Somewhere In Between

This is my personal story of my healing journey. I am not a doctor or health professional. If you are struggling with health issues or you have a loved one who is, I hope you will find comfort and perhaps hope in my story. I intend to keep it true, honest and written from the heart.

Note to reader: The most recent post will be first. Scroll to the bottom to read from the beginning. 

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2/5/19  Sorting Through Acceptance

The timeline of events is beginning to become a blur. Now I understand why people write about their illness. When it all becomes unmanageable and you can no longer remember what happened when, there is a sense of security in knowing you can just record what is now and be able to read it back later. If I had been diagnosed with Alzheimers Disease, I would want to know who I was. I would want to have a good story to read about what has been lost in the memory. I read recently that a man who had gone through chemotherapy was experiencing memory loss. This is what brings me to writing today. I have a few quiet hours to go back in time. I will record what I know, all that I can remember. I am clear of mind and I am not in a place of fear, at least for now. I feel that this makes for a sublime opportunity to take a look at how things have led me to this moment.

My first exposure to breast cancer was through my Grandmother. Grandma Kelso was a a vivacious, strong, independent-minded woman. She always worked. She loved to dance. She sewed and crocheted. It was an economical way to create clothing, but mostly she did it to soothe her wild spirit. It gave her focus and she loved making things pretty. Whether it was a jumper, a cozy blanket, or a fantastic table setting for a dinner party, she created in the name of beauty first. She was not shy about her creating, if fact she was not shy about anything. She loved it when people fawned over her creations. She would often be the one to start the praise. “Isn’t this a beautiful setting? Doesn’t this taste delicious. Oh, I’m so pleased with your outfit, it just looks so darling on you!” With each word, I swear that golden beams of light came shooting out of her body. When I think of Elma Kelso, I see the color yellow.

When I was 10 (1980), my family went to the beach one summer to Delaware. Grandma had come all the way from Florida to join us. I remember I was laying on the bed resting when she walked in from the shower. She didn’t realize I was there, or maybe she did, but I remember her complaining about her surgery. She had had a mastectomy earlier in the year. I didn’t even really understand what all of it meant, but she really wanted to show me her scar. She told me how awful the radiation therapy had been. How her skin felt so tight and burned all the time. I don’t think I understood at the time why this had happened to her. I think I assumed it was part of getting old. She was known for being very open about her body and her dislike for certain things about it. She also expressed a great deal of lament over the fact that she had plucked out all her eyebrows in order to draw them on as was the fashion, and that eventually they never grew back. She always warned me not to pluck out my eyebrows. I obeyed her wisdom, except for the occasional wildly rogue ones.

A few years later, Elma and I broke our wrists at the same time. I have a great photo of the two of us holding up our casts over some holiday when she was visiting. Broken or healed, Grandma was always a fighter. In fact she could be pretty mean at times, but she was never mean to me. I can still hear her voice now, “Bonnie, gettin’ old sure is hell.” Then, perhaps after seeing the shock in my eyes, she would grab me and give me a tight squeeze.

I can see now that this written account of events may become more than a medical journal. If you want to move on to something more helpful, I totally understand. Or, if you’re like me and you relate to storytelling better than data, please, my soul friend, read on!

When I was a teenager, my Mom was in her forties. She said that that was when she had a breast cancer scare. She found a lump and went to her doctor, who very quickly ordered a lumpectomy. I thought that the results were benign, but maybe there was cancer lurking there somewhere, because now she is about to turn 80 and she has had  malignant skin tissue removed. My Dad also has skin cancer, melanoma, and has been dealing with it for about ten years now. He periodically has lesions removed from his leg, face and arms. My skin is much like his. Very Scottish. Pale and easily burned.

I have definitely had my share of bad sunburns having spent a lot of time in the Florida sunshine. Some of my family still lives there. My Grandparents all lived there, as well as my first Aunts and Uncles and a whole slew of cousins. It was probably when I got into my thirties that I really started to actively use and reapply sunscreen on a regular basis. Now I live here in Las Vegas. Again, the sun is strong. I have been burned a few times, but not like when I was a kid. I remember once, my little sister and I were visiting Grandma and Pappap Kelso and they took us to the beach. It was later in the day, so they didn’t realize how exposed we were. We were jumping in the waves for hours. The next morning I had huge blisters on the upper middle of my back. That was the worst sunburn I ever had. I was probably eight or so. My grandparents felt awful about it. I remember my Grandmother putting raw aloe from her garden on it to help it heal. I couldn’t sleep on my back for days. I can still remember how it felt, the tight pinching of my skin and the unending heat.

Grandma Kelso eventually had a recurrence in the form of bone cancer later and passed away at age 91. Recently, my parents were talking about how she had also had her thyroid removed when she was in her forties. They think it may have been cancerous, but there’s no way to know, because she didn’t like talking about cancer. She only wanted to show you the scars. My maternal Grandmother, Dorothy, also died of cancer. She had lung cancer. She was a long time smoker and also had tuberculosis as a young woman. I adored her. We would go to the beach and walk on the sandbars looking for “critters.” We would return with a bucket full of shells and then boil them. Then we would investigate with great wonder the alien bodies that had slipped out of their shells.

When I was studying Reiki about five years ago (2014), my Aunt Judy (my mother’s sister, aged 68) discovered a lump in her breast. I remember she said it was hurting quite a bit. She already knew it was malignant and she was scheduled for surgery. I gave her long distant Reiki and I could feel a pinch in my own left breast when I did it. I asked her if it was in her left breast and she said that it was. I assumed that this was a physical affirmation of some sort that I had seen her cancer through my energy. Perhaps I did. But, also I think I was sensing my own tumor. My surgeon says that a lump as big and slow-growing as mine has most likely been there for ten years or more. As a master of Reiki, I do not believe at all that I caught my cancer from my Aunt. I do believe that Reiki was sending me a warning message through my own body.

My aunt had a lumpectomy followed by radiation and oral chemotherapy. Four years later her cancer would return. This time she went through traditional chemotherapy. She had been a long time smoker, like her mom, and the cancer was in her lungs, shoulder, and torso. When she passed away last March (2018) she had cancer all throughout her body. The doctors couldn’t even identify what kind of cancer it was because the biopsies could not determine a source marker. I went with my Mom to see Aunt Judy one month before she passed. I was there in February with her for a week. She was declining fast and was hardly able to eat. Our big adventure was a day to Butterfly World. For a long time, the blue butterfly has been a symbol of the presence of my Grandmother, Dorothy’s spirit. It was very hopeful to be around all of those beautiful butterflies. My mom, my uncle, and I all went with Aunt Judy for her second opinion appointment, but the doctor said she was too weak and malnourished for any further treatment. We called hospice and they started her on morphine to try to make her comfortable. Having never been on any sort of medication before all of this happened to her, she never took as much as she needed and was in tremendous pain.

I realized during that experience that the people who are taking care of the person who is sick, are grieving.  They are not always the best of help. Everyone is experiencing their own stage of grief. Each day can bring you a new spin on grief’s wheel of fortune. What one of you hits on: denial, anger, bargaining, depression, or acceptance, most likely won’t be the same one your relative hits. There’s really no order to these things. They can bounce around from day to day, even hour to hour. It’s not just the caregivers either. As I know now as one who is sick, the person with the disease is very much in the game of grief. My experience has been more like a pinball machine. Emotions ping to different states of grief. The whole “stage” thing I find inaccurate, because it implies that there is a logical order to this process.

Some even say there are two additional states of grief: shock and hope. Even these don’t even seem to go into a logical order. As much as we want to package our grief and navigate our way through it, it really does have a mind of it’s own. The shift can ambush you at any time. Of course there is the delivery of new information. This can lead to a sudden shift. These past few months I have been trapped inside that pinball machine. Today, I am feeling acceptance and that is why I am able to articulate well enough to write my story. This is the first day since the holidays I have felt able to do this.

As I was mourning my Aunt Judy (spring 2018), I began to notice a weird spongy thing in my left breast. My left breast had a benign cyst in it at the time I was nursing my youngest son (2012). The surgeon who performed my C-section, Dr Pierce, felt it in a followup exam. I had an ultrasound done and it was deemed non-threatening. I couldn’t even feel that one, because my breast tissue is very dense anyway and I’ve always felt weird stuff going on there. I have had mammograms every year since 2013 and none of them showed anything except that I have dense breast tissue, which I know. But now I was feeling something kind of new. I realized it was a real problem when my partner noticed it. This made me believe that it was not just my imagination.

I could have taken action sooner, after realizing that something was there. It’s one of those, “if I only knew then what I know now” things. Taking action meant finding a new doctor, because I had once again changed health insurance plans. I was on a new plan every year from 2013 – 2018. I thought that I wouldn’t qualify for an exam until a year past my last one. By August I could tell the mass was getting bigger. That’s when I went into action. I made an appointment with a Internal Medicine Primary Care Physician that took my new Medicaid health insurance. I was on the phone for a long time with the insurance agent to make sure I could find a female doctor that was in the network and not too far from home. That’s how I found Dr. Fathie.

I went to see Dr. Fathie in August. When I was waiting in her small office, I could hear muffled voices in the other rooms. From what I could gather, she was very thorough and not the kind of doctor to rush through your appointment. I waited three hours to see her. I suppose I might have gotten really upset by that, but somehow I knew I was supposed to be there. The room I was waiting in had only one framed poster in it. It was an enlarged image of a big blue butterfly.

I love my Dr. Fathie. I went in for a mammogram on September 26. It showed an abnormality. I had a follow up sonogram and second mammogram on December 14. It showed a 3cm lesion. Now I know that when they are measuring in centimeters, you’ve got a big problem. I had a core biopsy on the day after Christmas. A week later (January 4) I was informed that it was malignant and referred to a surgeon (Dr. Shirley) at Comprehensive Cancer Center. They were not able to give me an appointment until January 11. On that appointment I was told that my cancer was Stage 2 Invasive Ductal Carcinoma with the following markers: Estrogen +, Progesterone +, and HER2 -.  I turned 48 years old last October. I am very perimenopausal, which means I get my period like twice a year and am constantly hot flashing. My body has become a foreign place to be.

Now, that I’ve blurted out the diagnosis, let me backtrack so that I can take a look at my mental state through those few months. Denial, most definitely. I’m too young. This can’t be cancer, right? Even my relatives didn’t have cancer at a young age. In cancer world, apparently “young” is less than fifty. I find that fascinating. I do have to admit that since last spring I have been really, really tired. Now I see that this was another red flag, but I just figured it was because I was getting old. I mean, Grandma always said, “gettin’ old sure is hell.” My back hurts, has been hurting for a while. I was disco dancing with my six year old, and he cranked my back. I thought it was just taking a while to heal. But it aches, all over my mid back area. It still hurts after I’ve been erect for a while. If I lie down for a few hours it feels better, but then as soon as I’m up again, the clock is ticking on how long I will last. I knew I was in trouble when the ultra sound technician gave me that very empathetic look and started asking me questions about my lump. They can’t tell you anything, which in some ways I find comforting, but in other ways annoying. I mean, I do want a doctor to take a look before a tech starts giving me a diagnosis, but I mean lets face it, these technicians usually know what they are looking at. Especially when it’s 3 cm! She was my first ice breaker. Okay, at that point I knew I had cancer. I was starting to prepare myself. What I couldn’t prepare myself for was all the endless waiting. The longer you wait and are unable to take action, the more you can literally feel the cancer taking over your body. It is a helpless feeling.

My doctor called me on a Friday night from her cell phone the weekend before Christmas. She had already scheduled the biopsy for me, because she didn’t want to wait and have it pushed back further. Good call, Dr. Fathie, and thank you for that. I remember standing outside the noisy BJs Restaurant under the full moon in Cancer, and thinking, “This is it. I have cancer.” I was literally staring at the moon as I talked to her.

If you’ve ever read my blog you will know that I follow astrology. I find it fascinating, incredibly accurate, and insightful. There is a woman I’ve been following through all of this. Molly McCord. Her reports and insights have been like a galactic unfolding of all the energies I’ve been feeling over the past six months. It’s been like a road map, for what is coming and how best to prepare myself.

I believe in Divine Timing. I know that I should have acted sooner, because I didn’t realize that once you find the lump, there is a series of hoops you must jump through and worse, attempt to schedule in order to jump through, before you can even begin any kind of treatment. This is how Stage 1 Breast Cancer, becomes Stage 2, 3, or 4, before you even have your first surgery or dose of chemistry. It is now February 4, and I haven’t started treatment yet. I forgot to ask my surgeon, but I’ll find our tomorrow, what my Stage is now. It’s been detected in the lymph nodes and has grown to over 4cm so I’m pretty sure I’m at Stage 3 now. I know this all sounds awful, but for me, spiritually and emotionally, I needed that time to come to terms with the fact that: I WANT TO LIVE.

Deep breath here.

Last summer was rough for me. Not only did I lose my Aunt, but a good friend of mine who I’ve know since I moved here to Las Vegas (12 years ago), Karen Wheeler, past away in early June. I was grieving the loss of two important people in my life. I was also facing the fact that my business has failed and preparing to close it. I became estranged from my older sister who was going through her own difficulties and had made it very clear that my help was unwanted. I was fed up with the hot flashes and restless nights. I just wanted it all to end. Honestly, I was lost. The only thing that was keeping me together on a daily basis, was the loving support of my life partner and my innate desire to care for my kids. I focused my energy into writing and illustrating my book “Ever Open.” When I was finished, I was terrified to share it with anyone. I still haven’t shared it publicly with a group. I was in deep depression. Slowly I was digging my way out, as naturally as I could. A while ago I had stop drinking alcohol on a regular basis, but in August, I stopped even having one drink from time to time. Alcohol does not agree with my mental constitution. I avoid it now like poison. After several months of complete abstinence from alcohol, I feel mentally stable again. It’s a good thing, too, because now I’m coping with a deadly disease. So, I guess my point is, that if I had been diagnosed last summer, I probably wouldn’t be feeling as strong as I do right now.

It’s strange. I’ve been diagnosed with cancer, but I feel better. Don’t get me wrong, it’s been a process. When I first knew for sure on the 4th of January, when I say the “cancer bomb” was dropped, I cried. I woke up every night in the middle of the night crying for about a week. It didn’t help that I was having trouble scheduling my next appointment. All I could think was, “I can’t die. I have to watch my kids grow up. I want to be there. I want to live long enough to be an empty nester and retire to the countryside.” I was in a panic. I tried to stay positive and make jokes, but on the inside I was afraid. I instantly knew personally what I had sensed intuitively in my Aunt. I felt unsafe in my body.

Once I realized that I didn’t want to die and truly wanted to live, I wanted revenge on my breasts. As ridiculous as this sounds, I felt betrayed by them. I wanted them cut off and burned, taking all the cancer with them. How naive was my thinking, but you can’t rationalize it, only observe your thoughts sometimes. Of course now, I know that breast cancer is a whole body disease. It just shows up first in your breast. But I had a vision of myself, flat chested, running fast and free like a man. At my first meeting with the surgeon, I told her I wanted to be as aggressive as possible with treatment. When I spoke to the genetic counselor, I told her the same thing, and she agreed. Then I spoke to my massage therapist (on January 18).

I call Lynette “the Goddess.” She is beautiful inside and out and as kind and thoughtful as an angel. She has been giving me infrequent massages for years. I’ve never really felt I deserved it enough to go on a regular basis. This perspective is starting to change. She is amazing at what she does. Now she has become an advocate for me for natural healing. Without her, I would be probably overdosing on junk food and binging on ice cream every night to help ease my stress. I have a tendency to emotionally over-eat. The morning before I went to see Lynette I watched a YouTube video about people who had treated their cancer naturally. The woman being interviewed had met up with Dr. Lorraine Day. She joked about carrot juice but admitted that nutrition was a major factor in her healing. Online, I also found a naturopath in Arizona who was using a Rife machine to treat cancer.

When I showed up for my massage appointment Lynette asked as she usually does, “So how is your body?” I took a breath and said, “I have breast cancer.” I’m still trying to figure out how best to tell people. My delivery really needs some work. She said, “Have you heard of Dr. Lorraine Day?” I told her that I had just learned about her earlier that morning. That gave Lynette goosebumps. I asked her to use the tuning forks on me, because I was feeling like sound therapy might be good. During the massage she hit the tuning fork a few times. Every time, I felt the sound waves moving toward the lump in my breast. She did it from all sides of my body, but every time she hit it, I felt a ripple of energy move through my body and terminate at the tumor. It felt like the sound was drawn directly to it. After the massage, Lynette said she had received many messages for me. We sat down and she told me that there were some rambunctious teenagers in my house (free-radicals) and they were doing drugs and misbehaving. That I needed to set some boundaries and show them that they are loved. I asked her if she knew that I had been working with teens in recovery, but she didn’t know that. I said, “I know who these kids are. I can see their faces.” Lynette said she wanted to go on this journey with me. She wanted me to come see her every week, free of charge. She gave me a stack of Lorraine Day CDs and books to take with me. She also showed me that she had a Rife Machine. She said she would go over it the next time we met.

I went home and did my homework. I started that very day juicing carrots and cut out all soy, dairy, sugar, and meat. I cooked quinoa, sprouted wheat bread, oatmeal, fruit and veggies. I blended smoothies and was drinking 32 oz of fresh carrot, apple and sometimes beet juice every day.

I’m still doing this, though, today I splurged and had two slices of roast turkey breast at the buffet. I want to approach my diet and nutrition cautiously and intuitively. My intuition told me to have a high lean protein meal and that every once in a while this will be okay. It has been over three weeks of vegan diet. Tomorrow I will go back to vegan for as long as my intuitive body tells me to. I am preparing my body for surgery and for the fight yet to come.

After a few days, I was ready to start the Rife Machine. Lynette brought it to my creative workshop and gave me a primer. It’s pretty straight forward. You just plug in the cancer program and it runs for an hour. Then you do the detox program which runs for a half hour. I use the patches sometimes on my chest for the cancer program, and mostly I use the hand held wands for the detox while I’m lying down resting. It feels fine. I can feel the buzz going into my hands more than when I use the patches. I figured that since breast cancer is a whole body disease, I should use the wands every now and then for the cancer program, too. Some days I do it twice, but most of the time I use it once. I don’t feel the tumor decreasing in size. In fact, it seems to be growing more uncomfortable. The surgeon says it’s just pressing on nerves. So, I continue to use the Rife. If nothing else, it forces me to relax and lie down more than I normally would.

Other things I have done to make my life less stressful. I have stopped pushing myself so hard to work. I called my part time substitute job and told them to make me unavailable for the rest of the school year. They were super awesome about it when I explained what was going on. I didn’t want to quit, but I just needed to destress for a while. They told me to let them know when I was ready to come back. This took a huge pile of stress off of me. Since the nature of substitute teaching is usually very last minute, there’s little time to plan and get my own kids where they need to be so I can be at the school on time. Not having to coordinate all of this and hustle on those days has made a big difference. I can’t believe I was doing it in the first place. I may decide to return some day, but that is still undecided right now.

I closed my business. I stopped worrying about blogging. I’m just letting a lot of that hustle go. Last summer I left Facebook permanently. I immediately felt better after that. I realize that if there is anyone I need to get in touch with, I can through someone else. That’s been my method. It’s very old school and it feels more authentic anyway.

This brings me to friends. I have several friends who have already walked this path. They are a rich source of inspiration and encouragement. One friend took a long hike with me to talk about the ins and outs of her procedures, another sent me helpful books to read. A girlfriend of mine named the tumor Stella. There are still a few people I need to talk to, but it can be exhausting just having those conversations, as important as they are. All in good time.

Last week was pretty intense. All of my diagnostics came in at the same time. I had a Breast MRI on Monday, two Cat Scans on Tuesday, the Genetics Counsel on Wednesday, a Full Body Bone Scan on Thursday, and the follow up meeting with my surgeon on Friday. The good news is that I don’t have anything unusual growing outside the original tumor area. My DNA is perfectly normal. The bad news is that the MRI showed a secondary growth attached to the first which was undetected before, making the tumor a whopping 4.1cms. Yes, Stella has a friend. Dr. Shirley wants to do a lumpectomy of February 20 at Sunrise Hospital. It will be a 7:30 am arrival with surgery at 9am. This is the day after the FULL MOON IN VIRGO. The moon will still be in Virgo and the stars are looking good. Lots of harmonious trines and what not. It feels right. Like the best next step. I realized that as much as I want this to be healed naturally, I have real world responsibilities that I have to honor. I owe it to my children to take appropriate action. I’m at the end of this possibility window for a lumpectomy vs. adjunct chemo or mastectomy. Dr. Shirley seems to lean conservative. She did say that my breast will be much smaller than the other, but I WILL have a breast. Hard to say what kind of sensitivity will remain. For some reason I trust her, so I’m going with it. She wants to have the tumor analyzed before they determine chemotherapy, but radiation will be a must. This upsets me a lot, because she talked about full half-chest radiation over 5-6 weeks. That is a lot of burn. I will be meeting with the Radiologist after I heal from surgery, so at least I have a break before I have to cross that hurdle. I keep thinking of my little pale body being burned in the Florida waves. I am worried about the future prospects of getting melanoma from this “therapy.”

I have some time to prepare at least. Surgery seems to buy me some time. Stella will have to go. Lynette told me to send her lots of love. She wants Stella to “get her groove back.” I talked to Stella. She said she was only the whistle blower. This made me think of Snowden. There is something very wrong in my body and I need to use all I’ve got to make it right again. But I can’t act out of fear or pressure from others. I have to know inside myself that whatever I chose to do is the right next step for me and my family. This means spending time connecting with spirit. This morning was one of those days. I walked out to a point in Red Rock Canyon where you can face south and see the sun. To the East lies the city with all its unnatural neon glowing lights. To me this represents toxins, radiation, and chemotherapy. It’s never far from my thoughts that the Nevada Test Site is just miles away. Perhaps what made me sick in the first place, may become the same thing that heals me. To the West are the mountains, Wilson, Rainbow, and Bridge, my spiritual source, nutrition, and healing modalities. Reiki, exercise, walks in nature, placing my feet on the earth, meditation, yoga, nutrients, and creating. There’s so much I can do to strengthen and nourish my body mind and soul. This harmonious balance is what must become my priority. My hope is that both the West and the East together will help bring me back to my glowing sunny self.

EastToWest