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:
- Sign up for the Clinical Trial involving Avastin (Bevacizumab) available in Boulder.
- Start on Avastin (Bevacizumab) as a regular treatment drug.
- Start on a long-term chemotherapy treatment orally with Temodar (Temozolomide)
- 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:
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:
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.
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!"
