Tuesday, July 24, 2018

Turning a 3-days hospital stay for Craniotomy into a picnic

I was at the Boulder Community Hospital in Boulder, CO from Thursday, July 19th to Saturday, July 21st for my second craniotomy after a Glioblastoma Tumor recurrence was discovered during a routine MRI scan on Tuesday, June 19th, 2018.

The surgery itself went on for a couple of hours from noon to 2:30 PM-ish, and I woke up from the sedated state around 4 PM-ish.

The only side-effect observed so far is that I have lost sensation on the whole of my right leg. This numbness - a very minor side effect - should go away on its own in a few days.

That is my new surgery scar. The stitches and staples will be off two weeks after surgery. With a lot of resting and sleeping till then, I will be as good as new physically and mentally. ๐Ÿ’ช๐Ÿ™

The surgery can indeed be considered a great success. Also, the whole experience through the surgery was so smooth that it was almost like we were at a three-day picnic in an exotic location and not going through a nightmarish medical procedure.

This was so because I worked hard to make it so, and I want to write in detail about how I went about turning a serious medical procedure into a picnic in this blog post with the hope that it will inspire others. Not everybody can do all the things I have done as everybody's circumstances are different. Nevertheless, I hope this will be helpful to a few fellow glioblastoma warriors.

Here are the main factors I think helped me in this effort:

1. The world es mi familia

When it comes to battling cancer, the entire World is indeed my family.

This is not an empty statement. This is the truth I have been living ever since it dawned on me during the time I was getting up and figuring out what had happened after my first craniotomy on November 14, 2016. 

As I struggled to come to terms with the seriousness and grimness of my situation just after going through a risky medical procedure, the sight of so many of my friends and family, and hospital nursing staff and doctors fussing over me was a balm to my eyes and spirit. It made me feel like I was not all alone in my fight. That I had a very supportive network that will protect me in this troubled times.

That the whole world is my family in my fight against cancer has been borne in on me many times since the first surgery. I started two fund-raisers since then and both times the response has been phenomenal. The response to the most recent fundraiser was especially important as it completely took off money worries from our plates and let us deal with just the surgery in its own right.

So my conclusion is that I considered the whole world to be my family in my fight with cancer and the world has proven it right by supporting me generously whenever I asked for help.

2. Accept that Craniotomies are part and parcel of a GBM patient's life

The second most important thing I did to prepare for a smooth time at the craniotomy is to accept that craniotomies are an expected part of my life as a Glioblastoma patient. That attitude allowed me to say "I choose to have this brain surgery" and not go into the procedure with "Why me? Why should I be forced to go through with this monstrous procedure? What did I do to deserve this punishment? etc."

That positive attitude played a big role in me waking up within a couple of hours after the surgery and bouncing back to full health very quickly after that.

In my 5-minute talk at Ignite Boulder about living with Glioblastoma, I have detailed a future for me where I have a few brain surgeries to survive the multiple tumor recurrences. This is a fact every Glioblastoma patient has to face and make peace with.

Here are a few glioblastoma patients with the number of brain surgeries they had:
  1. 18 years survivor Cheryl Broyles had 6 craniotomies since 2000 and is still kicking ass.
  2. 22 years survivor Ben Williams had no recurrence or repeat craniotomies ever! ๐Ÿ˜ฎ
  3. Chad Peacock of Brain Chancery blog that inspired my blog had 6 surgeries.
  4. Joe Biden's son Beau Biden had two or three surgeries.
Looking at the exceptional example of Ben Williams above, it does look like my assumption that recurrences and craniotomies are a normal part of a glioblastoma patient's life is flawed. Nevertheless, it has helped me so far to deal with the difficult journey with cancer.

3. The advanced state of neurosurgery

Having gone through two craniotomies so far and come out on the other side from them with almost no side effects, I must say I am very impressed with the current state of neurosurgery.

During my first surgery on November 14th, 2016, I did not get to meet the neurosurgeon - Dr. Sharad Rajpal - who performed the craniotomy on me. However, I could feel his presence. And the effect of his work. The more I learned about what I had gone through and all the risks that were inherent in the procedure, I was very impressed with the neurosurgeon and his work. Since it was an emergency surgery, looks like Dr. Rajpal got only a couple of hours notice before the surgery and yet performed what would qualify as a miracle in my eyes.

Knowing all this, I just made it up that Dr. Sharad Rajpal was a god who saved me this time.

That is Dr. Sharad Rajpal with me after the second craniotomy last week. This time I got to meet and talk with him, and confirm that he is indeed a regular human being. So I am downgrading him from God to Man-with-the-magic-hands. ๐Ÿ˜„

I hope I won't need any more craniotomies in the future. However, knowing that there are neurosurgeons of Dr. Sharad Rajpal's skills and talents to handle such a procedure and that the state of neurosurgery is amazingly advanced gives me confidence that I could take it in stride when it comes.

4. An unfortunate accident turns into a blessing in disguise

A few days after my tumor recurrence was discovered I ran into an unfortunate accident getting hit by a car. And breaking a couple of bones in the process.

I had to undergo a surgery to fix my left knee, and also had to postpone the date for my brain surgery to give myself time for recovering from the knee surgery. 

This turned out to be a blessing in disguise on multiple counts. 

Firstly it turned out to be a good trial run for the more serious surgery lined up in the future. 

Secondly, it gave me a taste of living as an invalid. Since I couldn't put too much weight on the left knee while it was being healed, I had to stay at home most of the time and had to move around on a wheelchair both inside the home as well as when we went outside. 

This turned out to be very important in the context of the potential risks from the brain surgery. The new recurred tumor was located in the left parietal lobe very close to the motor cortex controlling the motion of the entire right side of the body. Hence, there was a serious risk of me ending up completely paralyzed on the right side of the body or some other motion-related side effect from the surgery. 

By getting a taste of life as an invalid due to the knee surgery, I believe the fear of being an invalid was taken out of my mind and that helped in not manifesting that outcome from the brain surgery. 

I will take all the blessings even if they come with a lot of disguises. ๐Ÿ™๐Ÿ™

5. Embracing Social Support

In one of the earlier blog posts exploring the Nine Key Factors Critical for Surviving Terminal Cancer, I had identified Embracing Social Support as one of the key factors.

I have been very open about my journey with Glioblastoma from the very beginning. That has helped me lead as much of a normal life as possible with all the ongoing treatments and fears, etc. Also, it has provided a continuous flow of positive vibes from many people who keep telling me they are inspired by how I am dealing with my circumstances. This positive feedback further reinforces my resolve and determination to stay positive no matter what.

Another aspect of embracing social support was to ask for and receive all the help I wanted before, during, and after the surgery. My friends and people in the wider communities I am part of in the Boulder-Denver area responded very generously to all my requests making life easy for me. 

The day after the surgery - on Friday, July 20th - I reached out to my friends and colleagues at Dojo4 and asked them if they could visit me at the hospital. They not only visited but brought food from my favorite restaurant - Garbanzo Mediterranean Fresh - and made it a fun picnic lunch at the hospital.

That's me with the Dojo4 team before we got around to lunch. 

On the same day, Boulder's own famed Investor and Entrepreneur Brad Feld was visiting a friend of his in a neighboring ward and came by to say Hi.

I asked the universe for social support and the universe was serving up social support with a very generous nature. ๐Ÿ™๐Ÿ™

On the day we left from the hospital - Saturday, July 21st, my work buddy Elliot drove over from Denver and picked up food from my favorite South Indian restaurant in the Denver metropolitan area - Bawarchi Biriyanis Louisville

Also, Dona Laurita - whose eighteen-year-old daughter Jules is fighting glioblastoma - came by to meet with us after we had been talking about it for a long time. 

While we are all there my daughter had fun drawing a unicorn on the whiteboard. ๐Ÿ‘ถ๐Ÿ˜

Thanks to everyone who supported us during the two craniotomies and the interim period. Thanks to everyone who prayed for my wellbeing. Thanks to everyone for wishing me a speedy recovery. 

Thanks, everyone for helping turn a major life event into a fun romp in the park.

6. Luck (Post-script added on July 25th)

When I shared this blog post on the Glioblastoma Warriors and Brain Tumors Fighters public Facebook group a fellow warrior commented as follows:

My first 2 craniotomy were 48 hour stays. Third was 20 days due to surgery related stroke!

So, Yes. Luck is definitely a big factor in my smooth ride with the second brain surgery. 

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