On my Caring Bridge site, my wife captured our journey into the world of cancer and allowed many of our friends and relatives to travel by our side and make the journey a lot less lonely and perhaps even less scary.
In brief, the situation is: After many months of misdiagnosis, I was finally diagnosed with colon cancer on Sept 18, 2008. Within a week, I went into surgery. A tumor the size of a coke can was removed, metastases discovered in the lymph nodes and liver, and I was staged at IV. On November 6, I started FOLFOX. After two rounds, Avastin was added to the regimen. After four rounds of chemo, the scan on December 23 showed no metastases. However, given the rarity of remission in two months, the oncologist ordered me on another cycle of chemo. In March, after another four rounds, the scans reconfirmed that the liver and lymph were clear and I was declared to be in remission. However, we continued with yet another cycle of chemo. In June of 2009, scans and a laparoscopy and an inter-operational ultrasound confirmed that there were no metastases, and I continue to be in remission. As of today, January 1, 2010: ten months of remission.
Obviously, I cannot explain why the disease took this path in my case –especially since there are others who have been a similar situation, done most of what I have done to battle cancer, but have had less favorable outcomes. There are those who have seen this and are convinced it is divine intervention. Others believe that there is evidence that the latest chemo regimens are very effective in certain cases. Others attribute this to attitude and changes to my diet. Personally, I do not know. All of the above seem probable and improbable. There is so much we do not know about colon cancer (or any cancer for that matter), that it is hard to tell which parameters are sensitive in a fight against it. Besides, we have now discovered that there are two varieties of colon cancer (the garden variety and KRAS – these are now considered different diseases). They both react very differently to chemo. (By the way, I had the garden variety). But how many more varieties are there? Could there be 600 different varieties, each of which is fundamentally different? Are we trying to treat different diseases with the same treatment? Do some of these varieties go into spontaneous remission?
Perhaps the path the disease took is partially under my control, in which case I need to share what I did. There were several factors, of which none, some or all contributed to my being in remission. In alphabetical order:
1. Attitude – for better or worse, I have a skill of not dwelling on negative experiences. Less charitably, that attitude can be described as denial. But in this case, it worked out for me. Every piece of bad news came with a wisp of a silver lining that I grabbed and focused upon. For example, when I was told that no, it was not stage II and instead it was stage IV, since they found small metastases in the liver, I heard SMALL. When 6 of the 33 lymph nodes were positive, I thought of the 27 of 33 that were just fine. It was a much easier journey for me – with stage IV, all I could do was get better – a benefit of starting at the bottom.
2. Chemo – FOLFOX+Avastin. (I understand that this and FOLFIRI are standard first line treatment for colon cancer. I did not have FOLFIRI)This was not too hard on me. The first round was the most difficult. The subsequent rounds were well tolerated although the post-chemo symptoms became increasingly difficult to bear as the doses went on. We stopped after eleven treatments when I developed Lhermitte’s syndrome. Lhermitte’s disappeared about four months after chemo. The first ten doses were at 100% and the last one at 50%. The neuropathies from this regimen remain with me even today – nine months after chemo. It is a minor inconvenience – painful cold sensitivity on the finger tips and toes.
3. Community/Support – It has been overwhelming, the amount of community support our family has received during this time. From all the delicious food – made with so much love and caring, the time people spent with us, the shoulders to lean on, the arms and the hearts that were opened up to us, boosted our strength. In my mind’s eye, I felt like that Verizon guy with a phalanx of incredible hearts and minds behind me as I entered the ring at every chemo session to battle my quivering enemy. I imagined the cancer regretting the day it ever entered my body. It was not prepared for a fight against an angry village.
4. Diet/Supplements – For four months, every day, my sister-in-law Sarah made me fresh juice on a Norwalk Juicer. I would drink eight 16oz. Mason jars of juice a day – 1 gallon of juice – made of carrots, kale, apples, beets, spinach, and celery – each with a teaspoon of turmeric. In addition to this, I stopped eating meat, dairy and sugar. I would eat fish and eggs. I increased my fiber intake as much as I could. In terms of supplements, during chemo, I took AHCC, Vitamin K2 (on recommendation of naturopath), L-Glutamine (to reduce neuropathy), Vitamin D, Curcumin, Green tea extract and multivitamin. Since being in remission, I have continued the multivitamins, curcumin, and vitamin D, and added folic acid (controversial) and aspirin. I also take two glasses of water with a tablespoon of psyllium husk in each. I have remained on my diet of no meat, no sugar and no dairy – I don’t miss them and don’t believe I will ever eat them again.
5. Exercise – Right before I began chemo, I started on a regular and rigorous exercise regimen, with the goal of running 20 miles a week. Typically I would do 15 miles and occasionally 18 miles. During chemo, I would walk 2-3 miles with my chemo pack and run 3-5 miles the day after chemo. I believe this really helped ward off the fatigue that chemo typically brings on. I also imagined that this pumped the chemo through ALL parts of my body. Since then, my workout routine has been sporadic.
6. Prayer – There have been numerous people praying for me. My extended family in India offered Novenas and masses and held vigils for me. Prayer groups implored. My brother Mathew laid hands on me in prayer every other day. The love and concern that I received through the prayers were very moving and powerful. The prayer and love that I received was a constant and great sense of comfort. My visitor page at the CaringBridge site listed above was a reservoir or “love-lets” that I drew from frequently.
As I mentioned, all, some or none of these helped in the fight. But one thing for sure: mounting an aggressive fight against the disease helped me be focused and have a sense of very important and very clear purpose, so I never felt helpless in this fight. That might have been a key contributor to me being in remission.
The threat of cancer has reduced in my life because of the remission and also because of constant vigilance. The diet continues to be without dairy, meat or sugar. I eat little or no processed food. Food is almost always organic. Supplements continue to fortify me. Household cleansers are nontoxic; cooking materials are mostly stainless steel.
Cancer has also left me more deliberate with life, a thousand fold more appreciative of every minute I spend with my wife, children, family and friends. I don’t sweat the small stuff as much. And I appreciate people in their variety. While cancer is a cruel disease like all life-taking disease, my experience through it, partly because of those around me, has been remarkable and wonderful. To go to the brink, to realize how short and precious life is, and then be given another lease … I am so grateful!
*This is a pen name, author chose to remain anonymous.