Saturday, March 2, 2019

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. ๐Ÿ™๐Ÿฝ๐Ÿ™๐Ÿฝ


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. ๐Ÿ˜†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. ๐Ÿ˜ŸProton-Beam/Photon-Beam Radiation Therapy and Cyberknife are better than (and more expensive than) the conventional radiation therapy treatments.

Sunday, January 13, 2019

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. ๐Ÿ˜†

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. ๐Ÿ‘ถ

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?"๐Ÿค”


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. ๐Ÿ˜† 

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. ๐Ÿคฃ๐Ÿคฃ


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. ๐Ÿ˜†

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. ๐Ÿ˜ก

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. ๐Ÿคฎ๐Ÿคฎ๐Ÿคฎ

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. ๐Ÿ™๐Ÿ™

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. ๐Ÿ’ช

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.๐Ÿ˜€ 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. ๐Ÿ‘Œ

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. ๐Ÿ‘๐Ÿ™

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. ๐Ÿ˜ฆ

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." ๐Ÿ˜ท

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!  ๐Ÿคฃ

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. ๐Ÿ˜ฎ๐Ÿ’ช

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?" ๐Ÿ˜ฎ

I responded promptly that the appointment works for us and went about making travel arrangements as soon as possible. ๐Ÿ˜

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!

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...