The Lesson of the Milkweed

Crunchy leaves cover a hard ground. A gray sky creates a contrast against the bare branches. The air is chilly. Autumn is a season that doesn’t scream softness. Softness is there. I have been surprised to discover it in unlikely places this fall. Sometimes it’s harder for me to find, but it’s still there, waiting for me to find it.

October needs softness because Breast Cancer Awareness Month bombards me with hard. Awareness is hard. Pink is hard. People who appear to celebrate the month make it hard. And then there’s me because I can make it hard on myself.

I go for a hike when I can to exercise and relax. It sounds like a contradiction, but exercise in nature achieves both for me. Pheasant Branch Conservancy is one of my favorite places to walk and a source of joy. I ventured there last week and stopped in several places to open up milkweed pods. They are remarkably soft. An older gentleman with a shock of white hair noticed what I was doing and wandered over. He joined me in releasing milkweed seeds into the breeze. There we stood, watching the wind carry them away. He laughed and that was one of the best parts. He told me about milkweed bugs. Then he drifted away, kind of like a milkweed seed himself. I did the same in another direction.

Opening milkweed pods is a beautiful example of finding softness this month. A rough outer exterior protects silky soft seeds that float away in the wind. Opening them as a child and watching them dance and fly was pure joy. It made me feel like I was encouraging their quest to find a new home and witnessing it happen. It still does.

This year, October 13th is Metastatic Breast Cancer Awareness DAY. It’s a prime example of some hardness for me. Yes, a whole day is set aside in breast cancer awareness month for the only kind of cancer that kills. It’s also Yorkshire Pudding Day. Here are two facts on this special awareness day:

  • 116 women and men a year die every day from MBC.
  • There are around 155,000 people living with MBC in the U.S.

 

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Milkweed seeds at Pheasant Branch Conservancy

 

I need more milkweed seeds. Lots of them.

Sitting in front of my fireplace on the first few evenings when it’s cold enough is another time when softness settles around me. There is softness in the glow and I feel wrapped in warmth. Those first fires of fall are extra special because it sets a toasty tone for fall.

Here are a few other favorites:

Savoring hot tea, coffee, and hot chocolate again.

Hanging around my house in my plaid flannel pajamas.

Snuggling under warm blankets with a good book.

Immersing myself on a trail in the woods while surrounded by trees that have exploded in color.

These actions are a vital part of self-care and letting myself know I am important. They are all external examples even though I have a part of them.

Self-care is super soft. I need to look for soft places within myself, too. Softness must be internal. I can find soft places within when I slow down and enjoy the moment. Rushing isn’t worth much. Other ways I can practice self-care are by showing myself empathy and understanding, forgiving myself when I make mistakes, and allowing space for my feelings. Negative self-talk is hardness; compassionate self-talk is softness. Self-care is love.

Cancer causes hardness because no one comes out completely unscathed. It’s exhausting. Some hardness is on the outside, some on the inside. You carry outer and inner scars. Cancer visibly ages a person. A person develops a thicker skin and smiles when insensitive comments are made. Many experiences and conversations are difficult to endure and process. You emerge from treatments feeling battered, fatigued, and having experienced traumatic physical and/or emotional changes. If you’re metastatic, tolerating toxicity is ongoing. None of these are soft images.

There is so much talk about being strong and fighting or battling. Strength is a double-edged sword. I am strong. I work on physical and emotional strength. The hero Odysseus was a recurring reference in high school among my friends because he was rough, tough, hard to bluff, and used to hardships. I’ve channeled Odysseus’s strength regularly over the time I’ve been living with cancer to move through hardship after hardship. The strength you call upon each day to make it your best is empowering strength. Your strength is weakened when it’s exerted in battling and fighting cancer, or people and attitudes that go against you. I need to focus on the strength that empowers me and not waste it in battle mode. My strength goes toward empowerment and living.

Fall is a wonderful opportunity to let things go. Trees let go of their leaves with ease. Fall can be a time to let go of hard things. Letting go is hard because changes usually are difficult for me. Still, my life will be easier if I only let go of one hard thing. Letting go of many could bring more happiness to my life. What will it be?

Consider responding:

  • What can you let go of this fall?
  • Where do you find softness in nature?

Patients Have Names

I transferred from a smaller cancer clinic setting to a cancer center in a major hospital late last summer. I still believe I am getting excellent medical care.

There are some differences, differences I don’t like. They stem from the sheer newness of my experiences and the size of the cancer center. In time, the newness hopefully will feel more familiar. The gargantuan feel of the hospital maybe will feel smaller as I’ll only go where I need to be.

I’m not so sure about the size. There are two waiting rooms for labs. I’m given a pager that lights up and vibrates when it’s my turn like the ones used in restaurants when your table is ready. Sure, it’s a way to keep things moving quickly and it provides some privacy, but I have a perfectly usable first name. Then I go to another level for the breast center clinic where I wait in another waiting room. After the office visit, I trek upstairs again and get comfortable in a third waiting room where I wait for treatment. I check in at some type of reception area each time. So far, I have had moderate to long waits in each of my waiting rooms with no updates as to how much longer I’ll be waiting. I took my time between waiting rooms two and three last time and went to the germateria for lunch. I still had a good wait when I made it to the last waiting room.

I feel confident about the growing doctor-patient relationship I am developing with my new oncologist. It’s different from the one I had with my former oncologist, but it should be as she is a unique person. Oncologists are not one size fits all just as patients are not.

The treatment area is where I’m identifying more of a repetitive insensitivity issue.

It’s less personal. An identification bracelet is strapped on and it’s scanned to populate my personal information. It beeps. Every time. I hate that bracelet. It’s one of many factors that make me feel like I’m an illness. I will move past it.

I have a name and I’d like for my nurses to use it.

On my first visit there, the nurses noted it was my first treatment so I needed to be watched for a possible allergic reaction. No, it was only my first treatment at that facility. It was my 10th with this protocol and my 109th overall. For whatever reason, this important data wasn’t coming up. It’s a distinction I happen to think is worth knowing and should be correctly documented. Could just be me. Talking to me, bringing the patient’s voice into the discussion provides meaningful, not to mention accurate, information.

I know I have to give up comparing how my new place is different from my old place, but I never had to wear an ID bracelet in the old place. Everyone knew me. They took a genuine interest in me. We knew things about one another’s lives on personal levels. If an appointment needed to be changed, I was called. Here, I get a letter informing me appointments have already been changed without consulting me if the changes work for me.

Patients also have telephones by the way. It’s a good thing I’m not working and have a little more flexibility.

There’s more. Most of the nurses just swing in and out of my treatment cubicle and it’s all business. Some tell me who they are; some do not. Some are friendly; others not so much. I usually have more than just one per visit because they are running around caring for multiple patients at a time. I’ve asked for their names. My bracelet gets scanned and apparently that’s sufficient.

I have a name.

I am more than my ID bracelet. I am not a number. I am not an illness, and I am so much more than a patient. When multiple nurses shuffle in and out, it makes me feel like I’m not assigned to any nurse specifically. I feel like I’m an inanimate object on an assembly line. Truthfully, I feel a little bit that way when I have to visit three different areas on one visit. I feel that way when I’m not consulted about appointment changes. Asking if bigger is better in terms of patient care is a whole other topic.

I have had a couple of very friendly nurses. They visit with me and I do feel like I’m starting to get to know them and build connections. Personal connections and positive relationships make my health care better. I know their names. I recognize them. It helps me feel like I belong. Patients have names and it’s not unreasonable for nurses to use them. I empathize that they are spread thin and have a lot on their plate. I get that a lot is asked of them. I know from visits with my nurse friends at my old place how they are often left out of the loop with decisions that affect them. I know that more and more is being asked of them and that they have to do more with less. I know that some of these decisions don’t put the interests of the patients first. I know they referred to me as family. I felt the same and I miss them. I know all their names (Karen, Sue, the two Brookes, Kari, the two Ambers, Amanda, Sandy, Kay, Kelly, Justin, Nina, and Beth).

Is knowing a patient’s name too much to ask? I don’t think so.

As a teacher, calling a student by their name lets the student know you recognize them, that you care about them and their success, and it fosters a sense of trust. Students feel comfortable and, oh, I don’t know, it has a positive impact on learning. If I were a parent, I would not want my child to have a teacher who didn’t know their name. I would like my nurses to know who I am. I believe being recognized, feeling cared for, and trusting your healthcare providers will have a positive impact on care given and care received.

Going forward, I will be proactive and introduce myself, letting my nurses know that using my name makes me feel valued. I won’t be able to change the three different areas I visit when I’m there. I won’t be able to change how long I wait. I won’t be able to ditch the ID bracelet. I may not even be able to do much about whether nurses take my encouragement to use my name. All I can do is try.

Update: Most of this post was drafted about one month ago. My past two visits have been more positive in terms of my interactions with my treatment nurses. Situations change. I hope mine has changed for the better. I could have chosen not to publish this post, but I went ahead with it because it’s important to remember patients aren’t numbers, or statistics, or are treated like part of the equipment we are hooked up to when receiving treatment. We are people. We have feelings. We have names.

 

Reclaiming October

Breast Cancer Awareness Month is almost here. An inundation of pink will accompany promises that a cure is just around the corner and that change is imminent. Everywhere you go, there will likely be some campaign to raise awareness with the belief that a contribution to the cause will go to research that will find a cure. It all will be so happy and upbeat because pink is pretty. Some will reminisce and post photos of life going through treatment and compare before and after photos. The media will highlight survivor stories.

Fine.

Really.

I am not trying to take away from someone else’s survival. There is room for everyone. I am trying to shift the focus and include a greater focus on metastatic breast cancer.

I know I am beautiful but I don’t post before and after photos because I still wear my wig. There will never be after photos for me because I will always be in treatment. I do hope to ditch the wig. I don’t think there is a lot that’s pretty about what I go through month-to-month, or even week-to-week. October is a tough month. It’s hard like a brick wall.

But I’m a wrecking ball.

Here I come.

I am gearing up for one hell of an October.

I’m taking the month back and making it about metastatic breast cancer. It’s a golden opportunity to put MBC in the spotlight.

I am renaming it Metastatic Breast Cancer Action Month.

#ActionMBC

Throughout October (and beyond), I will be taking action directed toward change. I will tweet, post, blog, and talk about the facts of MBC in attempts to create visibility and push for more attention, funds, and research to be directed toward this group of the breast cancer population. I’ll write letters and talk to anyone who will listen.

It’s vital I reach people who know little about this world. Many do think awareness is the way to end cancer. I disagree. Giving people accurate information about metastatic breast cancer is part of recruiting support for needed change. Facts on MBC will become tweets and posts. A few unsolicited opinions may be inserted. I’ll also display them on public bulletin boards and maybe even plaster them on bathroom stall doors to provide some meaningful literature in all of the finest restrooms I frequent. Yes, I did just write that. A person might as well spend a couple of minutes learning while occupied with bathroom business.

It amazes me how people don’t know some of the things I thought they would. They may even work in the healthcare industry and still be somewhat uninformed about the effects of metastatic breast cancer. They may be survivors and completely oblivious about the chances of recurrence. I don’t understand everything there is to understand about cancer. It’s my opinion the general public doesn’t have accurate information on secondary cancer and I would like to reach this audience.

Preaching to the choir doesn’t do much. Providing information to people who don’t even sing has the potential for change.

I want to provide information this month that:

  • Metastatic breast cancer is with those of us who have it for the rest of our lives. We will still have it after October.
  • No one has done anything to get cancer. It affects people of all ages, races, sizes, education levels, languages, and incomes.
  • People who have gone five years being free from cancer after treatment ends can still have a recurrence and develop metastatic cancer.
  • Metastatic cancer kills people.
  • 10% of patients already are Stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • It’s projected that 116 people per day will die from metastatic breast cancer in the U.S. in 2019. Five of those who die each day will be men.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits.
  • People who have any type of cancer, or have had cancer, or are labeled as having a pre-existing condition, deserve health coverage from insurance companies. Affordable health insurance is a basic human right.
  • Awareness and prevention programs have done nothing to lower the number of deaths from MBC.
  • We need more research, more treatment options, and more effective treatments for metastatic breast cancer.

We need more attention from others outside of the metastatic breast cancer community. I often feel like we are shouting from the rooftops from only our own village. It takes more than a village. It’s going to take all the villages.

I regularly hear that we need more research devoted to metastatic breast cancer. It’s often my own voice I hear saying it. I’m not just talking the talk, but now I’m walking the walk. A few months back I created a fundraiser through the UW Carbone Cancer Center where I receive treatment.

Click here to access my fundraising page. My plan is to devote a separate post about my goals for this at the end of the month. I encourage you to make a small donation and feel nifty with me. You’ll see what I mean after viewing my page. Don’t delay. Don’t put it on your “To Do” list. Once it’s done, it is a proud part of your “Ta-Dah” list. I am grateful for your support.

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Click here to watch a video about UW Carbone.

I am committed to raising money for research.

I am committed to making my voice heard.

I am committed to doing more.

I have plans to speak at several places in the community. My story will be displayed in a couple of businesses in October. I’m busy networking to keep the momentum going after October and for the better part of 2020. All this takes me quite firmly out of my comfort zone. My health often causes me discomfort anyway, so I might as well find ways to show it I am still the boss of me. I can wrestle and rumble with it and make it uncomfortable with me.

 

Please consider responding:

  • Please chime in with other MBC needs that I haven’t mentioned.
  • How can you use your platform and advocate for change this month?