Breast cancer, Chronic Illness, Chronic Pain

The Picture of Health

Featured Photo: Nathaniel T. Schultz Photography, Minneapolis.

 

Below is the picture I took the day after mammograms, ultrasounds and a biopsy. It is also the ‘before’ picture; before the official breast cancer pathology report and more than a year of treatments.

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It is my first ‘before’ picture. Before the official breast cancer pathology report came back, before having chemotherapy, before the bilateral mastectomy, before weeks of radiation, and before I would have a year of immunotherapy treatment. Before basically living at the clinic and knowing the names of so many people taking care of me the best they could. I knew that I would end up taking pictures along the cancer treatment road. I knew I was not going to ever be the same, physically or mentally.

Looking through my Facebook feed one day, I came across one of the photographers I had been “following”. His name is Nate Schultz. My daughter had previously modeled for him and I had been following his work since; beautiful, original artistic work. Nearing the end of my cancer treatment days, he posted a black and white photographic composition of his which I really found unique and particularly intriguing. It was an artistic nude photo of a subject that looked to be young and seemingly healthy, which is beautiful in and of itself. The photograph is burned in my mind. It got me thinking more about the human body and the appreciation for the bodies of different ages, not just the coveted beautiful bodies of childbearing-aged women. I tried to google pictures of older nude models and candid nudes of people from around the world, National Geographic type pictures. I ended up frustrated with how little my searches had turned up. Maybe I wasn’t searching enough?

Still, I continue to hold that one particular photo of Nate’s in my mind. Of course I “liked” the photo on his Facebook page. (If you would like to see it, it is on the Facebook page of Nathanial T. Schultz Photography, the February 9, 2018 post.) I made this comment on that post:

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By this time, I had over a year of cancer treatment under my belt, a year lacking exercise, a year of personal growth and reform. My body transformed. And I was challenging both myself and Nate to embrace the change. To my delight and surprise, he extended an invitation with open arms. We would meet. We would create.

For real! I felt humbled, respected and impressed for the chance to have a subject like me be an example for others to see, as well as a reflection for me to see. I was upfront that I am no model, and I couldn’t pay him, which Nate was fine with. He was presenting it as a gift. He wanted me to be myself. I found it to be so accepting, comforting, and flattering. It was cause to trust him as an artist and a friend. Life hands us losses and hands us new joyful gifts. Opportunity is handed to you to do with it what you decide. Nate decided to take his talent and love for photography and make an opportunity to live with passion and encourage others’ passions.

We scheduled to meet up on a March winter’s day, the day before spring was to start. I drove the mini van up to the studio through the overcast 30+ degree, typical winter day to Minneapolis with a migraine hangover on board,  and a dragging fatigue. Inside, though, the energy climbed. Excitement and pride rose in anticipation of the new meeting and the opportunity to share my truth through new art. . I entered the old and worn building that has been dedicated to creativity and ascended the stairwell.

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Coincidentally, it was the last day before my final breast cancer treatment. Nate and I met with a hug, then shared stories about cancer: his loss of many loved ones, my cancer-free pathology report and how the cancer has changed me and my loved ones.

Like I said, I am no model and I feel even less so since my body’s immune system was taxed, my muscle strength deconditioned, my energy level sunk, my chest became a surgeon’s project, I gained more than 25 pounds and my hair is growing in curly from the chemotherapy. It is an awkward duckling transformation from what I had gotten used to being.

It is spectacular how gracefully a human body can fight and how much others’ grace helps it to heal. How the human spirit lives!

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Nathaniel T. Schultz Photography

This picture is the new ‘before’: the kickoff to life after cancer.

Within one hour, Nate and I met face to face, shared vulnerable stories, made a snapshot of a story and, with a simple connection, he tricked an unexpected, spontaneous laugh out of me!

Life will expose you. It will make you laugh. Life, it’s chronic.

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Our see-you-later selfie.

Chronic Illness

Migraines are my Own Fault?

I don’t know if it’s because I am a woman and the things I heard growing up, but I can’t help feel like migraines may be my own fault?

 

Keeping my head up, I try to not make myself out to be a victim or make things larger than what they are. This is a post that would be something I would not want my kids to read, because they already feel bad enough. It kills me that they have had to hear and see any suffering.

As I sit here keeping calm, I regretfully disclose that I missed my three month visit to the neurology department at Mayo Clinic in Rochester, Minnesota. It was my fault that I missed it. In the days prior, I got caught up in everything else but myself and forgot myself. As a result, I missed my Botox injections. I can’t get in for another two months now. There goes my life for the next two months, and it is all my fault.

The Botox injections are a godsend. I don’t know if they’ll eventually find something dangerously wrong with them, but if they do… it will have been worth the relief. The migraines are a wrath from hell without them. The Cefaly device I have helps the migraines that peek through while using Botox for the headaches. It even helps some without the Botox, but not enough to get me out of hell.

Migraines make me feel like I am being punished for something. They grip my head and flare up the fibromyalgia pain all over my body. It becomes an explosion. Throughout my research on both migraines and fibromyalgia when I searched for answers to make them go away, I came across people who claimed they cured themselves by praying to God, or by eating more greens. I have changed my diet. I do pray to God. Still I feel like I am being eaten alive.

Growing up, I saw women with headaches. I heard people imply that women get headaches because they are nervous nillies. That kind of mindset sticks. By nature I am a nervous person and have become much more laid back than I thought I could be. People do change some. Growing up makes that happen. My body has aged and changed, but now my body is just as nervous. My hands quiver when sitting still. When I hold onto a book, my son will hold my hand still to keep it from shaking.

My grandmother suffered from horrible headaches for as long as I can remember. My parents suffer from headaches as well. The use of the word suffer is not used lightly here. It is used to describe a debilitating state of infliction, not an inconvenience.

Logically, I know that the headaches are not my fault. Still, I can’t help but worry that my daughter will inherit my pain one way or another. Life, it’s chronic.

Chronic Illness, Chronic Pain

You are One of Life’s Mountain Goats

It’s not just about the climbing. It’s also about standing up.

Life is like a mountain and you are like a mountain goat. There are times in which you need to climb up. There are times in which you need to climb down. There are times you must stand your ground. There are times you must simply stand still.

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First of all: mountain goats aren’t goats. They are related to goats, but more closely related to gazelles and antelopes. So, you may choose to consider yourself a mountain gazelle or mountain antelope if it suits you.

You must climb up. Soon after birth, young mountain goats must dash among the mountain terrain with their mother. Ironically, it is for safety that they must climb dangerously high on intimidating slopes in order to defend themselves from predators such as cougars and wolves. We must also skillfully work our way to the high road, taking courses of action that lead us to not only the most acceptable place, but the place that would least likely get ourselves or others in harm’s way. Look where you are going, and steer clear of the wolves in sheep’s clothing.

You must climb down. There are times when we must just first survive before we can thrive. In the winter, mountain goats will come down to lower ground to eat, being vulnerable to being preyed upon by the wolves. Oftentimes we need to take risks in order to develop and grow. Our challenges may make us stronger or they may make us weaker; but our challenges make us. Be mindful of the wolves in your life. Take responsibility for your own needs.

You must stand your ground. A mountain goat knows how to fight for their best life. During mating season, billies (males) will fight each other with their horns to get the right to mate with the female. Females fight females. These nannies know how to use their horns to protect their territory, their kids, and their food. It is not a stretch for me to relate to these measures. We all want to find someone to bond with. At the same time, we know how to claim our territories and resources. It’s when we get a little too obsessed in claiming these things that we compromise our relationships.

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There are times when you simply must stand still; keep your balance. Mountain goats are famous for this. They are built with the cloven hooves and toes that spread wide. Pads on the bottom of each toe are rough and make it possible for them to keep a good grip. We also need to keep a good grip on our lives. Focusing on one spot can help you balance on one foot. Focusing on the priorities and potential dangers in life can help balance your life. Mountain goats will rest under the shade of an overhang. Rest and enjoy your view.

We need to know when to move forward or take a step down.  We need to know when to stand our ground and when to stand still. Look up; look down; look out. Assess your situation. Keep your footing. Take a deep breath. Life, it’s chronic.

 

For more information on mountain goats, visit:

http://www.nationalforests.org

http://www.defenders.org

http://www.nationalgeographic.org

 

Chronic Illness, Chronic Pain

Writing a Post When You are Ill.

Writing is the same as pretty much everything else when you are knocked-out ill. It sucks.

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Write that post anyway. We can not always wait for when we feel well. When we feel well, writing a post is often not at the top of the to-do list. When we feel well, we can write posts, yes. When we are ill, though, we look forward to experiencing life so that we have something to write about! I am sick to my stomach from migraine upon migraine, but I can write and you’ll think, “Well, at least my post isn’t as bad as THAT one!”

“Knock, Knock.”    “Who’s there?”                                          

Does it matter.”     “Does it matter who?”                              

No, it doesn’t matter who is knocking, illness may not let you answer.”

Illness sometimes doesn’t let much through. This past month has been a constant ping-pong game with the migraines. Back and forth. During this match, I am still expecting myself to work out, make meals, wash dishes, vacuum, do the laundry, try to socialize with family. And write a blog. The migraine won. The migraine has a mean spin on that ball! Will readers understand why I write a blog even though it sucks? I don’t know. Will readers care if your blog sucks? Maybe for a minute. When you finally feel well enough to write your post, the way you want to, you may look back and be glad that you did your best when you wrote that lame post.

Do not apologize for when you are doing the best you can. Do not apologize for the content, the sloppy grammar, the disorganized babble. You will do better next time!

“Knock, Knock.”   “Come back later when I will tell you how to be a mountain goat!”

Some other day. Life, it’s chronic.

Breast cancer, Chronic Illness, Chronic Pain

Naked Thoughts After a Mastectomy

A mastectomy made me want to take my clothes off. Why?

I sent to a comment to a photographer:  If you ever want to take some pictures of a breastless chest and scars, and a body that has atrophied, hit me up. 🤔 Seriously. 50 year old bodies still have life in them. 😁

The photographer’s response: I cannot tell you how much of an honor that would be. Just having the opportunity to meet you would be amazing. I’m for real. You and (your daughter) should come to the studio.

I did not expect such an invitation. His work was filled with younger people and professional models. You see, the photographer had become a ‘friend’ of mine on Facebook recently because my adult daughter is a model. She and her father are very photogenic. The photographer purposefully reached out to me to let me know what a professional pleasure it was to work with someone of her personality, abilities and professionalism. He couldn’t say enough kind words about her. As a mom, it is a high feeling to have strangers go out of their way to say how much they respect and appreciate my daughter as an admirable human being.

I liked his approach, so I kept following his work. Creativity. Expression. Humanity. However, I had not seen a subject of his work that had been middle-aged or older, like me. Definitely not a woman with a flat chest.

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‘Practicing’ to be photographed.

The idea of being nude in front of a camera made me absolutely cringe before breast cancer, when I still had breasts. Back in college, I briefly contemplated posing nude for an art class in college for some extra bucks, but when I imagined how much I would shiver and be unable to sit still in a cold Wisconsin classroom the idea quickly came and went. Years later, after I became ill with migraines, chronic fatigue and fibromyalgia, I allowed myself to feel increasingly resentful toward my body.

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Full disclosure: I am 48, not 50; not that it ought to matter…

Now that I have undergone chemotherapy, had a bilateral mastectomy, and radiation treatment and immunotherapy for breast cancer, I am no longer ashamed of my “chest region”. Now I plan to visit Minneapolis, Minnesota for a two hour session with a photographer to take nude, artistic photos to show the vulnerability and strength of my body and myself. Living up to the stereotype of being bipolar, I have always been possessed by the raw emotion that nature and art bring out of me. Art is an emotional and intellectual science. I am excited to find out this photographer’s vision.

Most nude pictures, drawn or photographed, are predominantly of young, toned and ultimately attractive people. I want to see people of all ages and backgrounds and give respect to the containers we carry our souls in. Via Facebook, I challenged the photographer to use me, a 48 year old woman, deconditioned from a year of cancer therapy and a double mastectomy, as an instrument in his photography. I had thought the chances would be slim, but that he may take the bait. He happily did so. Here’s hoping he doesn’t regret it.  Really all I have to lose is but a tank of gas.

Is it more or less acceptable for someone who has undergone a bilateral mastectomy to be shown nude? If I now went outside topless, would it still be indecent? Offensive? I am hoping to gain some insight from this upcoming experience. I am hoping to learn to be inspired by and accepting of my body for the way it’s made. I am working on it.

Life, it’s chronic.

Chronic Illness

Wender Woman Protects Against Migraines!

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‘Wender Woman’ challenges headaches to stand back!

Get it? ‘Wender Woman’, because of the cool, metallic Wonder Woman headband and my name is Wendy? It is cooler when I don’t have to explain it. But, it’s still cool.

If you had a headache everyday, most of them migraines, you would do anything to arrest them. I have and will. If you have a migraine monkey on your back, I need not explain to you how a headache pain ends your day. For those of you without a migraine monkey, but still are curious, let me try to describe the impact of chronic headaches and/or migraines: Imagine the members of the crew of  Star Trek is seized by a high pitch sound that makes them press their hands against the sides of their heads, stumbling around, and grow weaker until they collapse into death poses on the floor. It is kinda like that- only worse.

In case you are wondering why I look especially tire, part of my headache prevention is done at night. Also, I am staying up late to write this post for you. Now you have an idea of why I really don’t care that I don’t have a flattering picture of Wender Woman on the post. I am dealing with chronic illness people, not advertising for a superhero movie!

What is the deal with the headband? It is one of many tools used to prevent and treat migraines. In Canada, you can buy them without a prescription because it is not a controlled substance. This device was prescribed to me by a neurologist at Mayo Clinic in Rochester, Minnesota. But, I would think any doctor or physician assistant could fax an order for one. I ordered mine from Canada, but still needed a prescription from the United States. Insurance companies do not cover the cost. It is FDA approved. The band is obviously not a food or a drug, so of course I don’t understand why the FDA would have any deal with it. There are no side effects that I have been able to notice; except being able to be able to think, be more active, be more healthy and be waaay less grumpy.

I have yet to access the superhuman benefits. Perhaps it’s because the headband isn’t even metal. If I was trying to get paid or reimbursed for ‘promoting’ the product, they would be asking for their money back right now. I am proud to admit that a salesperson I am not. I am in no way being compensated for this post. I don’t care. I just hope that it may help someone be able to live better.

This product is called a Cefaly. There is a sticky pad with an electrode that adheres to the forehead.

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The headband connects to the electrode. The headband is there to house the batteries and send signals to the electrode. The electrode sends impulses to nerves in the forehead. I am pretty sure that’s how Wonder Woman’s headband works too.

The electrical impulses sent to the nerves in the forehead somehow talk to the pain stimulators  at the base of the skull, inside the skull, inside the brain. The nerves tell the pain stimulators to hang back there and chill and don’t worry about what’s going on up front, because it’s under control. Don’t quote me on that. My doctor explained it in medical terms with detail that absolutely made more sense.

At first, I was assuming the identity of Wender Woman at night solely as a headache prophylactic (preventative) treatment. Between a very expensive Botox treatment every three months and the Cefaly device, my headaches are down to five or less per month. I used to have a headache every single day, with two-thirds or more of them escalating up to a migraine headache. Now, I am down to five or less headache days per month. When I do get a headache, if I catch it soon enough, I can usually knock it down by either using the Cefaly for twenty minutes, taking Sumatriptan or combining both the Sumatriptan and Cefaly.

The Cefaly is part of my balanced bedtime hygiene routine. I wind down in a dim lit room and chill for an hour with a book or my husband, aka ‘Wonder Man’; make sure my forehead is clean and dry, do my bedtime routine and apply the Cefaly. It took a little getting used to the strange sensations of the electrical impulses, but now I wouldn’t mind using it for fun during the day just to regenerate my superpowers. It is so relaxing. The late night routine is so relaxing that I  have to conjure up the self-discipline to stay awake until the end of the Cefaly cycle.

The sticky electrode pad can be reused for about three to four weeks. The electrodes are sold separately from the unit. When I bought mine, the Cefaly unit was a headband like you see in the above picture. It fits my baby-sized head very well.

My head is slightly bigger than my cat’s…

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My husband tried it out. He has a big, beautifully round forehead, but we couldn’t get it to even power up for him. The headband wouldn’t connect with the electrode on his horse-sized head. Cefaly now only makes the units without the arms along the side, which is great for pretty much anyone, even those with a baby-sized head.

I will keep my plastic headband, thank you very much! If I could find some magnetic bracelets that are supposed to be good for body pain, I might try them out. But, they would have to look like Wonder Woman’s wrist cuffs. Wender Woman is gaining strength one minute at a time. One year at a time. Life, it’s chronic.

Chronic Illness

Temporarily Chronic: Breast Cancer

7A7094D3-0A29-40F7-8853-6D318B1BF7B2.jpegThis photo is from about six months ago. So, I haven’t blogged about my experience with breast cancer, because I hope for it to be a temporary problem, not a chronic one. But, as I say, life IS chronic.

It has been thirteen months since I started treatment. I have to humbly say that I have been the epitome of grace under this pressure. At least I think so. I think people were possibly more concerned about me being so jolly about the treatment than they were about the cancer, although no one has told me that. If I were my friends and family, I would think that either I was being a very good actress with a professional performance or else I was going out of my mind! I mean, who glows in excitement about how great the cancer treatment process is?

Who enters cancer treatment being all smiley and like “Yay!” Well, let us see… I do! I do because I couldn’t be more relieved than to have the chance to save my life and to have the consciousness to watch it all happen. I was walking around with breast cancer and I did not own it. I did not plan on keeping it, so why own it? It did not tie me down, much less knock me down. I mean, I could get out of bed every day and be ever more grateful for another day and hopeful for tomorrow. What a gift.

People are very kind to cancer patients. Duh, right?! Well, I have had my series of chronic health problems and problems like so many of us, but I seriously have never been treated better by so many people that I know and even more people that I don’t know. How comforting is that! It is everything that makes life worth living for. Kindness.

I will come back again and write more about this chronic part of my life.  “Live it!”, says Wendy!

Life, it’s chronic.