Sunday, October 7, 2018

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

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

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

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

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

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


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

Ongoing Treatment Plan:

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

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

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

No more Electric Field Treatment with Optune:

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

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

Not keen on moving close to Duke for GBM treatments:

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

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

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


Yet to recover fully from the knee surgery:

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

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

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

No more marathons for me for a few more months:

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


Making progress on Strengthening My Spiritual Connection:

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

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

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

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

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

Meditation as the definitive cure for GBM:

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

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

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

Work-related stuff:

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

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

Ending Note

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

2 comments:

  1. Your story sounds much like mine. My dx/surgery was 12/2016. Though I have yet to start my blog, have not yet figured out how to get a gofundme going, but am staying busy raising my children, working on my health, and remain thankful for my many blessings. Thank you for sharing your story, maybe it will be the nudge I need to begin sharing mine.

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  2. Positive site, where did u come up with the information on this posting? I'm pleased I discovered it though, ill be checking back soon to find out what additional posts you include. psc result 2018

    ReplyDelete

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...