cancer – Sassy Dreams Awake

CANCER, commentary, Grief, holidays, Pandemic Social Distancing, Uncategorized

In Like a Lamb, Out Like a Lion

Posted on December 31, 2020 by sassysheisme

I can’t believe we are at the end of 2020. I started off the year by choosing “Roar” as my One Word 365 choice. Little did I know I would not be the one roaring my way through the year, but COVID 19 would instead.

Today is social distancing day 291. Trying to bring my thoughts together is difficult, simply because the circumstances of my life haven’t really changed from day to day. I had so many plans for my staycation, but mostly all I’ve done is survive. That, my friends, is a worthy goal achieved. Don’t let anyone tell you differently.

Last night, I took a late call from a friend who lost her mother to a savage, quick-spreading cancer. We talked about all COVID had taken from us, robbed from us in broad daylight. Though she was able to have the final, precious moments with her mother, her confidante, her best friend, she was robbed of all the moments she could have had if she had been able to visit her in the hospital the last few weeks. My aunt could have had her family visit her and not leave her wondering if everyone was dead because they weren’t coming to see her. My aunt didn’t understand. My friend doesn’t understand. I don’t understand.

None of us understand.

COVID has robbed me of visits, precious time with my family. Some aren’t getting any younger, and some are getting older at a pace that if you blink, so much is missed. Kids are missing the camaraderie of choir, sports, clubs, and special dances. The adults are missing some semblance of preciously needed down time. Others are missing company. We are all missing something.

Yet there are still people out there who complain about masks or doing anything to prevent COVID for their neighbor. Even if it was only symbolic and not effective, as they claim, they still show their selfishness putting their supposed inconvenience against showing they care for their neighbors, their families, OUR families.

One of my childhood “Dads” passed from COVID recently. Two more adults from my childhood have died as well in the same time period, and while they may not have passed from COVID, COVID is robbing the families of proper funerals, robbing them from the normal first steps of the grief journey.

Compassion is free. Kindness costs nothing. Empathy means you are emotionally mature enough to realize it’s NOT ABOUT YOU because you’ve felt someone else’s pain and you can understand what someone’s going through. Our country is full of people who cannot muster any of those three emotional states or actions. That’s one of many frightening revelations COVID has shown me about America in 2020.

I am hopeful, that as vaccines are distributed (disturbingly slow) that COVID, the great thief, becomes COVID the great professor of how to human better. Many lessons yet to learn, many battles yet to fight, but we made it to this point in time. A time to look back (20/20) and a time to look forward.

I haven’t chosen a “One Word” for 2021. I don’t know if I will or not. After all, I chose the voice of a lion for a year that began hopeful and bright that turned into a roaring storm that has tossed me about while staying rooted in the same place for way too long. I need to think more carefully and reflect on lessons learned in 2020 that began like a lamb, and is ending as a rain-soaked roaring lion.

Activism, advocate, badassery, CANCER, death, Equality, movies, pop culture

Goodbye, King

Posted on August 30, 2020 by sassysheisme

When news came late Friday night that Chadwick Boseman, the actor who played King T’Challa in the Black Panther and Avenger movies, had died at age 43, the news hit me harder than I thought it would.

Boseman had been battling, unbeknownst to most, colon cancer for four years. This time had included the time he was working on the Black Panther movie. If you haven’t had cancer or a serious, debilitating illness, it’s difficult to appreciate what I consider to be a truly heroic effort to portray a hero. Each time cancer takes someone young or inspirational, I’m reminded I need to embrace more of the remaining life I’ve been given to live. This death cut me to the core. I’ve so much left to do.

I remember when the Black Panther movie came out and so many people of all races and lifestyles came out of the theaters crossing their arms in the “Wakanda forever!” sign. People of color walked out of that movie changed and inspired. Young black children finally had a Marvel superhero on screen that looked like them, that they could identify with. Someone strong, caring, extraordinary and human.

I was also inspired by the Black Panther. The strong women of Wakanda, who were in charge of the technology and protecting the King, made me cheer. These depictions of strong, intelligent women (of any color) shouldn’t be so few and far between, but they are. Shuri is the smartest in the room. Any room. Okoye and her crew could kick any man’s ass. Nakia is brave, and convinces the King that sharing their knowledge and wealth for the good of all is an important enough idea to allow it to stand between her and her relationship with the King.

Heroes don’t have to be the same color as you are to be inspirational, but I’m white and I have plenty to choose from if that is what I seek. It was about time that people of color had an extraordinary hero and a slew of capable, ass-kicking heroines. I can only hope another hero can rise on the shoulders of Chadwick Boseman.

What I hope people learn from Boseman’s short, but well-lived, life is that people can be heroes both on and offscreen and be an inspiration beyond what they intended or hoped for. Heroism and quality of character goes more than skin deep, and that is one of the legacies that Boseman left behind for all of us.

Rest in Power, King.

breast cancer, CANCER, tamoxifen

DEAR TAMOXIFEN, THANK YOU AND GOODBYE

Posted on October 8, 2015 by sassysheisme

Today was the big appointment with my oncologist during which I planned to tell her, vehemently, that I had broken up with tamoxifen, and that I had already noticed a significant improvement in my quality of life. I had my argument planned in my head, had all my answers, research and sass ready. To say I was resolute would have been a huge understatement. I was at peace with this decision and I was ready to live with it and all the consequences.

As it usually happens with me, whenever I am prepared to defend myself or my position – I didn’t have to at all.

My pain, the side effects, everything, was acknowledged. Then she told me that in the last year Texas Oncology has heard the pleas and complaints of the patients under their care and have rolled out an entire program to help patients with their side effects.

I couldn’t hide my surprise. The last time I’d sat in that chair, I was tearfully pleading for help with the nearly debilitating joint pain (among other side effects) and was met with a blank stare and “that’s not my specialty.” I felt that, given that experience, I was in for a lengthy debate to justify my deep, ingrained notion that I was due a better quality of the life that was spared.

Apparently, according to Time Magazine, the entire breast cancer industry is rethinking how they treat DCIS cancers (like the one I had). One patient, Desiree Basila, made this statement:

“What I am doing is not foolproof,” says Basila. “I know that. I also know life is finite and that death is unavoidable. For me it came down to the quality of the life I want to live. I don’t want to be tired and bitchy if I can avoid it. And come what may, I think we really hurt ourselves by trying to just not be dead.”

Just trying not to be dead.

That last sentence stuck with me, and was in my arsenal of defense against the “Tamoxifen machine.”

After explaining how they’re now offering help with side effects, she looked me in the eyes, saw the resolve, and then said, “For your type of cancer and your stage and the size of the tumor, you’ve taken it long enough.”

She glanced down at my chart again. “Your quality of life is too important. You don’t have to take it again.”

I was stunned. I almost started crying, but it would have been an ugly cry, so I sucked it all in as hard as I could.

She agreed with me. I didn’t see that coming!

She stressed good eating, weight loss, continuing my natural therapies (though I know she still doesn’t quite agree with that), and concentrating on improving and enjoying my life.

I cried on the way home, grateful that 1, I didn’t have to take tamoxifen anymore, and 2, that I didn’t have to argue the point. I can’t tell you how gratifying it is to stand up for myself and have it rewarded in the way I wanted, but did not expect.

I will end with this: Tamoxifen, I do thank you for what protection and prevention you have given me. I will not, however, miss you, be sentimental about our time together, or yearn for the life-sucking “good ol days.” I am more than happy to leave you behind!

breast cancer, tamoxifen

SIDE EFFECT UNIVERSITY

Posted on August 22, 2015August 27, 2015 by sassysheisme

August 21, 2011 – Started taking Tamoxifen on a five-year schedule.

August 22, 2011 – Wished I could stop taking Tamoxifen.

April 2014 – Told that I would be taking Tamoxifen on a ten-year schedule due to the findings of a new study.

August 22, 2015 – Weighing the side effects (that most doctors tell me it’s impossible to have the rare ones) vs the benefit of taking the drug.

I work with a lady who had breast cancer years ago who experienced many of the same side effects as I do. After a couple of years of wrestling with the side effects, she stopped taking Tamoxifen. Her stage of breast cancer was higher than mine and she also had chemo, which I did not.

She stopped taking Tamoxifen. My doctor acts as if this is not an option and will not be considered – ever.

The study of taking Tamoxifen 10 years said this:

The researchers found that taking tamoxifen for 10 years produced more reductions in breast cancer recurrence and death than taking tamoxifen for 5 years. In the 10 years after the study started, the risk of recurrence was 21.4% in the continuation group compared with 25.1% in the control group. Death from breast cancer was 12.2% in the continuation group compared with 15% in the control group.

3-ish percent. Five more years of side effects vs 3 percent.

A partial list of side effects I have experienced from taking Tamoxifen:

chills
confusion
cough
dizziness
lightheadedness
lower back or side pain
pain or swelling in the legs
sweating
weakness or sleepiness

bloating
joint or muscle pain
loss of appetite
nausea
red, irritated eyes
unusual tiredness or weakness
hair loss or thinning of the hair
headache
pain
pinpoint red spots on the skin
trouble concentrating
trouble with sleeping
unusual bleeding or bruising
swelling of the fingers, hands, feet, or lower legs
weight gain or loss (in my case, gain)

I do not want breast cancer again. I will commit to the initial five year plan. I do not, however, want to be 52 when I finally get my life back, if indeed that will actually happen. I do know that when I was off Tamoxifen for a month because of surgeries I was having, I felt better than I had in a long time.

After that, I dove into gathering information about side effects of Tamoxifen and how to combat them naturally. I have a team of doctors, none of whom will help me with this task because one is committed to me taking Tamoxifen at all costs, and the rest of them do not understand the drug at all – only what they read – and they discount my pleas for help.

Turns out, when Tamoxifen takers communicate among each other, I’m not alone in experiencing these impossible or not very probable side effects. Still, doctors are so intent on patients taking this drug that they discount the side effects and will even deny they exist to keep a patient on this drug.

I do realize taking Tamoxifen is entirely up to me. My doctor can insist on it, but I can choose what I take and put in my body. My doctor’s scare tactics of keeping me on the drug are deeply embedded, but 3%… I can’t get over trading five more years of my life for 3 more percent of success after a low stage, no-chemo, no BRCA gene cancer.

My next appointment is in October. I will make a decision by then. I want my life back. Maybe, just maybe I can get that 3% back with weight loss and health that not taking Tamoxifen will hopefully provide.

I am ready to graduate from Side Effect University. I have my doctorate.

breast cancer

NATIONAL CANCER SURVIVORS DAY

Posted on June 7, 2015 by sassysheisme

Today is National Cancer Survivors Day!

In April, I had another mammogram, another “clear” mammogram, which declared me cancer free for the fourth year in a row. I do not, and will never, take negative results from a mammogram for granted.

I find it difficult to balance my gratefulness to still be a living, breathing member of the human race, and the sadness, and if I’m honest, guilt, that I feel for still being a living, breathing member of the human race when so many cancer warriors don’t get the opportunity. Even before I had cancer myself, I lost family and friends to cancer, and even now, through every diagnosis someone receives, and some losses and funerals of people way too young to not be living, breathing members of the human race.

The renewed life I’ve been granted is not without its challenges. I still loathe Tamoxifen and all the things it does to my body while preventing cancer’s return. I’m disappointed in all the doctors that refuse to acknowledge the side effects I’m having and trying to deal with outside of the medical world – their only concern is that I’m alive, not with the quality of my life. That does not mean I am not allowing Tamoxifen to rule my life, it only means that I’m living with Tamoxifen and dealing with the side effects on my own.

The biggest problem I’ve had is joint pain and the need to detox my body constantly. I’ve also stopped losing weight and have gained 10 pounds back from the original 50 I lost – something that my weight loss doctor would like to crucify me for. I wholeheartedly disagree with him on all points because I am doing everything I’m supposed to be doing within my ability right now. He refuses to acknowledge any part of my life or the things I am doing outside of his office. He also tries to act as if he’s an expert on cancer survivors and all the meds I’m on that clearly state weight gain is an issue. I’d like to slap him because he is overweight, but he can be happy about it, yet I cannot be happy that I’ve kept off 40 pounds for two years. His reverse psycho-sorcery doesn’t work on me and I know it frustrates him. I’m frustrated enough for the both of us.

Since I’ve been detoxing more often, I’m sleeping better, but still not that nourishing sleep I crave. That doesn’t help with the weight loss either. I’m caught in this cause and effect loop that I can’t seem to break, but mark my words, even if it takes YEARS, I will break it.

The one thing I’d like to remind people who haven’t had to deal with chronic illness, pain, fatigue or cancer, is that a cancer survivor’s life never really goes back to “normal” or back to the way their life was before cancer. Life cannot exist as it was before – either physically, mentally, or emotionally. All of our experiences are different – but our common bond is, that though life has been altered forever, we are still living it in our own way, on our new timetable, with our life’s new boundaries.

The best way to honor a cancer survivor is to understand, as much as you can, their new reality and allow them to live it as best they know how. Support them as they try to figure out what works for them so they can live their lives as fully as possible. Acknowledge to yourself that they can no longer live life on your terms or the terms you were comfortable with. It’s not about you.

Hug your cancer survivor today. Remind them that you are so glad they are still with you. Allow them to celebrate however they choose – solemnly, excitedly, prayerfully, boisterously, or with a nap.

breast cancer, death, Suckuary

THE BEST DEATH?

Posted on January 4, 2015 by sassysheisme

This week, I came across this article reporting on a blog post in which a doctor stated that cancer is the best way to die and society should stop wasting money trying to cure it.

Of course, as a cancer survivor, I was livid. I couldn’t even come up with a way to describe how his words made me feel other than, “KMA – kiss my ass.”

As I read his blog post describing various ways to die, I still couldn’t form words to comment on it. Doctor Luis Bunel compared various end of life ways people die and chose cancer over dementia, sudden death, and organ failure. I understand he was contemplating ways to die and, at age 62, he may be closer to death than I am. We all contemplate how we want to leave this world, that’s a normal part of life, especially after passing the invisible, perceived halfway point of typical life expectancy.

The point is, Doctor Bunel, none of us gets to choose how we leave this earth, or when, (though some do by taking their own lives). By stating there’s a better way to die surely guarantees that won’t be how you get to the end of your line. I do believe that our wishes really aren’t considered when it’s our time to die. Death is an inevitability, sure. Being able to shove that inevitability back one more day is a gift.

I’ve buried way too many people I love because of cancer. Each of them fought what Doctor Bunel would term the best way to die. They fought with their own strength, they fought with medicine, and they fought, most of all, to stay with the people who love them.

“An even more horrible death,” he wrote, “is one that’s kept at bay by the miracles of modern medicine, a death that never ends. In the name of Hippocrates, doctors have invented the most exquisite form of torture ever known to man: survival.”

One more day with my brother would be worth everything, I guarantee you, doc, that I don’t think his parents, siblings, wife or kids would say otherwise. If my brother thought what he was enduring was torture, I guarantee you, he would never have said a word. He fought until his last breath to remain with us and if it was torture, he was willing to take it. Every. Single. Day. For one more moment.

Survival does not equal torture.

I know with my own cancer, I was nowhere near death. I didn’t have major organs failing because they were being eaten away from the inside. I am nearing four years cancer free, and while I do not see breast cancer making a comeback, I GUARANTEE you, Doctor Bunel, if it does, I will fight it with everything that is in me to do so. I will embrace the modern medicine, and if that one extra day is torture, I will celebrate it.

This morning, I saw on ESPN that Stuart Scott, a long time host of Sports Center, had passed away from cancer. His fight reminded me to never give up. He fought cancer for almost a decade. He FOUGHT it. He left behind two daughters, two daughters that I’m sure he felt the alleged torture was worth. Watching the tributes to him from his coworkers and friends brought me to tears. He inspired them in many ways and he will be missed.

None of us knows exactly when or how we will die. What we do with the time we have is important. It is not a great sin to want to live longer despite our quality of life if we want to live. Cancer treatment and research costing billions is not a cancer patient’s issue, it’s a larger issue of the greed and inefficiency of the healthcare system (that’s another post). Regardless of the cost, most people are not in a hurry to die, even if it’s painful, because most of us have something bigger than us to live for.

I’m still not completely calm about this article. I know it’s not personal, but yes, I took it very, very personally because the miracle of modern medicine let me have moments with my brother and mother that I wouldn’t have otherwise had. I also a member of a family of cancer survivors who are still here, living full lives, because of the advances in medicines that fight cancer, all of whom would agree those billions of dollars spent on cancer research are not wasted.

Survival does not equal torture. Not by a long shot.