Day 4 – In the Middle

All of the news that is telling us that we are being chemoed to death is amazing! For me, there was a lot of social stigma around my diagnosis. I thought people would judge me because I had it. I had been socialized to believe that if I was cheerful, positive, and didn’t have and/or suppress anger, I would never get cancer. What a load of manure!

This is what I am learning: More people are getting cancer every day. More options for treatment that are just as effective, if not more, than chemo. Chemotherapy actually takes people to the edge of death and then drags them back to life – hopefully. Now we see on CNN that Canada’s cancer treatment is less expensive and has a better survival rate than ours.

Just this week it was announced that 70% – seventy percent!! – of women with breast cancer don’t need chemo. There is now a test that can determine the genetic marker to know what kind of breast cancer it is. (Please don’t hold me to the scientific terms. You can get that from the actual article https://www.cnn.com/2018/06/03/health/breast-cancer-recurrence-chemo-study/index.html. I am merely a survivor).

I’ve spent my life being afraid of cancer. When people see my bald head, many of them give me the head tilt and sympathy look. But I don’t think cancer is as scary as it once was. And from my experience, medical science doesn’t have all the answers – or even the right ones!

Still feeling energetic and focused. I only took one Tylenol today. The supplements I’m taking to support my body to bring it back from chemo and allow it to heal the cancer are working: All of my blood tests came back perfectly normal – right smack dab in the middle of the range of normal. I’m so happy some part of me is!

Day 3 of CBD Oil

A dear and longtime friend of mine has Parkinson’s. Over the next week or two, she will be starting on CBD oil. I will chronicle her journey as much as I can without being in her skin. She was diagnosed about a year ago, has tried natural cures, and finally began the medication. It has helped a lot, but she is having other issues now.

We all have to die, and I know that unless we commit suicide – something that I’ve considered at different points in my life and declined – we don’t have a choice over how. My friend has always been health conscious. It got to the point where she counted the leaves of lettuce she ate, she was in such control. Stunning to me was that she was diagnosed with Parkinson’s when I was the one who had done all the drugs, drinking, and partying when I was in my twenties; I was the one who could eat a Big Mac standing over the kitchen sink and believed I had dined. We both supported – and still do – organic farming and healthy eating, but I mixed my in with chili dogs and full fat, full gluten chocolate chip cookies.

I remember about twenty years ago when she had hurt herself, been confined to couch rest with a pretty serious injury, and then a few weeks later went to a dance workshop and danced twelve hours a day for a whole week. She wasn’t a dancer by profession, she just liked to dance.

Today I visited her, and she struggled to walk. She has my deepest admiration. It cannot be easy to watch your world shrink to your easy chair with the occasional outing when you at one time united countries. She was responsible for bringing several of her friends from different countries together socially. International museums resulted.

My mother always told us that if you took your troubles down to the market place, you would end up buying them back. For me, she was right. I have cancer, and I have pain,  but for now, I have mobility and clarity. No one gets out alive, as the old saying goes. When I hit my sixties, I knew that I would die. I prayed I wouldn’t live until 95 like my aunt did. She said it was boring and lonely and she missed my uncle. But getting cancer is forcing me to live like there’s no tomorrow, forcing me to choose to create the life that I want. Many of us don’t get that chance ever.

Day 3 of CBD oil was uneventful otherwise. I tried one of the lymph machines, and it’s just made the sides of my thighs ache. This will be published in the morning, but it’s night now and time for a glass of wine! Make it a great day, and I will talk with you later.

End of Day 2

I had a pretty busy and physically active day. My bones (pelvic and thigh) didn’t ache much. Sitting is a problem, but with the cbd, I was able to be active and focused. No nap. The trick is to take the second hit of cbd oil before naptime and work right through it.

It was a good move to take the supplements. Turns out that they are not for the pain as I thought they were. They are to support my lungs and heart so my body can heal itself. This makes sense to me. Years ago I learned that 80% of all diseases will heal themselves if you just give them time. That was referring to the repeated sinus infections I struggled with my first year in Atlanta. It was true. I stopped going to the doctor, and eventually the infections stopped.

Cancer is a bit more of a strain on the body, so it makes sense to me that the vital organs have to be supported. All in all, I’m pretty pleased. People tell me that bone marrow cancer is amazingly painful, and other than a pain in the ass – literally – I’m doing fine.

Sleep tight and thanks for reading!

 

CBD…The Experiment Continues

This morning I did cbd oil and included the supplements that my practitioner gave me. Since I’m not sure what is fighting cancer and what is fighting pain, and I need to be productive, I’m taking everything. I will do the cbd alone in a week or two.

I do know this: When I take the cbd oil, I am more energetic, focused, and productive. For me, it’s good for about 8 hours, so I take it on getting out of bed. In the afternoon when I lag, I take a 15 minute nap (I am, indeed, a power napper. It’s a talent!). When I wake up, I take another cbd so I can have a productive evening. Both a schedule and being productive make me feel normal. At the age of 6 I started pushing a lawn mower to make my own money and having stopped working since. The cbd oil helps me do what I want and need to do.

And it doesn’t interact adversely with my wine at the end of the day. I’ve been taking acetaminophen with wine to sleep, and all of the warnings say that it’s better to refrain from alcohol with acetaminophen. Now I don’t have to worry about that. Very important because I schedule my life: Coffee in the morning before anything; cbd oil; chocolate in the afternoon; cbd oil; wine after everything. It’s good to be organized, don’t you think?

Letting My Hair Grow Back

It’s gonna be hard growing my hair back! Two reasons: 1. About three weeks into the growth, I start to look like a porcupine. A white porcupine with dark and white stubble, but I look like I’m still bald where the white hair is. Not a good look. At this point, I am shaving weekly.

When I started losing my hair and was looking at wigs, the ladies at the wig shop told me I needed to keep about 1/4 to 1/2 inch of hair, or the wigs and hats would itch. Obediently I let them cut my hair, then put my chemo hat on and went out into the world, praying I didn’t have to take that sucker off in public. I looked raggedy! And those little hats screamed ‘Cancer!’ to me. I was miserable, hot, and itchy.

The best thing to happen to me about my hair is that the wig I ordered didn’t fit. My cheekbones are high (Czech blood). I had to decide: people looking at me comfortable vs. ME feeling comfortable. We know by my profile picture who won. I put my chemo hat back on to cover my stubble and left the wig shop to consult my resident expert: my neighbor Roger. He has been shaving his head for decades and makes sure I wear a hat in the sun when he sees me (I keep a hat in the car just in case I see him first!).

He plopped me into his car and took me to the local barber shop to get clipped. There I also met Walter, the man in front of me during our wait for the barber. Walter said he comes back every three week for a buzz. I wish! My hair grows fast. My reality is that I start looking skanky at the end of every shaving week.

Through lots of conversations with bald friends and strangers, I learned that I didn’t have to pay $20 a week to get my head trimmed. My neighbor and new bald friends coached me through shaving my head myself. I tried razors geared toward men, toward women (is there really a difference other than color and the fact that anything for a woman is more expensive?), soap, shaving cream. I worried about cutting myself and having to wear a bandaid, so I couldn’t get a close enough shave. Now I’m using an electric razor. My neighbor says the best way to go is a six-bladed manual razor, but that sounds like danger to me. I’ll have to screw my courage up for that one!

The second reason is that I like the attention. No one went out of their way to talk to me like people do now. Even babies! Babies claim me as one of their own. They talk to me like they expect me to understand. Yesterday at a coffee shop with one of my friends, we met a baby. My friend is cute, friendly, and has shoulder-length hair. We both talked to the baby, but when the baby looked at my friend, nothing. When the baby looked at me, she smiled and talked and drooled. It happened several times. It’s a hoot!

People stop me to talk to me, follow me around. It’s amazing! So in addition to looking scraggly, when I grow my hair back, I’ll just have hair again. Not many people look like I do right now. Most people assume it wasn’t a choice and want to offer me support. That part’s lovely. I guess I can wait until fall and decide!

Family

I want to honor my cousin who so very graciously talked about my giving her mother, Aunt Ro, Divine Light before she died. Actually, my aunt went into remission for several years after but felt the Light hadn’t worked for her because she continued to smoke cigarettes. My Aunt Ro had breast cancer and didn’t tell us until it had matasisized. My understanding was that she was ready to go and no way in hell was she going to do chemo. It’s hard for the people who love you to understand how you can be willing to let go when, if you were just willing to endure chemo, you could be around for many more years.

I don’t know how light-hearted this post will be. It does, however, have a happy ending. I’m going to try to explain it from my point of view. I don’t know if my aunt would agree with everything I am going to say, but at least there will be one point of view from this side of the fence. The difference between us is that I didn’t have any children.

At 50 years of age, my values shifted. I was aware that I was going to die in a finite period of time, that I was no longer bulletproof. It was a matter of how long and how. As someone who is on a spiritual path and has been for over 30 years, I believe in the existence of a soul. This life I’m living now is only one of many. Since I believe in God, I believe that I no matter where I go, my soul will always be in God’s Care. Please don’t confuse this with ‘I am always with God.’ More accurate would be to say that God is always with me. I do my best to be with God, but I don’t promise that I’m even close. My job is to try.

But living in this physical dimension forever has never interested me. When my Aunt Dot turned 95, the aunt who astonishingly encouraged me to divorce my husband (Aunt Dot was married forever), I asked her if she was going to have a party. “Honey? Who the hell am I going to invite? All of my friends are dead!” “Aunt Dot, do you like being this age?” “I really don’t, Susan. I am bored, and I miss your Uncle John!” Fifty-one weeks later she died of congestive heart failure.

There are two things that scare me: 1. Being bored and being unable to do anything about it; 2. Being held against my will.

I can’t stand not to be active. In addition, two of my friends in their early seventies have been diagnosed with Parkinson’s and Alzhiemer’s. It makes no sense to me to struggle to live long enough to get something in addition to or instead of cancer. And chemo can cause blindness and autoimmune diseases. It’s one of the most barbaric things I’ve ever experienced, and I’ve been held at gunpoint for hours hoping just to live through it.

Not being able to take care of yourself puts you at the mercy of your caretakers. That is not acceptable to me. My goal has always been to live to 75 so that I could start smoking cigarettes, marijuana, eat cheesecake at will, not exercise, and not keep up with technology. Anything beyond 75 is suspect to me, and I sure don’t want to have to do what others tell me to sustain it.

At 66, I’m nearing the home stretch, just now being able to let go of so many ideas about how life was supposed to be lived so that I can live my truth (really and truly, my truth includes tobacco and cheesecake. Oh, and hard liquor.)

And being brought up in a life of violence takes its toll. It seems sometimes that I’ve spent most of my life trying to overcome that. My mother told me stories about their childhood. My aunt and my mother did everything they could to make our lives better than theirs was – their father died of severe alcoholism, and I don’t know about my cousins, but my siblings and I tortured our mother. Not on purpose, of course, but we were bright, bratty kids who challenged her at every turn. My mother’s doctor occasionally sent my mother to the hospital for a week just so she could get a chance to breathe and to hear inside her own brain.

I’m ready for a break from the struggles, and at 66 I’m finally beginning to let that go. There’s nothing left to prove. Now there’s the enjoyment that comes from looking back at your successes and seeing what you want to do next. There aren’t a lot of ‘have tos’ or people depending on you. Chemo was really going to mess that up for me, so I decided to pursue other avenues with the awareness that it might be time to go no matter what I do, but at least I could be healthy and happy. I am both.

 

Rock Star!

This bald woman is rocking it at the grocery store! Really. I had men follow me up and down the aisles to talk to me. I might have to get a wig just so I can get in and out of the grocery store more quickly! But for the first time since I lost my hair, a man asked me if it was genetic or choice. It felt so good! Two of the men wanted to tell me about their family members experiences, and the others were just outright flirting. Sigh. I enjoyed myself immensely.

When I was little, I hated going to the grocery store with my mother. She took forever! I can still see her reaching for bacon in the refrigerated case, and fifteen minutes later she finished her conversation with the other person reaching for the same brand of bacon. My mother was pretty, charming, and vivacious. She used her power to make people feel included. The only perk involved in going to the grocery store with my mother – I sure wasn’t getting a treat – was that I got to see who was going to show up at dinner that night.

My mother ran our home like the Salvation Army. She invited neighbors, friends, and we would sit around our huge dining room table, six kids, my parents, and the people she had snatched up from the street or the store. She wasn’t really a great cook, but she knew a lonely person when she saw one, and I’m sure being included made the food taste better. Then again, I don’t remember a lot of repeat guests…

And now I am my mother, especially with this shiny bald head. When I had blonde hair, I started conversations with people. Rarely was I approached. Oh, maybe I’ve turned the world into my mother! Gasp! But the support and love I have received has made me reach out to others more, and being bald is a great conversation starting. So is having cancer. There is a whole subculture of people, most notably women because in our culture it’s more normal to be bald as a man, who are bald due to chemo. One of my friends even brought me a tube of some stuff that is supposed to help hair grow back. I’ve used it only once, mostly because you have to leave it on your head for three minutes. Holding still is not my strong suit.

Don’t be afraid to be different, my cheeky little monkeys! That’s where the sweet stuff lies. And use your difference to make others feel happy and included. It’s the way to a rich life.