Colon cancer diaries V: The bright side of darkness

What shape does despair take for me? It does not have to do with the fear of death, which I'm pretty aware it's going to happen sooner or later. I faced the certainty of death and dying two other times in my life and it brought me over the edge the first time because I did not fully understand that I was mortal. Unfortunately I still forget this too often, like most of us, and go back to assuming that my life will simply go on and on. However, when you are convinced that something is absolutely impossible, right there where acceptance slips through, don't you stop wishing for it? There is no reason not to accept death because it is impossible not to die.

Rather, despair comes for me when I don't accept something undesirable, something that I should be able to stop or reverse while at the same time I doubt I can stop it. It is like the paralysis that comes, for example, from fear of heights, you are drawn to it and at the same time you are afraid of falling. You fear you won't be able to prevent the fall but you want to prevent the fall. In a way, there is a side to despair that is a good darned thing. I say that my worst type of despair, of Hell, does not take the shape of the fear of dying but what I actually fear is wanting to die, and even killing myself when there's a part of me that doesn't want to do it. If I was absolutely convinced that I wanted to die, I would be very sad but calm and not desperate, not in my Hell. This all refers to the hopeful part of despair, what I call the bright side of darkness. The same as there is a dark spot in hope, with the fear that our desires may not come true, there is hope and wishing for better outcomes in fear. That is very cool.

I was in despair, with suicide ideation, at least three times in my life before 2007. One of those times was in 2007 was when I recovered from my first cancer and for weeks I found hard to believe that living was better than not living. It was right after I had been declared in complete remission, the golden medal in cancer; I tell this story on the video of this web side This is when I found meditation and my favorite psychiatrist ever, Dr. Michael Burke in Atlanta, whom by the way I have not seen since 2007. It was also the last time I took medication for anxiety and depression but it was not the last time that the idea of killing myself crossed my mind.

I had a few moments when I preferred not to exist during this 10-month ordeal, whenever I felt my life was so miserable and I was so afraid of making others so miserable that I was not sure I longer wanted to go on living. What does "so miserable" mean? I refer you to articles III and IV in this series to give you an idea of what my every day was like at the time. Add to that extensive food intolerances that made everything more confusing and the bathroom business worse, and the weight loss of 44 lbs and lack of energy and strength I suffered. I must acknowledge that my loved ones never gave me any indication that their load was miserable: my sister Elva, my primary caregiver and guardian angel (but human and therefore imperfect, I say this proudly) assured me there was nothing else she'd rather do. However, I could not resist the possibility of her coming to my land of despair.

There was a funky moment without despair when I concluded with certainty that it was the best for me and for others that I left. Precisely, it did not feel like Hell but it could have been more dangerous for me and others around me. This was right when I found out that a third surgery was needed. Progress had been made at last, food intolerances were better, diarrhea had led to a chronic painful constipation but this was somewhat easier to handle. I had also conquered some autonomy: I never stopped fully working throughout this adventure but I had started to take long walks consistently and I was going to take my first trip overseas to Menorca, the paradisiac Balearic Island in Spain. That would be a test for how soon I could fly back to Atlanta. Then I got this phone call, which brought the certainty that I would lose all those small gains.

It was a call because many of the health care appointments in this COVID pandemic have been through the telephone. My surgeon shared the news about the results from a new colonoscopy that they had done to investigate blood found in my feces. "You have another tumor in your rectum, she said, and we have seen two suspicious marks in your liver, in addition to the tumor in the lung you know about." See, I've been through this plenty of times. Doctors assess and re-assess, as they should, looking for things and finding things. I've been diagnosing children with autism most of my professional life and it is well known that "he who seeks finds". Specificity decreases when sensitivity increases, meaning that when we are more likely to find things that need to be found (sensitivity), we may also find (and make a big deal about) things that are not so important and needn't be found.

I was already aware of an encapsulated tumor in my lung (encapsulated means that it does not grow, the immune system is keeping it at bay), and that I was willing to let it rest. As I said, this was not the first time I get news about other suspicious or confirmed tumors in my body. A white spot remains deep inside my brain, whatever that means, after the second lymphatic cancer in 2016. I prefer not do anything in those cases and give myself a break: no surgery, no more chemotherapy, no radiation. In my personal opinion, the cost that it would have to do something that aggressive does not warrant the benefit it may have. Let's just say that my well being has a higher threshold for uncertainty and insecurity and lower for physical pain... I've done my share of surgeries and chemotherapy but I'd rather not go on that road unless I'm convinced something poses an immediate threat.

The new spots in the liver also turned out to be, as confirmed by an MRI, a cyst and a highly vascularized area, although I didn't learn this until much later. So that phone call put me on emergency mode. I was strangely able to focus very clearly. I reacted calmly and thanked my surgeon, scheduling for an in-person visit to sign the consent form for the next surgery while I was telling myself "I'd rather not do this, there is no way I'm going to let anybody touch me down there again after all I've been through". My plan all along was suffering less, not living at all costs. I was clear I was at my limit, and my limit would cause extreme pain to my loved ones. It was time to design a bright end for my bright amazing life, the best life I could ever think of. I did not want to go in agony and I did not want to make others see me go in agony. That is not me, neither whom I want to be. I would come up with a plan. I still had enough energy and health to live my last days in joy, perhaps cash out my retirement plan, throw the party that I was already talking about... How much time did I have before things would get really worse?

I stayed in this mode for a day or two, not contesting this idea, not confirming it, not making plans yet, not undoing them. It is interesting to look at all this now and see how bizarre this project was. However, I was being honest with what I was feeling at the moment. It did not seem to me a bad plan at the time, in the aftermath of a debate in Spain about a new euthanasia law, incidentally. I did ask the universe for a sign of some kind, which is another way of waiting and allowing events to guide me. Signs, or events, or projections of my own subconscious mind in touch with what I really wanted, came very clear.

They started with the book I was reading at the time. One of the main characters committed suicide. It was not pretty. Then two people killed themselves in two different movies I watched within the same week. Even in the case in which one of them had orchestrated a grand finale, it was all troubling and messy for those who were left behind. Then the biggest "sign" came when my sister's next door neighbor, where I'm staying, committed suicide. I was not close to him but I cannot begin to describe how it felt to have greeted him just hours earlier and know he had made that decision and succeeded. Reality kicked in and I saw CLEARLY there was no possible joy in going this way, no brightness, not for my family and friends, not for me either if I was bringing hell to them to prevent Hell from happening.

Something else is important, although a simple truth. That crazy idea was not consistent either with whom I am, because among all things I would have had to keep secrets! Can you, reader, imagine me, Samuel, concealing important information about myself? Ha! So things guided me to a very different conclusion. If I was no longer convinced that bringing an end deliberately to my life was a good option, how else could I coexist and shine with the likely upcoming agony? Whatever happened, I could try not to let it swallow the best in me... I would still throw the party; hopefully there would be an opportunity to do that before the inevitable mess at the end. Like one of my favorite songs by Jason Mraz I often quote says, "I reckon it's again my turn to win some or learn some". It was still time for me to accept and learn. I was willing to embrace (reluctantly) moments, maybe days, maybe weeks, maybe months of hell and despair. That was the best way to reduce moments, maybe days, maybe weeks, maybe months of hell and despair for myself and others.

This was when I started to share bits of this information with my family, one by one, pacing the delivery of news. Surprisingly, the information I shared came out calm and confident, not in denial but honest, clear, almost joyful. They mirrored me and I again was able to mirror them. Hope, which is again love, gradually filled more and more corners of this space of concern. Good news came after hope, news about the stains in the liver and the obvious progress from the last surgery. Everything looks very different now. The likely outcome now is not just living longer than I thought but also a life with less suffering. I cannot say there are no longer moments of despair, with its brightness and its hope, but I have less often the idea that I can eradicate completely death or suffering for myself or others. These are inevitable aspects of being alive. Accepting this is the only thing that helps decrease a little bit of this suffering. If I'm convinced I can't eliminate it altogether, I no longer want to do it.

Photo: Santander, Spain, courtesy of my sister Josefina