A message from Bobby:
December 31, 2023
As I’ll explain, 2023 was a year I’d like to forget. In order to get everyone on the same page, I’ll first review what happened in 2022. In June of 2022, I was diagnosed with an inoperable, stage 4 oral/sinus cancer. A PDL1 score predicts the probability a cancer will respond to immunotherapy. Any positive score means there is a chance immunotherapy works and the higher the score, the better. Pathology discovered I had a PDL1 score of 100, which was unheard of. So, I entered a program of combined chemo and immunotherapy. During the second chemo treatment, the chemo drug stimulated a severe arrhythmia (my heart rate was over 190 bpm). I passed out in the waiting room at the hospital. The chemo was stopped, but I continued on the immunotherapy. A CAT scan showed the immunotherapy failed miserably because the cancer continued to grow at a rapid rate. I thought all hope was lost and then I received a call from a head and neck cancer surgeon. He arranged for me to meet with the Medical Director of Radiation Oncology at UVA, Dr. Christopher McLaughlin. Dr. McLaughlin recommended I consider an advanced radiation, either stereotactic radiation at UVA or photon therapy at a northern Virginia hospital. He told me the advanced radiation should help, but the best I could hope for would be 5 or 6 more months. I elected the stereotactic radiation at UVA. They take a CT scan before each session, to help confirm the settings for the radiation were accurate. After studying the CT scan taken after the first treatment, Dr. McLaughlin told me he had never seen results like mine after only one treatment. The effects of this radiation continue for months, and my results after only one treatment were consistent with the best results he had seen three months after full treatment ended. It should be noted that I experienced extreme burning in my face after each treatment at the area of the tumor. McLaughlin thought it wasn’t important, but I’m not so sure. An MRI in late 2022 showed no active cancer. The oncologists all warned me that I most likely still had some rogue cancer cells that would reestablish an active cancer. Finding no active cancer was not supposed to happen.
The cancer was quiet in early 2023, but the side effects of treatment were not. The biggest problems were from trismus (lockjaw) and tongue sores. These issues are still a problem today. As I mentioned, back in the summer of 2022, chemo stimulated a cardiac arrhythmia. Actually, it aggravated a genetic condition known as Wolfe-Parkinson-White Syndrome (WPW). WPW patients have an extra electrical pathway in the heart that bypasses the AV node, resulting at times in a very rapid heartbeat. I had known about this condition since I was very young, but the arrhythmia only happened a few times a year and always self corrected. After the episode in the summer, the bouts of rapid heartbeat became more frequent, but still self corrected. Until one Sunday in February. I was taken by ambulance to the hospital in Culpeper where I passed out and had to be shocked into normal sinus rhythm. There are only a few cardiac specialists who perform the ablation procedure I needed. There was only one bed available at a hospital in the region that had access to a doctor who could perform the ablation. So, off we go. After surgery, I got home, but continued to have serious bouts of arrhythmia. Back to the hospital for another surgery. WPW is a rare condition, but I had not one, but at least two extra pathways. So, I had a rare condition of a rare condition. Fortunately, the heart has been fine since the second procedure. Unfortunately, two hospital stays left me weak and out of shape.
Then in May, things went from bad to worse. Just before starting the stereotactic radiation in September of 2022, I had a number of oral cancer bleeds. The bleeds normally occur from rapidly growing cancers. Two bleeds were especially bad, to the point where I felt lucky to having survived. Once the radiation started, the bleeds stopped. Well, they stopped for about 7 ½ months or so. Then one night in May I suffered a bad bleed. I remembered Dr. Cobbs, our longtime veterinarian, telling me of a good friend from vet school who died of an oral cancer bleed. When I realized how serious my condition was, I called Donna, my sister, and was only able to utter one word—“help”. The next thing I remember was waking up quite some time later in intensive care at UVA. Treating the bleed was made much more difficult due to the trismus. I was first taken to Culpeper Hospital, then sent to UVA at Charlottesville. On the way, I coded for over nine minutes. Eventually revived, I then took a turn for the worse. The ambulance diverted to the Martha Jefferson Clinic in northern Charlottesville. Donna and my niece Caitlin were on the road, and got a call, telling them if they wanted to see me alive, to get to Martha Jefferson immediately. An exam room was full of doctors and nurses working on me when Donna said a doctor came out and told them “I’m sorry, but he’s not going to make it.” I really don’t know everything that happened, but I know I had two collapsed lungs because I remember the tubes being pulled from my chest later while in intensive care at UVA.
During the emergency, I received a tracheotomy . The concern was the cancer had returned and that I would have subsequent bleeds. The trach assured that I would be able to breathe in case of another bleed. While the trach was medically necessary, it proved to be an otherwise horrible device. It hurt, it affected my ability to breathe, it made swallowing extremely difficult, and it had to be cleaned and serviced twice a day.
After an extensive stay in ICU, I returned home. I was so weak that simply walking to the bathroom was exhausting. After a couple of weeks, a home health nurse noticed my blood oxygen had dropped and that I was having breathing difficulty. So off we go to the hospital once again, this time to the Stafford Hospital. I had a large pleural effusion, which is when fluid collects between the lungs and the sac the lungs sit in. Pleural effusions are most often caused by cancer or heart disease. I had a battery of tests, and I had a thoracentesis, which is a procedure that removes the fluid. The tests showed no cancer and no heart disease. I suggested that the trach caused the pleural effusion. The doctors said no, that it was from cancer that didn’t show up. Their position was that undetected rogue cancer cells caused the pleural effusion. Their position didn’t make sense to me.
So I did a little research and discovered that tumor bleeds can also be caused by dead or dying cancers. It made sense to me that there could be an elegant solution where the bleed was caused by a dead or dying cancer and the pleural effusion caused by the trach. I decided I wanted the trach removed. There had been no more bleeds, so I didn’t believe there was a need for the trach. Plus, I hated the device. It seemed impossible to get back into shape, and that so much time was spent servicing the trach plus with scheduled nutrition and hydration via the stomach tube that it left little time for other things. I was living for the trach, not with the trach. I asked Donna to find an ENT to remove it. She called nearly every ENT in the region. None would agree to see me. They all gave the same message—if you want it removed, go to the doctor who put it in. That doctor is a head and neck cancer surgeon whose next available appointment was over a month away, an appointment we scheduled. Or, they said, go to the ER. Well, I continued developing pleural effusions and needing thoracentesis procedures and therefore went to a number of emergency rooms. Same story everywhere. Regarding the trach, nobody cared what I wanted. They all said the pleural effusions were caused by cancer (even though additional testing continued to show no cancer), not the trach. They told me to get used to the trach because it was permanent, and that future tests would show my cancer had returned. My friend and personal physician, Dr. Brooke Miller, tried to get me an appointment with an ENT. Even he failed.
We were now within two weeks of the appointment with the surgeon at UVA, so I decided to wait and see her before making any other decisions. Thankfully, she agreed to remove the trach. As an oncologist, she knew more about the situation than all the other doctors combined. It reminded me of an old saying by Scottish philosopher Thomas Carlyle, who said, “I do not believe in the collective wisdom of individual ignorance”. And by the way, once the trach was removed, I stopped having pleural effusions.
I went through the long trach story for one reason. If you or a loved one is faced with a serious medical situation, you or someone you trust must become your advocate. Get a second opinion. Ask questions. Do research. You will find the good doctors are worth their weight in gold. Unfortunately, there are many doctors in today’s world who seem to care more about covering their asses than they care about their patients. I believe I would still be suffering with the trach had I not been so adamant about having it removed. I have tremendous sympathy for anyone who has a trach.
Since removing the trach, I have been slowly but steadily improving, gaining strength and stamina and finally starting to feel better (not well, but better). Working on the farm is my best therapy, both physically and mentally. I’ve come a long way, but I’ve still got a long way to go. Like other things, my ability to swallow is slowly improving. From being unable to drink at all, I’m now off the stomach tube and consuming a liquid and soft food diet. I actually dream of eating real food. Currently, the jaw is the focus of my attention. Steve Geer, a therapist who works out of the Libertas Clinic in Culpeper, has been working on my jaw. Progress is slow. When we started, the right side of my face was disfigured and full of scar tissue. Steve has an excellent understanding of scar tissue, scar tissue mobilization and tissue regrowth and regeneration. He assures me we are making progress and will get some return of jaw function. It’s going to take time, and I’ve never been patient, so it is frustrating. The right side of my face looks like it hurts and it does. Hopefully that also improves. I’m also hoping my ability to talk improves. That’s another thing the trach ruined. I want to get jaw function regained first, and then evaluate my speech. If necessary, I’ll do therapy for my speech once these other issues are settled. And don’t forget the tongue sores. They seem to get better, then worse in a vicious cycle. But now they are low on my list.
There are many people I need to thank. Friends from all over the country sent well wishes and offered prayers. Thank you all. A number of friends came to visit while I was in the hospital. Even though I was a poor host, know that those visits provided a ray of light in otherwise long and lonely days. Thank you. When I couldn’t drive and my immediate family was not available, my friends Kenny Payne and Janet Light, along with my cousin Eric Grove, made sure I didn’t miss any appointments. I am eternally grateful. A number of medical professionals contributed to keeping me upright. Many thanks to all the EMTs, ambulance drivers, nurses, and doctors who went above and beyond the call of duty on my behalf. I am alive because of your talent. And a huge note of thanks to my immediate family. My sister, Donna, her daughters Jennifer, with husband Kevin Porter, and Caitlin, with husband Earl Menefee, and my brother Tom made sure I got where I needed to go and kept the farm going. They all have careers and other responsibilities, yet somehow sacrificed and made sure all the work got done. The cowherd has never looked better, and I look forward with much anticipation to the next crop of calves. (Also, there is a bull calf on feed that I believe is the best thing we’ve ever raised and I enjoy monitoring his progress daily.)
I am alive today for three reasons; the talents of medical professionals, the support of friends and family, and a big basket of luck. I’ve already lived beyond the most favorable prognosis. And I want to live a good, long time more. Jennifer and Kevin have two young sons, Alex and Jake, while Caitlin and Earl have a young daughter, Ella. My greatest wish is to be able to see them grow and develop. Yet, I know I cannot control the cancer and that it may return at any time. But, no one knows the future. Please be patient with my shortcomings. I look forward to seeing and hearing from everyone.
Happy New Year, and let’s all have a great 2024.
December 29, 2022
I am a very lucky guy.
In June, I was diagnosed with an inoperable, aggressive, stage 4 oral/sinus cancer. The first course of treatment was a combination of chemo and immunotherapy, which failed miserably. I was then essentially sent home to die. Although I had been previously told I was ineligible for radiation, I then received a call from one of my doctors who recommended I consult with one of the radiation oncologists. That call saved my life. We elected a course of stereotactic radiation combined with immunotherapy. (Stereotactic radiation is an advanced form of radiation treatment that is much more powerful and much more precise than standard radiation.) An MRI taken last week showed that we exceeded all reasonable expectations. The cancer has been dramatically reduced. Going forward, I will continue with immunotherapy indefinitely, one infusion every three weeks, along with an alternative therapy, high dose vitamin C infusion.
I am also a lucky guy because of my family and friends who made sure that I made it to all my appointments and treatments. I am also amazed and grateful that my family has been able to keep the farm operating seamlessly while dealing with my situation.
A number of people have asked “what’s taking so long” to get an update. The answer is complications and setbacks. The biggest, and a still ongoing complication, is the infection.
In early June, about the same time my cancer was diagnosed, I developed an infection on the right side of my face, either in or very near the cancer. The infection caused a high fever, which sent me to the ER. I was treated with a course of oral antibiotics and told to monitor my temperature, which I did. There was no other follow up. I’m convinced that I’ve had this infection since June, and that it is responsible for a lot of the swelling and pain that I’ve experienced.
In October, the infection “blew up”, causing significant facial swelling and swelling my right eye shut. At UVA, I received two antibiotic IVs with instructions to go to the Culpeper ER for another IV if my condition didn’t improve. At the Culpeper ER, we waited over 2 ½ hours without getting called for treatment. When I asked for an idea when we could expect treatment, they said they had no idea.
I had been getting an alternative cancer treatment, high dose vitamin C IV, at the nearby Libertas Integrative Health Clinic. So, we left the hospital and went to Libertas, hoping they had antibiotic IVs. Sarah Russell, who runs Libertas, immediately recognized the seriousness of the infection. In less than 45 minutes, I received the desired antibiotic IV. Sarah tried various combinations of oral and IV antibiotics through November, and then ordered a CT scan. That scan showed concern that the infection had entered bone. Sarah and my good friend Dr. Brooke Miller, conferred and recommended daily antibiotic IVs.
In order to accommodate that schedule, Sarah personally came in on weekends to open the clinic and administer the IVs. I finished an 18 day, every day, antibiotic IV schedule and am now twice a week for the next month. Corporate medicine doesn’t give the individual care I received from Sarah Russell and her Libertas clinic, and I am greatly in her debt.
While the infection has been the most significant of my setbacks, it certainly has not been the only problem. The first treatment I received was a combination of chemo and immunotherapy. In addition to the normal chemo side effects (nausea, fatigue, etc.) one of the chemo drugs caused me to have severe heart arrhythmia. In fact, I passed out in the oncology waiting room with a pulse rate of over 190. I was rushed to the ER to be shocked, but fortunately my pulse rate started to moderate on its own. I continued to suffer from bouts of arrhythmia until the chemo drugs cleared my system many weeks later.
I had never heard of a tumor bleed until after I woke up one morning with my mouth full of fluid. I spit out a mouthful of blood, which seemed to open the floodgates. Blood poured from my mouth, with no way to stop it. Fortunately, the bleeding eventually stopped. I later learned that a friend of a friend died from an oral cancer bleed. I had 9 or 10 of these bleeds over a week or so, half very scary. I lost a lot of blood that week, and it took a lot out of me.
The other major problems have been tongue sores from radiation, and trismus (lockjaw). The tongue sores are truly the work of the devil. They make talking, eating, and drinking extremely painful, and I’ve been dealing with these sores since late September. There are times that even drinking water over the sores feels like pouring alcohol over an open wound. Every meal is dreaded.
The trismus began in June, with the pain from the infection and has continued to get worse as time and pain have continued. My right jaw has clamped down to the point that I have no ability of open my mouth. My meals have been oatmeal for breakfast, scrambled eggs for lunch, and soup for supper for months. Those are the only type foods I can consume. So once all the other issues get resolved, I can look forward to many weeks of physical therapy to regain some jaw function.
In summary, I’ve got a lot of work to do to get back to “normal”. I’m in terrible shape, I’ve lost a lot of weight, I’m weak, and I’m tired. I’m also very lucky and never been happier to be alive. Thank you to everyone for all your thoughts and prayers.
Happy New Year,
June 12, 2022
For those who don’t know, in the fall of 2019 I was diagnosed with squamous cell carcinoma of the right maxilla. I had two surgeries, which took quite a bit of the upper right jawbone and left a “hole” going through my right palate into the right sinus, so the surgeons could get cancer from the sinus. Those surgeries were followed by a full course of radiation and chemotherapy. For over two years since, things went well.
Then in late March, 2022, just before our bull sale, I noticed a couple of what felt like small bubbles form in the void area. The next week, I went to see my dentist. I had just received a prosthetic to fit into the void area, and had been having problems with it. She thought I likely damaged radiation affected tissue, and that radiation damaged tissue can heal in strange ways. She did not think it looked like cancer, but it should be monitored. For most of April, the little bubbles continued to stack upon one another, and the hole into the sinus actually sealed off, which I thought was great. No more water running out of my nose when I tried to drink. I could even drink with a straw.
In late April, the growth began leaving the void area, and it started adhering to my inner cheek. I became more concerned. I had a previously scheduled MRI set for May 11, so I followed that up with a visit to the oncology team at UVA on May 13, where a number of biopsies were taken. The MRI report said no cancer, and that the growth appeared to come from radiation damaged tissue. The pathology report said no cancer, but a few “atypical” cells. The folks at UVA wanted me to be examined by one of the surgeons, so I went back for another visit. The surgeon told me I had cancer, and that my best option was surgery, if I qualified for surgery. She said the surgery would be an all day event with a team of surgeons, where the cancer surgery would be followed by full facial reconstruction. An extended hospital stay would be followed by 6+ weeks at home. More biopsies followed.
Things finally came to a resolution on Wednesday, June 8 when I talked to the surgeon. She told me the tumor board decided the tumor was too advanced for surgery. I thought she handed me a death sentence. Then she referred to the new pathology report, which began with the statement “this is an exceedingly challenging case”. Multiple teams of pathologists independently examined the biopsies, and they finally agreed that I had an aggressive cancer, essentially of indeterminate type. Good news finally surfaced when she told me that cancers that are PDL1 positive have a chance at responding to immunotherapy, with higher scores having better chances of responding. My PDL1 score was very high. The doctors think we have a realistic chance of shrinking the tumor with chemo and immunotherapy to the point that surgery is possible.
As you can imagine, my life has been an emotional roller coaster the past few weeks. On top of the cancer stuff, I’ve been running around at a crazy pace, getting all the cattle vaccinated for pinkeye and poured for flies and trying to get the first cutting of hay finished. I hadn’t been feeling well for a couple of weeks and thought it was likely due to mental stress, so I just kept going. In fact, I had an infection in all the mess. I finished raking hay last Sunday, June 5 and pretty much crashed. I had a fever of over 103 and was taken to the emergency room. Antibiotics seem to have my temperature under control, and I’m just now starting to feel better (June 11). It’s been a bitch of a week. I know that I have to focus on my health and to reduce as much stress as possible. I still want to do some work on the farm, as I’m able, but know I need to find a balance between work, rest, and treatment. I plan to keep a very low profile. The swelling in my face has advanced to the point that it’s quite noticeable, and I really don’t want to answer a lot of questions.
My niece, Caitlin, will monitor the White Ridge Angus website and Facebook page. She will provide updates as necessary. If therapy works, I don’t expect a quick resolution. More likely surgery would be many months away. My first infusion is scheduled for Friday, June 17. Let the fight begin.
July 11, 2022
An update on Bobby:
He's still in a lot of pain from both the cancer itself and the chemo treatments. This makes it hard to talk and hard to eat. If you've called him in the last few weeks and he hasn't answered, don't be offended. Shoot him a message instead, and don't be upset if he doesn't reply. His energy level is very low.
Thank you all for the continued prayers. Keep them coming.
August 24, 2022
An update on Bobby:
He received a call from UVA today to say his imaging shows the cancer has continued to advance. Surgery is still not an option. He will be meeting with the head of radiation oncology at UVA as soon as it can be arranged.
The fight continues and we appreciate the continued prayers. Keep them coming.
September 7, 2022
Bobby has elected to receive radiation treatments at UVA with their stereotactic radiation unit. It is likely, but not guaranteed that treatment will shrink the tumor to gain more time for him. He's not done fighting yet..
December 2, 2022
There hasn't been much to update on lately- sorry for that. Bobby's been fighting an infection for the last few months. He's also still doing immunotherapy treatments. His energy level is low and it's very uncomfortable to talk. Please keep him and our family in your prayers.