taxotere and all the subsequent single doses accounted for the proper total, given my now much reduced body weight. The chemotherapy nightmare was over.
But now I was given a choice. To ensure that all traces of cancer are gone, I needed to continue with three months of radiation or submit to a bilateral mastectomy. It didn’t take long for me to decide. “Playgirl Magazine had not yet called me for a center fold layout, so let’s just cut ‘em off’” I thought. Besides, the surgical recovery should only take a month, compared to three months of radiation. I never regretted that decision.
Over time, I overcame my reluctance to go bare chested in public. As my scars healed, my wife said, “Your chest and belly resembled a jolly old Asian man.”
I opted to skip any reconstructive surgery. It’s considered cosmetic and not covered under insurance. I also avoided the tattooed fake nipples. You know, that whole missed Playgirl thing.
I grew stronger. I witnessed the birth of my first grandson, Tyler, in 2003, and the second, Brayden, in 2011. I was there for Tyler and our family, when in 2008 he was diagnosed with the deadly childhood cancer, neuroblastoma. His diagnosis was far harder on me than my very own. I tried to bargain with God, “Take me now, Lord, and give Tyler a good long life as I had enjoyed thus far.” Seemed like a fair trade. But God had different plans. My cancer experience gave me and our family insights and appreciation for the long road ahead. After a very difficult 18-month ordeal, he was declared in remission. He has just turned 18.
I decided that I needed to take responsibility for my health. I began riding a bicycle, and found I liked it. I graduated to those skinny bikes with the uncomfortable seats. I was doing long rides with groups, and eventually got into triathlon. I set a goal to complete a full 140.6-mile Iron Man by age 70. I completed that goal in 2015 at age 67. I felt invincible.
After 18 years, I found that my cancer journey had not been completed. A malignant sebaceous carcinoma was found on my lower right chin. Successful MOHS surgery in January, 2018, found clear margins. I was being followed by the head and neck surgeon and an oncologist with whom I had established a relationship given the long time since I had visited an oncologist.
In February, 2020, I felt pain in my lower left rib cage. It lasted about a week and I passed it off as a pulled muscle sustained while laying tile at my son’s house. It subsided after a week, came back for a few days, and subsided again. In retrospect, I should have sought medical attention then. A few other symptoms arose and left. I thought nothing of them.
On March 10, 2020 (there’s that March curse again!) I had my annual physical. All was well, but my doctor was puzzled by an extremely high Alkaline Phosphate result, four times normal. She planned for a re-test.
The next day, we went to Disney Epcot. I’m normally the mule that carries a heavy back pack loaded with water, food, and rain gear. That day, I did not feel normal. I didn’t want be there. I soon found a picnic table and reserved it for the group. The day seemed to last forever.
The following day, March 12, I had a CT of the head, neck and chest ordered by the surgeon. She entered the room and delivered the most unexpected result. My head and neck were clear, but there was a large abdominal mass and signs of metastasis. Fortunately, I had a routine follow up visit with my oncologist an hour later. She said he would review the situation with me, and prescribe the course of action.
When I met with him, he explained that he would refer me to an abdominal surgeon, do some additional testing, and start a treatment plan of Keytruda Immuotherapy and Chemotherapy consisting of Abraxane and Carboplatin.
I asked about a 2nd opinion. He encouraged it, and suggested either Moffitt Cancer Center in Tampa, or Mayo Clinic in Jacksonville. The next day I contacted both and due to the growing concern over COVID, Mayo was not taking on new patients. Moffitt was, however, and I made an appointment for a consult.
On my visit to Moffitt, I met with the abdominal surgeon who declared my cancer to be inoperable. Not the words anyone wants to hear. At Moffitt, the oncologist concurred with the Orlando Health oncologist, but upon further deliberations, they decided to start with the Immuotherapy only, avoiding the Abraxane taxol drug. I began treatments at Orlando Health soon after.
Unfortunately, six weeks of the Keytruda failed to harness the aggressive fast-growing tumors. I lost 25 lbs, and my belly distended like I was 9 months pregnant. The exhaustion was debilitating. Far worse than anything I had previously, even after my 16 hours of nonstop effort in the Iron Man race. I was convinced that I wouldn’t see the Christmas holiday.
Fortunately, the oncologists added the Chemotherapy protocol. The tumors began to shrink and metastasis sites diminished. I found the new chemo to be much more tolerable than the original AC-T of 19 years prior.
It’s been almost a year now. I feel quite normal, but the chemotherapy suppresses the red cells so I tire very easily. The immune system is also depressed by infusions so I receive a shot of the same drug I was in the clinical trial for. The Abraxane, being a Taxol derivative, has caused some increase in the neuropathy and mild tinnitus. Most recently we find that the Carboplatin has begun to irritate my kidneys after a year. A steroid treatment and diet modification has helped in calming the kidneys.
My future is uncertain, but we are optimistic. Immunotherapy holds the promise of remission, but my chances are in question as my cancer, unrelated to the breast cancer, is quite rare, and not much data is available.
I continue to educate myself on my conditions and take responsibility for my care. I do what I can to affect a positive outcome, challenge my medical team to provide the best possible care, and I leave the rest in God’s hands.