Tuesday, June 26, 2018

Getting serious about moving to Durham, NC for GBM treatments

Last week I got to know there is a recurrence in my GBM related brain tumor. Since then I have been exploring the possible options to deal with the situation and have concluded upon moving to Durham, North Carolina to be near Duke University for the wide array of cutting-edge treatment options available for treating Glioblastoma there as the best option.

While my medical team in Longmont, CO are capable enough to keep me going when things are normal, I don't think they provide access to the most recent in glioblastoma treatments. The only one clinical trial I am being offered in Longmont is the Study of DSP-7888 Dosing emulsion in combination with Bevacizumab. I am not too excited about this option as Bevacizumab (trade name - Avastin) is considered to be a last-resort option for GBM patients. 

Since my head is about to be cut open to deal with the tumor recurrence, I would rather it happen while being part of this innovative and highly successful treatment from Duke University where a genetically modified form of the poliovirus is infused directly into the brain tumor via a surgically inserted catheter. 

One of my GBM friends on facebook travels to Durham, NC from her home in Florida every 3-4 months for a 45-minute office visit. That is an example I would have liked to emulate. However, the insurance complications make it not an option for me. I am on an HMO plan through the Obamacare exchange in Colorado, and that makes the consultation at Duke an out of network expense. It would help if I can switch to a PPO plan, but there are none offered through the Obamacare exchange in Colorado. 

Hence taking the next available option - though at a high personal and financial cost - of moving to Durham, NC for getting treated at Duke University. 

Here is what my medical insurance agent recommends about moving to North Carolina:
Good Afternoon Mr. Murthy
If you are considering a move to North Carolina it will be something you have to really commit to. Do the research to get onto their ACA. So we know when we need to cancel your state coverage here. This will give you a special enrollment event to move onto their state coverage and they will have to cover your preexisting condition. Right now any options off the ACA will not cover cancer or will only cover a low dollar amount that would not be adequate to your needs.
This is the best advice I can give you if you are seriously considering relocating. 
So the main thing is I should continue to be under state coverage through the Obamacare exchange for the sake of pre-existing condition coverage. Moving to employer insurance will not likely have the same coverage. 

Hence the first thing I am working on is to figure out how I can transfer my medical coverage from Colorado Obamacare exchange to North Carolina Obamacare exchange. All other things can be handled when this important step falls in place. 

The other things to handle are as follows:
  • Finding freelance work/full-time job: There are quite a few good job opportunities for ruby on rails developers in the Research Triangle Park Area; so it should not be too difficult for me to get myself well-situated work-wise.
  • Building a network of friends: Couple of my college friends live in the area, thankfully. They will be our gateway for building a good community of friends in the area. Also, I am sure we will find it easy to build friendships in a community with a dozen Indian grocery shops and a dozen south Indian restaurants.
  • Daycare for Aisiri: Google maps throw up a lot of options for Daycares in the RTP area; so we should have no difficulty finding one that is convenient for us.
  • Apartment to stay: Same case as with Daycares & Indian Grocery shops, we will have a good set of options to choose from.
  • Cost of moving: Will probably cost around $10K to do a full-service move of a full 2-bed apartment with a car across the country; this will be one of the items towards which I will need to raise money through a GoFundMe campaign with financial help from friends and well-wishers.
  • My wife's medical professional exams: My wife will continue with her efforts at completing the US Medical Licensing Exams from Durham, NC and take up her Residency next wherever she gets it, and that would probably involve another move across states for us. 

That is all I can think of now. Next step: Setting up a GoFundMe account to raise money to help me with the immediate future.

Sunday, June 24, 2018

A Moment's bad judgment leads to serious consequences

Yesterday, on Saturday, June 23,2018, I started from my home at around 5am with the intention of running the 11 miles round-trip route from my place to McIntosh lake and back. I did not get too far in that journey as I got hit by a car within 5 minutes.
Just as I exited Willow Farm Park and was crossing 89th street and getting to Creg road, a car was coming towards me very slowly. Seeing as it was coming slowly, I assumed the driver had seen me and would either stop or turn. That did not happen. The Car hit me very forcefully and made he hit my head and legs very hard on the pavement. The driver offered to call 911 and get me to the hospital. I refused the offer as I did not want to take a very expensive ride to the hospital in an ambulance. Also, I was thinking my injuries were not very serious and that some first-aid is all I needed. The driver accompanied me to my home. My wife - a medical professional (gynecologist in India examined my injuries and concluded I was in need of professional care. So she drove me to the emergency room and into the care of capable folks. A CT Scan and X-rays confirmed there was no intra-cranial bleeding. And that there were two broken bones in my legs. Additionally, there were two serious injuries at the back of my head and over my left eyebrow requiring a few staples and stitches.
The stitches will be removed in 5-6 days. It will take 5-6 weeks for the broken bones to heal. So, I will be an invalid for the next 4-5 weeks at least.

Since my legs are broken it is advisable that I don't walk around and put weight on the broken bones.

thankfully, some good friends who live in the ground floor of a neighboring apartment have made it easy for me by accommodating us at their apartment and preventing the need for me to climb up and down two sets of stairs to our 3rd-floor apartment.

One silver-lining from this unfortunate incident is that this experience of being an invalid is a good rehearsal run for the series of brain surgeries coming up in the near future to deal with the glioblastoma recurrence.

Wednesday, June 20, 2018

The monster rears its ugly head

Yesterday, I had my regular MRI. Today, the doctor's office made an unusual & unexpected call to inform me that there is a recurrence!

Understandably, both my wife and I are devastated by this bit of bad news even though as I mention in the Ignite Boulder talk, a recurrence is highly expected for a Glioblastoma patient. As of now, we know that the new lesion is about 2.5 cm wide/long/deep and is in the left parietal lobe. The original tumor was in the right temporal lobe.

We will know more about what the next steps are and what we can expect in the upcoming days/weeks/months when we meet with our Oncologist next Thursday.

For now, we will keep our hopes up and try to be positive.

And I am Stayin' Alive! 

Tuesday, June 19, 2018

Getting serious about training for the fall/winter marathons

It has been almost a month since I ran the full marathon at Colfax Marathon 2018. Ever since then I have not been actively training, and have been lacking the usual motivation to run on a regular basis.

Come on, Dude! We don't want you slacking off now. This is more than about running marathons. A lot depends on me continuing to train for and run marathons.

This is a fight for my life. 

Being fit enough to run marathons will help me better handle another brain surgery - which is likely due soon as I am 19 months past the initial craniotomy and in a fertile period for a tumor recurrence. Also, committing to run marathons later will help me rebound quickly from a surgery.

So can we get serious about training for the 6 marathons I have lined up in the fall/winter?

After running 3 marathons in Spring, I have lined up 6 marathons in fall/winter. From being someone who had completely sworn off running marathons, I have successfully transformed myself into someone with multiple seasons of marathoning per year. 😆

It is 13 weeks to Cheyenne Marathon and 15 weeks to Chicago Marathon - my next two marathons.

Here are the main aspects of my training plan for these upcoming marathons:
  • Main Goal: Accomplish a Negative Split: This is the main goal because I have not been mentally and physically ready to run the full marathon at each of the marathons I have run so far. Even at the Colfax marathon, the most recent of my marathons, my thinking was along the lines of "I should finish the first half. If I do so, I can then somehow make it to the end." Taking on the goal of accomplishing a negative split will make me stretch the scope of my thinking and preparation to the full distance of the marathon. The splits for the 3 marathons so far are as follows:
    • Los Angeles Marathon on Mar 18: Finish time of 5h07m35s split in two as 2h33m33s and 2h34m02s. Almost an even split between the two halves!
    • Eisenhower Marathon on Apr 7: Finish time of 4h55m51s split in two as 2h12m40s and 2h43m11s. A highly uneven split; a very fast first half, and a slower by half an hour second half. 
    • Colfax Marathon on May 20: Finish time of 5h07m11s split in two as 2h25m48s and 2h41m23s. The second half is around 16 minutes slower than the first half. Not as bad a split as at the Eisenhower Marathon
  • Every training run is an opportunity to accomplish a negative split: Yes. I will accomplish a negative split at the upcoming marathons by making it a habit everytime I am out running. In the few training runs over the past few days, I have been able to put in extra effort in the second half of the run to finish strongly and get a negative split. Example: Yesterday's 6.1-mile effort with a finish time of 1h07m10s had a split of 34m37s and 32m33s. This emphasis on a negative split is helping me train better with tired muscles and also become faster by incorporating some sprinting in the later half of the runs. 👍
  • A lot of easy miles, and a minimum of 20 to 30 miles per week: As I have documented elsewhere, the good performances in the spring marathons were built on a solid foundation of minimum 30 miles run every week for 10 weeks leading up to the Los Angeles Marathon. I will continue with that habit with just a little relaxation of the weekly minimum to 20 miles instead of the original 30 miles. A significant portion of this running mileage - around 90 percent - will be at an easy conversational pace. A small part of it will be for sprinting, tempo runs, and other variety I can add to make the training runs less boring. 
  • A long run every weekend: In the 13 Saturdays/Sundays remaining till Cheyenne Marathon, I tentatively plan to run the following distances: 
    1. June 23-24: 8-mile
    2. June 30-July 1: 8-mile
    3. July 7-8: 9-mile
    4. July 14-15: 9-mile
    5. July 21-22: 10-mile
    6. July 28-29: 10-mile
    7. August 4-5: 11-mile
    8. August 11-12: 13-mile
    9. August 18-19: 15-mile
    10. August 25-26: 18-mile
    11. September 1-2: 20-mile
    12. September 8-9: 12-mile 
    13. September 15-16: 8-mile
    14. September 23: Cheyenne Marathon!
  • One-way long-runs: Due to my dual restrictions of 1. Not being allowed to drive since I had my first seizure in January 2018, and 2. The need to minimize the time I am without Optune, I have been making all my runs start and end at my home. That has worked well so far as the three successful marathons show. Only down-side has been that I haven't been able to train at high-altitude and with significant altitude gain. That was one of the main reasons for me to drop out of the Mt. Evans Ascent I had signed up for. For this upcoming training cycle, I plan to make some of the runs one-way running towards the foothills, thereby gaining significant altitude through the run. One route I have identified for that purpose is to run from my home to Greenbriar Inn on Route 36 and Nelson road - a distance of around 11 miles with an altitude gain of 636ft! I guess I can have someone pick me up at Greenbriar Inn and drop me back home.
  • Strength training two times every week: I have discovered a very good strength training plan for runners with the book Quick Strength for Runners: 8 Weeks to a Better Runner's Body. The workouts detailed in this book are perfect for me as they can be performed even with Optune on. I plan to stick to this easy-to-follow strength training plan and improve my strength by steadily making the exercises more difficult (by adding repeats or by taking on the more difficult versions of the exercises).
  • Faster finish time is not important: Sometime ago I was entertaining the possibility of finishing one of the fall marathons in 4h30m. I don't think that is realistic. In fact, I would rather not focus on the finish times and just focus on finishing the marathon. Trying to run a faster marathon - as I have learned from experience over the past 10 years - is a surefire recipe to get demotivated and totally give up on running marathons. My goal is to keep running marathons for a long time. Not finish one marathon in a quick time and give up running forever. I hope to become a faster runner and turn myself from a 5-hour marathoner to a 3-hour marathoner and qualify for Boston Marathon over a few years. And I hope to document that journey in an upcoming memoir - How I turned myself from a 5-hour marathoner to a 3-hour marathoner and qualified for Boston Marathon as a middle-aged man. With that goal in mind, there is no speed goal for the upcoming marathons - the goal as I stated at the beginning is TO FINISH STRONG AND ACCOMPLISH A NEGATIVE SPLIT.

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...