Wednesday, March 28, 2018

Addendum to the 'Running will save me' story


An additional marathoning related goal that inspires me is to run a marathon in all 50 states in the United States and in as many countries as possible.
This goal would mean I will be running a lot over the next few years. In addition, this goal would make it possible for me to travel a lot with my wife and daughter!
This goal has inspired me to register for - or consider registering for - many marathons this year in the states within driving distance from our home in Longmont. 

Here are some marathons on my planning horizon (RegisteredConsideringDone):
  1. Los Angeles Marathon on Mar 18, 2018 : I had a great time running this marathon! So California is the third state - after Pennsylvania and New York states - where I have completed a marathon.
  2. Eisenhower Marathon in Abilene, KS on April 7, 2018 : Was a bit concerned about registering for this marathon which is just 3 weeks after the LA Marathon. However, my objections were easily overcome by the temptation of picking up another state with just a 8 hour road-trip. 
  3. Colfax Marathon in Denver, CO on May 20, 2018 : My home state. Finally. After an abandoned attempt at running the Denver Rock 'n' Roll Marathon in 2012 or 2013. And another abandoned attempt at running the Colfax marathon in 2015(?)
  4. Mt. Evans Ascent on June 9, 2018 : Not a marathon. However, I expect this one to be the toughest of all the races I have planned to run this year. That is so because this race of 14.5 miles will start at the altitude of 10,600 feet, and goes up to the Mount Evans peak at an altitude of 14,264 feet. I better start doing some hill running if I want to finish this race with stringent cut-off times (A 2.5 hour cut-off for getting to Summit Lake which is 9 miles into the run at an elevation of 12,850 feet, and the finish line will be closed after 4.5 hours).
  5. Angel Fire Adventure Marathon in Angel Fire, New Mexico on July 1, 2018 : Another easy-to-pick-up state with just a 6.5 hour road-trip from our home. Haven't registered for it yet. I guess I am waiting to see if I will survive the first couple of marathons I have signed up for before I sign up for this race. 😆 UPDATE on March 31st 2018: Decided against this event, to focus on the Cheyenne + Chicago events in September.
  6. Maah Daah Hey Trail Marathon in Medora, North Dakota on July 28, 2018 : Yet to register for this Trail Marathon that is 9 hours away from home. The "Trail" part of it makes it a bit scary. UPDATE on March 31st 2018: Decided against this event, to focus on the Cheyenne + Chicago events in September.
  7. Cheyenne Marathon in Cheyenne, Wyoming on September 23, 2018 : This is probably the most easiest state for me to pick up, as it is little over an hour's drive away from my home. I am a bit concerned about the timing as this marathon is just 2 weeks away from Chicago Marathon for which I have already registered, and very excited to run as it is a BIG CITY MARATHON. This race could be an ideal preparation for Chicago Marathon. Or it could so happen that I crash and burn at either one or both of Cheyenne and Chicago Marathons. 😆
  8. Chicago Marathon in Chicago, Illinois on October 7, 2018 : BIG CITY MARATHON!! I am so there for all the thrills and magic.
  9. Moab Trail Marathon in Moab, Utah on November 3, 2018 : 6-8 hours away from home. A solid reason for finally visiting Arches & Canyonlands National Parks for the first time.
  10. Houston Marathon 2019 in Houston, Texas on January 20, 2019 :  I had registered to run the Houston Marathon in January 2017, but then the brain surgery in November 2016 put an end to those plans. Visiting our family in Houston is an additional bonus for this marathon. UPDATE on March 31st 2018: Decided against this event to focus on preparing for the Fort Lauderdale event instead.
  11. Fort Lauderdale A1A Marathon 2019 in Fort Lauderdale, Florida on February 17, 2019 : Registered for this Marathon as one of the first few participants to avail of the Early bird discount. 😃 Also purchased the Registration Protection so I can get my Registration fee back if my plans change and I can't go there. Fort Lauderdale was the first place I lived in the US when I moved to US for work back in 1998! So very excited about running on my old stomping grounds next year. Since we have family members living in Fort Lauderdale now, this would be a family visit trip as well. Also, a week in Sunny Florida, away from the cold weather in Colorado in the middle of winter seems to be a wonderful idea. Lastly, I do miss the Atlantic Ocean! Looking forward to spending a lot of time on the beach next February. 😆
So a lot of Marathoning for me in the near future. 😆💪

Tuesday, March 27, 2018

Glioblastoma Hero?

Saw this interesting quote while walking on Pearl Street in Downtown Boulder today :



A HERO IS ONE WHO
HEALS THEIR OWN WOUNDS
AND THEN SHOWS OTHERS
HOW TO DO THE SAME.

               - YUNG PUEBLO

That's exactly what I am hoping to be and do with respect to Glioblastoma with this blog! I want to cure myself, and document the steps in detail so it helps others who are / will be afflicted by Glioblastoma! 

If I do end up being successful in this goal, that means I would have outlived my dire diagnosis by a huge margin, and survived a terminal cancer for many many years!

GLIOBLASTOMA HERO - THAT'S WHO I AM!

Sunday, March 25, 2018

Small and big changes I am making in my diet and lifestyle to defeat cancer.

Here are the small and big changes I have incorporated into my life since January this year on realizing I can't depend on conventional medicine alone in my attempt at surviving brain cancer:
  1. Eat a couple of cloves of raw garlic everyday with breakfast : One of the very first things I tried because it is so simple to take it on. After biting into full cloves of garlic - and burning my mouth and blackening my teeth (which my daughter constantly reminds me of with "You have dirty teeth." 👶😂) - for a couple of weeks, I have now finally arrived at the right way to consume raw garlic: Chop it up into as small pieces as possible, set it aside for 10-15 minutes for it to lose the sulfurous odors, then mix with my breakfast.
  2. Completely drop Sugar from my diet : This turned out to be an easy task to do since I was already doing it for 6 days of the week while I was on the Slow Carb Diet last year. I just had to extend the diet to all 7 days of the week.
  3. Completely drop refined grains from my diet : There goes my life-long staple diet of rice and wheat. This again was easy to accomplish because I was already doing this as part of the Slow Carb Diet. Now Lentil, Beans, Tofu, Eggs, greens, and Soya Chunks form the bulk of my diet.
  4. Completely drop dairy products from my diet : This was something new I had to try on. So out goes milk, butter, paneer & yoghurt. Replaced by soya/almond milk, Sauerkraut & Tofu.
  5. Eat raw food (greens, vegetables, berries, ...) in the form of salads/smoothies regularly : I was doing this earlier as well; so an easy transition. These days I have discovered a new taste for Greek/Mediterranean Salad; that is my go-to dish if I am eating outside.
  6. Have a cup or two of Green Tea daily : Totally new habit for me.
  7. Consume Curcumin + Piperine supplement daily : Another new habit for me. For the first batch, I mixed the curcumin and piperine powders (10:1 ratio) with honey. For the second batch, we are trying out Ghee as the mixing agent. Yes, yes, Ghee is a dairy product, I know.
  8. Read / Re-read / Read yet again - all the P. G. Wodehouse novels there are : Nothing puts me in a better mood - with joy and love towards everything & everyone in the world -  than the absurd & silly comedies written by that master of farce - Sir Pelham Grenville Wodehouse
  9. Get help with life from a coach : In general, I have been stressed and frazzled by many things life throws at me over the last couple of years. To counter this, and maintain a healthy frame of mind, I have been having a weekly coaching call with Dave Rudbarg - a friend from my Landmark Education days in New York. Since the coaching calls started in January, these weekly conversations have been very beneficial in making me see my blindspots and appreciate all the accomplishments & good things in life that I am prone to discount & dismiss.
  10. Replace on-going unproductive & harmful mental chatter with Ho'oponopono mantra : Ever since Dave introduced me to Ho'oponopono mantra ("I love you. I am sorry. Please forgive me. Thank you"), I have been using it to calm myself down when agitated/upset, and it has been making a huge impact on my ongoing mental health. Gone are the ongoing self-criticisms about the one embarrassing thing I did in 1997, the thing that my wife did last week to offend me so much, the thing that happened on that project in January that caused so much mental anguish, that stupid thing happening over there, etc. To be replaced by a sense of forgiveness and peace.
  11. Spend more time with family and myself, and not feel guilty about it : I have missed many a day of work this year - which my freelancing career makes possible (at a cost) - to spend time with my wife & daughter, or to rest to recover from the residual fatigue from the chemotherapy / radiation therapy. For the large part, I have been able to not beat myself up on it as I used to do previously.
  12. Make regular exercise an integral part of life : One of the goals I took on at the beginning of the year is to run at least 30 miles every week. So far, I have been able to do that all of the weeks this year, except two - one in January when I was hampered by an abdominal muscle strain, and this past week when I decided to rest and recover after running the Los Angeles Marathon last Sunday. With plans to run at least 4 more marathons this year, I am quite sure I will be having regular exercise throughout the year.
  13. Minimize usage of, and keep distance from, my cellphone : While there is no way to directly connect cellphone usage to brain tumor incidence, in my case there is a small probability that my cellphone usage might have contributed to the brain tumor. I have had an Apple iPhone ever since the first-generation iPhone came out in 2007. I don't use it a lot as to be deemed excessive, but when I use it, I do tend to use it with my right ear. The tumor showed on the right side of my frontal lobe. So there could be some connection. In any case, I have been minimizing the usage of my cellphone recently. When I have to use it, I use it with headphones or with the speakerphone.
  14. Snack on Dark Chocolate regularly : 😇
I think those are the most important ones I can think of right now. 

There are a lot of advice out there about how to deal with Cancer. Often conflicting. Everyone has this one favorite tip that they want me/cancer patients to consider. After going through many resources (books & blogposts, etc.), I have zeroed in on the following as the authoritative resources on which to base my decisions about dealing with Glioblastoma:
  1. Kelly A. Turner's book Radical Remission : Surviving Cancer Against All Odds : This book has a lot of practical advice based on research with long-term survivors of various types of Cancers. 
  2. David Servan-Schreiber's book Anticancer : A New Way Of Life :  The author of this book survived brain cancer for a long time before succumbing to a recurrence. One of the last things he wrote talks about him paying the price for not heading his own advice. Loads of practical advice here as well.
  3. Book, movie, and Blog by long-term Glioblastoma survivor Ben Williams : Who is more authoritative on the topic of surviving Glioblastoma than a 21 years survivor?
  4. Book and Blog by long-term Glioblastoma Survivor Cheryl Broyles : Her blog is the first place I learnt about the holistic approach to dealing with a brain tumor. 
I have not yet completed going through and adopting from all these resources. I will continue working on it over the next few months and blog about important changes.

Not all of these changes were easy to take on. However, as I mention in my blogpost about facing the threat of imminent death:
Keeping early death as an outcome on one side makes it easy to make huge changes like dropping sugar completely from one's diet.

Friday, March 23, 2018

Running (Marathons) will keep me alive for a long long time

I just finished running the Los Angeles Marathon. I have plans to run many more marathons in the future. The motivation for running marathons comes from the established positive connection between regular physical activity & immune system health

Boosting one's immune system is teaching & enabling the body to fight the tumor naturally. So I run to be alive. 

I don't have to run marathons. Running shorter distances and for shorter times should do the trick as well. However, I have zeroed in on running marathons as it aligns with my long-term goals, and I find it a much more inspiring goal than running shorter distances.

A little bit of history about my running:
  • I was very physically inactive as a kid, as a teen, and as an early adult. I never participated in any sporting activities at school or had any hobbies around sports. I was more into books and was happy being by myself than join in some physical activity with other kids.
  • Sometime in 2005/2006, I was in Grand Canyon and hiked down and up the canyon in one day. The hike back up was very strenuous, with me walking a minute and resting two minutes towards the end before moving on. The whole hike made me realize I wasn't in a good physical shape, was over-weight, and needed to start on some regular physical activity. I think my cholesterol numbers were also bad at that time, adding to the urgency to start getting physical.
  • That inspired me to start on running regularly, and I ran my first 5K race in Oct, 2006 at the age of 34.
  • Followed it up with my first marathon at Philadelphia in Nov, 2008.
  • And the second marathon in New York in Nov, 2009.

  • Since both my marathons took over 5 hours, I got discouraged looking at how much effort it would take to become faster and finish a marathon in 3 or 4 hours. That made me give up on marathons, and stick to run shorter distances.
  • Being diagnosed with a terminal brain cancer in November 2016 and living with a constant fear of dying soon changed my perspective about marathons. I took up the challenge of running marathons again.
Over the last few years while I wasn't running marathons, I have tried to keep active by running shorter distance races and get faster at them. However, that hasn't helped me keep up a very regular physical activity schedule. Somehow or the other, I end up with a long stretch of time when I haven't had any exercise. So my conclusion is that the goal of running shorter distances (5K, 10K, etc.) does not have the same romantic pull and longer term effect as training for and running a marathon.

An additional motivation for running marathons is the striving to become a faster marathoner and qualify for Boston Marathon at some point in time. That dream somehow got into my head in my early days of running back in 2007/2008. As I learnt through experience how much of an effort it would take - how many hours of lonely running over the years it would take - to accomplish that goal, I got completely discouraged about running marathons and totally gave up on marathons in general, and about qualifying for Boston Marathon in particular.

Now that I am living under the sword of imminent death from a terminal cancer, the effort to qualify for Boston doesn't seem all that daunting. It might take me 4 years. Or 8 years. Or 20 years. Whatever. 

Pursuing the goal of qualifying for Boston Marathon would mean that I will have a strong desire for living for that many years in the future!

One of the 9 key factors that make a real difference in Kelly A Turner's book Radical Remission: Surviving Cancer Against All Odds is:
Having strong reasons for living.
Striving to become a faster runner and become fast enough to qualify for Boston means I will have a strong reason for living over the next few years. So I am gonna run, run, and keep running!

Addendum to this blogpost: The list of Marathons I am running in 2018

I like being alive. So I will wear Optune always forever.

Here are the details of the treatments I have undergone since the Craniotomy on Nov 14, 2016:
  •  I started on the 6 week Chemotherapy & Radiation therapy treatments on December 20, 2016, and completed it on January 31, 2017.
  • After a one month break, I started on the 5/23 Chemotherapy treatment (5 days of higher dose chemotherapy treatment in a 28 day cycle) on March 1st, 2017. 
  • Started on the Electric Field Therapy treatment with Optune device on the same day. 
  • Finished the 5/23 Chemotherapy treatment after 6 cycles in July.
  • Continued with the Optune treatment beyond the Oncologist recommended 6-months since I see it as a big hope in preventing a tumor recurrence.
So the Standard Of Care (SOC) treatment conventional medicine offers for Glioblastoma patients consists of chemotherapy & radiation therapy over 6 weeks, followed by 6 or more cycles of higher dosage chemotherapy treatments. All of this is likely to be completed 6-9 months after the initial surgery. That is it. Nothing more. 

The reasoning behind this treatment plan seems to be to get the patient to live a relatively healthy life till the tumor comes back in about a year/18 months - as is the expectation, and the patient can undergo another de-bulking surgery  (Craniotomy) to survive for a few more months. 

My conclusion from having gone through the complete SOC treatment for Glioblastoma is that the medical community operates with the assumption that the patient will die sooner or later. Not much hope of long-term survival from that corner. 

If I depend only on SOC treatment for GBM, the path I am likely to take will involve a few more craniotomies over the next few years, till my body can't take it anymore and gives up, ending my life.

In the barren wasteland that is the GBM treatment landscape, I see Optune as a sole ray of hope. It does not cure Glioblastoma, but helps survive it by preventing the tumor from recurring. At least for some time. Maybe for ever.

Optune has been approved for GBM treatment by FDA only since the last couple of years. My friend Ron Clanton - who was diagnosed a year earlier than me - was not given Optune as one of the options. Chad Peacock in his 6 year long blog about his journey with GBM from 2012 to 2017 doesn't mention Optune even once; so I am guessing even he wasn't given Optune as an option. Both Ron Clanton & Chad Peacock are now dead. 😢
I am lucky to be given Optune as one of the options. 
I like being alive. So I will wear Optune always forever.
The medical community (including my Oncologist) is not very convinced of its long-term effectiveness. My Oncologist recommended discontinuing Optune after 6 months of usage as he says there is no study to support its continued effectiveness beyond 6 months. I overruled him saying I am convinced of its effectiveness and want to be on Optune forever. 

I was very convinced of the benefits of Optune right off the bat when I first heard of it during the initial research into GBM and its treatment. The theory - the device generating alternating electric fields interrupting cell division process to prevent the tumor from growing - seems like stuff straight out of science fiction, but is very real and is very compelling to me. Especially since there is nothing else to offer even a sliver of hope.


I was also told at the beginning that people don't use Optune for too long and give up on it very quickly as they usually tire of it very soon because it is very cumbersome to maintain. Avoiding a little inconvenience is more important than being alive? I don't understand. 😆

The recommended usage time is for the patient to have Optune on a minimum of 75% of the time. That is, 18 hours in a 24 hour day - so even when the patient is sleeping. Since I started on Optune towards the end of Feb 2017, I have been averaging very high on monthly usage percentage for Optune - over 85% always, and above 90% most of the time. 

The way I look at it:
THE MORE TIME I HAVE OPTUNE ON, THE LESS TIME THE TUMOR GETS TO GROW BACK. 
SO THE MORE TIME I HAVE OPTUNE ON, THE BETTER MY CHANCES OF LONG-TERM SURVIVAL!

Towards the end of 2017, my confidence in the efficacy of Optune was shaken a bit on reading about the death of Sam Taylor, who was among the first users of Optune.
I built back my confidence in Optune, and about my ability to survive GBM by considering the fact that Sam is not likely to have the high utilization rate that I was maintaining through out, and there may be other factors that could have contributed to his death. 

Some details about how I use Optune:
  • The folks at Novocure have given a lot of thought on how to make it as easy & simple as possible for patients to use Optune. I am very thankful to them for that. 

  • Since I was very convinced of Optune's importance in keeping me alive, I put in all the effort it took to make Optune a regular part of my life. 
     
  • Since I can't do too much physical exercise with Optune on - the resulting sweating will cause the Optune arrays to malfunction, and I would have to change them - I plan my weekly runs ahead of time to coincide with the time when I change my Optune arrays.
  • Changing Optune arrays is an involved process - I have to shave my head, and my wife has to help me put the arrays on in the right place. Also, I have to apply anti-itching cream like Cortizone-10 for 45 minutes after taking off the arrays to avoid skin irritation issues. So there is a bit of co-ordination involved in planning the change of Optune arrays.
  • The biggest difficulty living with Optune is the heat during summer days. Heat results in sweating which leads to malfunctioning of the arrays. I avoid going outdoors as much as possible during summer. Also, a fan is a must when I am sleeping during summer.
  • Novocure support team makes it very easy to be on Optune by encouraging changing the arrays as frequently as needed, even every day. While I was doing daily runs as I was ramping up my training for the Los Angeles Marathon earlier this year, I did take them up on the offer, and was changing arrays every day. The support team is available on phone almost all the time, and are very helpful with any issues I have. Really thankful to them about it!
  • Traveling and commuting with Optune is a bit of a hassle as I need to make sure I have fully charged batteries / power source adapter with me when I travel. I have a little commute to work these days, and have got used to carrying all the required items with me. There were a couple of times when I had to turn back home as I had forgotten one or the other item. 😆
  • I have been avoiding air travel for a long time as I had assumed it will be very inconvenient to travel with Optune. International travel to see my family in India is definitely going to be a lot of hassle, so I am not planning a trip any time soon. It was only recently that I ventured out on a domestic flight trip - from Denver to Los Angeles to run the Los Angeles Marathon. It did turn out to be a bit of a hassle as the Airlines usually limit the number of batteries to be carried on Carry-on luggage to 2. And batteries cannot be put in the check-in luggage. So I had to find places at the Airport to charge the batteries to last the entire journey's length. The battery limit on domestic flights is an issue only if I am traveling by myself. If there is someone else with me, they can carry the other two batteries for me; so I can have access to four fully charged batteries - which last around 15-16 hours - over the long trip. Even while traveling, it is very obvious Novocure folks have optimized Optune paraphernalia for ease and simplicity of usage. Three cheers to them!

Some money, politics, and long-term concerns/issues around Optune usage:
  • Optune costs $21,000 per month. I am glad my insurance (that I brought through the Obamacare exchange since I am a freelancer) has been paying for most of it throughout. In addition, Novocure has a financial assistance program that provides for me to pay a nominal amount ($200/$300) based on my income in case my insurance does not pay for it. So it looks very likely that I will be able to continue using Optune for as long as I am alive. 
  • The Republican Fuckers - in addition to sabotaging Obamacare - have been working on bringing back life-time limits on how much insurances can spend on patients over their lifetime. What that means is: For people like me who need an expensive medication/treatment just to be alive, the insurance companies can - after some time - say: "Hey, you have become too expensive for us to keep alive. Please jump off the nearest skyscraper and end your life." 😡 If it were possible, I would hang every last republican - Conman Dotard, the senators, the representatives, the party office holders, the voters to the very last one, every one of them - till they choke to their deaths. Even that will be being very kind to those heartless bastards.
  • While I like being in the US, there is a small possibility that I give up on living in the US and move back to India - on account of insane gun laws, inhumane healthcare laws, expensive costs of living, etc. - and in that case, it will not be possible for me to continue with Optune. Optune is not offered in India. Even if it is offered in India, the hot weather would make it impossible to sustain over more than a few days/weeks.
For now, I am going to stick to Optune like glue and never let go, and continue dancing in life with Optune. 😆

Thursday, March 22, 2018

Facing the very real possibility of my imminent and early death

I have been struggling with this blogpost for over a month now, ever since I got the idea of writing a blogpost about this topic. Goes to show how difficult of a topic this is to process. 

There may be people who can wax lyrical about the possibility of their own upcoming demise. I am not one of them. I am finding it very hard to put into words all the thoughts and hopes and concerns and worries I have around the very real possibility that I could be dead in a few months/years.

First of all, I just finished running a marathon with a decent finish time, and am supposedly at the pinnacle of good physical health. So why - at this time - am I talking about my death? 

It is because what I have is Glioblastoma Multiforme (GBM) - an aggressive form of brain tumor - which could at any time in the next few months/years trigger multiple recurrences - one after the other or simultaneously - of the brain tumor and lead to my death.

GBM is casually associated with sentences like "glioblastomas are usually fatal within two years with treatment, and often within weeks without treatment". Everyone who has been diagnosed with GBM eventually dies (in a matter of 2-3 years) - Senator Ted Kennedy, Joe Biden's son Beau BidenCanadian Rocker Gord Downie, my friend Ron Clanton, and more.

SO I BETTER GIVE IT THE RESPECT IT DESERVES.

Besides, having been diagnosed with a terminal cancer, and being informed about it, the threat of impending death never really goes away from the forefront of one's mind. 

In fact, the very reason why I took on the challenge of running the Los Angeles Marathon - and plan to run many more marathons in the future - is as a step towards defeating the cancer. This blogpost is required at the very least to elaborate on the thinking process that led to this personal decision.

I first realized the hopelessness and severity of my condition a few weeks after my brain surgery when I met with an Oncologist who explained the diagnosis to me. When I left the hospital 2 days after the surgery, the nursing staff had given me false hopes & assurances by telling me that the tumor was benign and non-cancerous. Reading up about GBM online to learn more about it over the next few days confirmed the dire prognosis. 

However, I found it easy at that time to forget about all the bad things that could happen. All I had to do was focus on my daily life, work, make plans around my running, etc. Life went on brushing aside the worst fears.

I got hit again severely with the fear of impending death on reading about Gord Downie's death in October 2017. In my opinion, he - as a rockstar - had access to the best of treatments for his ailments, and if that didn't save him, there wasn't much hope for me.

Even that time, I brushed aside the fears and moved on with life very easily by getting myself busy with mundane stuff in daily life.

The incident that really drove home the point that I could be dead in a few months/years happened in early January 2018, when I read about the death of Chad Peacock.
There is a lot to unpack around this incident. 

I did not know of Chad Peacock till I read about his death. 

Going through his blog in detail and learning about the specifics of his situation made me realize that the hopes I had of successfully surviving GBM for years were based on false foundations. Chad was 3 years younger than me. Very physically fit. A runner. Dealt with his cancer with a very positive attitude. And yet he died from complications around GBM after a 6 year battle which included 6 brain surgeries. 

I had built up hopes of surviving GBM because of my relatively young age plus the very positive attitude I was bringing into the situation. The positive aspect of my relatively young age was over-emphasized by many in the medical profession.

Realizing all that could not save me from the fate of an early death, broke my false confidence and made me realize for the first time that I could be dead in a matter of months/years. 

The fact that Chad required 6 brain surgeries to survive 6 years was also a downer. Did not bode well for the immediate future I was walking into.

The sense of hopelessness engendered by that incident played a big role in me experiencing my first seizure a few days later.

The lesson I took on from the seizure incident was as follows:
Having a fear that I could die soon could act as a self-fulfilling prophecy. It is all well & good to be wary of false hopes while dealing with a terminal cancer, but having hope that I can survive - even if it is false - is better than not having any hope at all.
Ever since the seizure incident, I have been working towards rebuilding my confidence that I will survive GBM, this time armed with facts, and real research, and experiences of long-time survivors of GBM/other terminal cancers. And making big and small changes in my diet & life-style to incorporate what I learned in this effort into my life.

I have also realized that working with the assumption that I could die soon is the best way to deal with a terminal cancer.

If that assumption turns out to be false, GREAT! I live long and everyone is happy!

Keeping early death as an outcome on one side makes it easy to make huge changes like dropping sugar & refined grains completely from the diet, or take on the goal of turning from a 5+ hour marathoner to a Boston Qualifier (3h20m marathon finisher) over few years.

I will continue elaborating on this topic with a few more blogposts in the coming days; a few of the titles I have in mind are as follows:

Thursday, March 8, 2018

Time for another fund-raiser to help me with my finances? No.


Early this week, I realized the wolf was at the door; looking very hungry, and snarling menacingly.

My bank balance had reached rock bottom, hovering dangerously close to zero, while I was distracted with other things. Things like "AHHH, I AM GONNA DIE SOON", "What can I as a non-medical professional / regular patient do to keep the tumor at bay and survive Glioblastoma?", "How does one Implement a Custom Rails Cache Store with Mongoid 6.0 if one were inclined to do so?",  "I gotta train for and finish the full 26.2 miles distance at the LA Marathon", etc. 

It was a matter of a few days/weeks before checks issued on my bank account started bouncing like nobody's business, and spread general misery and ill-will among the people who have business relationship with me. 

I had seriously started entertaining the idea of having a fund-raiser soon, adopting the line that now is the time for everyone to chip in to help a fellow out of a financial hole. I also weighed the option of touching a few close friends who had offered to help me with money for a loan/private donation. 

In the end, I decided against both these options, and instead pulled money out of my retirement account to deal with the current crisis. 

The main reason I decided against a fundraiser now is because this is not a real medical crisis induced by Glioblastoma. This is more of a self-inflicted crisis by being careless about my finances and freelancing career. 

Also, I had one fundraiser last May, and had spectacular response from my family, friends, and people in my wider community circles. I asked for $11,000; ended up getting a total of $34,693.12 through the fund-raiser.


That amount raised was very helpful; I paid up all the huge bills coming up my way from my hospitalization for the brain surgery, and subsequent ongoing treatments. I also was able to pay off the huge amount I was owing to the IRS for the previous year's taxes. 

Doing another fund-raiser less than a year after the previous one, and the possibility of making this an annual tradition does not appeal to me. 

I am still in a very healthy shape despite the underlying ever-present brain cancer, and am able to work and earn my living. I can work towards earning enough this year to not only pay my bills this year, but also replenish my retirement account with the amount I took out of it.

Given the expected timeline for a Glioblastoma patient, there could be a time very soon when my mental capacities decline and I would not be in a position to work to earn my living; that would be the right time for the next fund-raiser.

Besides, if I am to die in the next couple of years, right now can indeed be considered as my retirement stage, and it makes perfect sense that I use my retirement savings for my needs now. 😅


ಬೀಸೋ ದೊಣ್ಣೆ ತಪ್ಪಿಸಿಕೊಂಡರೆ ಸಾವಿರ ವರುಷ ಆಯಸ್ಸು

That can be roughly translated as: "If you escape the current threat, you will live for a thousand years."

I have escaped the current threat. Now on to the business of living for a thousand years. 😇

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...