Bad News comes our way ...

I had my most recent follow up Brain MRI scan on Wednesday May 29, 2019. This the regular check while I am on the post surgery treatments after the brain surgery (my third one) on January 9, 2019. 

With no observable symptoms so far, I had reasons to be very optimistic that this MRI will be another of those routine procedures I go through on regular basis. Hence I was in a very jovial mood when I headed to the Foothills Hospital for the MRI last Wednesday. 

Over the next few days I started seeing signs that this wasn't the normal flow of events. On Tuesday, June 4th I observed the first symptoms attributable to Tumor growth. All of a sudden, I started feeling dizzy and un-coordinated. Luckily this happened while I was at home in the evening and not when I had traveled to Boulder in the afternoon.

We got the confirmation about the bad news next day at our follow up appointment with my NeuroOncologist Dr. Mark Barnett.  Dr. Barnett confirmed that the news from the MRI was bad indeed and that the tumor is back with a vengeance. 

Here is the summary of the MRI Lab technicians report about my most recent scan:

Impression:

1.  Interval progression of glioblastoma multiforme since March 29, 2019.
2. Left parietal enhancing neoplasm appears significantly larger especially along the anterior component with increased extent crossing the corpus collasum into the right parietal lobe.
3. Right Temporal lobe subcentimeter nodular enhancing foci again noted in the post surgical region.
4. 2 new nodular enhancing foci in the right basal ganglia.
5. No Midline shift, herniation or acute infarct. 

It does seem scary and it did indeed scare the willies out of me. It seems like my end date got a good bit closer and clearer with this newer developments. 

Dr. Barnett is exploring the possibility of getting me onto a Clinical Trial at CU Anschutz Medical Campus in Denver. If that does not come about, the fall back as of now is to start treatments with Avastin (bevacizumab).

Hoping and praying for the best while keeping a positive outlook and being as optimistic as possible. 

Continuing with Physical Therapy and Chemo Therapy

This bench at a neighborhood park will be my best friend over the next few weeks/months. 😆

I discovered a few days ago that it is impossible for me to step on to this bench with my left feet on the bench. No problem whatsoever with stepping up onto the bench with my right foot. 

The difference between the two legs is that 

(a) I got hit by a car last June that resulted in a broken left knee. And that led to 

(b) a surgery on the left knee to insert a metal plate in the knee to compensate for the broken tibial plateau.  

The injured left leg is still very weak 10 months after the surgery. While trying to step up onto the bench with my left leg, my body refuses to transfer the full weight from the right leg on the ground to the left leg on the bench. I was able to identify this deficit and understand what was happening thanks to the weekly Physical Therapy sessions I am undergoing over the last few weeks. 

Even though I was advised to start on physical therapy immediately after the knee surgery, I had ignored it for some reason or the other. Trying to run again early this year and failing miserably at that effort made it clear that I need to get help from qualified professionals. 

I will have to strengthen the muscles in my lower leg and around the knee to be able to run again soon. Lot of Leg Presses and Lunges and Squats in my near future in an attempt to strengthen my lower leg and knee. 💪

Last week I took the second dose of Lomustine (3 tablets totaling 180mg for chemotherapy) after the first dose taken six weeks ago. The weekly bloodwork came back normal during each of the six weekly hospital visits. Hope the same trend continues through the following cycles of chemotherapy. 

I have a follow up MRI scheduled for next Wednesday May 29th that would let us know how all of the treatment since my third craniotomy in January 2019 - Radiation Therapy, Optune, Chemotherapy - are impacting the surgery bed area in the brain. 

Praying and hoping for a clean bill of health next week. 

Started Optune, Chemotherapy, and Physical Therapy

We had many visits to various medical offices over the past few weeks. More than the usual fare. That is normal life for a Glioblastoma patient who also happened to break his left knee last June. 😅

Since my third brain surgery on January 9th, 2019, I completed my second round of Radiation Therapy on March 1st, 2019.

It does look like my body has been able to tolerate the new round of radiation therapy very well. Only complaints so far seems to be short spells of fatigue once in a while, and a couple of no-hair-here bald spots on the top of my head.

Second round with Optune:

I am a strong believer of the benefits of Optune for Glioblastoma patients, as evidenced by my earlier statement: I like being alive. So I will wear Optune always forever. I was using Optune for over 90% of the day everyday for nearly 16 months from March 2017 to June 2018. 

In June 2018, I had my first recurrence. At that time, my confidence in Optune was severely shaken, and I decided to stop using Optune. 

Very recently I changed my mind about Optune and decided to give it another shot. The original tumor site has been very stable. The recurrence was in a totally different part of the brain. This makes me believe that my aggressive usage of Optune did help. And it could still help keep the tumor at bay for a few more months/years. 

Started this round with Optune a week ago, and have been able to seamlessly incorporate it into my daily life very quickly.

Chemotherapy with Lomustine:

The chemotherapy treatments this time also has been totally different from the daily Temozolomide tablets I used to take during my previous rounds. 

This time I take 180mg of Lomustine tablets orally once every six weeks. Lomustine is said to be a slow-acting drug, and could cause blood-counts to drop rapidly towards the end of the six-week-cycle. My Oncologist has arranged for me to visit the office for blood-work every week while I am on this treatment - to keep an eye on my blood-counts. 

I also got a Pulmonary Function Test done before starting on Chemotherapy.

The first dose I took early this week seemed to make me mildly nauseous the next day. 

Physical Therapy:

My attempt at starting to run again failed miserably with a very stiff right-foot. That made me finally pay heed to the advice my Orthopedic Surgeon has been giving about starting Physical Therapy. 😆

Turns out my totally inactive life-style since the knee injury last June has made me stiff in many parts of my body. Regular stretching exercises and some good habits around fitness and stretching should get me back on the road very soon. 

It does look very realistic that I will be able to train for and complete the 26.2 miles distance at the Chicago Marathon on October 13th this year. 💪🏽🙏🏽‬ 

It will be a while longer before I run another marathon

I had hoped that I will be able to get back to running and complete the 26.2 miles distance at the Chicago Marathon this year on October 13th. Even though it is 6.5 months away, my performance during yesterday's one mile walk/run near my home gave me enough proof to conclude that it is very unrealistic for me to aim to run a marathon this year. 

I have been off running since I got hit by a car back in June last year. I had a surgery on my left knee in July last year and got a metal plate embedded to compensate for the broken tibial plateau. Since then I have had 2 brain surgeries as well - my second craniotomy in July 2018, and my third craniotomy in January 2019.  

After being mostly inactive physically since June 2018, I started back on regular working out - mainly slow walking for 2-4 miles - early this month.

Yesterday, I tried running for the first time after 8 months. It was not an enjoyable experience. I couldn't keep up the striding action for more than 2-3 steps at a time. To my utter surprise even my right leg was being uncooperative during my short attempts at running. 😒 

It might be that my body has totally forgotten the various movements of the muscles and bones, etc. to carry on moving at a pace faster than a walking pace.

I will have to meet my Orthopedic Surgeon for a followup appointment soon and also figure out the necessity for & the specifics of a Physical Therapy program to get me back to a running shape in the next year or two.

Motivation to run is not at all a problem. I am convinced that being physically fit is of paramount importance in my ongoing adventure with Glioblastoma. Here's hoping that I will succeed in overcoming the physical limitations and get back to running marathons in a couple of years.

My Second Round of Radiation Therapy Treatments

I completed my second round of radiation therapy treatments yesterday (Friday, March 1, 2019). Thankfully I came through the treatment cycle without suffering any major side-effects or mental/physical deficits. 🙏🏽🙏🏽

This round of treatments had significant differences with my first round of Radiation Therapy Treatments back in 2016-2017. A few of the differences are as follows:

• The first round of treatments was over a period of six weeks from December 20, 2016, to January 31, 2017. The second round was over two weeks between February 18, 2018, to March 1, 2018.
  
  
  
  
  
• The first round consisted of a total of 30 treatments. The second round had just 6 treatments.
• The first round was with Conventional Radiation Therapy. The second round was with Cyberknife Technology.
  
• Each of the treatments in the first round took about 10 minutes each. Whereas each of the treatments in the second round took about 45 minutes each.

Complications, Complications,...

My second craniotomy in July 2018 and the third craniotomy in January 2019 were both in the same area of the brain and far from the site of the first tumor and first craniotomy in November of 2016. 

After my second craniotomy, I was put on a maintenance chemo treatment. The tumor came back in less than six months confirming the fact that the maintenance treatment wasn't really helping. We got a second opinion from the Glioblastoma specialists at MD Anderson Cancer Center in Houston. They recommended that we treat the recurrence like a new tumor since it is in a new part of the brain, and hit it with all the available Standard-of-Care treatment options. Makes Sense.

So our Oncologist agreed to follow that advice and prescribed that we go through the standard treatment cycle of concomitant Chemotherapy while on conventional radiation therapy.

When we met with our Radiation Oncologist, it turned out going through a second round of SOC treatment after a recurrence is not as straightforward as we expected it to be. They took a couple of weeks to come up with a treatment plan and came back with a short cycle of treatments with a higher dosage of intense radiation.

In this phase of constantly changing plans, we ended up incurring a loss of over $2,000 because of the chemo tablets that our doctor prescribed (with a co-pay amount of over $2,000) were not going to be used with the new treatment plan. The co-pay amount is huge as it is still the beginning of the year and we haven't met the out-of-pocket maximum amount of our insurance.

We received the chemo tablets and were told to not use them after a day. 😆The pharmacy doesn't take back the tablets, So as of now we have enough chemo tablets for one round of treatment and might even use them should the doctor prescribe them in the future.

The current plan is for me to get Lomustine (chemo drug) administered intravenously starting in a few weeks. Definitely no more oral chemo tablets this cycle.

Advice for newly diagnosed:

Here are the lessons we learned from the experiences over the last six to eight months over two craniotomies:

• Treat recurrences in a new area of the brain as a new tumor and start on the SOC treatment immediately after the surgery.
• Ask for the best available options for Radiation Therapy Treatment from the outset. A treatment option that minimizes the area it affects allows for the patient to go with multiple rounds of radiation therapy treatments over a lifetime. This is very important as Glioblastoma tumors keep coming back. 😟Proton-Beam/Photon-Beam Radiation Therapy and Cyberknife are better than (and more expensive than) the conventional radiation therapy treatments.

My Third Brain Surgery - Wednesday, January 9, 2019

The New Year of 2019 started off for us with my Third Brain Surgery on Wednesday, January 9, 2019.

Here's the complete history of my journey with Glioblastoma Multiforme so far:

1. Initial diagnosis and First Brain Surgery on Monday, November 14, 2016.
2. Second Brain Surgery on Thursday, July 19, 2018.
3. Third Brain Surgery on Wednesday, January 9, 2019.

Yes. I am a veteran Glioblastoma Patient, a Survivor, and a Thriver! 

The third brush with an invasive surgical procedure went very smoothly for us. Our experiences and learnings through the three surgeries have helped us take out all of the unproductive hand-wringings, fears, and mental games leading up to the surgery, and deal with the situation just as it unfolds in front of us. Powerfully. With Choice.

We got to know of the need for surgery on Wednesday, November 28th, 2018 at our follow-up appointment with NeuroOncologist. The 2.5 cm tumor at that time grew to around 5cm by Late-December/Early-January. That necessitated a third brain surgery and, it was promptly scheduled for Wednesday, January 9th, 2019.

Everything went smoothly with the third craniotomy, and I was back home after two nights resting and recovering at the hospital. Very glad we have taken the dread and horror out of this and can treat it as a simple medical procedure - almost of the off-the-counter-nature. 😆

When I was recovering at the hospital on Thursday the day after the surgery, the attending nurse sprang a pleasant surprise on me by bringing up the topic of Genetically Engineered Bunnies. That is a reference to my previous blog-post - http://www.braincancerchronicle.com/2018/12/genetically-engineered-bunny-with-sleek.html

That was funny. And interesting that folks working on my care have read my blog.

One Key Lesson from my experiences so far for fellow GBM patients:

When there is a new recurrence in a different area from the original site, it is best to treat it as another primary tumor and go through with the full SOC treatment cycle to better the odds.

We missed out on the aggressive option after my second surgery and went with a maintenance treatment plan which proved to be totally useless. Now that we are back at the end of a full-resection, our plan is to start on the Standard of Care Treatments - Chemotherapy, Radiation Therapy, and Optune over the next few months to throw every available solution at the monstrous disease that Glioblastoma is.

This morning I was at able to attend the Sunday Morning Meditation and Reading Services at The Boulder County Meditation Circle, and participate in all of the activities with near-full energy. I think it is safe to say I am through with the lows of surgery and back to full health, ready to take on life!

An interesting occurrence during this period that amused me no-end is the total-disinterest my five-year-old daughter displayed all through the three days of my hospital stay. Steadfastly refusing to visit me at the hospital and keeping herself busy making plans for when her cousin visits her in the next few weeks, she made it really easy for us to go through a potential troubling time. 👶

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. 🤣🤣

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.

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. 

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!  🤣

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!

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.

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! 🙏🙏

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 https://members.yogananda-srf.org/CenterSearch/SearchMap.aspx

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:

• Harvard study stating Eight weeks of meditating half-an-hour a day makes measurable changes in the brain: https://news.harvard.edu/gazette/story/2011/01/eight-weeks-to-a-better-brain/
• Radical Remission: Surviving Cancer Against All Odds book providing a case study of a GBM patient healing himself completely of cancer through meditating up to six hours a day over 2-4 years, with guidance from a Brazilian Spiritual Healer.
• Meditation As Medicine book which gives numerous examples of using meditation techniques to heal different ailments.
• Ian Gawler's autobiographical book You Can Conquer Cancer which talks about how he beat terminal cancer through intense meditation.

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!"