This summer I had the pleasure to vacation with my family and friends in Playa Del Carmen, Mexico. That trip inevitably saved my life.
It was on our trip where I ate some Mexican papaya containing a small protozoa named “cyclospora cayetanensis.” This protozoa later caused some serious intestinal discomfort when I returned to the states. I called my doctor who referred my to a gastroenterologist.
September 4, 2018
I saw a gastroenterologist at Austin Gastroenterology who performed a colonoscopy to rule out various issues. The initial feedback from the gastro was everything was clean with no polyps or other signs of colon cancer. The issues I was having were short-lived and he recommended more fiber in my diet. He did say he found some minor inflammation and had taken a few biopsies to double check it with the lab. There didn’t appear to be anything to worry about so I forgot about it.
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September 25, 2018
I received a call three weeks later from his office asking me to come in for the results. After unsuccessfully trying to arrange our schedules we decided to do it over the phone. I called him when I got home from picking up my son Sky at his preschool and it was during our call when he broke the news.
The inflamed cells found in my colon were early-stage Mantle Cell Lymphoma — a cancer of the lymph nodes classified as Non-Hodgkins Lymphoma. This was the same classification of cancer Paul Allen was diagnosed with at 45 and recently passed away from at age 65.
The gastroenterologist said I had pulled a “winning lottery ticket” as this was found during a test for something completely different and was in its early stages. It didn’t feel like I had won anything, but I got his point.
Telling my wife
My wife Tina was in her office as I knocked on the door, sat down, and explained her husband of 9 years had cancer. The look on her face was what one would expect, a combination of fear and pain which would carry us both into Google searches on the subject.
First, please don’t Google the term Mantle Cell Lymphoma (MCL) until after you have read this article. The reason is everything you read will be very morbid. The data contained in the Google results are way off. People don’t die from MCL today. It is highly treatable due to funding from the Obama administration’s Cancer Mooonshot promoted by Vice President Joe Biden. MCL is now one of the cancers commonly brought into remission with a series of chemotherapy, radiation, and medications.
As Tina and I Googled ourselves into hysteria in the first few hours, we started circulating the news to our very close friends and family. The goal was to figure out how we could get me help right away. We decided to wait on sharing this with our two boys (ages 3 and 6) until after we knew more about the situation.
Tina’s mom has a friend Jerry who had MCL and was seen by a doctor at MD Anderson in Houston, Texas — “the” place to go in the country for cancer care. Jerry agreed to talk to me and after our call he provided me with the email address for the doctor.
I crafted an email which would inevitably have a role in saving me years of my life. Here is the email.
Dear Dr. Wang,
Good afternoon and please forgive the unannounced email. My name is Richard Bagdonas. It was recommended that I contact you by one of your former patients because I was diagnosed yesterday with early stage mantle cell lymphoma.
Some demographics on me: 45-year-old male who doesn’t drink, smoke, or eat meat. I work out six days a week and feel that I am in good health.
It came as a shock during a colonoscopy that they found cells in my intestine that tested positive for mantle cell lymphoma.
Jerry [last name withheld] told me that you specialize in this type of cancer and I would like to know if you would be willing to meet with me. I live in Austin Texas and my in-laws live in Houston so I can camp out there for a bit if needed. I have an appointment on Monday with Beth Hellerstedt at Texas Oncology in Austin.
Kindly let me know if you would be willing to meet. My cell phone is [number withheld] in case you want to call me. Thank you sir.
The next morning I received a response from Dr. Wang and he would indeed like to see me. Unbeknownst to me and at the same time of me writing that email, Tina was on the phone with her business partner Alisa and the two were trying to figure out how to get me into MD Anderson (MDA). By way of our friend network I was put in touch with someone in the administration who asked me to call the administrative office the next day to get an appointment to see Dr. Wang.
A call into the MDA administration office on the morning of Thursday the 27th led me to an 8:00 am appointment in Houston just four days later. This is unheard of for getting into MDA. I am thankful and lucky I am surrounded by a network of wonderful folks in healthcare.
My first instinct was to let the people I work with know I was going to be out of pocket the following Monday and explained why. The rush of support and understanding was wonderful to hear. They had my back as I went into what felt like the black box of cancer care.
Entering the black box
Dr. Wang has a calming effect when he walks into a room. He walked in, grabbed my arm, smiled, and said “you don’t look sick, why are you here?” This levity was just what I needed to feel safe. He knew what I was thinking and this was his way of expressing everything would be ok.
This is when I asked him if it would be ok to record our session on my iPhone because I wanted my wife to hear the same thing I did and not second-hand information. He agreed and we began recording.
We discussed the initial results from my colonoscopy and he admitted me as his patient and scheduled me for some tests over the next 24 hours. It was then I decided to present him with his first pair of pink socks from the Twitter phenomenon my friend Nick Adkins came up with a few years ago. Pink socks are super important to me. They are a signal to health care providers signifying the person in front of them is someone’s friend, family member, and loved one. It is a way to remind everyone that patients are humans too.
The first test was a blood test which required me to sit there and wait as eleven vials of blood were taken from my arm. It was the easy test. The next test (a bone marrow biopsy) was scheduled for the following morning.
I won’t go into too much detail about the bone marrow biopsy, but let me just say it was the most painful test I have ever had in my life. My mind was focused on the reason for the pain was to help save my life, so I laid there and endured the pain as they burrowed the needle into my hip — twice because the first sample was lost. Now I am not trying to scare you away from a bone marrow biopsy. Just be sure to tell them if it hurts really bad because they probably hit a nerve in the bone.
After those tests were two weeks of waiting to go back to Houston for a PET scan and the results of my tests. Those two weeks took forever and forced me to stay positive because nobody knew the outcome yet.
My mind settled in on Schrödinger’s cat. Like his cat, the cancer was either eating me alive or it was sitting quiet. I chose to believe it was sitting quiet and focused my energy on keeping it that way.
During the two week waiting period I met with Dr. Beth Hellerstedt at Texas Oncology. She is a former client and the best oncologist around. My goal was to have her work in coordination with Dr. Wang’s team and to provide any treatments in Austin where applicable. I mentioned her to Dr. Wang and he was in agreement I could have some treatments locally, and after talking to Dr. Hellerstedt, she agreed as well. I now had my two-city team in place!
During my initial meeting with Dr. Hellerstedt she connected my MDA “Epic MyChart” record with hers so she could see my test results and relayed they had found MCL in my bone marrow biopsy. This was a tough blow to my psyche as I was hoping it would be super-duper early-stage MCL. Tina and I shared some poor nights of sleep while we waited.
I wish I would have not received the information at that time.
October 14, 2018
Tina and I drove out to Houston the night before my appointment at MDA. My PET scan was to be done at 6:00 am the next morning so I was unable to eat anything but protein the day before. After we checked into our hotel Tina had me dress for what was an amazing dinner with a beautiful woman. We went to Nobu and had an incredible array of sashimi including the best sea urchin topped with quail eggs I have ever had.
The next morning had me in the PET scan department at MDA waiting for an hour after they had me drink the Gatorade-like drink containing radioactive tracers. I was unable to have anything or anyone with me so I sat in a fairly-dark room and performed the following meditation.
Meditation for PET scans
I closed my eyes and took a deep breath in through my nose. I pictured this as fresh and clean air. I let it sit in my lungs for a few seconds before I blew out the air, with my eyes still closed, and pictured small gray bits falling to the floor. These were any bits of cancer that I had in my body. I kept doing that for the remainder of the hour and then went in to have my test.
My biggest fear was Dr. Wang finding another type of cancer alongside the MCL. If I could have MCL without knowing it, couldn’t I also have stomach cancer like my grandfather or something equally as bad?
Thankfully my appointment with Dr. Wang was a couple hours later so after the PET scan and some more drawn blood, Tina and I were meeting with Dr. Wang.
Once again I asked Dr. Wang if it would be ok for us to record our session on my iPhone so we could refer back to it rather than calling back to ask questions he had already answered. He agreed and we started recording.
Note: I recommend recording sessions with your physician. It allows you to review it and identify anything you may have missed due to excitement, nervousness, etc.
They didn’t find any other form of cancer in my body. Phew!
They did locate MCL in a lymph node in my left armpit and a couple in my groin. There was also a small (5%) of my bone marrow affected so they labeled this stage 4 MCL.
Now I know what you are thinking, as I thought the same thing. We all hear about stages of cancer and stage 4 sounds pretty darn terminal. That is not the case with MCL. Stages are not tied to mortality like in other cancers. Stages simply let physicians know how systemic it has gotten.
Stage 1: cancer found in one lymph node
Stage 2: cancer found in two lymph nodes in the same area (armpit, groin, etc.)
Stage 3: cancer found in two different areas
Stage 4: cancer found in the lympatic system and another system
Stage 4 just means it was found in my lymphatic system and another system. My other system was the bone marrow at 5% which put me into the 4th stage.
They had also classified my MCL as “classic” which meant it was slow growing and we had time to work out a perfect treatment.
Dr. Wang explained traditional treatments would inevitably lead me to leukemia, heart attacks, and other issues in the coming 10 years due to their ferocity. He didn’t want to put me at risk because they would essentially have to remove some bone marrow, grow stem cells in the lab, “nuke” my bone marrow, put the stem cells back in my bones, and bring me back to life. This would put my immune system in such a compromised position, it wasn’t the right course of action for me.
Most of the time MCL appears in men 65 years or older. So if a 65 year old man with cancer passes away at 75, they consider it a success. But a 45 year old man who passes at 55 would be considered a failure.
Dr. Wang happens to run the lab where they are conducting the Windows Trial for MCL. The current trial was on phase 1 referred to as Windows 1 and he said that my situation did not meet the criteria for Windows 1. He was happy to report Windows 2 was opening in a couple months and I was a perfect candidate for the Windows 2 portion of the trial. This means I will not have chemotherapy or radiation and my only course will be a few medications like Ibrutinib and Rituxan.
With the new information in hand, Tina and I drove home to wait the few months for the trial to start. I am sitting here now, having no symptoms, and working out 6 days a week to get my body ready for the treatments. We are going to kick this thing’s butt!
We only told our 6-year old about my situation because the 3-year old wouldn’t be able to understand. I recorded audio of how we explained it to him and sent it to our close friends with children so they could use it as their framework for telling their kids. This way they all had the same information and we could reduce the pressure on our son to keep it quiet.
What you can do right now
If you are 45 years old or older, go get a colonoscopy. Many systems drain into the colon for waste disposal and it can be the easiest test you can get. You may also choose to get other types of cancer screenings. Whatever you do, be sure to go get checked out. It may save your life.
Keeping the story going
I will be keeping this article up-to-date with my treatments and overall progress. This is my recovery and not a pity party. I am not labeling myself a cancer patient just as I don’t label myself as a chicken pox patient. I got over chicken pox and will be doing the same thing with MCL.
I am staying positive because I want the added benefits from the placebo effect while the medicine does its job. The only two things I ask from you are to be patient with me, as I may get tired and ill from the meds, and to stay positive because our collective conscience can do wonders when they are in sync.
I highly recommend you read my wife’s perspective as well which helps those who are partners to cancer patients understand how much it impacts partners too.
You can also follow my updates in more real-time on Twitter at @richardbagdonas.
This is where I will keep this story going. Kindly check back from time-to-time to learn how things progress.
October 31, 2018
The next appointment is on December 17th in Houston. We will learn more about treatments and starting the trial at that time.
My wife Tina Schweiger put together an article on how she dealt with my news. This is a great read for anyone wanting to know both sides of how to deal with cancer.
How I kept calm and carried on when we discovered my husband had Cancer
On Tuesday, September 25, my husband Richard was diagnosed with Cancer. I was sitting in my office, getting ready for…
November 9, 2018
Right now I am in a waiting game for treatment and recognizing the symptoms we could never figure out the cause of, but now we know they are tied to the lymphoma. They are:
- Whenever I get sick my left underarm has a sharp pain. This is typical in lymphoma.
2. I have a bit of fatigue that wasn’t tied to anything. Yes, this is me with fatigue.
3. I have a dull chest pain in my left chest that comes and goes. I have had this for a few years and always thought it was heart-related even though my doctor did a bunch of tests and said my heart is strong and fine. Lymphoma can present with chest pain.
4. The last one is actually gastro-related and something I will just leave at that. ;-)
December 5, 2018
I am getting ready to have my next appointment in Houston on the 17th. I have been working out 6–7 days a week. My weightlifting is going gangbusters and at my recent doctor appointment in Austin, my GP recognized that I have put on a lot of muscle weight. (BTW I have a killer secret recipe for success when lifting weights over 40 years old — more to come on that one)
Stay tuned to the results of my December 17th appointment.
December 17, 2018
I visited with Dr. Wang to get an update on when I can start the Windows 2 trial of his study. The second phase of the trial will start in February and I will be coming back in April to have my next appointment and we will start the trial at that time. My numbers were stable which means I don’t have to worry about the delay until April.
One thing to note is that I was up 5 lbs in my weight. I have been pushing hard at the gym lately in order to build up muscle for the upcoming treatment. I figure a strong body and strong mind will help me through this process.
March 19, 2019
I received news today that I will be starting my treatment during the second week of April. I am very excited about the wait being over and now the reality of going through the treatment is starting to hit. Breathe Richard. Breathe.
From what I have read I should expect to be a bit more fatigued. My workout regimen each week consists of 4 days of weight lifting and 2–3 days of biking. I am going to do my best to continue this regimen through treatment. The only difference is I expect my weights will be lower at the gym and my distances shorter on the bike.
More to follow in April.
April 1, 2019
I just heard that my treatment has been kicked back a week due to a delay in them starting the trial. I am slated to be in Houston on the 15th. This is not an April Fool’s joke. More to follow in a couple weeks.
April 10, 2019
My appointment in Houston has been pushed to the week of the 22nd because some items were needed to be done by MD Anderson prior to them opening the second phase of the trial (I am in the second phase).What this means to me is more weight lifting and biking to get ready for treatment. I am collecting workout data and will be running differentials on the data to help others plan their workout regimen to help them through cancer.
April 22, 2019
I found out that MD Anderson is still waiting on some signatures to start the second phase of the trial. So now I am getting some tests done on May 2nd and then treatment starts on May 13th.
You have to love bureaucracy, eh?
May 2, 2019
I just finished my day at MD Anderson after having had two different blood draws, an echo-cardiogram, EKG, Chest X-ray, CT scan, and PET scan.
Tomorrow I have a bone marrow biopsy and then head back to Austin. :-)
The good news is I am patient #1 of the Window 2 trial. The protocol is that I will be having treatment in Houston on the 13th, followed by treatment one day a week at MDA for the following 3 weeks, followed by one day a month at MDA for 6 months, followed by one day every other month at MDA for 6 months. More to follow on the 13th.
May 14, 2019
I got home today from Houston. Yesterday was a full day of blood work, doctor’s appointment, and hours and hours of infusion. The great thing is that I was able to make the most of it and get a lot of uninterrupted work done. Well, uninterrupted except for the staff coming by to check on me, adjust the meds, take vitals, etc.
The meds are making me a bit tired compared with my normal day and they are loosening my bowels a touch. Nothing to be too concerned about and while I was hoping to be at 110%, and as my friend told me: “feeling 90% is still an A.” It will take me a few days to get used to my new normal.
I go back next Monday for a quick out and back to get some blood work done and then get infused. Thanks to everyone sending the wonderful wishes and good vibes my way.
May 18, 2019
Yesterday was the first day I actually felt ok. The loose bowel movements plagued me mid-week, but have since subsided. That means that my body is starting to adjust to the new normal.
It also meant that last night I was able to do an arm workout at the gym followed by a bike ride. I am so very happy to be able to continue my workout regimen.
Speaking of workouts, I had a hypothesis on a style of workouts about a year and a half ago. I have since made some adjustments to account for cancer treatment and I am happy to report that it is working well.
If you are a cancer patient and would like to receive my workout specifications, please contact me through a DM on Twitter. My handle is @richardbagdonas.
May 21, 2019
Yesterday was my second infusion of rituxan. It went really smooth. This time there were no side effects. I got some quality work done with my “office in UT’s Houston campus.” I didn’t have any side effects from the ibrutinib today either so it sounds like my body is ready to go kick cancer’s butt!
May 28, 2019
Yesterday was my third infusion of rituxan. It was as if I had just a simple saline IV. No side effects and afterwards I went for a walk and a 7 mile bike ride, so yeah, I am doing great!
June 3, 2019
Today was my fourth infusion. It was so easy. No side effects and the symptoms that we attributed to the lymphoma have gone away (pain in my chest, fatigue, and a pain in my armpit). The next infusion will be July 8th where I also get a scan to determine how the treatment is working.
July 8, 2019
I met with Dr. Wang and his team this morning and am proud to say that he could not find any signs of lymphoma in my test results and said I am in complete metabolic remission! In just two months I went from having lymphoma to not having lymphoma and the treatment was so very easy. Congrats to Dr. Wang and his team!
September 1, 2019
It has been a little while since I last wrote. Things have been amazing. I feel great each day. I am tolerating well the ibrutinib pills and the rituxan IV-based meds. Today I started taking a drug called allopurinol which is supposed to help my kidneys. Here is what the web says:
“It is also used to prevent increased uric acid levels in patients receiving cancer chemotherapy. These patients can have increased uric acid levels due to release of uric acid from the dying cancer cells. Allopurinol works by reducing the amount of uric acid made by the body. Increased uric acid levels can cause gout and kidney problems.”
I was asked to take it with a lot of water and I did indeed drink a ton of water today.
Tomorrow I leave for Houston to get another PET scan Tuesday morning and then on Wednesday I am getting my first dose of venetoclax. I believe they are pills and they need me to watch me for 24 hours to make sure that it is being tolerated well. I hit the gym with great vigor tonight and meditated as I prep my body for the PET scan.
I will be back in Houston weekly for 3 more weeks to get venetoclax and blood tests to see how I can tolerating it. Dr. Wang has made this process so easy. I greatly appreciate his energy and truly love this man like a brother.
September 20, 2019
The venetoclax is being tolerated very well. I did an out-and-back to Houston this Wednesday and the numbers on my blood work were perfect. My strength is starting to jump. This week’s workout saw the weights increase on many of the exercises. I made small adjustment to it recently that allows the muscles to recover and not tear. What a difference it made.
November 28, 2019
I haven’t updated in a little while because things are going great. I had a bone marrow biopsy last month and where my original had 5% of the marrow affected with the MCL, I am now clear on my bone marrow biopsies.
I cannot tell you how excited this made me. The last test I will be getting is an endoscopy in December. Once that shows no cancer is left in my body, I have checked off all of the boxes for the trial.
Dr. Wang tells me that next month I will still be taking venetoclax and ibrutinib daily and the monthly infusion of rituxan will move to every other month.