An Ironman’s Journey
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. It was March 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 concern and 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 armpits 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 sensed the urgency in his command.
I immediately went home and scheduled the imaging tests. I found a surgeon in my network. Given the test 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 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 feeling 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 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 my family history. My mom and her mom had both died in their 50s of ovarian cancer. Later I was to find out that 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 chemotherapy of a protocol called AC-T. The first 3 months consist of weekly infusions of the AC (Adriamycin 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 Godsend in the long run. Following the 6-month infusion protocol, I would be on 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 Aromasin, 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 and my daughter and my 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 childbearing 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 do not inherit the mutation, it stops there. It does not later resurface in that bloodline. My daughter tested positive, my son did 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 from 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 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 it 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 for an occasional questioning glance. My nurse showed up with a large plastic bag of “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 into 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, and 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 effects 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 a headache. I puked a few times and felt much better. Over 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 with the Taxotere!” Had I known what was to come, I would have asked more questions about the possible side effects
I was allowed 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 Neupogen. 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 dose of 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 Neupogen 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 to 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 did a job on my white count and the Neupogen couldn’t keep up. For 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 toenails and fingernails turn to wax, and slough off. As the neuropathy advanced, I could no longer tolerate touching anything rough. My wife’s car had a canvas steering wheel cover. It felt like sandpaper to me. I took to wearing half-finger kid gloves. Neuropathy in my feet advanced, and I felt like I was walking on hot beach sand, ever-present. It felt like some vile creature spent all his waking hours shoving toothpicks under my nonexistent toenails. 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 bathroom, 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 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 Ironman 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 MOSH 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 a 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 backpack loaded with water, food, and rain gear. That day, I did not feel normal. I didn’t want to 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 Immunotherapy and Chemotherapy consisting of Abraxane and Carboplatin.
I asked for 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 Immunotherapy 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 Ironman 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 neuropathy and mild tinnitus. Most recently we find that the Carboplatin has begun to irritate my kidneys after a year. Steroid treatment and diet modification have 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 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.
UPDATE May 2022
I continued with my treatments, but shortly after I wrote this in April 2021, my creatinine level shot up above normal. This was an indication that my kidneys were being affected by the Keytruda hypnotherapy. This is a side effect that affects about 8% of the patients. My oncologist ceased the Keytruda. Gone was the hope for a cure.
To calm the kidneys, she also began me on a 70 mg prednisone taper. I took seven 10mg tablets a day for three days and then decreased to six tablets, then after three days, another 10 mg decrease. That pattern continued until I finished. My blood work was tested weekly, and my creatinine level returned to high normal.
Unfortunately, after my next infusion, now only the Carboplatin and Abraxane, my creatinine shot up again. Next, my oncologist proscribed a 40 mg 3-day taper. Again the kidney inflammation went down, and the creatinine level decreased, only to shoot up again after treatment. To make matters worse, I suffered a bee sting and my creatinine level went through the roof to 4.1. My doctors were all convinced that it was a cumulative effect of the chemotherapy, but I was sure it was the nephritic bee sting.
My oncologist then put me on an 80 mg 3-day taper. Again my level when down to high normal, only to spike up after treatment. It was at this point I insisted on seeing a nephrologist a kidney specialist. My oncologist put me in touch with an onco-nephrologist at Moffitt. Dr. Bassil put me on a 20 mg 10-day taper, decreasing by 2.5 mg every 10 days. This long, slow, low-dose approach was the key. Unfortunately, I had been on prednisone for about 9 months at his point, and some bone demineralization had begun. A DEXA scan confirmed osteoporosis.
And so it began. The most difficult trial in this new cancer journey.
It was mid-October of 2021. My daughter’s husband got a big promotion and would be moving to the Orlando area from Ft. Lauderdale. My son and his family are in Lakeland Fl, just over an hour away, and on route to Moffitt in Tampa. Now my daughter and our two grandsons would be much closer. We were thrilled.
We offered to assist them in moving some of their prized possessions that they didn’t want the movers to touch. While stabilizing a piece of furniture, a sudden shift caused me to suffer a muscle pull in my back. And that did it.
The pulled muscle on the right side caused me to favor that side. The additional pressure on the left caused my sciatica to act up. Just the slightest wrong move put 10,000 volts on my spine, resulting in severe contractions of the back muscles. This continued for several weeks, and slowly resolved to spasms across the entire back lumbar area. I visited my VA primary care doctor and he proscribed me some pain killers, a topical rub, and a muscle relaxant. None of these helped. I was becoming less and less able to walk without assistance. A spinal x-ray revealed compression in the L2 lumbar spine. My Dr gave me a script for physical therapy at the VA. Most of the exercises were too painful to do with consistency. I was becoming more and more cripple. I got a handicap tag for my car.
To make matters worse, I was proscribed a new injection to boost my white cell count postchemotherapy treatment. I was a product that had a $1400 out-of-pocket copay. I was able to get a manufacturer’s waiver.
After a year I had to renew the waiver. This time it was denied. My oncologist found a bioidentical drug with no copay. I took the first injection of Ziextenzo in November of 2021. A week later the bone pain, a common side effect, was so bad I couldn’t get out of bed. In addition, my white cell count increased above normal levels. My doctors and the pharmacist insisted that it was not the new drug.
The second injection three weeks later proved to be even worse. The bone pain was worse still, and my white count went even higher. Again, they insisted the drug was not at fault. After the third time, my white count went over 17, and I was confined to bed with the pain.
On January 17 of 2022, I had an appointment with my oncologist at Orlando Health. I arose that morning and struggled to get to the bathroom. I called my wife and told her to call 911. I couldn’t get out of the bathroom.
I was rushed to Orlando Regional Medical Center. My Hemoglobin was 4.1. Normal is about 15, but I had been running about 7.5 due to my chemotherapy. I was given two and a half pints of blood. I spent 9 days in the hospital being tested for all sorts of causes of the blood loss. All were negative. Finally, after reviewing my recent history with the drug reaction, it was determined that the new drug was over stimulating my white cell bone marrow and crowding out my red cell bone marrow, leading to the drop in the hemoglobin. While in the hospital I received a TLSO spinal stability brace, a colonoscopy (to rule out internal bleeding), and a spinal x-ray and CT.
Upon reviewing my situation, my Moffitt oncologist decided to give me a 9-week “Chemo Holiday” to allow my body to recover. At this point, the 9-day bed rest finally calmed my back muscles and the spams stopped. But my core muscles were weak and unable to support my crumbling spine. The spinal stability brace was poorly fitted, and I was unable to wear it for more than a few hours a day. The neurosurgeon who proscribed the brace told me that I would be in the brace for about 3 months at a minimum and that I would see him every month and get another spinal x-ray to assess my progress.
I contacted the neurosurgeon’s office after about three weeks. I still was not able to wear the TLSO brace for more than a few hours. They told me to make an appointment with the prosthetics company that provided the brace. They would fit it properly. Sure enough, after an hour of work, I was able to wear the brace for most of the day.
Immediately I began to notice a reduction in the back pain! About 10% improvement each day, so after a week and a half, the back pain was minimal. Unfortunately wearing the brace caused my already weakened core muscles to atrophy even more. I needed to find a more permanent solution. I was advised by the neurosurgeon that a procedure called vertebroplasty was an option. This would consist of injecting bone paste into the collapsed vertebra, in most cases relieving the pain immediately,
On February 16, 2022, I had a PET scan at Moffitt. It showed that my two remaining tumors, one on the tail of the pancreas, and the other on the omentum, continued to shrink. It also revealed that in addition to the L2 vertebra collapse, there were additional collapsed vertebrae in the thoracic area. On February 18 I underwent an MRI which confirmed the vertebral degradation. It also revealed a small suspicious spot on the right hip bone, which the radiologist suspected might be bone metastasis. I was quite concerned! The tumors are shrinking, but if the cancer is in the bones, then it is not responding to the chemotherapy. My days would be numbered for sure!
I shared my concerns as well as the MRI results with my Moffitt oncologist. She had both the MRI and PET results read by a neuro-radiologist at Moffitt. Meanwhile, I contacted the neurosurgeon to find out why no one had contacted me about the one-month review. And what does the MRI result show regarding the viability of the vertebroplasty?
His nurse responded to me that “due to the extensive metastasis in the spine, no intervention was appropriate. Wear the brace to minimize the pain.” By this time I had received the MRI/PET comparison from Moffitt. Bottom line, no bone metastasis. I shared the results with the neurosurgeon. I have as yet to receive a response from his office. I even registered a complaint with the hospital about the unprofessional and unresponsive treatment I received.
Next, I went on to meet with an Interventional Spinal Pain Specialist at ORMC. This doctor also felt that there might be bone metastasis, but that he would still recommend treatment. His preferred approach was conservative. Try to slowly wean off dependence on the TLSO brace, and include aqua-therapy followed by regular physical therapy. He said that vertebroplasty could be a last resort. I adapted his idea and started the conservative approach.
As of right now, I am following his advice. The pain is minimal, and I notice my core is getting better each day. I do my exercise routines each morning, and twice a week I do aquatherapy. Once a week I do “land-based” physical therapy, as the aqua-therapists call it. I no longer need a walker or a cane. I’m still very careful, still no “BLT;” bending, lifting, or twisting. But my range of motion is improving, and I can recover dropped items by squatting and gently reaching. So it seems this stage of the journey is slowly coming to a close. It has been the most trying time in my journey thus far, eclipsing even the severe fatigue from the initial Keytruda treatments.
The PET scans in February showed the remaining tumors were mostly dead calcified tissue. Only about one-fourth of the tumors were active. My oncologist scheduled a follow-up PET scan for May. On the afternoon of May 11, 2022, I was scanned. We would have to wait until the next morning to get the results. It was a long night, and a lot of thoughts crossed my mind. Bottom line, the results would either be good news, bad news, or no news. We prayed for good news.
I reported to Moffitt along with my wife to meet with the oncologist. My 7:45 AM clinic visit seemed to be on time. The medical assistant took my vitals and escorted Joy and me to the doctor’s office. We waited. A nurse came in and greeted us and explained that the doctor was held up, but she would be in soon. At about 8:30 the gentle tap on the door signaled her arrival. She came in and greeted us. Her demeanor did not give clues about the results.
She got seated and prepared to discuss the findings. Before she began, I announced that, regardless of the results, I decided that for several reasons, I would continue my treatments at Orlando Health. It was only 20 minutes from our home. With gas prices being what they are, the 2-hour drive to Moffitt was grueling and expensive.
When I started at Moffitt, the traditionally horrible traffic on I-4 to Tampa was almost nonexistent, thanks to Covid. And with my Son and family living in Lakeland only 3 miles off I4, we had a chance to visit every 3 weeks. The 40-minute drive to Moffitt was generally quite smooth.
During the intervening months, his wife announced she was expecting. Charlotte Elisabeth arrived in June of ’21 and now we got to visit our new granddaughter. But it was not on our schedule, or theirs. It was on the 3-week treatment schedule.
After my pronouncement, the doctor spoke up. “Things look pretty good”, she said. She began to make her case, showing images of the tumors, and comparing them to various historical scans. “Get to the point” I’m thinking. What does ‘things look pretty good’ mean?”
After what seemed to be forever, she finally blurted out “you are in remission!” These were the words we have been praying for! She quickly added, “remission is not the same as a cure.” She didn’t need to tell me. This was not my first rodeo. I knew what remission meant and what it didn’t mean. Only time will tell if cancer will return or not.
But she did say that I could either do one more chemotherapy today or not, it was my choice. Joy and I looked at each other and we agreed. Let’s do this!
She then continued to say that my tumor expressed the BRCA gene defect, making me eligible for the PARP inhibitor treatment. This oral chemotherapy would help prevent reoccurrence, but there are no guarantees. And while it is a pill, it is chemotherapy. There are side effects similar to what I have been experiencing; low white count, low red count, possible nausea, etc. And once on it, you are on it for life. Only time would tell how well I tolerate this new drug.
Nonetheless, we were ecstatic with the results. I was thrilled to “ring the bell” again, signaling the end of my chemotherapy, at Moffitt at least.
I met with my Orlando Health oncologist, Dr. T. Johnson. He was pleased with my progress and explained the next steps. I’ll remain off treatments for 3 months while my body heals. I’ll have a CT in August. If there is no sign of new growth, we’ll wait another 3 months. Again, if there is no activity, routine surveillance will continue.
If there is growth at 3 months, I’ll start the PARP treatments. If after 6 months there is any new activity, I’ll either resume chemotherapy or start the PARP treatments. We’ll cross that bridge when we come to it. We’re praying for no new activity ever!
The final leg of that trek was daunting. I find myself on the edge. Behind me, a deep, dark, and foreboding forest. The valleys of deep physical pain and disability were unlike anything I had experienced before.
In front of me is a beautiful green field, resplendent with beautiful wildflowers gently weaving in the warm breeze. A cool, clear stream runs through it. The scene brings to mind Psalm 23. My mental and spiritual health have never been better. I credit this to my faith and my support system.
“He maketh me to lie down in green pastures: he leadeth me beside the still waters.”
“Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.”
How long will I be on the edge? Which way will my path lead? Only God knows. But regardless of where I go, I know that my Lord is with me.