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. 😆

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.

2 comments:

  1. Love you, Prakash. Thankful you had a kindred soul on that ride home. Hoping the conference with docs on Wednesday goes well.

    ReplyDelete
  2. Your blog gives positive vibes and info to other patients. Keep it up, you will succeed for sure.

    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...