First treatment and first win… but too short-lived and humbling!
Mission BTB: My Ongoing Journey with Stage 4 Prostate Cancer
Within a week of my cancer diagnosis at end of Nov 2018, my treatment plan was established. I started my first line of treatment with a lot of gusto and positive energy with the “Mission to Beat the Beast”. The initial shock of the situation gave way to tactical execution and everyone around us got focused on getting me and our family through this first treatment.
Treatment kick-off
The first line of treatment included 10-dose of targeted radiation to my pelvic area that had the biggest metastasis (and source of pain that led to my diagnosis), a shot of Lupron (hormone therapy), and 6 cycles of Docetaxel chemotherapy. Radiation treatment was done between December 10–21, 2018. We decided to start chemo on Dec 27th to allow for some “normal” Christmas Holiday family time. Chemo treatment has a lot of toxicity and unknowns on how the body will take it… so why not enjoy the holiday time before putting the body through it? Chemo treatment would be done every three weeks, so 6 treatment cycles went on till April 2019.
All my treatment and medical care have primarily been through Kaiser Permanente in Roseville, California, just about 10 minutes from our home. My wife Monika works as a doctor there as well. Kaiser is an integrated system, making it very efficient to go through the process of multiple tests, appointments, the biopsy for genetic testing, treatment coordination, and scheduling. I am very THANKFUL to the Kaiser team!
Starting with visits to the radiation clinic was somewhat of a disheartening experience as every other patient that I saw there was an old age patient. I thought to myself, “I do not belong here. There must be an error somewhere that I am being put through this.” But it was hard to escape the reality. What got me through it was telling myself, “my young age and health are assets that will make me get through and tolerate treatments better than most older patients.”
A few days into my radiation treatment, I noticed a notebook in the radiation chamber waiting room. Perhaps it was left by another patient for communal use — for people to write their thoughts or read stories of other patients. The cover of the notebook read:
While I had come across this serenity prayer before in my life, it meant so much more to me in this moment and in the context of my situation. Since then, this prayer has stayed fresh in my mind, and often in moments of uncertainty or despair, I come back to it. I ordered a printed version of it that is on a wall in my home that helps me through difficult days.
I have such vivid recollections of that holiday season with my whole extended family from around the country traveling to be with us and support us for the start of this long journey that we are still on. That togetherness and support gave me a lot of positive energy to start my chemo treatments. As chemo impacts general body immunity, I was on a very strictly managed diet (no uncooked foods, very minimal outside food, etc.) and limited social interaction most of the time to avoid the risk of infections. There was no harm in being overly protective as our primary focus was to ensure all chemo treatments would happen on schedule to get my disease under control at the earliest. I worked exclusively from home during this phase. Our social network organized around us to deliver a lot of delicious home-cooked meals. We binge-watched all seasons of The Game of Thrones in this phase, the phenomenon we had escaped so far. Escapism is a good way to help cope with reality.
The Docetaxel (Taxotere) chemo is a highly effective first line of treatment and does a great job in getting cancer under control. A PSA (Prostate-Specific Antigen) test, along with many other parameters, was done before every chemo to see the effectiveness of the last chemo cycle. With chemo treatment, my PSA started to drop very rapidly, from an initial normalized reading of 100 to below 0.1 by my last of the 6 chemo treatments… a 1000x reduction.
This felt very good… a true first victory!
While there are a lot of side effects one can have from chemo, I did not experience anything that I could not handle. With all the precautions we were already taking, I stayed in good overall health. Of course, my taste buds were mangled, and I lost hair, but all this is minor stuff in the grand scheme of things. This also gave me a great opportunity to change my look and go with shaved head look that I still sport (and a goatee added somewhere along the way).
Hope for a Normal Summer of 2019
Having completed my chemo in April and feeling a sense of victory with PSA down to an almost normal range led to a bright outlook for a more normal summer. My daughter was graduating high school soon. My parents came to the US from India to spend the summer with us… something they did at every 2–3-year cadence. I also felt fit to get excited about my long-planned trip to the UK in June 2019 to watch Cricket World Cup with my dad and my extended cricket-loving family. My outlook toward life started to feel normal again.
With my daughter graduating high school that year, April was the decision time for where she would go to college. She had good options with a few top UCs in California, and some good east coast colleges; the final choice came down to NYU (New York University) and a UC. Her heart was set to go into performing arts, making NYU Tisch School of the Arts a logical first choice. But this was not an easy choice, especially for me, to send our daughter across the country given my cancer journey and the bleak starting prognosis of my life expectancy. So, a decision that would have been a no-brainer under normal circumstances turned into a gut-wrenching emotional one for me. In April, Monika and our daughter went to tour both the campuses again and met with the departments for final due diligence. As I was still just past my chemo and avoiding travel, I did not travel. We ultimately decided in favor of NYU, and I learned to let go even as I was dealing with my own life’s uncertainties.
The rest of the summer was a good time for us to recover from the intense past five months of focus on my disease. With no more treatments at the moment, life started to feel a bit more normal. I went back to work in person. It was such a joy to reconnect again with so many people… and more importantly, just feel normal again. I will never underestimate the feeling of feeling normal.
June came and I had an awesome trip to the UK for Cricket World Cup. It was on my bucket list of things to do with my cricket-loving Dad, who was 79 then, as there might be limited future opportunities for such experience given his age. Even today, we look back at that trip as one of the most memorable experiences of our lives.
Return of the Beast: walking away from a dream opportunity
After coming back from the UK at the end of June, my blood test showed a relatively flat low PSA… giving us some confidence in containing the disease. In the meantime, a dream opportunity opened up at work (Micron Technology), with a very high impact, high visibility role, and title. Feeling good from the past few months of disease containment and better health, I went all in for that. I met with the full C-suite of the company for interviews and enjoyed sharing my vision for the role and the process of getting to know them at a more personal level. I got selected for this big job!
I was so ready to put the past 6–9 months of my life’s concerns behind me and take my professional life to the next level, especially with one kid now almost out of the house. Since I was off active treatment, now my PSA-monitoring blood tests were spaced at 6-wks instead of the previous 3-wks. The August PSA reading came in 4x higher than the June reading, stirring up concerns that I was not really in remission. Over the next 30 days, I got two more tests. The PSA showed a rapid rise bursting the confidence that my disease was under control. We immediately knew that the next line of treatment was just around the corner. It was just a matter of what it would be.
To walk through the journey, I am sharing my Normalized PSA chart below as relative data/trend matters more than the absolute number. I am pegging my starting PSA as a value of 100, and normalized all the data to that, for privacy reasons. Also, note that the Y-axis of the chart is on a log scale (each tick is a factor of 10) to get better resolution in plotting the PSA.
This was a mentally torturous phase. At the end of August, I went to drop off our daughter at NYU for her to start her college life. This was a very emotional transition for me given my health status. Soon after coming back from New York, I had to re-evaluate my life situation. I decided that it did not make sense for me to take on this new very aggressive and highly demanding executive management role at Micron as it might conflict with the focus I need on my health and family. Seeing the trend line from the last 3 PSA readings, and after much deliberation on this with my wife, I made the call to pass on the opportunity and withdrew.
As much as I hate to say this, that was the right call even as I look back now. My life since then has been a continuous journey from one treatment to the next every 6 months or so… and I have never been in remission. Priorities became crystal clear — health and time with family come first, everything else after that.
A good friend of ours who is an oncologist and is part of our inner circle we consult regularly in addition to my medical team said something that helped me during that phase: “If and when something happens to you, your work will miss you but will move on, but your family is never able to move on.” Recently I heard another version of this from an Irish colleague at work:
“Family is like a glass ball; they break from the fall if something happens to you. Work is like a rubber ball, it bounces back.”
This was a humble reminder that the Beast I was dealing with was not going to be tamed easily.
Learning to “Live in the Moment”
My PSA was rising back up at the same rate that it went down with the chemo. This started a broader conversation. “What else do I need to do in parallel to the medical treatments that would improve my health and extend my life?” Medical teams refer to my treatments as palliative care, as there is no known cure… that is harsh and hard to accept even as a label.
I started on the 2nd line of treatment with hormone therapy (ADT) in Nov of 2019. I was also referred to UCSF for additional expert opinion. The UCSF medical team has since then been a part of my care team in addition to the Kaiser Oncology team in making each big decision. My first appointment at UCSF which was scheduled for an hour lasted about two-and-a-half hours. The oncology team was very patient in walking us through every possible question and option for the standard of care and upcoming medical trials. One of the key takeaways from that conversation was the analogy of Pony Express with Cancer Treatments. There are only so many horses you have available to cover the distance… don’t change horses too soon, before they are fully spent. The goal is to stretch out each treatment option as long as possible and not rush into jumping to the next one. Once cancer has adapted to a specific treatment, it’s unlikely that you can come back to it. To extend life, we have to get the most juice out of each treatment horse/option as there is a finite number of solutions available. This also stretches your time to be able to intercept new and upcoming treatments and medical trials.
This was the time I started to focus extensively on learning more about foods and the role of diet in enhancing and reshaping our immune system to be a partner in my Mission to Beat the Beast. Our body has tremendous self-healing powers. If not directly to cure cancer itself, but to slow it down or if it could at least counter the toxicity of the treatments that I was going to be given. In the fall of 2019, I started a regimen of Intermittent Fasting and transitioned from being a vegetarian to a vegan. My journey of enhancing my diet is continuing to date and I’ll share details in an upcoming blog.
As highlighted in my 3rd blog, during the chemo phase I had started my spiritual journey and had completed reading the Bhagavad Gita (a widely translated and read Indian spiritual book), leading to better mental stability and a more positive attitude in dealing with our life situation. Now was the time to see if I could put into practice the teachings of the Gita.
While the Gita is a highly quoted book… the one shloka (verse/hymn) that I would like to highlight here is from the very last chapter of the Gita, chapter 18, shloka #66. After much debate and dialog between Lord Krishna and Arjuna about the meaning and purpose of life with the backdrop of fighting a war against your relatives, Lord Krishna’s advice to Arjuna is that of complete “samarpan”/surrender to God.
“We should willingly yield to Him, completely surrender to His will and take shelter in His love. If we destroy confidence in our own little self and replace it with perfect confidence in God, He will take care of us.”
Krishna tells Arjuna not to worry about the implications of the war, but to trust Him, bow to His will, and go for the war. If he consecrates his life, actions, feelings, and thoughts and surrenders himself to God, He will guide him through the fight of life and he need not have any fears. Surrender is the easiest way to self-transcendence.
Gita begins with the powerful teaching (chapter 2, shloka #47):
“Your right is to your action (karma), but never to its fruits/rewards. Let not the fruits of action be your motive, nor let your attachment be to inaction.”
And it concludes with the concept of full surrender to God. It was time for me to start imbibing and practicing this more and more. Stay focused on every action I/we can take to outsmart my disease but have complete faith in God and surrender to His will for whatever the outcome may be.
What kept me going during these trying times?
The learning of acceptance from the Serenity Prayer, learning the importance of karma without attachment to its reward, the concept of full surrender to God, and everything in between from the Gita — this was the time I learned to “live in the moment”.
We decided that we were going to do everything we could in our capacity to fight the battle. We decided not to focus/worry too much about the future… as it robs us of the joy of today. Recognizing that the family is like a glass ball, we have prioritized our time together and practiced being joyous every day.
Easier said than done, but we are continuously trying to get better at it!
My journey through blogs so far
My Ongoing Journey with Stage 4 Prostate Cancer: Mission Beat the Beast (MissionBTB)
