My Ongoing Journey with Stage 4 Prostate Cancer: The Beginning
Mission Beat the Beast (MissionBTB)
In November of 2018, two days after my 49th birthday, my life as I knew it changed. I was incidentally diagnosed with Stage 4 Prostate Cancer that had already spread to bones all over my body, something that’s considered terminal and non-curable in the medical world.
When life-impacting adversity hits you, you have a choice — be miserable about it or take it head-on with all your strength and decide to happily live the life you have. This choice not only impacts you but all the close family around you too. Someone in the family, in my case my wife, becomes your primary caretaker through this journey. Their sanity through this journey is even more important, as they must deal with your life, treatments, decisions, and possibly the aftermath all by themselves. Ensuring their mental well-being while fighting your own battle is no less important. So, forming a positive energy cycle and a bubble is good not just for you, but for everyone around you. You cannot do it without them either.
Having received a lot of positive feedback from my circle about my journey so far, I decided to document and share it openly through a series of blogs. Talking about your terminal illness or any serious health issue is not an easy and natural thing for most people to do. However, I have learned that if you can get over the initial hurdle to be open and vulnerable about the tumultuous situation you have been thrown into, the world comes together to cheer for you and help you win the hardest battles.
While it is of utmost importance for me to document this for my teenage kids and my extended family, I believe this will help others in the community that has given me so much love and support throughout this phase. Once you start this conversation, it seems like a lot of people that you know directly may have someone in their life that may be dealing with wide-ranging life-impacting issues, whether it be cancer or another type of health issue. So, my hope and wish are that this blog can have a broad audience and impact, and I will learn from other people sharing their experiences as well.
Currently, I am on the fifth line of treatment and continue to look for ways to keep my cancer in containment. Living in California with a wife who is a doctor with a strong professional network, I am blessed to have access to the best medical resources. But I have also been dealt the card of a very aggressive disease that keeps outsmarting treatments within short periods as you can tell by the line of treatments I have had. While I have not been in remission all these years, most of the time we have been able to contain it enough for me to live life comfortably. But that has been getting more challenging in the past 3–4 months, and my journey ahead may not be as smooth as the journey so far. While I stay optimistic and am doing everything I can to keep optimizing my health, I am also not delusional about what I am dealing with.
I have taken a holistic approach to life, and my blog series will try to capture my journey and learnings with a 360-degree view of life. I’ll cover topics like:
- could I have been diagnosed sooner?
- creating your support structure; merit and madness related to letting everyone around you know
- navigating personal and professional life
- navigating medical treatments and new trials
- the role of diet, lifestyle changes, and spirituality in support
- and above all — the power of just living in the present in face of ambiguity of the future
The Finding — Nov 2018
It’s the fall of 2018 and life is generally good. Both my wife Monika and I have good professional careers, doing things that we like and enjoy. She is a doctor, and I am a tech-business exec in the semiconductor industry. Our two kids are growing up nicely; our daughter is a senior in high school and will be applying for colleges this fall, and our son is a freshman in high school. They are independent kids with minds and interests of their own. The toughest challenge in life at this moment seems to be just steering our daughter’s college application process. She has developed a strong passion for performing arts through the years and is thinking of applying to college in that field. For two Indian-American parents with strong STEM foundation and careers, the thought of our first kid going into the performing arts career track was just a tough dialog. Especially, when she had also done all the advanced/AP STEM classes and received excellent grades.
I was in reasonable physical health — somewhat overweight for sure as pics below will show — but had good endurance and physical capabilities. I was never into extreme fitness and weight-training etc. but liked to stay physically active through hikes, biking in summers, and skiing in winters, with gym workouts in between during the weeks. I was 48 years of age but felt young enough to push myself from not doing much for weeks to be able to have an aggressive full day on the ski slopes and still feel good at the end of the day. Over the years I had picked up biking and was part of a group of weekend cyclists that would venture out on one of the many bike trails of the Sacramento area, typically doing about 30–35-mile rides on Sunday mornings. Yeah, that’s easy riding distance, not serious cyclist-level stuff!
Sacramento has a yearly 100km (63 miles) bike ride event in early October and this year I decided to sign up for that along with some of my biking pals. So, in September of 2018, we started to do progressively longer rides just to get in shape for this event. On Sept 30th, the weekend before the actual event, I did a 50-mile ride after which I started to feel a meaningful discomfort in my pelvic/thigh area. With the assumption that it was just muscular pain, and I probably did not stretch properly before and after the ride, I started to nurse the pain with the usual cold compression, etc. The pain did not subside or get meaningfully better over the week, so I finally decided to skip the actual 100k ride event.
The rest of October was busy with work and usual life stuff. I traveled to China and Taiwan for work, and to India for a short personal visit. In mid-November, I went to Germany for a week for a big trade event that we host in Munich. Throughout this time, my pelvic and thigh pain did not seem to go away, and now I had to take some pills to manage the pain and did some physical therapy as well. The Munich event and trip are always very physically demanding with a lot of walking/standing during the day and social activities in the evenings.
My physical discomfort turned into meaningful pain in the last few days in Munich — to the point that it was now radiating all over my legs and I could not even sleep the last night there and on the flight back. I was just happy to get back to the US by Friday night (Nov 16) and let Monika guide the next steps. With radiating pain, we thought that this is likely a back/sciatica type issue pinching some nerves; rest and recoup over the weekend and will consult the doctor on Monday. The pain got to a point where we decided to go to the ER on Saturday night so I could get some high-dose steroids to help manage it. In the ER, they did all the usual tests including an X-ray and CT scan. There was no unusual finding to explain what was going on; there may be some sciatica nerve pinching going on, but it did not jump out as definitive from the scans. Pumped up with steroids, I started to feel better and came back home on Sunday. Next week was Thanksgiving week (and my birthday), so it was a good week to recover, and we had out-of-town family and friends at our house. Given the lack of clear evidence for my pain, Monika and my PCP (Primary Care Physician) discussed and decided I should get an MRI, which was done on Sunday, Nov 25th, a day after my 49th birthday.
Back at work on Monday, Nov 26th, I got a call from my doctor’s office in the late afternoon that he would like to see both Monika and me today at 5 pm. That was very unusual, so I suspected something serious, but my worst-case scenario was a major back/spine-related issue, something I had seen in the family. I got home just in time to pick up Monika and we got to the doctor’s office. He walked us through the MRI result — there is metastatic cancer spread to many parts of my bone structure, with a very high concentration in my pelvic area and that is the very likely cause of pain that I experienced. We didn’t yet know the source of cancer. He did a prostate exam and concluded that it was very likely coming from there, and that was finally confirmed the next day with a blood test checking for my PSA (Prostate Specific Antigen) marker.
Lighting strike — I have stage 4 Prostate Cancer, that has already spread (metastasized) all over my bone structure. That is considered terminal and currently non-curable in the medical world. I was dumbfounded and did not know immediately how to process all this.
At that time, we had no history of cancer in the family other than stage 2 breast cancer in one of my aunts who was treated and has been in remission for a while. Cancer was a terrible but distant term for me, as I had no close encounter with it around me. I just felt numb with the finding.
Monika was already aware of the situation and helped manage me. Due to the nature of the emergency appointment request from the doctor, she went into my chart and saw the MRI report an hour or so before our appointment. She did not share anything with me. I cannot imagine what she must have gone thru in that 1–1:30 hr. of processing this information and not talking to me about it before my PCP could break the news directly to me.
Anticipating our distress from the appointment and need for immediate support, Monika proactively gave heads-up to close friends — an oncologist and a primary care doctor couple — before we went into the PCP appointment. Right afterward, we met with them at Starbucks for emotional support and to get an oncologist’s perspective on the situation. It was a smart move on Monika’s part as alone we would not have known how to process this other than just crying.
The next four days were a battery of medical tests, and in between a lot of mental and emotional reconciliation. I somehow found the strength and did not for a moment harp on “why me”. The shock of course, and emotions and tears for sure… but not self-pity and questioning why. I think that set the tone for everything that followed and set the parameters that Monika will have to deal with as well. Her job is the toughest in this whole process: As a doctor to figure out what’s really going on and what all should be done, do research, and reconcile the treatment options being proposed. As a wife to take physical and mental care of me. As a mother on how to deal with kids. And as the primary link between us and the worldwide spread family, being the “communicator-in-chief” and managing the emotions of all the family and friends, and medical counterparts in the family. And finding oxygen for her own sustenance through the process.
We had been married for over 22 years by this time and had our share of ups and downs like any married couple. But we had mutual respect for each other and a bond, that just got stronger with this life-changing distress. Both of us showed remarkable strength right from the first moment of discovery, and that mutually helped us be stronger. It would be harder if either of us were not independently strong in dealing with this… but together we stayed positive to focus on the problem at hand and how to move forward.
Besides the news of cancer and the stage itself, the next major shock came in the first official oncology appointment on Nov 30th.
I learned that the average life expectancy from this stage is 28 months!
While a lot of disclaimers were put, that it’s old data and lots of new research is happening that it will all be better… but it’s hard not to feel the shock of that prognosis. We decided that we were not going to focus on a number like that: “Let’s ignore it and focus on how to get better the fastest. I am not a statistic.” It did not help with the fact that I got the disease at this age and with no family history or risk factors. So why worry about old survival statistics. We decided to go to a restaurant and splurged on some mozzarella sticks and jalapeño poppers. Something we probably hadn’t done in the past 15+ years — just an “FU” to the situation and a “let’s just live” moment!
After this oncology appointment, we sat down and had a talk with our kids about my diagnosis. There was no point in focusing on the prognosis, but to make them aware that this is a serious issue that I need immediate treatment. We did not discuss the stage of cancer with kids, as we did not want them to google and try to draw their own conclusions. Instead, we asked them to discuss all their questions with their mom who as a doctor can help them understand this. Both our kids have very strong EQ (emotional quotient) but have very different ways of engaging and processing things like this. We are proud of how they have managed to not just process all this but have been extremely supportive and individually thrived through the journey we have been on as a family. In the next few days, we informed a lot of our other friends and extended family, and I’ll discuss the merit and approach of that in a future blog post.
That week, my thoughts and emotions flowed something like this, mostly when I was alone and had moments to self:
“I am not afraid of death, but I am also not ready for this. I have never had a strong desire to live an extraordinarily long life… but I have so much more to see with kids shaping their lives, and so many places to travel around the world, and just live life. I am not ready to leave this soon… not something I can control, but I will fight and give it my best to get over this.”
Everyone needs a rallying moto, I started to formulate a mission that at some point I labeled “Mission Beat the Beast (MissionBTB)”.
And some of the wishes that crossed my mind in that first week were:
- To be fit to go to the Cricket World Cup in the UK in June’19 with my dad and some cousins. This was a bucket list item for me to do with my dad who loves cricket, and all the planning and (very painful) ticket acquisition for the games was done in October before all this unfolded. I had chemo treatments from Dec’18-Apr’19 and did go on this trip; it was very memorable!
- To outlive our lovely labradoodle dog Biscotti who is 6 and probably has another 6–8 years ahead of him.
- And to outlive my parents who are 78 and 72, and I wish them a healthy long life. I had two other siblings, an older brother, and a younger sister. I lost my older brother to a road accident when he was 29 and I was 24, and that left a huge void, especially in my parents’ life. My biggest concern was and continues to be that they don’t deserve to lose their second son in their lifetime.
Let’s see how the dice rolls and what God has in store for us, but I must get better and overcome this. While these wishes are great, I need to ensure I give the best I can to make Monika and the kids independent and capable of dealing with life without me. We are blessed to have a strong family and friends support that I really don’t have to stress about that. However, it’s still my role to do that!
I live in a country that has very advanced medical care, my wife is a doctor and half of our close social network are medical professionals — still, my cancer finding was incidental when it was already at stage 4. How could this happen and could I have done something different about all this — that will be the topic of conversation for the next blog soon!
