Friday, December 21, 2018

Genetically Engineered Bunny with a sleek & aerodynamic body and other oddities

Earlier today afternoon, as I was walking behind our apartment building, I noticed one of the many bunnies of our Apartment Complex sitting close to the sidewalk. 

It looked very odd at first glance and made me go: 

"That's weird. The bunny looks very thin and sleek. It looks almost like a cardboard cutout. 
With such an aerodynamic body, it should be able to move very fast! 
Where did it come from? I have never seen it before in our area. Has anyone been conducting Genetical Engineering experiments on the neighborhood bunnies?"🤔

The unusual sight made me pause my walking and give the bunny a more thorough look. After a moment or so, the rabbit turned into a regular rabbit with a plump body, and I was assured there was no hanky-panky going on among the rabbit population in the neighborhood. 

It was just my eyes - with the help of a 2.5 cm long tumor in the brain - playing tricks on me. The growing tumor might be causing some pressure to build up on the optic nerves leading to temporary visual issues. Glad it turned out to be a fleeting experience and not an ongoing/permanent problem with my eyesight.

That is another symptom to add to the list since the tumor was identified in the MRI 31 days ago on November 20, 2018. The complete list of symptoms observed so far:
  • Feeling of lightheadedness occasionally - lasting just a few seconds each time.
  • One violent episode of projectile vomiting on our Houston trip last Saturday that I wrote about in the previous blog post. Traveling stresses could have contributed majorly to this.
  • One instance of slurring while talking which my wife (a qualified medical professional) noticed while we were at a restaurant for dinner. Even though I wasn't convinced there was anything wrong with me, we left the restaurant immediately with the idea of getting it checked out at an emergency center. On the way there, we decided to wait overnight and confirm there is an immediate problem before going to the hospital. It seemed like a good night's sleep made me feel better; so we dropped the idea of going to the hospital.
  • Today's episode of seeing a bunny with an unusual shape. At least I do not see a human-size bunny like Donnie Darko did. 😆 

At the second-opinion-consult last week, the MD Anderson folks suggested Radiation Therapy targeting the new tumor growth as the way forward for me. Dr. Shiao-Pei Weathers called us yesterday morning to update us about the discussion of my case at their Tumor Board meeting and informed us that I should undergo surgery first and then undergo Radiation Therapy treatment. 

My oncologist Dr. Barnett was not expecting this advice about the need for surgery so close on the heels of my previous surgery. He is of the opinion that the Neurosurgeons won't be ready to operate in the same area where I had my previous surgery less than 6 months ago. Another reason he is not in favor of surgery is the increased risk of collateral damage from any aggressive treatment on this tumor which is located close to the motor cortex & the sensory cortex.

He has anyway reached out to Dr. Sharad Rajpal - the Neurosurgeon who did both of my craniotomies so far - asking him if he will be ready to perform the third craniotomy on me in the next few weeks. 

I am scheduled for another MRI two Fridays from today - on January 4, 2018. Decisions about the future course of action - surgery and radiation therapy, or just radiation therapy with chemotherapy, etc. - will be made based on the findings in that MRI.

With this being the holiday season, everything is moving very slowly. Hopefully, the tumor will stay stable until appropriate actions can be taken. And not end up growing uncontrollably giving me a glimpse of the Killer Rabbit from Monty Python and the Holy Grail. 🤣🤣

Sunday, December 16, 2018

Learning to live with an aggressively growing brain tumor

The original title I had for this blog post was "A violent episode of projectile vomiting and its aftermath.". Rejected that in preference for a less-alarmist title. 😆

The major item on my agenda for this weekend was to spend as much time as possible at the meditation, reading, and prayer services at Houston Center of Self-Realization Fellowship on both Saturday and Sunday. Accordingly, I made it to the SRF Center by 9:00 AM yesterday. 

The day had not started well as I woke up around 4:00 AM and was not able to go back to sleep. The meeting at MD Anderson on Friday had given rise to hopes about the possibility of a less-invasive treatment option of Radiation Therapy. This positive mood had turned overnight into a gloomy realization that my medical team had missed out a trick by not throwing everything they have got at it. If they had started me on Radiation therapy immediately after the surgery in July, I might not have been facing another recurrence now. Instead, they/we have given the tumor a head start of around 5 months to grow to over 3 cm long and become far more dangerous. 😡

By the time I reached the SRF Center in a hurry by 9:00 AM, I was already feeling ill. A nauseous sensation on-and-off made me leave the main meditation room within five minutes and make myself comfortable in the outside foyer close to the restrooms all prepared to rush to the toilet if I have to throw up. I stayed in the vicinity of the meditation session until around 12:15 PM mostly asleep on the chair and not being able to focus on meditation. After that, I decided it is best I get back home and get some sleep. So I left the SRF Center and had lunch at the ISKCON Govinda's restaurant across the street. Then I hailed a Lyft to get back home. 

The 20-minute drive back home turned out to be very eventful. Within 5 minutes of the ride, the driving caused motion sickness in me and exacerbated the sensation of nausea. I was trying to stop the car and get out to throw up, but was not fast enough and started throwing up very violently inside. And outside. 🤮🤮🤮

The driver turned out to be a devout Muslim man who had lost his wife at a young age of 24 to Leukemia. Over the next hour of waiting at the car-wash while the remains of my vomiting were being removed from the car, we bonded over our respective cancer stories. 🙏🙏

Got back home a couple of hours later than I had planned and got to sleep, and reconsider our plans in the light of the expected but unwanted developments. 

Seth Godin's blog post from today about the difference between a Chronic condition and an emergency situation seems to be of particular relevance to us right now.

We have been through this before. And we have come through this successfully if a bit battered. We can do it again. Identifying it as a chronic condition helps in dealing with it without getting into a stressful emergency mode.

The immediate priority right now is to avoid all social engagements / out-of-home engagements in favor of staying in bed at home as much as possible. 

We are heading back home tomorrow (Monday, December 17, 2018). I will probably need some precautions ahead of time - like taking anti-emetic tablets - to make sure our journey back home is uneventful.

We are meeting with my NeuroOncologist on Wednesday. Hopefully, the radiation therapy treatment will be a viable one, and I can start on it as quickly as possible. 💪

Thankful that I have a good work-from-home freelance project to keep me occupied and not focused on negative things over the next couple of months while my family and I go through the intense treatment cycle.

Friday, December 14, 2018

Everything else can wait,...

We are in Houston today to seek a second opinion from the Glioblastoma specialists at MD Anderson Cancer Center. The meeting this afternoon turned out to be very productive and helpful - far exceeding my very conservative expectations. 

Dr. Shiao-Pei Weathers and her colleagues suggested the possibility of Radiation Therapy as the first line of attack against the new tumor growth! This idea had not occurred to us, nor did our NeuroOncologist suggest it when we met him a couple of weeks ago. 

My understanding from the days of the first round of 30 days/6-weeks radiation treatment in late 2016-early 2017 after the first craniotomy was that there is only a limited amount of Radiation a human body can take, and I was given my full quota during the first round of Radiation treatment. So Radiation Therapy was forever off the table as a treatment option for me. 

Dr. Weathers and her colleagues think that my two tumors are in different parts of the brain far apart from each other to allow for targeting the second tumor with Radiation Therapy treatment. This is an option for me as the original area of tumor growth, and radiation treatment - Right Temporal Lobe - does not show any signs of the tumor since the first brain surgery. And the second tumor growth is in the left parietal lobe, far away from the right temporal lobe!

The best thing about this option if it turns out to be a viable option that my NeuroOncologist agrees with is that I can get the radiation treatment back home in Colorado itself with full-coverage by my insurance!

It might even be possible for me to re-use the radiation mask from my first round of radiation treatments.😀 And be treated at the same place I went for the first round of treatment.

I was preparing myself mentally for undergoing my third craniotomy in the next few weeks to address the tumor recurrence. If the less-invasive Radiation Therapy option is viable, that would be a hugely preferable option! 

The folks at MD Anderson Cancer Center will discuss my case further next week at their Surgery Board meeting to figure out if there are any other treatments or clinical trials that could work for me. Laser Interstitial Thermal Therapy is one possible option for treatment I can get at MD Anderson if I can afford it.

They will get back to me after the Surgery Board meeting with additional suggestions. So, all in all, a very productive trip to Houston so far. 👌

The title of this blog post is from a quote by Paramahansa Yogananda which adorns the header of the Houston Center of Self-Realization Fellowship website:

Everything else can wait, but our search for God cannot wait.

That is an appropriate title for this blog post as my spiritual seeking has played a significant role in the background of all this. 

This weekend is a special weekend for the folks at Self-Realization Fellowship. Paramahansa Yogananda had made it a practice to have all his disciples spend one day during the Christmas season meditating all day - a day to be devoted entirely to God Communion. Turns out the day for full-day-meditation this year is tomorrow - Saturday, December 15, 2018. 

I got to know of this program a few weeks ago. Learning a bit more about the specifics of this program, I had decided to skip the program altogether. The main reason for my decision to skip this program was that I did not want to abandon my responsibilities as a parent and leave my young daughter in her mother's care all-day while I go away to far-away-from-home Lakewood to participate in the day-long meditation session at the Denver chapter of Self-Realization Fellowship.

Since our plans changed and I had to travel to Houston this weekend, I could reconsider my decision especially because we have additional support from family members in Houston! 

The folks at Houston Center of Self-Realization Fellowship were very welcoming and happy to have me when I asked them if I can visit them during this trip. 

I attended an hour of the Thursday evening special meditation session yesterday. I plan to attend the full day meditation tomorrow and all the services on Sunday!

I will be immensely satisfied with this trip on our return to Longmont on Monday. 👏🙏

Amazing how things work out for the best when the mind is clear and focused. 

Thursday, December 6, 2018

Insurance complications around my upcoming second opinion consult at MD Anderson Cancer Center

I was very excited after seeing the "I have you scheduled to see Dr. Shiao-Pei Weathers on 12/14 .... Will this appointment work for you?" email mentioned in my previous post

Adding a big dose of wishful thinking, I assumed that the appointment was confirmed with everything being taken care of, and all that was left for me to do was to just show up on 12/14 in Houston. 

Reality hit when the Patient Access Representative called me the next day to inform me that my insurance does not have Out-of-network coverage, and the only way MD Anderson could see me was as a self-pay patient. And I would have to pay out-of-pocket $1,050 for consultation. Or $17,509 for the full evaluation. 😦

After some hand-wringing, avoided the temptation to call the whole thing off, and confirmed verbally and through email that we want to go with just the consultation, and we will come ready to pay $ 1,050 at the appointment. Phew. 

This was my first serious attempt at seeking treatment outside Longmont/Colorado, and I gain a valuable lesson about my health insurance coverage details. 

Since it is currently open-enrollment season for Obamacare Exchange insurance policies, I checked with my insurance agent if I could switch to another policy for 2019 that could allow me to seek out-of-network treatment in the near-future. 

My insurance agent was very quick in throwing cold water at my hopes with "Unfortunately, there are no out of network plans available in the individual market." 😷

As things stand now, I am all set to get a second opinion on treatment options from a physician specializing in treating Glioblastoma at MD Anderson Cancer Center next Friday. 

The following Wednesday - December 20, 2018 - I will be meeting my NeuroOncologist in Longmont. Quite likely I will have to schedule my third craniotomy in the following couple of weeks at this meeting.

A craniotomy to end 2018 and start 2019 WITH A BANG!  🤣

Saturday, December 1, 2018

2nd Opinion Consult at MD Anderson: From idea to confirmed appointment in 2 days

I am all set for a second-opinion-consult with Dr. Shiao-Pei Weathers at MD Anderson Cancer Center on Friday, December 14, 2018. 

The idea for a second-opinion-consult was seriously broached for the first time at the meeting on Wednesday, November 28, 2018 afternoon when my NeuroOncologist - Dr. J Mark Barnett - was giving us the bad news about the previous week's MRI. The confirmed appointment at MD Anderson came through by the afternoon of Friday, November 30, 2018. 😮💪

Speedy affair indeed thanks to the prompt action by Dr. Barnett & the staff at his office, and highly responsive action by the staff at MD Anderson Cancer Center. 

Dr. Barnett consulted his colleague - Dr. Hossein Maymani - immediately after our meeting about the best way to reach out to MD Anderson and gave us a phone number to call that evening. Dr. Maymani is a recent addition at the Longmont office of Rocky Mountain Cancer Centers and has previously worked at MD Anderson; so he is the right person to reach out to in this context. 

We followed up over the phone next day morning at 7:40 AM knowing it will be 8:40 AM in Houston. The person I spoke with took all of my details. Within 10 minutes I got an email from a Patient Access Representative at MD Anderson requesting me to authorize a Medical Information Release form to enable them to get Pathology reports, radiology discs, and medical records. 

We informed Dr. Barnett's office staff about the progress. By 2:30 PM the same day, they called us back to inform us that they had faxed over 70+ pages of my medical records to MD Anderson to expedite the process. 

I was exchanging emails back and forth all through with Shandra Boddy, the Patient Access Representative at MD Anderson. Didn't hear anything back from Shandra Boddy on Friday morning about them receiving the documents. So I emailed her around 11:30 AM asking if they had received the documents. She responded almost immediately saying "I received the reports that were faxed over, and the PATH slides were delivered today."

Half an hour later, she sent an email saying "I have you scheduled to see Dr. Shiao-Pei Weathers on 12/14 .... Will this appointment work for you?" 😮

I responded promptly that the appointment works for us and went about making travel arrangements as soon as possible. 😁

Having researched previously about the medical facilities specializing in treating Glioblastoma, we knew MD Anderson to be among the best facilities - along with Duke, UCSF, and others. The fact that we have family living in Houston with whom we can stay during the trip made the decision to go there an easy one. 

Also, one of my friends - Krishna P L Bhat, Ph.D. - leads a team working on researching for Glioblastoma cures at MD Anderson. We visited his office and laboratory in September when we were visiting family. The below picture was taken during an informal meeting with the team on September 17, 2018.

All of this made the decision to go to MD Anderson a no-brainer for us. 

At the meeting on Wednesday, Dr. Barnett was repetitively insistent that now is the time to go for a second opinion because the options he could offer us in Longmont were very limited. Once we expressed a preference for MD Anderson over Duke, he triggered the process to get us there very quickly. With the tumor having grown 2 centimeters in six weeks since the MRI scan on October 3, 2018, to the next MRI scan on November 20, 2018, there is indeed a huge urgency with my health situation. My heartfelt gratitude to Dr. Barnett for acting promptly in the best interests on my behalf.

The big first step towards combating the new Glioblastoma Tumor Recurrence has been taken. Onwards with a positive & optimistic mindset, full of hope and courage!

Wednesday, November 28, 2018

There is bad news ...

"There is bad news, Prakash!" That is how my NeuroOncologist started the conversation with me and my wife today afternoon. 

He continued on with "The something unusual from the MRI on October 3, 2018, has been confirmed as a tumor recurrence with a noticeable 2.5 cm growth in the MRI on November 20, 2018". The tumor has come back in the same location - the left parietal lobe - in which I had my second craniotomy on July 19th, 2018.

This came as a shock to both of us. Since the medical team had not called me immediately after the MRI, I had assumed that all is well and I have nothing to worry about. Turns out it was that way because last week was a holiday week. 😅

The fact that I am not experiencing any physiological symptoms to indicate the presence of a tumor is another factor that was making me confident and complacent about my health. 😔

As this recurrence indicates that whatever we are doing is not working, the doctor made me stop the daily 80mg Temodar treatment I was on immediately. We discussed a few options for further treatments and ended the meeting on the note that we will meet again in three weeks to decide on the future course of action. 

It will take some time to digest all this and come to terms with it. Here are some of my initial thoughts:
  • The most important thing right now is to fight like hell against the forces of darkness - fear, hopelessness, despair,... And reinforce the positive spirit and strength of mind.
  • Now is the time for second opinions. 
  • To review what we have done to identify what has worked and double down on it. 
  • And to identify what hasn't worked and drop it.
  • To explore for solutions outside the normal scope of our search.
Hoping to continue on this journey with a smile on the face and strength and determination in our hearts and minds.

Wednesday, November 14, 2018

Counting my blessings on the second anniversary of my GBM diagnosis

Two years ago today, on Monday, November 14, 2016, early morning, I was taken to the emergency room after complaining about nausea and tiredness for a couple of days. Very early in the day, the doctors figured out it was a brain tumor, and I was scheduled for a brain surgery later in the day. Most of the tumor was resected that afternoon, and I was subsequently diagnosed as having Glioblastoma Multiforme - the most aggressive of brain cancers there is. 

That was the start of my journey with brain cancer. There are many things I am thankful for on this journey.  

In spite of going through two brain surgeries and being on treatment throughout over the last two years, thankfully, I have not experienced any significant deficits - either physical or mental. That has allowed me to go about life as usual despite the circumstances. In fact, I even got back to running marathons and completed 3 marathons in 2018. 💪

Living with terminal cancer has taught me to appreciate all the good - and not so good - things in life. I can categorically state that I am enjoying and appreciating my life much more now than before I was diagnosed. 😇

5-year-ago-me or 10-year-ago-me would have been very surprised and shocked to know that I have it in me to look at the threat of death in the face and not flinch but go on to dance with it 

The most important benefit I have got so far on this journey - a very recent development - is the opening up of the spiritual aspect of life while I was digging into figuring out what I should be doing to prevent recurrence. I am still at the very beginning of my spiritual journey and very excited to see where it will take me! 🙏🙏

Monday, October 29, 2018

Found a supportive community for my spiritual journey

Over the last three weekends, I have participated in the Sunday morning Meditation Services at the Boulder County Meditation Circle (BCMC) every weekend. 

BCMC is composed of members and friends of Self-Realization Fellowship (SRF), the worldwide spiritual organization founded by Paramahansa Yogananda in 1920. BCMC provides silent meditation services and Reading services every Sunday morning and special commemoration services throughout the year. BCMC functions as a conduit to the teachings of Paramahansa Yogananda for any interested seekers. 

The SRF-affiliated meditation circle of Boulder County could have been located anywhere in the 740 square miles area of Boulder County. It is my good fortune that it happens to be just a 20-minute walk away from my home. 😆🙏

BCMC's Sunday Meditation service usually consists of the following components:
  • 8:30 AM - 9:30 AM - Silent Meditation Practice.
  • 10:00 AM - 11:00 AM - Reading Service (Reading from Paramahansa Yogananda's writings & his interpretations of passages from the Bible and Bhagavad Gita).

There were only 5-6 people at these services each time I was there. The small turnout is probably for the best when the focus is on meditation and communing with God. I have been able to sit quietly through the silent meditation service with a distracted mind for the most part. I am hoping that with regular practice through my participation at BCMC meditation services as well as daily meditation practice at home, I will be able to meditate deeply for longer and longer periods of time. 

I think it is fortunate for me that the path to spiritual enlightenment as well that of combating tumor recurrence goes through intense and deep meditation. 🙏🙏

Here is the full story of how I came to be here: 
The tumor recurrence in June and the resultant craniotomy in July started me off on a journey to figure out what else I should be doing to combat tumor recurrence in the future. That journey took me through many books including Autobiography of a Yogi. Reading Paramahansa Yogananda's autobiography turned my mind upside down and inside out. I discovered SRF from the book, and the SRF website told me about the Boulder County Meditation Circle

Pleasantly surprised to see the location is very close to my home. Makes it easy for me to commit to being a regular active member of BCMC going forward.

Here is the message SRF President Brother Chidananda shared with all the SRF members a few days ago. Sharing it here as I think it can be helpful to many:

Those interested in finding an SRF-affiliated meditation circle/center, please search at

Sunday, October 7, 2018

Good result from the first post-surgery MRI, and other updates

On Wednesday, October 3, 2018, I had the first MRI scan since my second craniotomy on Thursday, July 19, 2018

On Friday evening, my Neuro-Oncologist Dr. J. Mark Barnett called me to inform us that the MRI shows some expected post-surgery changes. and there is nothing to worry about. We will continue with the current treatment plan and check again with an MRI in two months. 

This comes as a huge relief as I was experiencing some unusual physiological symptoms leading up to the day of the MRI. On the two days preceding the MRI, I had 5-6 instances of experiencing a sense of heaviness above my left eye. The sensation lasted only for a second each time, but the recurring nature of it made me fear it might be the early signs of a new recurrence of the tumor in the area above my left eye. 

A recurrence less than 3 months after a craniotomy would have been very unusual but not unexpected with aggressive cancer like Glioblastoma Multiforme.

Now that the MRI confirmed there is no recurrence, I am chalking down the physiological symptoms I experienced to either (1) lack of adequate sleep and rest, or (2) dehydration, or (3) stress.

I will add a few more updates to go along with this happy update as I haven't provided a major update here on many topics I have talked about before. 

Ongoing Treatment Plan:

During the first meeting after my second craniotomy, Dr. Barnett offered us the following four options for further treatment:
  1. Sign up for the Clinical Trial involving Avastin (Bevacizumab) available in Boulder. 
  2. Start on Avastin (Bevacizumab) as a regular treatment drug.
  3. Start on a long-term chemotherapy treatment orally with Temodar (Temozolomide) 
  4. Do nothing.
Avastin - in my view - is a last resort medication for GBM patients, and I have no intention to go anywhere near the end stages right now. So I brushed off the first two options off the table very easily. 

It was very tempting to go with the fourth option of not doing anything as I was reading extensively about healing cancer naturally, and was very hopeful and optimistic I would figure out the way to cause a radical remission of my tumor. However, given the aggressive nature of GBM, I chose to go with the oral chemotherapy treatment with Temodar. 

The current dosage of Temodar I am on is 80mg per day every day, and as of now, it is supposed to be for at least the next year.

No more Electric Field Treatment with Optune:

After religiously wearing the Optune arrays 90+% of the time on my head for nearly 15 months (far beyond the recommended 75+% daily for six months), I decided to stop using it after I had the recurrence in June. My confidence in Optune's effectiveness in preventing a tumor recurrence was irrevocably shaken with the in-the-face proof of a tumor recurrence. Optune might still be useful in slowing down tumor recurrences even after one recurrence, but I felt the effort and cost involved in continuing with Optune is not worth it for the small & unproven benefit it could provide.

So I am no longer shaving my head regularly to put on Optune arrays. Planning to let my hair grow with gay abandon from now on, and allow it to grow into an impressive Afro in a few months/years. 😛

Not keen on moving close to Duke for GBM treatments:

I was seriously thinking about moving to Raleigh-Durham area in North Carolina to be close to Duke University and avail myself of the innovative polio-virus based treatment for GBM they offer. Since then I have changed my mind and dropped the idea.

Duke, with its innovative treatments for GBM, does not guarantee a full-remission from GBM; they only offer hope of a few additional months of survival for GBM patients. I can get that while being at home in Longmont, CO. I don't have to uproot my family and move across the country for that. 

So, no East Coast and the Atlantic Ocean beaches for us for now. We will stay in Colorado close to the Rocky Mountains!

Yet to recover fully from the knee surgery:

It has been more than 13 weeks since my knee surgery on Tuesday, July 3, 2018. The surgery involved implanting a metal plate and a few screws in my left knee to fix the broken tibial plateau. It is just a matter of time before this assembly becomes a natural part of my bone structure. 

Got a reminder last week that my left knee is still far from full recovery. I was walking down a downhill stretch of the road and sped up unintentionally and caused too much pressure to fall on the left knee. About halfway through that downhill stretch, my left knee started acting up and has been begging for my attention ever since. 

I see this incident as a warning for me to give my left knee more time to heal and take it easy with walking, being extra cautious while walking downhill, and totally avoiding running at least till the end of the year.

No more marathons for me for a few more months:

I have run three marathons this year and had plans to run six more in the fall/winter. My knee injury and slow recovery made me drop 5 of those (Cheyenne, WY | Chicago, IL | Moab, UT | Memphis, TN | Little Rock, AR) definitely, and possibly the 6th one (Fort Lauderdale, FL) as well. I will pick up running and marathoning at a suitable time after the metal implants become a natural part of the bone structure and I am able to walk and run without the left knee shouting at me. 

Making progress on Strengthening My Spiritual Connection:

My journey to figure out spirituality and strengthen the spiritual connection has culminated with me learning about the teachings of Paramahansa Yogananda, and appreciating the wisdom in his non-denominational and secular teachings which emphasize the universal truths underlying all true religions in the world. 

I look up to Yoganandaji as my teacher on my spiritual journey and am very glad to learn that he - before his death in 1952 - has established the infrastructure necessary to allow future spiritual aspirants to establish a guru-disciple relationship with him (Paramahansa Yogananda) and his lineage of gurus. This is accomplished through a course of lessons available for home study that I have subscribed to, and have already received the first two lessons. 

Folks interested in following my example in subscribing to the home study lessons can do so by contacting Self-Realization Fellowship in the United States, or Yogoda Satsanga Society of India

There are also many books written by Yoganandaji and by his direct disciples that help in the spiritual journey. In addition to Autobiography of a Yogi, I have read The Essense of Self-Realization, and currently reading Meditation as a Way of Life: Philosophy and Practice. 

It can be categorically stated that Paramahansa Yogananda and Self-Realization Fellowship will play a big role in my life going forward.

Meditation as the definitive cure for GBM:

I am fairly convinced about meditation offering a real chance of curing myself of Glioblastoma based on the scientific and anecdotal proof I have come across so far in my reading. A few of those being:

I have started to practice meditation very recently after all the reading. As of now, I am able to 'meditate' for 5 to 10 minutes with a very distracted mind all through it. Hoping that with dedicated daily practice I will learn to quieten my mind for the 5-10 minutes I am trying to meditate. And in the course of time to lengthen the duration of meditation to over an hour. 

Here is an encouraging quote in this context from Alan L. Pritz's book 'Meditation As A Way Of Life - Philosophy And Practice':
The journey of [spiritual] awakening does not require a somber attitude, excessive piety, drama, or anything else beyond sincerity and showing up. The journey is for anyone ready to take it and willing to pay the coin of self-effort. Let the truth as you understand it continue to guide you. Stay open, enjoy whatever transpires, and let the process unfold naturally.

Work-related stuff:

I haven't worked since late June since I got busy with the two surgeries and recovering from them. The very generous response to my recent fund-raiser has helped in making ends meet while I was not working.  I also took a break from work to figure out the way forward - in the context of my brain tumor and surviving for a long time. Also in the context of how I will make a living while dealing with the demands of having an aggressive brain tumor. 

Reading the book 'Secrets of the Millionaire Mind' has helped me undo a whole lot of negative mental conditioning around the topic of money, and helped me to look at my career so far with a fresh perspective. I am currently looking for opportunities to freelance or work full time as a Ruby on Rails Developer. I should have some work lined up in the next few days/weeks.

Ending Note

That is all I have for now. Life has settled into a normal routine after the excitement and turmoil of the two surgeries. The latest MRI showing clean results further consolidates the normal routine of our life. As I was telling a friend - "Peace and Calm will reign for a while!"

Wednesday, September 12, 2018

Trying to Deepen my Spiritual Connection

Over the last couple of months - while I was undergoing and recovering from a knee surgery and a brain surgery - one item I have given priority to is to work on deepening my spiritual connection.

I am not a religious or spiritual person. So this was all uncharted territory for me. Quite naturally I was frequently finding myself out of my depth and wondering if I am going about it the right way.

My preferred way of learning new topics is to read books. Preferably the authoritative and reputed ones.

So I went about looking for a few books to read - one book leading to the next and on and on.

The journey has taken me through the following books:

1. Radical Remission: Surviving Cancer Against All Odds

As I have already written about earlier this book made me realize that being the I-BELEIVE-WHAT-I-CAN-SEE agnostic that I was, I have been very deficient in the spiritual aspects of life.

The book identifies Deepening Your Spiritual Connection as one of the nine key factors that can make a real difference in the battle with cancer and can lead to a spontaneous remission from cancer.

The chapter dealing with Spirituality has an interesting case study of a Glioblastoma patient getting completely healed with help from a Brazilian spiritual healer John of God. Interestingly a big part of the healing was the hours-long meditation the patient did over 2-3 years.

The healing methods of John of God described in this book is very similar to those attributed to Indian Yogis of yore and got me interested in learning more about the ancient healing methods.

2. You Can Conquer Cancer: A New Way of Life

This book by Ian Gawler was brought to my attention in the book Anticancer: A New of Life by David Servan-Schreiber. I have not read this book yet even though I purchased a copy a while back. 

The author - an Australian veterinarian - describes an integrated and holistic approach to cancer; emphasizing nutrition, the power of the mind, meditation, family and social support and the spiritual dimension of life. 

The blurb of this book got me interested in learning more about meditation.

3. Meditation as Medicine: Activate the Power of Your Natural Healing Force

This remarkable book by Dr. Dharma Singh Khalsa talks about using a combination of meditation, yoga, breathing exercises, chanting, and mental focus - all covered under the umbrella term  Medical Meditation to target and heal specific illnesses. 

Halfway through this book, I was very hopeful that the book would give me a set of steps to follow (meditation method and duration to perform, a mantra to chant, specific breathing exercise to perform, etc.) to completely heal myself of Glioblastoma. 

No such luck. The book does talk about healing cancer generally and does not make a mention of brain cancer.

The book also introduced me to the concept of chakras, kundalini, and the esoteric experience of kundalini rising from the lower chakras to the highest chakra along with the miraculous healing potentialities of such an occurring. 

Yes, This book got me very interested in learning more about Kundalini.

That is me on the day after my second Craniotomy holding up this book as I was reading it during that period.

4. Kundalini Rising: Mastering Creative Energies, and

5. Awakening Kundalini: The Path to Radical Freedom

These two books gave me a good introduction to the concepts around Kundalini. 

Kundalini Rising: Mastering Creative Energies - by Dr. Barbara Condron is a difficult-to-read book. However, it is an impactful book as it demystifies the concepts of Kundalini.

Awakening Kundalini: The Path to Radical Freedom - by Dr. Lawrence Edwards is a better-written book with a similar demystifying impact. 

6. Living with Kundalini: The Autobiography of Gopi Krishna

This remarkable book gives a first-person account of kundalini awakening and unfolding over a dozen years. It highlights the dangers of going about it in an ignorant and unguided manner.

7. Autobiography of a Yogi - by Paramahamsa Yogananda

This terrifically entertaining book gives a profound introduction to yoga and the Vedic traditions from ancient India.

Got to know of Self-Realization Fellowship from this book. 

The Self-Realization Fellowship Lessons for Home Study offered through their website seems to be an easy-to-follow and trusted way to deepen one's spiritual connection. I have signed up for those lessons. 

In Summary:

  • I have been reading a lot of books in an effort to learn more about spirituality, religion, yoga, meditation, natural way to cure myself of Glioblastoma. I haven't found a sure-fire cure for Glioblastoma while reading these books. However, it has indeed widened my perspective on life. 
  • I have signed up for The Self-Realization Fellowship Lessons for Home Study in an effort to build a regular spiritual practice. 
  • I have taken on a few habits like meditating for a short time, chanting mantras whenever possible during the day, reading more about these topics, etc.

Monday, August 13, 2018

The Secrets to My Strength and Resilience in the face of Terminal Cancer

All through my journey with Glioblastoma spanning from the initial diagnosis and first Craniotomy on Monday, November 14, 2016, to the present day, I have received a lot of praise and compliments on how I have been dealing with it. 

Many people have told me my fight with this terminal cancer has given them hope and has inspired them. I have been told multiple times that my positive attitude and sense of humor in the face of a terminal cancer is amazing and worthy of emulation. I have also got praise for the transparency I am bringing into the often tough journey with Glioblastoma.

I am very present to the fact that if I had not put in a lot of hard work over the years to improve myself, I wouldn’t be doing what I am doing now. 

I would have given up at the very beginning. I would be a very bitter man. I would have been feeling sorry for myself, and curse everyone and everything for life being so unfair and cruel towards me. 

As one of my friends suggested in a different context, I would have probably taken to alcoholic drinks or psychedelic drugs/opioids to make myself forget about the difficult circumstances I was facing and ease the pain. 

I am not doing all that. Instead of that, I am putting on an admirable and exemplary fight against this terminal cancer. My response to terminal cancer can literally be termed as Superman-esque.

The following three factors are a big reason why I am able to respond very differently:

  1. Going through Psychotherapy sessions costing me tens of thousands of dollars every year from 2002 to 2007.
  2. Being part of the amazingly transformational environment at Landmark Education in New York City from 2007 to 2009.
  3. Luck. Pure Luck. 

That is it. The keys to my strength and resilience in the face of terminal cancer. You can stop reading now if you are not interested in the gory details/explanations and a summarized telling of my life story. 😁

Just to be clear, I didn't take on all this hard work to improve myself with the objective of preparing myself for a life with terminal cancer. I took on these personal improvement tasks as they came up in other contexts in my life, and thankfully it is turning out to be very helpful in my current struggle. 

The rest of this blog post explains each of the three factors in detail. 

1. Psychotherapy Sessions - Why? What? How? Etc. 

The unique circumstances and specific situations/incidents, while I was a kid, set me up for life as a misfit. As an individual devoid of any personality or sense of self-worth. Everyone I met was always better than me in some way or the other. They had what I craved for. I did not have what they had. I would forever keep seeking approval and appreciation from everyone.

A few weeks after the September 11th attacks, I self-diagnosed myself with Narcissistic Personality Disorder and started seeing a trained & certified Psychotherapist in Manhattan for weekly once/twice/thrice psychotherapy sessions.

The progress was slow as I wasn't very convinced of its effectiveness even though I had convinced myself to pay thousands of dollars every month for those sessions. At the back of my mind, there was always a voice that was telling me "I am a fool and am getting fleeced willingly."

Progress did happen as I stuck with it even while I wasn't seeing any quick and immediate benefits. In slow spurts. With starts and stops.

The process of personality formation which should have happened while I was a kid in the safety and love of my parents started happening slowly from across the therapist's table in an expensive office over multiple therapy sessions spanning months and years.

I don't know how much money I spent on the whole process. I can only nail down the estimate to "Tens of thousands of dollars every year." I guess I was lucky I was gainfully employed and earning well enough in Manhattan to afford that kind of a yearly expense.

After sticking with Psychotherapy sessions for nearly 6 years, I finally ended those sessions after I started feeling like someone of value.

My participation in the Landmark Forum Course in June of 2007 also was a big factor in me ending the regular Psychotherapy sessions. That leads me to the second factor.

2. Transformation through Landmark Education Courses

I attended the Landmark Forum Course in New York City for the first time from Friday, June 8, 2007, to Sunday, June 10, 2007, and had an amazingly transformational experience. I walked in on Friday morning as a person who had the weight of the world on his shoulders and walking around with a frown always on his face. By that Sunday evening when the course was ending, I was a totally different person. It almost felt like a huge weight had been taken off my shoulders and I was feeling very light and happy and at peace with myself and with the world.

I think what happened was that the course made me loosen the grip my past was having on my mind and let me deal with the current situation on its own merit without bringing in the huge luggage from the past into consideration.

The various lessons - called distinctions in Landmark Education lingo - learned during the Landmark Forum course makes one see the world with a new set of eyes.

The one negative thing about the Landmark Forum course though is that even though it is a very transformative 3-day experience, the lessons learned during the three days do not stick permanently. Especially as we go back to our regular life and our old ways of living and being. Which makes us forget the lessons from the Landmark Forum very quickly as we come to believe the way our life is as the real truth and what we experienced in the course will soon be forgotten as an aberration.

To counter this, the Landmark Education community encourages participants to sign on for more courses. Specifically, the participants are encouraged to complete a set of courses grouped together as 'The Curriculum for Life." So naturally, there is a lot of cross-selling of other courses while a person is attending one course.

This is likely to put off some people. This is the reason Landmark Education is considered disreputable and as a cult. In fact, my wife used the over-sales content as an excuse to walk out of the Advanced Course she had signed up for in Bangalore a few years later on my urging and decided to never do any other Landmark Education course. 😞

Thankfully I didn't fall into that trap. My circumstances at that time allowed me to commit as much time as I wanted on Landmark Education for the next 3 years. I was very impressed with the impact my participation in the Landmark Forum course had on me. I decided to commit as much time as possible learning more and being immersed in the Landmark Education community for the next few years. In fact, at that time my goal was to work towards becoming a Landmark Forum Leader, having been impressed by the power and charisma they exuded while leading the 3-day course.

From mid-2007 to end-2009, I was a permanent fixture at the New York Center of Landmark Education. Spending 2 or 3 evenings during the week and one or two weekends a month at the Center. Either attending a course or volunteering at their office.

It was the 6-month Introduction Leaders Program I participated in 2009 that finally made all of the distinctions of Landmark Forum a permanent part of me. Even though I haven't been to a Landmark Education course or Center since 2009, the lessons have served me well ever since.

I attribute a big part of my strength and resilience in the face of terminal cancer to the lessons I learned as part of my immersion in Landmark Education world from 2007 to 2009.

3. Luck. Pure Luck.

Luck has played a big role in how I have been dealing with Glioblastoma so far. It was luck that set me up as a misfit for life and made me take up psychotherapy sessions for years that would help me later in life. It was luck that made me immerse myself in the Landmark Education world in New York City from 2007 to 2009 and make me learn some life lessons that would make a huge difference over time. 

More immediately relevant to the journey with terminal cancer are the following factors where luck has played a big part:

3a. Medical Insurance through Obamacare Exchange

As a freelancer with a 2-year-old daughter, I had medical insurance through the Obamacare Exchange in Colorado. And not through an employer. This turned out to be a big slice of luck as the insurance obtained through the Obamacare Exchange did not have limits on pre-existing conditions and hence ensured that any relevant medical expense will be fully covered. This ensured that my treatment on the diagnosis of Glioblastoma was very speedy and smooth. 

I was diagnosed with a brain tumor at around 8:00 AM-ish on Monday, 14th November 2016. By 2 PM the same day, I was on the operating table to remove the tumor. And by 5 PM that day, the tumor was removed and I was recovering in the Intensive Care Unit. A big part of this was because of the guarantees provided by my insurance obtained through the Obamacare Exchange. 

The fucking Rep-ugly-cans and the Conman Dotard administration has been trying their best to destroy Obamacare as a whole, and dismantle parts of it like the 'No Pre-existing-condition clause'. So it is likely I will have problems with insurance covering my cancer bills soon. At the time of my diagnosis though, that was not the case, and the insurance made things go very smoothly as I have explained so far. The insurance has been good with the ongoing treatments as well. 🙏🙏🙏

3b. Reasons to be Thankful

During my diagnosis and first craniotomy, the way things turned out made me be very thankful from the beginning, and that set me on the whole journey with terminal cancer with a good attitude. 

A severe bout of nausea and throwing up + losing consciousness on my way back from the bathroom had taken me to the emergency room early morning on Monday, 14th November of 2016. I don't recall anything about meeting the doctors or undergoing the surgery, etc. after that. 

Next thing I know I wake up in a very strange place on Tuesday, 15th November 2016. My first thoughts are that I am still asleep and having a very strange dream and that I will wake up soon and everything will go back to normal. Slowly I realized that I was in a hospital and that the people fussing over me - the doctors, nurses, my family, and friends - were all really there and that I have been through a risky medical procedure. I could see very well. I could talk very well. I could hear very well. I could move around with help, but it didn't look like I was damaged in any way. 

There was a huge bandage on my head that indicated my head had been cut open. Other than that I seem to be perfectly fine. As I learned more about the risks involved with a brain tumor operation, I was amazed that I came on the other side of it with no major side-effects whatsoever. That was part of what made me very thankful even though I had been through a major medical procedure. 

Another aspect of this situation was that I was unconscious during the worst parts of the ordeal. I woke up only after the worst parts of the situation was over. Thank God!

That sense of being thankful has been with me ever since and has been a big part of my fight with Glioblastoma. 


Hope this write up about how I have strength and resilience in the face of terminal cancer helps and inspires others. 

If you have some questions about any of the above please write to me at prakash.n.murthy at

Tuesday, July 24, 2018

Turning a 3-days hospital stay for Craniotomy into a picnic

I was at the Boulder Community Hospital in Boulder, CO from Thursday, July 19th to Saturday, July 21st for my second craniotomy after a Glioblastoma Tumor recurrence was discovered during a routine MRI scan on Tuesday, June 19th, 2018.

The surgery itself went on for a couple of hours from noon to 2:30 PM-ish, and I woke up from the sedated state around 4 PM-ish.

The only side-effect observed so far is that I have lost sensation on the whole of my right leg. This numbness - a very minor side effect - should go away on its own in a few days.

That is my new surgery scar. The stitches and staples will be off two weeks after surgery. With a lot of resting and sleeping till then, I will be as good as new physically and mentally. 💪🙏

The surgery can indeed be considered a great success. Also, the whole experience through the surgery was so smooth that it was almost like we were at a three-day picnic in an exotic location and not going through a nightmarish medical procedure.

This was so because I worked hard to make it so, and I want to write in detail about how I went about turning a serious medical procedure into a picnic in this blog post with the hope that it will inspire others. Not everybody can do all the things I have done as everybody's circumstances are different. Nevertheless, I hope this will be helpful to a few fellow glioblastoma warriors.

Here are the main factors I think helped me in this effort:

1. The world es mi familia

When it comes to battling cancer, the entire World is indeed my family.

This is not an empty statement. This is the truth I have been living ever since it dawned on me during the time I was getting up and figuring out what had happened after my first craniotomy on November 14, 2016. 

As I struggled to come to terms with the seriousness and grimness of my situation just after going through a risky medical procedure, the sight of so many of my friends and family, and hospital nursing staff and doctors fussing over me was a balm to my eyes and spirit. It made me feel like I was not all alone in my fight. That I had a very supportive network that will protect me in this troubled times.

That the whole world is my family in my fight against cancer has been borne in on me many times since the first surgery. I started two fund-raisers since then and both times the response has been phenomenal. The response to the most recent fundraiser was especially important as it completely took off money worries from our plates and let us deal with just the surgery in its own right.

So my conclusion is that I considered the whole world to be my family in my fight with cancer and the world has proven it right by supporting me generously whenever I asked for help.

2. Accept that Craniotomies are part and parcel of a GBM patient's life

The second most important thing I did to prepare for a smooth time at the craniotomy is to accept that craniotomies are an expected part of my life as a Glioblastoma patient. That attitude allowed me to say "I choose to have this brain surgery" and not go into the procedure with "Why me? Why should I be forced to go through with this monstrous procedure? What did I do to deserve this punishment? etc."

That positive attitude played a big role in me waking up within a couple of hours after the surgery and bouncing back to full health very quickly after that.

In my 5-minute talk at Ignite Boulder about living with Glioblastoma, I have detailed a future for me where I have a few brain surgeries to survive the multiple tumor recurrences. This is a fact every Glioblastoma patient has to face and make peace with.

Here are a few glioblastoma patients with the number of brain surgeries they had:
  1. 18 years survivor Cheryl Broyles had 6 craniotomies since 2000 and is still kicking ass.
  2. 22 years survivor Ben Williams had no recurrence or repeat craniotomies ever! 😮
  3. Chad Peacock of Brain Chancery blog that inspired my blog had 6 surgeries.
  4. Joe Biden's son Beau Biden had two or three surgeries.
Looking at the exceptional example of Ben Williams above, it does look like my assumption that recurrences and craniotomies are a normal part of a glioblastoma patient's life is flawed. Nevertheless, it has helped me so far to deal with the difficult journey with cancer.

3. The advanced state of neurosurgery

Having gone through two craniotomies so far and come out on the other side from them with almost no side effects, I must say I am very impressed with the current state of neurosurgery.

During my first surgery on November 14th, 2016, I did not get to meet the neurosurgeon - Dr. Sharad Rajpal - who performed the craniotomy on me. However, I could feel his presence. And the effect of his work. The more I learned about what I had gone through and all the risks that were inherent in the procedure, I was very impressed with the neurosurgeon and his work. Since it was an emergency surgery, looks like Dr. Rajpal got only a couple of hours notice before the surgery and yet performed what would qualify as a miracle in my eyes.

Knowing all this, I just made it up that Dr. Sharad Rajpal was a god who saved me this time.

That is Dr. Sharad Rajpal with me after the second craniotomy last week. This time I got to meet and talk with him, and confirm that he is indeed a regular human being. So I am downgrading him from God to Man-with-the-magic-hands. 😄

I hope I won't need any more craniotomies in the future. However, knowing that there are neurosurgeons of Dr. Sharad Rajpal's skills and talents to handle such a procedure and that the state of neurosurgery is amazingly advanced gives me confidence that I could take it in stride when it comes.

4. An unfortunate accident turns into a blessing in disguise

A few days after my tumor recurrence was discovered I ran into an unfortunate accident getting hit by a car. And breaking a couple of bones in the process.

I had to undergo a surgery to fix my left knee, and also had to postpone the date for my brain surgery to give myself time for recovering from the knee surgery. 

This turned out to be a blessing in disguise on multiple counts. 

Firstly it turned out to be a good trial run for the more serious surgery lined up in the future. 

Secondly, it gave me a taste of living as an invalid. Since I couldn't put too much weight on the left knee while it was being healed, I had to stay at home most of the time and had to move around on a wheelchair both inside the home as well as when we went outside. 

This turned out to be very important in the context of the potential risks from the brain surgery. The new recurred tumor was located in the left parietal lobe very close to the motor cortex controlling the motion of the entire right side of the body. Hence, there was a serious risk of me ending up completely paralyzed on the right side of the body or some other motion-related side effect from the surgery. 

By getting a taste of life as an invalid due to the knee surgery, I believe the fear of being an invalid was taken out of my mind and that helped in not manifesting that outcome from the brain surgery. 

I will take all the blessings even if they come with a lot of disguises. 🙏🙏

5. Embracing Social Support

In one of the earlier blog posts exploring the Nine Key Factors Critical for Surviving Terminal Cancer, I had identified Embracing Social Support as one of the key factors.

I have been very open about my journey with Glioblastoma from the very beginning. That has helped me lead as much of a normal life as possible with all the ongoing treatments and fears, etc. Also, it has provided a continuous flow of positive vibes from many people who keep telling me they are inspired by how I am dealing with my circumstances. This positive feedback further reinforces my resolve and determination to stay positive no matter what.

Another aspect of embracing social support was to ask for and receive all the help I wanted before, during, and after the surgery. My friends and people in the wider communities I am part of in the Boulder-Denver area responded very generously to all my requests making life easy for me. 

The day after the surgery - on Friday, July 20th - I reached out to my friends and colleagues at Dojo4 and asked them if they could visit me at the hospital. They not only visited but brought food from my favorite restaurant - Garbanzo Mediterranean Fresh - and made it a fun picnic lunch at the hospital.

That's me with the Dojo4 team before we got around to lunch. 

On the same day, Boulder's own famed Investor and Entrepreneur Brad Feld was visiting a friend of his in a neighboring ward and came by to say Hi.

I asked the universe for social support and the universe was serving up social support with a very generous nature. 🙏🙏

On the day we left from the hospital - Saturday, July 21st, my work buddy Elliot drove over from Denver and picked up food from my favorite South Indian restaurant in the Denver metropolitan area - Bawarchi Biriyanis Louisville

Also, Dona Laurita - whose eighteen-year-old daughter Jules is fighting glioblastoma - came by to meet with us after we had been talking about it for a long time. 

While we are all there my daughter had fun drawing a unicorn on the whiteboard. 👶😍

Thanks to everyone who supported us during the two craniotomies and the interim period. Thanks to everyone who prayed for my wellbeing. Thanks to everyone for wishing me a speedy recovery. 

Thanks, everyone for helping turn a major life event into a fun romp in the park.

6. Luck (Post-script added on July 25th)

When I shared this blog post on the Glioblastoma Warriors and Brain Tumors Fighters public Facebook group a fellow warrior commented as follows:

My first 2 craniotomy were 48 hour stays. Third was 20 days due to surgery related stroke!

So, Yes. Luck is definitely a big factor in my smooth ride with the second brain surgery. 

The story so far

It has been a month since I decided to start a blog to journal my journey with Glioblastoma Multiforme after bei...