I am back in my role as a writer and investigative reporter in this article.
You may be wondering why am I writing about this topic?
I have been unable to have a Mani-Pedi for 8 months because my fingernails and toenails were severely damaged by my chemotherapy. The nail beds were wavy, black, fragile, claw-like.
Finally able to return to the nail salon, I found myself crying when the manicurists asked why I had not been there for so long? Why were my feet, ankles and calves so swollen? Why were my nails in such bad shape?
As I told them I have been living with Pancreatic cancer for almost 5 years and have had every possible treatment and recurrences, they were so kind, concerned and empathetic with me that I could not stop crying. They hugged me, gave me kisses and reassured me that I was going to be healthy once again.
In that moment, in the sanctuary of the nail salon, I knew God was blessing me and letting me know that He was there with us and would lead me forward.
I was crying not only about their kindness, but also about all I have silently suffered and endured. I felt sad for my poor little body. Chemotherapy has been really tough on me and my family.
Some of the tears were for the Joy that I received after the Mani-Pedi. My nails looked feminine and pretty once again. I was transformed from “cancer patient” into a lovely woman. I was once again, my Self.
My ruined nails are only the tip of the iceberg of side effects that damaged and devasted my entire body.
I am writing this article to share the myriads of chemotherapy side effects that I accumulated over the last 8 months.
Try to visualize a drawing of my entire body:
My head:
I experienced red, burning face and puffy, watery eyes from my Infusion and home chemotherapy pills, Xeloda.
I had a constantly runny nose.
I had swollen lips and ulcers on my inner lower lip and the inside portion of my mouth.
Cognitively, my Cerebral Cortex (executive functioning portion in the frontal lobe) was not working. I had problems with settling my bank account statements, remembering to pay bills, renew licenses, remembering appointments.
My Limbic System (the midbrain) was flooded with constant messages of “Danger” when having blood work done, waiting for test results each round of chemo, fear of what the next side effects would be, fears of the chemo itself and whether it was even working.
The area from my neck down to my pelvis and from my sternum and lower portion of my ribs, through my intestines and entire GI tract, to my rectum:
Most of the time I had rock hard stool that got impacted, but sometimes I had red hot lavalike diarrhea that burned inside the GI tract. This could last 10 days, to the entire 21-day cycle of infusions and home Xeloda. This also caused abdominal bloating and pain.
As a Holistic psychotherapist and former Oncology Social Worker, I knew the toxic effect of the chemotherapy was wiping out my healthy gut microbiome and immune system. The toxins caused inflammation of the damaged areas which drew all the attention of the Killer T cells to those areas – which made them ineffective to destroy the stem cancer cells. The immune system was focused on decreasing the inflammation. My red blood cells, white blood cells, platelets, and neutrophil dropped to dangerously low levels – which required an injection of Zarzio to stimulate the bone marrow to produce more immune cells.
I had Hand-Foot Syndrome that caused the soles of my feet to redden, crack, peel; made it difficult to walk. I treated my injured feet with hot bath soaks in goat milk soap and wearing Cold booties for days – which minimized the amount of walk/running I could do.
My weight plummeted from 126 down to 112. I had food aversions, loss of appetite, could not eat the foods I normally loved (bananas, tomatoes, avocados, oatmeal, certain proteins.) I had a hard time finding food and drinks that would help me gain weight and improved muscle mass.
I was frequently fatigued and would have to rest frequently, often forgoing exercise and daily essentials.
I also experienced chills and body shaking that required heavy blankets to warm me.
In the last two months, I developed severe edema (swelling) of the tops of my feet, ankles, and calves. This I treated with time in the sauna and putting them in front of the strong water jets in my hot tub, plus rotating them and flutter kicking in the water.
The most painful side effect turned out to be the effect the chemo had on my belly button and the area around it. I had extreme sensitivity and pain when it was touched by clothing, my hand, any pressure applied to it. I complained about this area for the last three months, and it was TOTALLY IGNORED by the Oncologist and his NP. It was very painful and fear-inducing. Finally, the NP responded to my urgent cry for HELP and admitted, “It’s peripheral neuropathy that is very common with Oxaliplatin. 50 – 100 mg of Vitamin B6 can help relieve the sensitivity. All of these side effects you are having will continue for months or longer once you stop the chemotherapy.“
My question is: WHY THE HELL DID THE ONCOLOGIST NOT TELL ME THIS WAS A NORMAL SIDE EFFECT OF THE INFUSION? WHY DID HE LET ME KEEP WONDERING IF THIS WAS A NEW MANIFESTATION OF CANCER?
From the point of view of this investigative reporter who lived the story, I believe that my experience is very common. For most cancer patients on chemotherapy, the Oncologists and NPs do not pay much attention to the side effects – which inflict great pain and grief on their patients. Also, they rarely have any suggestions about how to deal with or minimize the side effects. We are left to suffer in silence or find our own remedies.
Oncologists focus on combinations of chemotherapy – on how to get “the most bang for the buck.” They are more like scientists than doctors, not particularly concerned with our quality of life. They are focused on the numbers.
As the months rolled by and the cumulative effects of the chemotherapies became more severe and longer lasting, I finally reached the decision to STOP BOTH THE XELODA AND OXALIPANTIN.
The SEVERE DEPRESSION I WAS EXPERIENCING WAS NO LONGER TOLERABLE.
I arranged for my husband and I to meet with the Oncologist and told him my decision.
It’s a bit ironic that my Oncologist finally agreed with me. He said, “I recommend we stop both forms of chemotherapy. They are not working. When we started, your CA19-9 was 7,000. These 8 months later, it is now 6,000. Some of the tumors got smaller. Some stayed the same. There are a few new small ones in the abdominal wall, near your right ovary and your rectum.”
I told him I was leaving for a two-month vacation; that I wanted to give my body, mind, emotions, and spirit a chance to repair and heal herself; and that God would show me the next steps to take in terms of my treatment.
I reaffirmed that I believe my body was divinely designed to heal herself and that I would maintain my Holistic Approach to healing, as demonstrated in my website:
www.HolisticCancerRecoveryHub.com
So, my readers, these are my conclusions and plans. I have an appointment with the Director of the City of Hope Integrative Oncology Department in September. Thank you for your continued support, love, and prayers.
I highly recommend that all cancer patients carefully monitor the effectiveness of their various treatments and how they affect their quality of life.
YOU MUST BE YOUR OWN ADVOCATE AND HEAD OF YOUR TREATMENT TEAM.
YOU KNOW YOUR OWN BODY BETTER THAN ANYONE ELSE.
SPEAK UP WHEN THERE IS A PROBLEM.
DON’T BE AFRAID TO SAY “NO” TO ANYTHING THAT IS WRONG FOR YOU.
SEEK A SECOND OPINION ABOUT YOUR TREATMENT PLAN.
DECIDE WHAT IS QUALITY OF LIFE FOR YOU.
I remain committed to cancer patients and their families around the world and send my Love and God’s Blessings to you.