Archives for posts with tag: breast cancer awareness

I am on vacation with my family in British Columbia, Canada. Until yesterday, we were staying in Ucluelet, an incredibly beautiful place on the sea. We’ve spent a fair bit of time on boats. There was the Washington State Ferry ride from Anacortes, WA to Sidney, BC. There was a boat tour to see humpback whales, of which we saw several including one named, “Pinkie”. I thought, “Holy crap, please don’t tell me that this whale got it’s name to promote breast cancer awareness.” No fear, friends, her name is pinkie because she has a pink underside, which I was able to see with one of her great lunges out of the water. Unbelievable!

One of the boat rides we took was to Meares Island, off the coast of Tofino. It is a tiny island with giant trees. We spent two hours hiking on short but difficult trails before going back to the shore to wait for a small boat to take us back to the Tofino. Dennis, the captain of this 4-seater, was a character and regaled us with tales from the local area, most of which I believe were actually true.

Dennis pointed out a tiny island, “This island is for sale for $850,000.”

I don’t have that much money, but still, less than a million for a whole island? Plus, there is the Canadian/U.S. exchange rate, which today would knock nearly 25% off of the price. And it was a beautiful little place, not far from the large island of Vancouver. I could see two or three houses on it. What a deal. What a find. What an idyllic place to live.

I was gazing upon this little lump of paradise on a beautiful sunny day. Then I thought of living that close to the sea. Then I thought of the winter storms that are here. I also thought of the steep rocks on the side of the island. I wondered how many houses have fallen into the water! I suspect that keeping a house in shape there would cost a fortune, not to mention require a great deal of time and effort to maintain. Then there is the fact that it is located in one of the rainiest parts of the world.

Every moment and every thought were real. This island is idyllic. It is dangerous. It is costly. It is beautiful. It is miserably wet. This has been a wonderful vacation, by and large. I have reconnected with my family, with nature, with much needed rest and adventure. But travel is also exhausting and at times quite difficult.

Yesterday, I experienced the swell of good times, like catching a good wave of meeting delightful people and traveling through incredible natural beauty. But there were also times, when I got the shit kicked out of me, pummeled over and over, in that way that at the time, I fear that I will never get my head above water.

Fortunately, this did not last the whole day and even in the midst of my misery, at one point, I was able to shift out of it enough to get some perspective and hope that the situation could change. The wave that I was being pummeled by was the difficulty of parenting.

The sea is beautiful, powerful, and always changing.

I like on that little island whether I pony up the $850,000 or not, whether I wanted to or not, whether I planned for this or not, whether it suits my lifestyle or not.

Sometimes this feels like the greatest blessing and sometimes it feels dark and scary.

I don’t know what today will bring. My family is sleeping in.

Today, I will remind myself that every feeling has a beginning and an end. Every feeling lasts only about 30 seconds as long as we don’t respond to it in a way that keeps it firing in our brain. When I think of this, I realize how powerful our brains are. Our brains can sustain a swell or break it.

This is not easy power to exercise but it is possible. This possibility creates a sense of safety and hope for me today. I will try to remind myself of this.

Today is my last full day of vacation.

I have only one more full day of sightseeing to endure or enjoy. To a significant extent, a powerful extent, I have a say in how this plays out.

In the meantime, I’m going to reconnect with some of my photos from the trip, which gives me joy and peace. Perhaps they will bring you the same.

 

DSC02421On the ferry from Anacortes, WA to Sidney, BC, looking toward Canada.

 

DSC02449Anemone from the Ucluelet Aquarium, a small gem, in which they catch and release animals from local waters, every season.

 

DSC02514Part of the Wild Pacific Trail, Ucluelet, BC.

DSC02545I was enchanted by these puppets, designed by First Nations artists. This bear, holding a salmon, was designed by a Haida artist. It contains a teaching, “Be strong. Take care of those who are less strong.” I thought it was beautiful and adorable so I bought it for my friend, Greg’s grandkids. Then I immediately sent him a photo of it so that I wouldn’t get tempted to keep it for myself. Then I bought one for myself a few days later!

DSC02596Cox Bay, Tofino, BC.

DSC02671Meares Island.

 

DSC02682 (1)An unexpected twist on a deer fern. Meares Island.

 

DSC02703 (1)Bald eagle, Tofino.

DSC02715Middle Beach, Tofino.

DSC02785Coombs Market, famous for the goats that graze on the sod roof. Alas, I was too busy socializing with my friends, Kathryn and Nel, below, to remember to take a photo!

DSC02790

I woke up today pain free and feeling pretty well, for the most part. Then I looked in the toilet and noticed the blood. My last Lupron shot is still active for another week or so. I know I’m not menstruating. I also noticed that I still felt the urge to urinate even though I had just done that.

“I’m peeing blood!”

That’s what I could have thought. What I thought instead was, “Hmm, I bet I have a urinary tract infection. I’d better go to urgent care and get it checked out.”

I woke up my husband, told him that I needed to go to urgent care for a possible UTI, and asked if he would drive our daughter to a jazz singing workshop in my stead. He agreed and I drove 5 minutes to the nearest urgent care place. Since they’d just opened, I was the second patient of the day and was seen rather quickly. I was calm and the nurse congratulated me on my blood pressure, which was 110/68. Within 25 minutes, the UTI was confirmed and I left with a prescription for an antibiotic. I drove to the pharmacy thinking, “I wonder if I should buy some cranberry juice?” When I got to the pharmacy, I read my discharge instructions from the urgent care clinic and it advised that I drink cranberry juice.

I’ve never had a UTI. How did I know not to freak out about bloody urine, about cranberry juice, and about having the chronic urge to urinate?

I knew because I’d gotten a lot of education about UTI’s in my life. They are common for women and due to the miracle of antibiotics and cranberries, very treatable. They were discussed in sex education class when I was young. They are covered in Our Bodies, Ourselves. There are pamphlets and other forms of public health education about UTI’s. So I knew that I probably had a UTI and promptly got an appropriate assessment and treatment.

Education can lead to effective action. Awareness? Hmm.

What if I were only aware of UTI’s? That I knew nothing of the symptoms or treatment? What if I were only aware of the urinary tract or of infections? What if I did not have a basic knowledge of physiology or of common disease?

Awareness just doesn’t get you very far. Awareness is not knowing. Awareness is not education. Awareness is not doing.

Awareness is superficial. It works in the part of our mind that makes easy associations, the part that doesn’t think that hard. In other words, awareness is a perfect vehicle for marketing products. Breast cancer is bad. This product is associated with a pink ribbon, which is associated with “helping” breast cancer. Pink ribbon = less bad.

Most advertising relies on this kind of superficial quick thinking. That’s why so many things are paired with sex. Do we really think that drinking Bud Lite is going to make a swimsuit model magically appear next to us? Of course not. This kind of advertising relies on people making quick associations between a product and something (a woman is not a thing, I know that, but it is the way she is presented in an ad) desirable, thereby making the product more desirable.

Public health education is important. Let’s support that. Research is a kind of education. It is the way we learn about disease and treatments. Let’s support that.  Training healthcare providers about disease, treatments, and the whole person is also education. Let’s support that.

I don’t want to just be aware of breast cancer. I want to know it so we can get rid of it.

Recently I met with some parents to obtain background information as part of my assessment of their son. They are highly educated people, both with advanced degrees. They have three young sons, all of whom they speak of lovingly. The father charmed me with the fact that he calls his sons, “honey”. There words were measured and they described their concerns about their oldest son, his tendency at time to not to own his own actions, his quickness to anger, and his frequent use of exemplary verbal ability to argue with adults.

Despite their calm and professional demeanor, I could see the mounting fear behind their words. Their fear for their son’s happiness and safety in the world. We had had a chance to establish some rapport and I decided to take a chance on expressing an awareness of an issue that had yet been unsaid. “I can only imagine the stress that you feel in raising a Black son who has these difficulties, in our country.”

Both parents nodded vigorously and the father said with palpable relief, “Finally, someone gets it.”

I am not African American. It was chancy for me as an outsider to make the comment that I did. It was also chancy for me to use the term “Black” instead of African American. The former is more likely to be acceptable when used by African Americans, not by an outsider and further a member of a privileged race, such as myself. But I thought “Black” was a better reflection of their own thoughts and feelings about their son. I also know that due to my personality, I tend to be able to say things like this and they are interpreted in the way I intended. But I am still very careful. I will never know what it is like to be African American.

But I can try to understand the best I can and to be aware of the common challenges that African American families face. And my awareness must be more than an internal event. It needs to be linked to effective action. In this example, my action was communicating my awareness of the rational sources of their fears. These parents have three boys. The number one cause of death for African American males between the ages of 15 and 34 is murder. And one might think that the risk does not apply to these boys because they live in an educated and relatively affluent family. I think realistically, it may buffer this risk to a certain extent. However, even looking at my own life, I know there is a particular danger that cannot be eliminated. I have a lot of friends. A great number of them have advanced degrees. Two of my friends, both Ph.D.’s, have had murder in their immediate families, one attempted and the second resulted in the death by shooting of a friend’s brother, who was waiting in line to get into a night club. Both of these friends are African American women from well educated families. One of them even had an uncle who ran for president of another country.

There are many people who live with the cloud of potential catastrophe. We are often unable to fully appreciate it but we can do our best to understand.

I am awaiting the results of the routine MRI I had yesterday. I am learning to deal with the anxiety of these scans but I am anxious. My husband forgot about the MRI even though I’d told him a couple of times as recently as the day prior and had asked him to accompany me. His alarm went off yesterday morning at 6:30, his normal time to get ready for work. However, he was planning to go to work after my scan and it was not until 9:45. He was getting up too early to have remembered the scan so I reminded him and he came back to bed. My husband is more forgetful than I would like. But I understand that he is not doing it on purpose and further, he would have seen the appointment on his calendar. Plus, he doesn’t live in the perpetual state of Potential Cancer so there are some things he doesn’t quite understand about my experience as a cancer patient. Similarly, a close friend apologized to me yesterday for checking in with me about my MRI. He’d had quite a stressful day of his own and again, he doesn’t live in the state of Potential Cancer. Before I lived there, I didn’t really worry so much about my friends’ scans once they’d had no evidence for disease for a couple of years. The panic subsides. I don’t want my husband or my friends to live in the Potential Cancer state with me. I don’t wish that on anyone just as my friends with metastatic disease wish it for others. But the actions that come from understanding our situation are important.

As a world, we need to find a cure for breast cancers. But as individuals, we also need people in our lives who have an awareness of the unique stresses of being a breast cancer patient who are also able to convert their awareness into emotional support. You,  friends and family, may be helpless to prevent recurrence or to cure a loved one’s active disease, but you can provide emotional support. You can make living in the Potential Cancer state or the state of Perpetual Cancer more bearable and less lonely.

Perhaps it would be helpful to explain to you what scans mean to me. A clear scan means that I can live another six months with “no evidence of disease”. A clear scan to a person with metastatic cancer means that they can live with “no evidence of progression”.  If my scan shows evidence of cancer, I will go into the fast paced chaos of not knowing and having many tests, the perpetual “hurry up and wait”. If it turns out that I’ve had a recurrence, I will likely undergo a more aggressive treatment protocol than I did in the past and to undergo previous treatments for which I now appreciate the full impact having gone through them before. By the way, a lot of cancer treatment sucked. My family will suffer. My patients will suffer. I could go on and on.

I keep telling myself that the results of a scan, assuming accuracy, don’t tell me anything about myself that wasn’t true yesterday. I often tell my patients this about the diagnoses I give them. “You are the same person you were yesterday.” On myself, this is a hard sell. I am a clinical psychologist. Nobody comes to me unless they already know something is wrong. Something is not going well. There is a problem. I didn’t know I had cancer. I felt fine. There was no lump. Right now, due to my mental and physical health practices, I feel healthier than I have in years. But cancer can hide for  a long long time without someone even knowing something is wrong.

For me as a cancer survivor, it is surreal at times to realize that I can’t trust my own sense of my body. I can’t gauge my own health. My body can lie to me.  I try to be a very truthful person with myself and with others. Honesty and clarity are extremely important to me. This is hard.

Offer your loved ones your understanding and support. You don’t need to live with us and we don’t even want you to,  but do connect with us. And when the Pink wave  tells you that awareness is action and pink is helpful, put your money and volunteer time somewhere else. Somewhere that helps.

Gray and black clouds
hide the sky.
The light shines through
There is clarity above.

The clouds will burn off
maybe today
maybe tomorrow
some day, certainly.

I will see the sky
I’ll know if I traveled
during the quiet space
between dreams
to the terrifying place
the familiar chaos,
the Cancer Place.

This morning's sky inspired the poem, my first in nearly 20 years so be kind.

This morning’s sky inspired the poem, my first in nearly 20 years so be kind.

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