To this day, I don’t know how I managed to keep working despite the frequent daily trips to the bathroom and the abdominal pain since November 2022. However, back then, standard anti-diarrhoea medication still had an effect.
I even flew to the Philippines in November to moderate a blockchain gaming panel at the Philippine Web3 Festival. Then, in December, I went to Bangkok to help organise, host and cover the first Polygon Guild Bangkok Meetup.
Honestly, I didn’t even mind or show anyone any signs of the pain I was feeling. It would be different, of course, when I got back to my hotel.
But I’m a long-time believer in the power of technology for good and have fully embraced Web3 as the future. I was too excited to attend my first on-ground events since the pandemic and meet up with all the wonderful people in Web3 – many of them for the first time in real life – to let pain stop me.
I think that’s what helps us keep going even when times are really tough. Faith in something bigger than we are. The desire to help others instead of just focusing on our own problems. The sense of responsibility I feel, as someone privileged to belong to the digital haves, to help the digital have-nots and bridge the digital gap.
Crypto Winter taught us to become resilient. It weeded out those who truly saw Web3 as a revolutionary force and focused on creating long-term value from those who were only motivated by greed and wanted cash grabs.
Now that Crypto Winter is thankfully over, the Web3 individuals and organisations that have kept the faith emerged stronger in 2024.
Others ran away. They kept building.
Learn to let go and don’t be afraid to ask for help
Still, resilience doesn’t mean ignoring our limitations. As with cancer, you can’t be a control freak in Web3. You need to be fully aware of your strengths and weaknesses. You can’t be a lone wolf, but you should be willing to collaborate with others and accept help when needed.
It’s been a bitter pill for me to swallow, but I can’t do a lot of things for myself anymore. Physically, I have lost almost 30 kg, the lightest I have ever been since college or during my early days as an employee. Sure, when I was obese, I wanted to one day reach my ideal weight, but cancer definitely wasn’t what I had in mind.
Also Read: What living with the Big C has taught me about Web3 (Part 1)
For someone who enjoys taking long walks and travelling inside and outside the country, I’m now mostly confined to our house. I’m immunocompromised, so I have to wear a mask again outside, avoid crowds, and visit malls only during weekdays and near opening hours, if at all.
Mostly, I just leave the house to go to the hospital, enjoy the condo facilities, and sometimes accompany my wife to the grocery store since a small community mall is directly connected to our building. Even then, I have to watch out because I randomly get tired and dizzy, particularly a week or so after a chemo cycle.
I now need to use a cane when I’m inside the house and a wheelchair when I go out. It took my wife a long time to convince me because it made me feel so helpless. But I learned to accept that it was for my own good because it would be worse if I suddenly collapsed while walking outside.
In March, I was confined twice for a total of two weeks. First, due to an infection that caused me to be admitted during the first two days of critical care because my blood pressure plunged to 60/40, I was suffering from a fever, and the doctor wanted to guard against sepsis.
Then the most recent one because my blood count kept dropping even after the infection was cured. A new blood culture revealed that my bone marrow was dysplastic, meaning new blood cells were dying before they could reach maturity and be released into my bloodstream. Thankfully, no presence of lymphoma has been detected in my bone marrow. Instead, it seems my immune system is attacking my bone marrow, so my doctor started me on a new regimen to treat this.
Also, no matter how much food I try to eat, my body is not absorbing nutrients properly. So during my confinement and for the first two weeks after I was discharged, I received parenteral nutrition, receiving nutrients intravenously.
My chemo infusions increasingly became more aggressive as the treatment was tweaked based on my response and progress. The first three cycles were already more aggressive than the usual CHOP chemo treatment. Instead, we opted for CHOEP, which stands for cyclophosphamide, doxorubicin (hydroxydaunorubicin), vincristine (for its brand name Oncovin), etoposide, and prednisone/prednisolone. This required a two-day infusion because of the additional drug etoposide.
After the third cycle, my doctor ordered another scope and biopsy. He then recommended switching to an even more aggressive chemotreatment because we hadn’t made as much progress as we initially expected. So, the next three chemo cycles, which were supposed to be the last three, made use of dose-adjusted EPOCH. The same combination of drugs, but now infused for five days for 24 hours.
Dose-adjusted EPOCH truly was aggressive. During and after every cycle, my immune system would suffer greatly. My blood counts would drop drastically, even though since the start of the first chemo cycle, I was being injected with a booster that would stimulate the production of white blood cells. Even so, sometimes, I needed to be confined because of a fever caused by an infection, despite taking every precaution.
Prepare a game plan but don’t get too attached to it
The original plan was for me to undergo six chemo cycles, followed by an autologous stem cell transplant after MEITL was wiped out. My healthy stem cells would be harvested after my bone marrow healed. Then stored and reinserted into my body to replace the stem cells that were destroyed by chemo. Again, this medical procedure (which is rather expensive, by the way, because it’s not exactly a routine operation) doesn’t guarantee survival. But it does give me better odds.
As the popular adage usually attributed to Prussian General Carl von Clausewitz reminds us, but, according to Quote Investigator, it was actually first written in an 1871 essay by Prussian Field Marshal Helmuth von Moltke the Elder in this form: “No plan of operations extends with any certainty beyond the first encounter with the main enemy forces.”
Or, better yet, as Mike Tyson eloquently put it, “Everybody has plans until they get hit for the first time.”
Also Read: To leverage Web3 technologies, Web2 companies may start by building the right culture
MEITL was still around after the sixth chemo cycle, as the biopsy and PET (positron emission tomography) scan showed. So, the original plan was off the table. My doctor asked if I wanted to take a calculated risk. We could do two additional chemo cycles but use a different drug that would be more targeted. He said it would be pointless to keep trying the same combination of drugs that have already failed.
He proposed the chemo drug cladribine. It’s not an experimental drug, but it would take some time to be processed for delivery because it’s not a common drug stocked in the hospital. Plus, this would be an off-label use since normally it’s used to treat hairy cell leukaemia and B cell chronic lymphocytic leukaemia. Still, the pros were that normally, it would have less of an impact on the immune system than my previous chemo drugs and could be infused for seven days for 24 hours. Bonus: it doesn’t cause any hair loss. So, after my wife and I discussed the pros and cons, I decided to go for it. After all, my sixth chemo cycle had already ended on November 15th, and MEITL is an aggressive lymphoma.
Since it would take time to get the permits and have the drug delivered, I was able to spend a holiday at home with my family for the first time in 2023. For some reason, my chemo cycles and emergency confinements always coincided with a holiday. The doctor said I could rest in December after I told him that my daughter and I have birthdays that are close to Christmas. He estimated that the new drug would arrive in time for a seventh cycle that would see me spending New Year’s Eve in the hospital. I was more than fine with that.
That was my December miracle. My wife and I were so optimistic. MEITL was still there beneath the surface, but the many tiny ulcers on my colon that were the outward manifestation had been wiped out. The PET scan showed that only a small area was lighting up, so surgery might now be an option after the eighth cycle if MEITL remained localised. I felt stronger than I had ever been since the start of chemotreatment. I was even able to go to the mall occasionally and didn’t even need a cane or wheelchair.
Originally, my wife and I had been convinced that six chemo cycles would be enough to get rid of MEITL. We truly believed that. Now we were sure that the two extra cycles would finish the job.
But as in Web3 and in most things in life, things don’t always go according to plan. Even if you did all the right things, checked all the required boxes, followed all the best practices. My body didn’t react as expected. The arrival of the drug had been unexpectedly delayed, but I finally began my seventh chemo cycle on Jan. 15th. This seventh chemo cycle was fine. While I felt more weak and tired than I was after my first six cycles, my immune system and blood count numbers were more stable.
But the eighth and last cycle really threw me for a loop. Even before the seventh day on Feb. 21st, my blood test was showing that my numbers were plummeting. I had to receive blood transfusions for the first time in my life.
Post-cladribine me is shockingly different inside and out. The normal range for white blood cell count ranges between 4,000 and 11,000 cells per microliter. When it falls below 1,500, this is considered neutropenia, which can range from mild (1,000-1,500), moderate (500-1,000), to severe (less than 500). Mine dropped to 40-50 during confinement and the succeeding thrice-a-week doctor appointments to take blood tests, boosters, and blood transfusions.
It has already been two months of constant treatment post-chemo, but as of this writing my white blood cell count is just 1,600. Worse, my latest biopsy confirmed what my wife and I already knew in our hearts. My MEITL was still around. Not only that, but also three large ulcers have taken the place of the tiny ones that were wiped out, and now surgery is no longer a viable option.
My haematologist has also candidly told me that my body can no longer tolerate any additional chemo infusions.
For now, the focus is on addressing the immune system attack on my bone marrow and managing my symptoms to improve my quality of life. I’ve actually had a healthier appetite and eaten a lot more in the past two weeks, which is why they took me off the twice-a-week visits to the daycare for my parenteral nutrition. Instead, every Saturday is now daycare day for my regular blood test and, if necessary, a blood transfusion.
Honestly, the only viable medical treatment left is oral chemodrugs. Of course, taking them would carry its own risks. At any rate, even if we do consider it, it’s off the table until my bone marrow heals further and my blood cell counts improve a lot more.
My doctor, wife and I perfectly understand that this won’t be anytime soon.
The last resort would be clinical trials for new drugs. I haven’t checked it out yet, but in the US, a Phase 1 human trial for a new drug is looking for test subjects for different types of cancer, including MEITL.
Of course, we know what clinical trials entail. Assuming I qualify, I’m agreeing to be a guinea pig who could die even sooner than I might have.
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Part two of a three-part series, continuation to follow next week.
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The post What living with the Big C has taught me about Web3 (Part 2) appeared first on e27.