Miracles and diagnoses happen
Facing a rare disease & massive surgery with a newborn.
My precious newborn son (2016). Prior to my last two months of pregnancy, I was asymptomatic. He saved my life.
—Originally written April, 20, 2017: At this time in my F.A.P. journey, I was dealing with the emotions that came with my one-year anniversary. I was marking one year since my colectomy at Sloan Kettering and looking back at my life since the major operation—a baptism by fire into major cancer centers, the world of doctors, and correct/incorrect prognoses. Ever strong and resourceful, I was also deeply coming to terms with the disabling condition, the stomach polyp worries, and motherly sadness, fears, and hopes.
The birth of my son in January 2016 coincided with a battle for my life. How to stay resolute? I would have to dig deep and summon all the goodness that I had witnessed hereto in my life. Gratitude for my son, amazement that he saved my life, awe in a bizarre, bigger plan. Without circumstances falling as they had, I would be dead now. At the time of my diagnosis, my baby was just five weeks old, and up until my colectomy almost two months later, I did not know how many options I would have left. Would they open me up to find full-blown cancer? Doctors could not say.
The nonpermanent appearance of happiness and distress, and their disappearance in due course, are like the appearance and disappearance of winter and summer seasons. They arise from sense perception, and one must learn to tolerate them without being disturbed. This verse (2.14) of the Bhagavad Gita is beautiful in meaning, but it can also be harrowing. It is beautiful because it represents a relationship with a source of peace —it suggests a deep well of reserve with the soul, even when the boat is rocking from the crazy waves coming at you. It is like Jesus telling his disciples to not focus on the storm, but to focus on him. This type of message points to the scales of life; do not focus too much on the bad—or the good.
I have recognized that balance comes through the awareness that all things shall come to pass. Knowing that impermanence is a fact of life brings wisdom and acceptance: what is essential are things like harmony, grounding, staying positive and/or trusting in one’s faith. I learned even more this past year (2017) that we are wise to accept all gifts and trials in life with this perspective. This knowledge came like a baptism through fire—that is, through very real health battles and trials. One may be worried or deeply stressed (as I was when diagnosed with a genetic, life-threatening disease just weeks after giving birth to my son), but we are encouraged to not focus on the swirling flux and chance in circumstances around us. This verse, like life itself, drives us to search for what is long-lasting.
The Little Prince says, “That which is essential is invisible to the eye.” Throughout my life, I have definitely felt a presence buoying me, looking out for me, guiding me, gifting love to me; I call it God, and believe He has guided me through the toughest times. I had my son at age 39, when I thought I couldn't have a child—and had I not, the thousands of high-grade dysplasia polyps in my colon and rectum would have turned to cancer (they were about to) and that would have been the end. During this crisis, I was joined in prayer by many caring souls. I cannot thank people enough for the prayers said for my health and recovery.
Even just asking for God's help brought me hope and steadiness where things were bleak. Why not ask? Everything was beyond my control. The verse from the Gita on cultivating equanimity (evenness of mind especially under stress; right disposition, balance) is a revolutionary unique perspective on life’s stressors, especially in a day and age where consumer consumption is the norm and entertainment is the apparent goal in life. Yet both happiness and distress are sense perceptions, and we "must learn to tolerate them without being disturbed." Sarvam dukham.
And because life’s stressors can sometimes be so devastating, this verse is also harrowing because life can truly bring you loss, great loss, and none of us humans are exempt from such heartache. I am not speaking of simply a bad day, but of something so bad as the separation of parent from child, for example. Why does a mother worry so? It is because her whole heart is invested in her child. How is it possible that in this world, for example, a child may lose his or her parent, or a parent lose his or her child? How to accept such a loss would be quite a challenge. Yet sacred texts are not there to help us with merely superficial experiences. I am not sure how I would deal with such a distress as the one above (I have dealt with similar ones, and the grief was intense enough), and yet that is the deepest fear I probably have. Each day that I waited for biopsy results was torture, and the not-knowing if we would catch cancer in time to save my life. My life had just become my son's life.
Even in tragedy, one must root oneself in faith, an anchor, or something similar to it—the believe in love and laughter, for example— and be honest, even if angry with God. Anger is a movement; if we are able to deal with it in a healthy way, it never really seems to last. Personally, I was not angry with God when I received my diagnosis. I knew to ask for help, and I prayed that my son would not be without a mother every night as I lay awake worried. There were many times where I did not talk to God, but it did not mean I forgot about him or thought him any less benevolent. At the cerebral level, I could acknowledge (and had experienced with my uncle, and years later, with my aunt) that He giveth and He taketh. Even in the silence, even with the clouds, I could not deny that the sun is still there. Perhaps the more we appreciate what we do see or feel of God, perhaps the more we recognize it. I share my personal reflection on this matter because I cannot help but see how all things conspired for my life to be saved—in some weird way, for some unknown reason. I just know that I would have been finding out I had colon cancer if I had not had my son. Being pregnant brought about the symptoms that I never had, though the polyps had been growing in my large intestine since I was very young, which explains why some of the thousands of polyps were as big as two centimeters and high-grade dysplasia.
My feeling, and my key to getting through seasons of distress and of joy associated with a sometimes very harsh disease is giving gratitude through it all, and knowing that one can always find recourse in divine love. We can always turn to meditate on love, kindness, the breath. The more we store up our recognition of God’s love, the easier it is to return to those moments in our mind when we need that faith as the skies darken. So, I guess that what I have learned from decades of regular living, and recently, a very trying and never-ending health battle is this: Where there is evidence of strong, pure love, it is hard to focus on the darkness. This is how I feel about life: There is strong pure love we have all been shown, and that love is greater than anything God allows to happen to us. Therein is my peace.
My son and me, weeks after my colectomy. I could not lift him for 8 weeks and had lost my breast milk from the surgery.
I will share a journal entry I wrote on this day, April 20, one year ago in 2016, the day after my total colectomy where the expert surgeon Dr. Jose Guillem, then at Memorial Sloan Kettering, robotically removed my large intestine in an seven-hour open surgery. I share to commemorate something that is so awful and amazing at the same time; and in some ways it was another rebirth. It brought me spiritual wellness, strength, faith, love, and gratitude. My 40 days in the hospital this past year (2016), my ER trips, my worries, my health and bodily problems and issues taught me the meaning of the verse above: It was much more graceful and easy to tolerate the distresses I had to endure (and even joke about them with nurses and doctors at times) than to fight or bemoan them. Doesn't mean my heart was not wasted for missing my son while being almost incapacitated and helpless for two weeks in the hospital and for days here and days there. It just means I tolerated these sense perceptions and focused on the prize.
Here begins my writing from my hospital bed:
Recovery—Journal entry by Krisha Priya — 4/20/2016—Entry 5. Greetings from the recovery room. The operation was an open surgery and began yesterday morning and was over seven hours. I am told it went well and that the connection was good. I went with the jpouch. However, I have the ostomy bag now and for three months approx. until my second operation. I have not looked at my stomach but I know he decided to cut me in one vertical line, about 7 inches if I recall what he had said Monday. I am alone now for a few hours (with exception of roommate and her visitors on other side of curtain) and felt like writing, as I asked my mother to be with my baby over me, so he will have more comfort and someone who reminds him of me. He is in good hands with his father, and great-grandmother, but his father goes back to work tomorrow and friday. When I left for the city I bathed Julien's head in tears. Looking at his photos and thinking of him bring me joy while here. I had to fast Monday and yesterday and cannot eat yet today. Yesterday morning in the surgery prep area was full of jokes and cheer. My two nurses were from Ireland and so sweet. Then I woke up post-surgery in recovery room, not nearly as nurturing an arena. My mother and best friend Carol were right there, with time only for a quick hello before they had to leave. My mom relayed info from surgeon about how it went well, the connection was good, and it was 7 hours long. I'm not sure what happened next but two nurses came to wheel me to my room. In the elevator they talked only to themselves and I got the feeling they didn’t care much about me. They wheeled me into room where I am now and said, here's your call button and the pain button and literally left. I felt like I had just gotten out of Vietnam and no one cared. I couldn't wait to see my mom again. I don't know how long it was. I think I hit call button and said I needed to talk with someone. It took awhile, and so I think I was crying when nurse arrived. I said I needed to have my bearings... Nighttime was awful, so much pain. Pain as a word achieved a new meaning for me. The hospital bed is horrible on your back, and with my abdomen in such pain I could only lay on my side. For maybe an hour at a time, and so that is how I slept: interrupted. Then, a roommate was wheeled in late at night. I had a hard time emotionally, and physically. I have an epidural in my back and two drains hanging off my front that collect blood and fluids from surgery, I have something in my butt, and of course an ostomy. I only discovered all this in stages and as I moved or had leakages. In the morning, I was doing my usual side switch roll - very carefully - when my hand went in something... My ostomy bag had come off and I had my own waste on my hand. I called for nurse and began crying, slow whimpering. Just cuz I was alone and in shock I think. The nurse came and told me it was going to be alright and cleaned me up. Soon after, my mom came. I was still upset at how callous the nurses on this floor had been, and she assured me she'd call me dearie and sweetie and be there. So much pain still, I had told nurse, and she would walk out. I felt like I was in the middle of a conversation. But when I looked she was gone. The nurse from the night before was like, yea you're in pain from surgery. Finally, a pain nurse came to check how I was doing and responded by changing my medication. After some napping it was time to walk. I thought this would be impossible, but I was able to make it a little ways down the hall holding onto my iv pole and Rosalie, a nice lady. I started overheating and said ice, ice. I need ice. It was too late. I was about to pass out. I said so, and went slightly limp. Rosalie held me tight and called for a chair. I was fading and seven people surrounded me and slid me in chair back to my room. Another nap, and my surgeon and his team came. He told me that over time, my output would have consistency of pesto. I started to laugh and it hurt, he told me he says this to all his patients, not just the Italian ones. I'm going to stop here, as I'm exhausted. Thank you all for your thoughts, prayers, and caring.
