In 1990, at the age of 32, I was diagnosed with a rare cancer. I had noticed a lump under my eyelid and my eye was protruding. I was sent to an ophthalmologist and was diagnosed with an infected tear gland, put on antibiotics and sent home.
The lump did not go away. I was then sent to a surgeon, had an MRI and was diagnosed as having a tumor, probably benign. The surgeon removed the tumor and realized he had never seen anything like it before. He suspected it was malignant. He sent the tumor to MD Anderson to be diagnosed. When the pathology report came back, he sent me to a plastic surgeon in Miami for treatment. He stated it was beyond his scope of practice.
About one out of four million are diagnosed yearly with Adenoid Cystic Carcinoma ACC. The prognosis is very poor when it has spread beyond its original site. I was given a 10% chance to live, if I had the radical surgery of removing my complete left eye and orbit. I was given 0% chance without the surgery.
With the help of my father, who was in the medical field, and of other friends, we reviewed the research and talked to medical professionals. We found out that these grim statistics and choices were what was accepted in the current medical literature. At the time, neither chemotherapy nor radiation therapy were expected to make a difference.
I was told about one other person who explored a fruit diet in the Bahamas instead of having the surgery. The tumor metastasized and he died. I chose to have the radical surgery.
My surgical team included a neurosurgeon, a plastic surgeon and an anesthesiologist. The mask of my face from the skin to the skull was opened up and pulled off. The eye, muscles, and bones of the eye socket were removed along with the optic nerve, which was removed through the brain. This cancer can travel along nerve fibers. All tissues that could have come in contact with the cancer were removed along with up to 3mm of clean unaffected tissue. This is to create margins clean of cancer. My face was put back together using muscle and bone from other parts of my skull and grafts from behind my ears to ensure a solid, protective area between my skin and my brain.
Yes, the prognosis was grim, statistics did not appear favorable, and complementary medicine for this particular disease had not been studied, due to its rarity. I had had some training in complementary therapy as it relates to cancer generally, music therapy, guided imagery, and mediation. I chose to use all of these techniques as adjuncts to the surgery.
I also researched techniques that may be effective, including psychotherapy, hypnosis, and prayer. I added these to my daily routine of self-care. I believe we have a certain responsibility for our own health and wellness. This does not mean if we make healthy choices that we will 100% escape from disease and death, but we will give ourselves a better chance.
I was told that I was probably born with a cell in my body that mutated causing the disease. I was told it was plain bad luck and there was nothing I did wrong. This was of great relief. It is so important to take a certain responsibility for your behavior, but not to shoot yourself with the second arrow, as the Buddhists say. The story goes like this: There is a painful event, which is the first arrow. The second arrow is when you continue to berate yourself for this event. The second arrow is more harmful than the first. Treat yourself with loving kindness and let the past be past.
The techniques described below are not medical recommendations. These are techniques I read about and studied, they resonated with me, and so I pursued them.
I implore you to pursue your own study of self-care techniques and determine what resonates with you. There is no silver bullet. We do not know why some people survive a life-limiting prognosis and some die. There is currently research going on in this area, and I hope the results will bring healing to many others. I have listed below the choices I made.
Here are the choices I made prior to surgery, along with some expanded information:
- I did all the fun things I loved to do and spent quality time with the people I love. Love is very important to have in your life. Allow the feelings of love to flow over and through you. The really strong emotions of love can be very healing.
- I said my goodbyes, as there was a chance of my not making it through the surgery. I do not have children, so I did not have that emotional pain to deal with. I made peace with important relationships.
If you have children, you will need to share with them. You may want to speak to some professionals in this area about how to talk to the children about the surgery. There is probably support available at a local children’s hospital. It is ok to cry in front of them. Remember also to hug and then do something fun and up-lifting with them. Giving your kids something concrete to do that is helpful to the situation provides them with some feelings of control and helps them get through it. They can make you some inspirational cards. They can fix favorite foods. Depending on their ages and the surgical site, they can help you make fun things to wear to dress up the surgical area. I used to wear homemade eye patches that matched all my outfits.
- I got my affairs in order. Will, Health Care Surrogate, Living will and Power of Attorney. I let my family know that I wanted cremation and my ashes scattered. These things may be hard to do, but when they are done, they are done. Go back to living fully and enjoying your life, knowing your affairs are in order.
- I talked to my anesthesiologist about giving me positive suggestions during surgery. There is research to support while under anesthesia we are very suggestible, like under hypnosis. My anesthesiologist was aware of this research and gave me the suggestions not to bleed. We did not have time to get blood donors for me and I would have to take whatever blood of my type was available. I did not have to have a transfusion. My anesthesiologist also found out what activities I loved and made suggestions for participating in those activities. He made suggestions for complete healing and full eradication of the cancer. I was blessed to have an anesthesiologist who understood these techniques. Please ask for support, educate and advocate for yourself.
- There is research about the positive effects of music. I used music that I loved and related to before and after treatments to lift my mood and as an adjunct to meditation. This also helps with pain control, but I really did not have much pain at all.
- I also spent time in meditation, visualizing a successful surgery eradicating the cancer.
- I was put on lots of different prayer lists. Research shows that the religious denomination does not matter. If people are sending positive energy your way in whatever form it takes, it can have a positive impact. (Dossey, 1989)
- This was not available when I went through the surgery, but I would suggest you ask a friend or family member to set up a Caringbridge (Web ref.) site for you. Caringbridge is a website on which a person can set up a page and invite friends and family to visit. News regarding treatments and condition can be posted by the patient or caregiver and friends and family can send inspirational, supportive messages. It is really hard to talk to everyone who calls, and can be exhausting.
- Make it a practice to feel love and awe several times a day, whether it is a beautiful sunset, your childs smile, and/or your spouse doing something silly or wonderful.
- Participate in and receive any kind of energy medicine modalities such as reiki, EFT, acupuncture, etc. that resonate with you.
- Eat healthy and stay fit. I eat mostly organic foods and avoid any food that has pesticides, antibiotics or artificial sweeteners, colors or flavors. I also make sure I get enough protein, and a well balanced diet with a variety of fruits and vegetables,
- Allow yourself to grieve. Give yourself permission to have a bad day. Journal, draw, dance, walk whatever you need to do to release sad, angry emotions.
- MOST IMPORTANT: Dont call it MY cancer!! Correct people if they call it Your names cancer or say YOUR cancer. It is not yours, so dont own the stuff. It is an unwanted visitor. (I have had some people not agree with me here, but this is very important to me.)
Then there was post-surgery and some of the pre-surgery techniques continued. Here is my post surgery list.
- Accept yourself for how you are now. Cancer can be very disfiguring and there will be a grieving process around the loss of part of your body and how you fit into your body and society now. This was quite a process of learning to live with facial disfigurement. See my photo below.
Moments of fear may surface. It might be twinges of pain or a flash in the mirror wondering if something has changed, or feeling something as you run your hand over your body that might lead you to feel your world has been turned upside down in seconds. Remember to breathe. Relax and run a reality check. you will find that these challenging thoughts and feelings dissipate fairly readily. If you continue to have concerns and the feelings dont go away readily, seek professional assistance.
- Visualization: I had studied the research of Dr. O. Carl Simonton, MD and Dr. Helen Bonny, Ph.D. and decided to visualize the Mr. Clean white tornado cleaning all the cancer out of the now empty eye socket. I used this image almost constantly. For example, I would spin that tornado in my imagination while sitting at a stop light, waiting in a grocery line, relaxing at home, etc. It is important to come up with an image that resonates with you. An image that is simple to evoke and use frequently and consistently. I used this visualization frequently throughout the day for the five years I had to survive to be given a clean bill of health.
- Awe moments: Take time to really appreciate beautiful moments, whether it is watching a child or an animal, an incredible sunset or sunrise, a beautiful flower or tree. Find your awe moments in the world around you. Dr. Paul Pearsall, Ph.D. talks about this in his book, Miracle in Maui.
- Seek supportive, healthy relationships. Surrounding your self with positive people can make all the difference in how you feel.
- Pursue your bucket list. None of us know how long we are going to be on this earth. It is so important to take time to pursue your hearts desires, as long as they are of no danger to yourself or others.
- Therapy: Pursue psychotherapy to work on issues related to the cancer. I saw a therapist for several months to learn to cope with having been diagnosed with cancer and with the facial disfigurement.
I have now been cancer free for 29 years. I am so grateful. Some of the above techniques I used greatly benefited me and my quality of life. I would like to share a story of the results of the visualization technique. The following excerpt is from my book Prevail, Celebrate the Journey.
in 2009, I took a course from Donna Eden (2008) on energy medicine for women. It was given over several days and we were trained in the techniques of energy healing. Donna came up to me during one of the exercises and asked me to see her after class. I was wondering what I was doing wrong. It kind of felt like being called to the principals office!
We set up a time and place to meet. Her initial question was, What is that white spinning energy in your eye socket? Ive never seen anything like it before.
I was shocked. I hadnt thought about the image in years! Donna Eden is one of those people who can see energy fields. She was born that way. I asked her to describe what she was seeing. We had never had a conversation before, and she certainly did not know that Id had cancer, or anything about the image I had used to clean it out of my system.
She replied, You know, a spinning white vortex. Thats what it looks like.
I then told her the story of the cancer and the imagery. It was her turn to be shocked. She, like me, agreed it must have come from the imaging I had done for so long.
It felt incredible to have actual physical evidence of the imagery and the result of keeping the area where the cancer was clean and free of any cells that could cause havoc again.
I encourage you to explore all the paths open to you for treatment and to pursue those which resonate with you. I encourage you to allow the feelings of love and awe to flow through your body. If you would like to explore any of these ideas or concepts further please feel free to contact me at the links below.
Alllensworth, Alder (2018) Prevail: Celebrate the Journey, Richter Publishing, Tampa FL.
Bonny, Helen http://www.gim-trainings.com/about.html
Dossey, Larry (1989), Recovering the Soul. Bantam Books, NYNY.
Pearsall, Paul (2001) , Miracle in Maui, Inner Ocean Publishing, Inc Maui, HI.
Simonton, O. Carl https://simontoncenter.com/resources.asp
Alder Allensworth, MM, LMHC, RN holds a bachelors degree in Music, a Masters degree in Music Therapy and Behavioral Medicine, and an Associates Degree in Nursing. She is certified in hypnotherapy and Level two in both EFT and Reiki. She has worked as a board certified music therapist, licensed mental health counselor, and registered nurse, in the areas of physical rehabilitation, mental health, gerontology, and hospice. She is pursuing her Diplomate in Comprehensive Energy Psychology (CEP). She provides comprehensive workshops in Self-Care.
Alder has been a much sought-after speaker, and a published writer for local, national and international periodicals. She was a co-founder of the non-profit organization Sailability Greater Tampa Bay, Inc. Her 2018 manuscript, Prevail: Celebrate the Journey, was the Richter
Publishing 2017 award winner. Available on Amazon in print, kindle and audio: