Diagnosis / Detection
Out of nowhere, my wife had brain seizures. I could see her becoming incoherent in her speech. She could not even hold the crockery at all. This made me sure that something was not alright. It was a stroke. In the MRI scan, my wife was diagnosed with brain cancer. The tumor has already spread across multiple areas of her brain.
Our life was going normal. At first, I thought it was a stroke, so I called the ambulance. The ambulance arrived in a couple of minutes, and they said it’s a stroke by wheeling her in the van.
Next thing we know, after few hours of MRI, that she has got a massive brain tumor. The tumor has already spread across multiple areas of her brain. Everything happened all of a sudden; there were no warning signs at all. This is how my wife’s brain cancer journey started. She was kept in the hospital for few days so that she could be stable. They ran some more tests on her. Eventually, we realized that this journey would be challenging and life-changing for both of us, as it was a life-changing diagnosis. Practically we were just buying her more time to live. The news was too much to digest.
In the 1st month, we approached several doctors and took second opinions. No matter who we were speaking to, they had different terminology, but the message was similar. The only difference during this process was that I talked to a physician in the US who has been doing many immunotherapy trials and said that conventional methods would be able to help somehow. Still, if you want to give yourself the best possible chance, you have to start thinking about precision medicines. I never heard the word “precision medicine” till then. He educated me about it very nicely. Like the biological meaning of the tumor and depending upon the makeup of the tumor, some targeted medicines could help. There are immunotherapy vaccines that can be targeted. It can stop the tumor from growing further. After listening to all this, I finally saw some hope and wanted to know how these things could open our new doors.
After having the conversation with the doctor, I realized that it is essential to understand the nature of the tumor or disease we are dealing with. The physician told me that the tumors are heterogeneous and no tumor is 100% alike. The next step was to decide the treatment options. I came across next-generation sequencing. It is done in foreign countries, but the biggest question was where we get it done in India. After the brain surgery, we finalized a place in the US. It took us a month to finalize which neurosurgeon we should go to as we were more concerned about the individual approach.
One of the things that I understood in the case of brain tumors is that it is better to remove most of the tumors in neurosurgery. After removing the tumor, there are better chances of long-term success. We spent a month speaking with different neurosurgeons. Every one of them had different approaches and strategies. We discussed the case, challenged them. Ultimately we opted for someone who was not most impressive with the tumor removal, but he was a very articulate surgeon.
The fact is unless and until someone doesn’t remove 60% -70% of the tumor, they don’t have enough survival chances. We were like, he’s going to remove 30% – 40% of the tumor, but he will be good in his reasons. We leaped faith there.
The one month of search for an equitable neurosurgeon bought us an advantage. We discussed with them, debated on several things, and challenged them. Due to this, we were able to discover some new things which were important in my wife’s case. We got to know about immunotherapy, other targeted drugs that come in different shapes and sizes. We learned that when the surgery is happening, we should get the fresh frozen tumor tissue stored. The neurosurgeons do not inform these things. They don’t bring this topic up. This is disappointing because this step cannot be performed after the surgery.
What they do is they take out the fresh tumor tissue and store it at minus 80 degrees Celcius or minus 70 degrees Celsius in liquid nitrogen. This particular process is supposed to be done specifically to activate the tumor cells. The importance of this process is that it is used in making immune vaccines. The one month gave us all the knowledge, and this is how we understood the steps of neurosurgery, the standard of care, followed by immunotherapy.
The diagnosis happened 3½ years ago. In the whole journey, we did one neurosurgery followed by a radiation cycle and 12 chemotherapy sessions. This was all finished by May 2018.
We did MRI scans every 3-4 months. MRI scans come in different shapes & sizes. This information is something that no one usually talks about. All brain cancer has two types of scans. One is Perfusion Scan, and the other is spectroscopy. These scans are essential for a brain cancer patient. So in every four months, we get perfusion done to see if the tumor is trying to spread into other blood vessels. The scan gets us one step ahead of the tumor.
There were side effects due to the treatment. We saw some neurological deficits, like depending on what functionality is affecting the brain tumor. But these deficits can be manageable. When radiation & chemotherapy occurred, loss of hair happened. My wife lost her confidence with the loss of her hair. During the entire journey, blood counts, platelet counts, and hemoglobin took a significant hit.
A brain tumor can create mental health issues for some people. Patients start thinking that their life will never be the same from this point, or will they be able to go back to their normal life, or will they be able to survive long enough. All these thoughts trigger the patients and put them under a lot of mental stress. Side effects can be both physical and mental.
Managing Professional Life Along
I am very fortunate, as my employer gave me a lot of flexible working hours. My company even connected me with one of the brain tumor excellence in the US, where our company’s founder & CEO has donated 100 million dollars. I was well taken care of. This help and cooperation made a vast difference in my life. They helped me in connecting various neurosurgeons, oncologists, and physicians.
The cancer journey takes a lot of energy as it tests every ounce of your reserve that you’ve in your system. One needs a lot of energy to deal with the devastating diagnosis news, essential decisions, emotional ups & downs, etc. As the journey takes a lot of energy, one needs to regain it from somewhere. For me, it was clear that I can regain my energy from work only. I did not remember how exactly I managed both, but I was able to manage everything.
Yes, we took the alternative treatment. In radiation and chemotherapy, what is very important to understand is how the treatment works. I have seen a lot of negative publicity out there regarding these treatments, which made me worried. These treatments work, but the real question arises whether is it curable or not.
During the journey, I came across medical cannabis. It is approved in the UK for certain types of brain tumor patients & has some survival benefits. I know a conventional surgeon or oncologist would not prefer this. But we saw an oncologist who works for one of the biggest government hospitals. When we discussed this alternative treatment, he was like; I can do this as I have done in most cases. According to him, medical cannabis should also be considered a standard one. He told us if we were ready to use this method of care, then it can be done privately with a proper prescription.
Nobody talked to us about the importance of pro-biotic. Our immune system starts from our gut. If we don’t take care of our gut correctly, it will eventually affect our immune system. Nobody talks about these minor things. In the last 3½ years, I have seen a lot of awareness and service programs. We took the advice of the alternative treatment & signed up for a 1-year service. In these services, they monitor our blood counts, platelets or tell us where it could be heading after that.
If a person cannot handle radiation and chemotherapy, their blood & WBC count starts falling. So one has to make sure that they are handling both the treatments well. Alternative therapies somehow make sure that you are taking everything well. It is best to have a trained physician by your side if you are pursuing alternative care methods.
Work together with good physicians, stay updated about the case, do some research, but one must realize that there will always be some grey areas where you have to use your wisdom and judgment.
Various changes happened throughout the journey. But the diet was the main change for my wife and me. After the diagnosis happened, we both started consuming 100% organic products. My wife tried to minimize the number of carbohydrates & almost no gluten or dairy products. Till now, we are following the same. Before the diagnosis, we used to go for outings, socializing a bit. But after cancer occurred, we learned the importance of rest and sleep during the journey. So we made a routine of going to bed by 10 PM. We still follow these lifestyle changes. In the beginning, we had some trouble accepting these changes, but now we are very much comfortable.
Contribution towards the community
I have gained a lot of experience in my wife’s cancer journey. Due to the occasion and my updated knowledge, I was able to help a lot of people who are going through the same journey. I tried to help people financially, as not everyone is as privileged as me. In my eyes, financial help is the least one can do for anyone. We can also help people in developing their treatment plans. I tried to help people by telling them how we reach different people, neurosurgeons, and how we decided the entire journey. I helped them by connecting them with a network of physicians.
I was helping others, sharing the correct information which added value to my life. It gave me positivity that I was able to help people. It became a self-fulfilling process. There is a WhatsApp group where I contribute a lot. People from different places also talk about their experiences in their journey. I constantly updated myself with the research, cases, knowledge that helped my wife’s case and others. Somehow this research helped me stay away from being clueless and confused. I was a part of this community, and everyone in the community tries to help each other.
This journey is full of obstacles. It wouldn’t be half as difficult if there weren’t obstacles. The 1st and the foremost impediment to us were getting the fresh frozen tumor tissue stored. We have to convince so many people of this. Finally, the hospital agreed to set it up. After three months, I wanted the frozen tumor tissue out and shifted to the private service for personalized treatment. The hospital refused to give us the stored tissues. They said it was against their rules. The hospital said we could not use our tissues for personalized medicines, but we can use them for research or store them. It took 3-4 months to convince them to give our tissues back.
Cancer treatment is costly; it takes lifelong savings of a person. One has to consult multiple doctors with different strategies. So for all of this, one has to invest their whole time reading about it, doing research instead of spending time with your kids or taking them out on a holiday or sports camp or meeting your customers if you are on business.
Secondly, these consultations don’t come cheap. Every time you are visiting or speaking to someone, it costs you a few hundred dollars. When you get all of the information, you sit down with it and realize how you will decide what equitable choice you can make to give the maximum result. There are many obstacles that one has to face. Then when you start traveling overseas for the treatment, who will take care of your kids. So these sorts of problems can occur commonly during the journey.
This entire journey is the game of tenacity, resourcefulness, and luck. One has to keep in mind that the harder you work, the luckier you get. It is best if caregivers or even patients have complete knowledge about their case rather than being clueless, confused, and utterly dependent upon their doctors. Do as much research you can, keep yourself updated & educated about your case. This will help in staying calm at the time of making decisions. Keep fighting and work harder.