Why. And how are we going to fix it. That is how I function. My entire premise for keeping myself firmly rooted on this earth has been that if I knew what was wrong: all-the-way-deep-down-stripped-to-the-core :wrong, I could figure out a way to fix it. It’s been 16 years since I was diagnosed with cancer and I am still here and thriving, so this seems to be a reasonable path to follow.
Through the guidance office of my high school, I took a “what you should be when you grow up” test. According to this test I was slated for the healing arts, nursing or psychology. I wanted to go to Pratt for design, to learn to create magical realms of sanctuary. Instead I went to engineering school because I was good at math and science. Life is an interesting journey. A lifetime of ulcerative colitis culminated in colon cancer when I was 33 and sent me swiftly back to school to understand how the body functions when none of the doctors could satisfactorily answer: Why did this happen and how are we going to fix it?
Details tell the story I suppose, and I often forget that everyone does not live in my head, so let me explain. I was not simply wandering lost, not caring for myself, with no access to good healthcare. Since childhood I had been hauled off to pediatricians for earaches and strep throat and colds, and then mononucleosis as a teenager, and then suddenly a hailstorm of issues: gut issues, GI doctors, barium enemas, scopes, scans, oh she’s such a Type A child, so worried – she’s just done this to herself, running to the bathroom, a cyst in my breast I didn’t confess to anyone until years later, the desire to be perfect, to be loved, to be liked, to be smart, to feel better, all controlled with “medicine”. And life clicked along like that, sometimes better, sometimes worse, until every reserve had been drained and every emotional storehouse had been tapped. By the age of thirty-three I had gotten married and had two beautiful little boys. I have always been a very work through it, pull yourself up by your bootstraps kind of girl, so I focused on enjoying my sweet little boys and my life and muddled through. And throughout all the OB-GYN visits and GI doctor follow-ups, I got sicker and sicker; low grade fevers, anemia, fatigue and sixteen doctors later (did I mention I live just outside NYC with access to the “best” healthcare on the planet), I had no answers. So I figured I must right and truly be crazy. And off I went to the psychiatrist who listened to me and then kicked me out and told me to fire all of my doctors and start over. He said, yes, you’re sad, both of your parents have died in the past few years, but there is something wrong and you need to figure out what it is. I called that man a few years ago and told him that he saved my life. Because it was the very next doctor who found it. A tumor all the way at the end of my large intestine, at the cecal valve, where perhaps no scope had bothered to venture before? Who knows.
And then I was launched into the fear based, do as I say or you’ll surely die, world of oncology. By the grace of God, I was lucky enough to find two incredible surgeons, who removed my entire large intestine, part of my small intestine, and one hundred and fifty six abdominal lymph nodes, laparoscopically. I had no complications, healed quickly and received the news that all my lymph nodes were clear, and the tumor had made it into the very outer layer of my bowel wall, but had not perforated it. At that point, one surgeon told me to get a juicer (what’s a juicer I thought to myself) and the other told me to get some sun and not to do any chemo. I was so mainstream, so faithful to the system that I had been a part of my entire life, that their words stood out enough for me to glimpse something, but not enough to change my course. Looking back, a door was cracked open that I chose not to walk through. Yet. At that time the door was slammed shut in fear. I was told what my protocol should be, even though I had no actual cancer left at that point. I was bombarded by what if’s. What if there was a micrometastasis and cancer cells were traveling all through my body at this very minute just waiting to kill me and I did not listen to their advice. So I looked at my husband and my two boys, four and two years old at that time, and said, give me everything you’ve got. And it almost killed me. I sat through chemo in the infusion room with research (the information on the internet was not quite what it is today) and some old hippie sort of books on nutrition I had found at the library and started asking questions. Can I take Vitamin C? No. But it says here… No, you will stop the chemo from working. What about broccoli and vegetables and fruit? Well…not too much, you might stop the chemo from working. After awhile I engaged my engineering brain, no small feat for a mother of two small children going through this particular challenge, and said something is not making sense here. The summer wore on, and my last treatment cycle drew near. It was August and I so badly wanted to be done with this so I could send my son off to kindergarten with all of this behind me that I asked to switch to the other protocol that had been offered to me. Chemo every day for five days instead of once a week for five weeks. Which seemed like a great idea until you factored in that I had had a hell of a time getting through the once a week chemo and when they switched me no one bothered to check that my dose was at the percentage i had been able to tolerate. So I began five days of full blast 5-FU and leucovorin. By Day 3, my scalp felt funny, by Day 4, I had a fever and raging mouth sores that made it impossible to eat, by Day 5 I had no mature white blood cells and was told to go to the hospital or yet again, I would surely die. That was the day I had enough. I signed myself out of the office AMA. Against Medical Advice, and went home.
I scooped up my baby boys and hugged them and my husband and locked myself in the hallway closet so they wouldn’t see me cry and called my sister and told her I was going to die. I had made it through all of this just to die now. She listened and comforted me and told me I was absolutely not going to die, and I took a deep breath and went back out into the house. And made snacks for the boys and filled their little splashing elephant pool on the deck and helped them to catch dragonflies and newts in the brook. When they were snuggled down in the living room watching Little Bear and Bob the Builder, I went to the computer and looked up how to build your white blood cell count. It said protein. At this point, I had lost about half of the twenty pounds I would ultimately lose, was going in daily for IV fluids so I actually didn’t die or have heart failure, and was sucking on morphine lollipops and swishing opium around my mouth to get through the mouth sore pain while I they healed. I certainly could not tolerate a steak, but I read that whey protein might help. So my husband dutifully went off to the nearest vitamin store and came home with some sort of Have Beautiful Hair and Nails Whey Protein Formula. I started drinking it, took a shower, tucked myself into my clean safe bed and prayed, and the next day my husband took my boys to the zoo to give me some time to sleep. I started to improve, my fever went down and I was feeling grateful that I had not gone to the infectious war zone of the hospital where potentially I might actually die.
The next morning I had to go in for blood counts. I decided that I was not going to allow this to be the end of me. I put on a pretty pink cotton dress, my wedge jute sandals and drove myself to the oncologist’s office. I can remember that it was so blisteringly hot out that when I went in and sat on the examining room table my legs were sticking to the paper. The nurse came in and said, we must have made a mistake, can we draw more blood, it says your counts are fine. So they took the blood and rechecked it and rechecked the counts from two days before. Confirmed that I had no mature white blood cells on Monday and that on Wednesday my counts were fine. They asked what I did. I said I went to bed in my clean house with whey protein drinks and I prayed and slept.