Living the “Survivor” Life

This is my survivorship story – the story after cancer, the lessons I learnt and the new normal I now live with.

I was diagnosed with Stage 3 Colon Cancer in June 2016 and went through six months of chemotherapy after having the tumor removed. That story is here already. Now, over three years later, I am in remission, and despite all the ups and downs, I am loving everything that life has been throwing at me every day.

The treatment was intense and took a severe toll on my body and mind. While cancer itself was deadly enough, chemotherapy was no less toxic. Imagine pumping poisonous substances into your body two days every other week, for six months. It was a necessary and unavoidable evil. I still remember the days when I couldn’t touch anything colder than room temperature without feeling like my fingertips were on fire, or wanting to lay in bed all day because I didn’t have the energy to even sit up, looking at all food with disgust, or not being able to button my shirt. Having been through multiple colonoscopies, endoscopies, blood tests, CT and MRIs, I am a veteran with probes and needles. I can even sleep through an MRI scan without having to put on ear-plugs.

The journey of these three years has been a roller coaster, physically and emotionally. However, the greatest takeaway from all of this is that one should not lose hope. Over the years, the treatment options have increased, and so has the success rate of such treatments. I am sharing my experiences so others like me or whose loved ones are afflicted know that there are many people like me out there. We are not called “survivors” for nothing. We survive much more than just cancer.

The Weaning

During chemotherapy, I was in the hospital every other week. When I was done, I had to visit my doctors for quarterly reviews. All of a sudden, the comforting presence of doctors and nurses I had around me disappeared. Now I would get to see my onc only once in three months, for a few minutes at best. Stupid as it may sound, there were days when I wished the chemo would still continue just so the doctors would be around me!

I missed the reassurance. I didn’t have anyone to lean on. If I had questions or doubts, they would have to wait until my next appointment unless it was an emergency.  It took some time and getting busy with other, more real things to do, for this void seemed to get filled.  Now, I am on a 6 month review cycle with fewer tests and scans between. For most things, I just go to a “regular” doctor.

Emerging from a world of angst

While I was going through chemotherapy, I continued working, to whatever extent I could. With a supportive employer and team, I was able to a put in a few hours a day in the weeks that I was not on chemo. It was challenging, because not many people understand what happens to a person on chemo. But, it was a welcome distraction, and also helped me keep my confidence level high.

I still have days with bouts of anxiety. Before the scans, it is about what will show up. After a clean scan, it is about what it will be the next time. There are days when it all seems in the forgotten past. And, then there are days when I can get completely worked up, lost in doubt. It is hard to explain to anyone, even to the people closest to you, the doubts and fears you encounter. Even a passing remark, words like “relapse” or “recurrence” used in entirely different contexts can deliver anxious moments. You know in your mind that these thoughts are completely irrational, yet they lurk.

I have also had a fair share of survivor’s guilt, especially when I heard of dear ones succumbing to the same disease. One in particular has left a deep impact. The guilt really arises from a dilemma between a sense of relief that it wasn’t you, and a sense of sadness because you understand the pain the departed ones and their families go through. It is a fight between the heart and the mind, and time is the only force that helps you overcome it.

“Be positive” messages from others don’t help much. In fact, they often had the opposite effect on me. It is at times like these that I realized that I was my best counselor. Sometimes, it would take me a day or two to come out of the funk, sometimes, just a few minutes. But these events are slowly becoming fewer and farther in between. I don’t think they would ever go away, but over time, I have learnt how to deal with them. Everyone has a different way of dealing with these things – mine has been spending alone time. When I, me and myself get together, we conquer all.

New Boundaries, New Goals

I now live with cautious optimism. Every day spent alive deserves celebration. But, my future plans are shorter term. When you are in your early forties, you are supposed to be at your peak, making ambitious plans. Now, my plans have long term hopes but short term goals. Living in remission has taught me to think of the “future” with a different time frame than what I used to. Until a few years ago, I lived like I would never die, with no plans to consolidate for the future. Now, mortality feels more real, however far it may be.

I have, however, stopped seeing death as something to be fearful of. I believe the fear lies in the unknown: what would happen to loved ones who are left behind. The reality is that, everyone is a survivor. The loved ones will also survive. You do what you can to create a better future for yourself and your loved ones. In my case, I do it using short term goals. I think a year ahead. Maybe, three. For the long term, there is just a lot of love, good memories and a life insurance policy 🙂

I also learnt that I now have newer boundaries – physical and emotional. Every now and then, I try to push them. Sometimes I succeed, sometimes I hit a stubborn, thick concrete wall. I learnt not to get frustrated with those and instead, look for the ones that I could push. Sometimes, I have small victories in big battles and sometimes big victories in the smaller ones.

Getting back on my feet

I turned to Ayurveda to support me through my journey. Even while on chemo, with advice from expert Ayurvedic doctors, I took supportive medication that helped me keep going. My immunity levels, blood counts and general energy levels remained sufficient enough for me to complete the chemotherapy without a break, and after that, get on the road to recovery. It is very important to understand though, that self-medication can be dangerous. Even though people say that Ayurvedic medicine is safe in general, any medicine taken without supervision of a medical practitioner can be risky. It is alternative medicine, but still is medicine. I did always, and still avoid unconventional remedies offered to me by unqualified well-wishers.

I used to exercise, up to what little my energy levels allowed me during chemotherapy. It was important to keep moving. Some days, just walking a few steps could tire me out – my goal used to be to complete 100 steps at a time. Reaching that goal was rewarded with a 30 minute nap.

After completing the treatment, I slowly increased the amount of exercise and continue to do at least 30-60 minutes a day of light exercise and yoga.  Yoga, pranayama and meditation have been a pillar of strength. I took to it after completing the chemo, and over time they have helped me build stamina and calm the mind.

Living the new Normal

Some effects of the chemotherapy and surgery show up over a few weeks to several months. Some wear off over time. At times, the soles of my feet still feel like I have hot wax poured on them. Energy levels yo-yo from time to time. There are some “down days” now and then, when my energies deplete right in the morning. I have developed new food allergies that I never had “before”. Over the last few years, I have understood my new normal and learned to live with it. So…if anyone asks me if “everything is normal now”, I say “Quite normal, yes”, but that’s just my own version of normal. And once you are able to accept this state as the usual, you also realize that everything is actually OK.

Drawing Inspiration

During the last few years, I have found several sources of inspiration.

Starting with the one important question – “Why me?” …Why was I saved? What has destiny saved up for me that I came out of this abyss?

One of my favorite quotes from The Last Samurai is a guiding light: “l think a man does what he can until his destiny is revealed to him”

Another great inspiration is the poem If by Rudyard Kipling. This has been the wind beneath my wings in all my pursuits.

And finally, the Bhagavad Gita lights up the path in its bright, magnificent glory every time I read it. Three readings have not been enough to gain everything it has to offer. Perhaps, even three lifetimes may not suffice.

New Perspective on Life

The time off I was forced to take, the frequent spells of introspection and just the shock of what I went through has brought a big shift in how I perceive and deal with life. I take time off frequently – going “away” with the family over weekends. Helps to beat the stress, stay close to the family and come back recharged.

My best friends and family members have always rallied around me, and I found great support in them, even though a (very) few have drifted away. Those who were close to me now feel closer than ever.

I have discovered a more spiritual side of myself, a side that finds appreciation and joy in the smallest things in life, gratitude for all that I have received and for the people around me, and faith in God. Every day starts with hope and thankfulness and ends with anticipation for what lies ahead.

The human will has the power to overcome the worst. Willpower, belief and trust in your medical advisors, and constantly pushing your boundaries can help overcome even a deadly disease like cancer. The badge of a cancer survivor is not a stigma – it is a battle scar, a medal of honor, to be worn with pride, joy and a bit of verve!

Viva la vida.