My Melanoma Experience
I have been on quite a journey, more like a roller coaster. If only one person reads this and takes action to investigate one's own skin, then I have helped.
BACKGROUND:
I am a life-long student of health, well-being, proactive care of body, mind, and soul, author of "GROWING YOUNGER GRACEFULLY: Your Guide To Aging with Vitality, Resilience, and Pizzazz", creator of GYG Organic Facial & Body Serums, and architect of Yoga for Living with Loss. I am usually immersed in how to age well, live well, and be well. I always considered myself to be vigilant about my good health, even a little prideful that I take no medications, walk 5-10 miles with ease, teach and take a variety of yoga classes, and am physically active biking, swimming, hiking, kayaking, gardening, and full of energy and optimism.
Instantly, my world turned upside down.
INVESTIGATION:
At the end of the summer, I noticed a small discoloration on my left, fifth toe and toe nail. Was it beach tar from my many swims at the local beach? If it came from my sneakers on my long walks causing friction, I got new sneakers. I applied tea tree oil, scrubbed, and didn't think it was cause for concern. In my yoga practice, I take each toe and move it in the six directions of flexibility; front/back; side/side; twist/twist. So I am very connected, aware, and touching and massaging my feet and toes all the time. My class commentary was that since my father was a podiatrist, my homage to my sweet Dad was our attention to our feet. This discoloration never hurt, never got bigger never got smaller, never bothered me. Was it a bruise? Was it just discoloration? I touched it, studied it, tried a few topical remedies, and was waiting for it to disappear. It did not.
At the end of my annual physical, I remembered to ask my wonderful doctor what she thought of this discoloration. She suggested I see a dermatologist. I got an appointment as soon as I could which was two weeks later. I saw a physician's assistant who looked at it with a bit of alarm and that was when I sensed this was a little more than I thought. He had me see another dermatologist that very day. This second dermatologist was one I had tried to see initially but she was unavailable for a new patient until November. I saw her that afternoon at the first dermatologist's insistence. I am forever grateful!
Dr. M. took a biopsy, stitched up that incision, and gave me my first full body scan. She took off a few basal cells and said the biopsy result would be back in a few days. I had never had a full body scan from a dermatologist before. We should ALL be checked!
DIAGNOSIS:
Three days later my result report was filed in my patient portal from Massachusetts General Hospital. I could not understand it, my dermatologist was not in her office, no one called me back, I was distraught because I did see the scary word: melanoma. I sent my lab report to a friend, who is a physician. She called me back to say I had Stage 2 melanoma and gave me an overview of what was ahead. This was at 3pm on Friday and no one was going to call me back over the weekend, although I certainly wish they had. I had already invited friends for a dinner party, oh. Cancel or continue on? I had all the food made, the table set, and a huge wrapped up biopsied toe. So they came. I told the what was going on. It was a night I have no recall because I was so distracted and trying to process it all. I was keeping it very private because I was mentally spinning. I had no time to figure out how I was going to move forward. I had not told my family yet. I was scared. I felt so invaded. That was the spark that ignited my processing. It was not a secret so much as a very private matter until I had some time to absorb the un-absorbable.
On Monday, my deeply apologetic dermatologist called and said she would get me to a melanoma surgeon as quickly as she could but it was possible that I would have a four week wait. UGH! Not so, three days later a scheduler called and I had an appointment in a week with Dr. T. , a renown surgeon and Harvard professor with a fantastic reputation. Even the scheduler said that he was highly regarded and sought after so I was definitely lucky.
I spent the waiting time researching all the possible options the surgeon might present, trying not to panic. I spoke with a friend who previously had melanoma. I talked to anyone I could that I felt safe around.
MEETING THE SURGEON
Just entering MGH again, after so many times with my husband Phil, who had a heart transplant almost five years ago, and now it was for ME! Taking the elevator to the Yawkey 7 was just intense. What was ahead now that we are here? As soon as we checked in, a young resident approached and asked if I would participate in a search study. I completely broke down. I saw the huge, glaring, bold lettering of this area, Cancer. I was in disbelief and truly overwhelmed. Phil was awesome, took me out to the hallway and totally took over as I just cried. Then my name was called....time to meet Dr. T.
His assistant was a lovely you woman who gently took my vitals and my blood pressure was higher than I have ever tested. Yes, I was stressed! I put on a gown and waited.
Dr. T. is a lovely man with a gentle manner. He gave me a thorough exam all over and then explained what was next. Fortunately, my niece, Staci reminded me to record the visit. He said that in order to completely remove the melanoma, he needed a clean margin. He drew it out. The clean margin was much larger than my infected toe. The toe would need to be removed. WHAT?????
He told me that this would not affect my activities, unless I was competing in the Olympics on the balance beam. He said to remember three things: 1. It's curable 2. It's curable 3. It's curable. He would perform the surgery and remove lymph nodes in my groin to see if the cancer cells had traveled. He said other information but all I heard was that my toe was going to be removed. I could not comprehend it. When I did, all I could do was cry. When I heard what he was saying all I could repeatedly ask..."Am I going to lose my toe?" He said yes, then continued talking of which I heard little of and then repeated my question. Yes, I was going to lose my toe. If the cells had spread, there was medication. We would know that after the surgery pathology report. What a shock! He said he would schedule the surgery soon and it might take a few weeks so not to worry. He wanted it at the most a six week wait. Oh boy! Within a few days, the surgery was scheduled the very next week.
WAITING
So I had from my March 14th visit with Dr. T to six short days later for my surgery on March 20th. It was all so fast, which was good to get it resolved. And it was almost too fast to get my head around. I spent a lot of time meditating and asking for all my melanoma cells to go to my toe and to be released upon surgery. I had Rieki, a massage at a Spa, an amazing Qi Gong healing, many tears, and great fears. I did tell my inner circle, my sons, other family and then more people about my circumstances. My situation was not a secret but just very private as I was processing, processing, processing.
It was like a pebble in a pond, each ripple was a bigger circle. I was very discerning about who I told because I wanted to protect my very fragile emotional state from any harsh, inappropriate (to me), horrified reactions. I really only told a few people and waited for others to reach out to me in a normal manner. I did go to a friend the day before and prefaced it with please do not react in any kind of hysterical manner. I did not want that energy. As I prepared, I looked and looked at my toe that was going to be removed. I said goodby and blessings, but I was frightened. I had no idea what to expect.
Those five days were a blur of getting ready. Getting food together, getting equipment from friends, and trying to stay calm. I had visualized that I would go downstairs in the morning and come up at night. That proved totally unrealistic.
I cried a lot. Phil cried with me. We were scared. We were unclear of what was next. I spoke often my kids, a few times with the grandkids, friends, and those who I chose to share my feelings with.
I spoke a lot to my family. My brother, his wife Mikki, and even my newest niece, Dr. B. I cried, I shared, and I was looking for guidance anywhere I could. My amazing support system was totally there for me and so very helpful in perspective and just holding the space for my tears and fears.
The days were counting down. I was deeply meditating and visualizing all my wayward cells were all going to my toe to be removed. I talked to my toe a lot.
I had a two hour Qi Gong session the day before. It was fantastic. At the end she said to me,"Say yes to any offers of help, food, etc." A dear friend asked me if I wanted to go to to a museum for distraction but I realized, listened to my body, and just needed quiet. Phil and I went about our usual dinner, watch TV, and be calm. We were getting up early for the day ahead.
BEFORE THE SURGERY
We got up, I took my shower, ate nothing and got in the car. I felt like I was going through the motions but this was not really my life. It was surreal. Got to the correct area, surgery, and could not even check it through my tears. Phil took care of it all. I went to nuclear medicine and waited. Finally I was called in. In nuclear medicine, a nice resident, had the best compliments for Dr. T. The nurse said 'Oh too bad about your pinky." And I was, "Please don't say that, it's hard enough." The resident injected me, painfully, with radioactive liquid that would show where my lymph nodes were to be removed for pathology. They told me to be still for 20 minutes. I said no problem...and then they started to talk to me. I told them I was going into a deep meditation and asked not to be engaged, and it was fine. I am so grateful that I have a meditation practice to allow me to focus on my breath, not the sensations.
Then we went back to the surgical floor and waited and waited and waited to be called. At about 1pm, we went to the pre-op area where Phil was with me all the way. I had a COVID test, put my clothes in a bag, waited and cried. I was overwhelmed with so much unknowing.
Then it was time... Said goodby to Phil, tearfully - yes lots of that! The nice transport guy took me to the pre-op area next to the OR, which I thought I would see before anesthesia. The resident of Dr. T. came in and started to chat while the anesthesiologist was also talking to me. He asked the resident to hold off and we spoke. The resident asked if I had any questions and said it must be hard to lose a part of my body, and it is. Then Dr. T came in. He placed the geiger counter on my leg to check that it was all in order and he could map my lymph nodes.
Dr. T was always very reassuring and calm.He told me the surgery would be a few hours. I asked him to say a little blessing over my toe, thank it for all the fun of yoga, dance, walks and take all the bad cells with it. He asked if I wanted him to say anything special, I said no, whatever he felt like saying. A lovely OR nurse was by my side and I asked her the same thing. Then the anesthesiologist returned. As I was asking him a question, I didn't finish the sentence. I woke up in recovery about four hours later.
POST OP
I think I was shaken awake by the nurses. I told them to call my husband and I was out of it!!! The nurses quickly got me up, helped me use crutches, gave me discharge orders, and when Phil came soon thereafter, I was put in the backseat with pillows for the ride home. It was obvious that I would not be able to make it upstairs so Phil called our neighbors, who were patiently and helpfully waiting on the porch. One had my leg, another held me under my arms, and who knows what else. I went up on my bum, got into bed and that was that!
RECOVERY
Phil so tenderly arranged the foam leg rest, my pillows, and gave me the meds I needed. I slept and I cried for so much. I cried because my body was so manipulated with heavy bandages on both my foot and my groin. I cried because I lost my toe. I cried because my body was filled with anesthesia. I cried because I did not know what was ahead. I cried for the loss of my healthy body and spirit of well-being I so cherished. I cried when I spoke to my family. I was overwhelmed by emotion and physical discomfort.
Friends brought dinner the first night. Another friend came to my room with dinner the next night. I don't remember much, just her loving voice. Meals, messages, cards, and flowers started flowing in. I slept in the same bed with Phil but was so aware that I didn't want anything to touch my foot.
I was using a walker, not crutches, as I felt it was easier to hop. Phil was by my side every minute day or night. He had to pull my pants down so I could use the toilet. He made sure I had water, pain meds, and his company that was so vital! I could hardly take a sponge bath as I was pretty immobile.
On day 3, the cleaners were coming so I moved, initially, to my office/guest bed so they could clean our room. Then that room became my 'Recovery Sanctuary.' I would sleep in our bed at night and move to this room during the day. As so many people brought and sent flowers, my desk became the 'Recovery Garden' that my dearest friend, Jean, was in charge of maintaining! I was surrounded by healing from friends and family, but most importantly, was under Phil's super attentive care.
Then a miraculous path was laid before me, and I took a deep dive. I had sent a massive email with my "Mourning to Light' broadcast. Dr. Anna Yusim responded that she needed some of my GYG serum and to check in. I told her briefly what was happening. She suggested I go to Joe Dispensa's website to poke around and look for a healing session. I found one the next day. I signed up, sent my photo, wrote of my healing need, and the next morning at 9am I was in the zoom healing. About 30 or so healers were on the zoom. There were six of us getting healed in groups of two for about twenty minutes each. During my specific time, my picture was on the screen with the other person designated. I don't know if everyone participated or select ones. It was a meditation recorded by Joe D. I don't know if I heard this from the meditation or from my own inner voice but what I heard was..."Find your inner healer and find your inner mystic." WOW! It was quite powerful.
My next step was google "Inner Mystic" and there is where I found Rabbi Simon Jacobson and his awesome discussions. I became an instant follower and have listened to as many of his teachings as I can, usually one a day. I just love the teachings, the Judaism, the deep dive into the mystical. My biggest takeaway to date is to see the world from the inside, spirit or soul, to the outside world. Not to see the outside world and how it might relate to my inner being, quite profound to me!
This led me to listened, study, meditate, and seriously journal my feelings, experiences, explorations, and epiphanies. And I continued to find more and more teachings on heal-in spirit, and more. I do appreciate the many videos and Web site easily available. I was not going anywhere so this was quite engaging. I looked at the stairs and they as accessible as the North Pole. I was immobile.
GRIEF:
My grief was a constant source of revelation and sorrow. I could not look at my disfigured foot. 48 hours after the surgery Phil needed to change the dressings on my fifth space and my groin. He most tenderly took care of the groin. The he took care of my foot. As he was removing that dressing, I went into my grief. I went so deep, so completely immersed, so totally in my body that I cried as never before. I deal with grief a lot. The grief of death of a family or friend is very much in the mind and the heart.
This bodily grief was so much different. I was totally in my body and at the most vulnerable, sad, overwhelming, and deepest place. It was a cellular level grief for my lost toe, a part of my body, my disfigurement, my loss. Just as tree roots support and 'speak' to each other, I felt the same thing. It was as if my cells were grieving for the loss. I was, as Phil told me, wailing as he had never heard. We both cried and cried. He held me and gave the space to just immerse in my loss. Then, and I have no idea how long that was, I was calm. I felt like I had cracked open. I felt lighter. I felt more peaceful. I felt that I had somehow released my deepest grief. I could now get on with this business of recovery. It was a profound moment that continues to affect me. I have had other moments of grief and loss, but none as deep.
It has been a very slow process for me to actually look at my foot, my fifth space, my newly designed body. I am slowly, with a prayer I wrote, with self-compassion, with a little pity party, and just feeling better, accepting what has occurred.
My Prayer to My Fifth Space:
Dear 5th Space,
Welcome to my body. We will be lovingly connected. We will find emotional and physical balance together. You are a gift and I will continue to receive your offering.
Lovingly,
The Rest of My Body
My loss, grief, and sorrow took up all the space within and around me. With each day of feeling stronger, that space is getting smaller, and I am resuming more of who I am aside from this most pivotal experience.
SPIRIT:
With my grief has come my existential crisis. Is it all random? Did I trigger this? What is my responsibility for this? Is there some meaning in all this? Is it just bad luck? Is there a message? I continue to ask with these questions from within. In my deep dive into the spiritual essence of my situation, I have a few insights. First, anytime I have gone to a medium, channeler, or seer, I am alway struck of the same description of my spirit guide. It is a man, well-groomed, closely associated with me. There are other descriptives and they all point to my father. My dad was also a podiatrist. My sister and I often said, 'Feet are our bread and butter," and we laughed. Also, in most of my yoga classes I focus on feet, verbally paying homage to my father. Is this a message from him. "Here is your challenge, notice it, take care of it, and be rid of it?" Could be.... and I would like to think so.
In my meditations, I call and thank my guides, my angels, the Divine energy, my beloved parents, my sister Susie, and best friend, Kaiya to guide me, protect me, and surround me. I believe that they do.
I have learned to look at this reality from the inside out (my inner mystic) rather than the external world influencing my internal world. I am a spiritual being having a human experience, not a human being having spiritual experience. That opens me to very wide exploration.
PAIN:
The groin incision was uncomfortable due to its location. I was hopping on a walker so that was a bit painful. My foot was throbbing at the surgery site. I was taking heavy medications. I was in la la land and enjoying it. I really immersed in pain as a sensation to be explored, not to be quickly dismissed and stressed about. I refer to my surgery sites as tender, rather than painful and they have greatly diminished in scope and intensity.
SUPPORT:
Hours before my surgery, I had a wonderful healing session. After that, she sat me down and told me to say 'YES!" Accept any and all offers of food, help, support. My natural instinct is to say not to bother, I am fine. But I did accept any and all offerings, and it has been fantastic! The outpouring from friends and family has been so beautiful. Close and not so close friends jumped right in to bring food. I am evidently well-known for a certain type of cuisine. We received lots and lots of vegetarian soups...hooray! Every text, call, card, flower, food, and visit gave me the love and energy to know I was cared about and cared for.
Having Phil as the most loving, gentle, attentive, and wonderful caregiver has been a true blessing. Yes, I cared for him during his recoveries. But this felt much more dependent, and I was. He ran up and down the stairs many, many, many times. He brought me tea in the morning and learned how to make the best cup of coffee for me. His over attention to detail, could be called OCD, is most appreciated in every respect.
MOVING ON:
Each day is brighter. I am able to walk more, do more around the house, feel less dependent and vulnerable, and get back into a productive and active lifestyle. I will incorporate what I have experienced and learned as I move forward. I am not sure of how I can share and help another but that is my next goal.