Instead

Today’s theme is based around the word instead. I cannot fathom why some wrong ideology continues to persist around breast cancer and breast cancer awareness instead of shifting to concepts and vocabulary that is more truthful.

Exercise and nutrition do not prevent cancer any more than they can cure cancer.

Instead . . . exercise and nutrition reduce risk and can improve anyone’s health. This is true for reducing the risk of heart disease, diabetes, cancer, and any number of diseases, but it is not a guarantee.

Don’t tell me I look good, or even worse don’t say that I’m pale, look tired, or must not be feeling well. I realize my summer pale shade will fade to my usual pale, but pale is how I look. I’ve been pale my entire life.

Instead . . . tell me it’s good to see me. It’s very welcoming and removes all assessments of how I look or how I’m feeling. It’s that simple.

Promoting mammograms and early detection as saving lives is not accurate. 30% of early stage breast cancers go on to become metastatic. Mammograms and early detection are not cures. There is no cause and effect relationship between early detection and assured survival. Identifying breast cancer at an early stage is certainly preferable as to when it’s already stage IV. There is enormous value in finding it early. A person has a shot at a normal life. Mammograms are neither prevention nor a cure. They do not catch all breast cancers and they do not catch all the ones that they do at an early stage. Mammograms do not reduce risk. Mammograms are good, yet imperfect, diagnostic tools.

Instead . . . people must be informed so they know the chances of recurrence.

  • 30% of cases will have a recurrence. Forgive the repetition.

One reason metastatic breast cancer, or metastatic cancer of any type, is difficult for people to learn about is it’s scary and no one wants to think it could be them. People who have finished formal treatment want to be done. They use the words cancer free and cured freely. There is no way of knowing how I’d feel if I had been diagnosed at an early stage because it wasn’t my reality, but I think I would have been mortified if someone kept shoving the statistics and signs of MBC in front of my face when I was doing my best to be done with it. And shoving is what I imagine it would feel like. Maybe it’s a similar feeling to how I feel when the barrage of pink comes my way almost every blasted day in October. I want it to go away and leave me alone. If I want something pink, I will buy pink flowers or drink Pepto-Bismol.

Instead . . . we all need to be more compassionate and respectful. I include myself in this statement because I can have a tough time understanding how some friends and family just don’t get it.

This idea of otherness rather than togetherness is one reason why there are separate support groups for earlier stage survivors and those with stage IV. Out of sight, out of mind. Different conversations. True, yet some of those conversations are worth having together. If not together, there must be a way to provide information about warning signs. Those with earlier stage cancer do not want to think about cancer returning or it turning metastatic. They want to believe they are cured. There is no such thing. There is remission. There is hope that it is in a person’s past. Hope is not to be underestimated. For many, it will be in the past. It won’t be for that 30%. That’s roughly 1 out of 3 survivors.

Instead . . . people need to be educated so they know what warning signs to look for.

Signs of metastatic breast cancer to other areas may show up as the following symptoms:

  • Brain – Frequent headaches / Vomiting / Dizziness / Impaired intellectual functioning / Mood swings / Balance issues / Fatigue
  • Bone – Bone pain commonly felt in back, arms, ribs, or thighs with no obvious cause.
  • Lymph nodes – Swelling in chest, armpits, or neck areas.
  • Lung – Sharp pains when breathing in / Fatigue
  • Liver – Pain near ribs on right side / Bloating / Weight loss / Changes in appetite / Fatigue

Patients often feel like they need to agree unwaveringly to everything their doctor suggests. They fear they will be labeled as difficult, have less time spent on them, or that they will receive subpar care if they disagree with management. I hope not.

Instead . . . patients must ask questions and be their own best advocates.

Here are some possible statements and questions:

  • I don’t understand. This information contradicts something else I’ve been told. Here is what I’ve heard/read. Can you explain it to me again?
  • What are the risks of this treatment? What are the side effects?
  • Why is this recommended for me? Is there something else to try?
  • Are there clinical trials here or through another clinic/center/hospital?
  • I need (fill in the blank – a hopeful approach, a second opinion, more information, less information, stronger meds, different meds, different communication, etc).
  • I am experiencing (fatigue, neuropathy, lack of appetite, depression, etc.). What can I do to address it?
  • That isn’t what I said/asked. Let me try again.

When someone dies from breast cancer, sometimes the phrase “from breast cancer complications” is used. It seems to be one of many hot button phrases this fall.

Is metastatic disease a complication?

Reporting death as a result of breast cancer complications needs to stop. Many illnesses that can be fatal can be brought on due to low white blood counts because of a weakened immune system from treatments. This includes the flu and pneumonia. Organs like the kidneys, liver, and lungs fail or shut down. Organ failure is not a complication. Metastatic cancer is the only kind of cancer people die from. My opinion is they don’t die from it so much as they are killed by it.

Instead . . . say killed. Metastatic cancer kills.

Breast Cancer Awareness Month gets under my skin more each year. I don’t think I’d mind awareness so much if it had the right drivers.

Pink products do not cure cancer. They do not appropriately fund (or fund at all) research. They do precious little to raise awareness. Awareness should not be tied to pink merchandise with no other messaging than a color. Do I want a glittery pink dog on a t-shirt? I do not. Is a pink mug with some clever slogan going to make my treatment more effective? It is not. What does all this pink do?

People buy these products in the name of awareness and they are unaware that very little goes to research, and that an even smaller slice goes to research for metastatic breast cancer. Do your research and know how your donation to any charity or foundation where you contribute is being used.

Instead . . . when you see pink merchandise, respectfully inquire about where the money is going and how it’s used. Then educate about other alternatives that support research.

Pink isn’t even applicable to me. It’s as if I’m excluded from the very awareness month that should recognize me.

And there it is.

I don’t truly belong because I don’t have breast cancer.

I have metastatic breast cancer.

Many in the MBC community feel royally miffed (including myself) that there isn’t more of a focus on metastatic breast cancer during October, and I think I’ve figured out that perhaps the intention was never to focus on us. We get a day out of the month. This year it was Oct. 13th.

Thanks?

The colors for metastatic breast cancer are green, teal, and pink. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality. Teal symbolizes healing and spirituality. The pink ribbon represents that cancer originated in the breast. I don’t want a ribbon, or a bracelet, or a t-shirt.

Instead . . . I want the money spent on those items to go toward research for more treatment options for metastatic breast cancer. After a quick internet search, I discovered I could buy a pack of 50 pink breast cancer pins ranging between $40 to $50. How many of those pins are out there? You do the math.

Now, consider the mugs, bracelets, t-shirts, and other pink nonsense.

Next, consider what might be possible if the money spent on all those products were directed to stage IV research.

Stage IV needs more.

Rather than buying pink products, you can donate to my Nifty 50 Fundraiser. 100% goes to metastatic breast cancer research at UW Carbone (also known as the More for Stage IV Fund).

Do that instead.

Nifty Fifty

Today marks my 100TH post! Numbers are significant in my life. There are lab numbers. Survivorversaries. Birthdays. I remember dates for all sorts of events in my life.

Two numbers of significance in my life are 50 and 50,000.

I will celebrate my 50th birthday in 2020.

Yes, there will be a party.

I am raising $50,000 for metastatic breast cancer research at UW Carbone to celebrate such an important milestone in my life.

Today, I take the opportunity for some self-promotion devoted to achieving my goal. I would call it selfish self-promotion, but that’s only partly true. It’s true I’d love to benefit. The funds raised will all go to research and that hopefully means many will benefit. Most of today’s blog highlights information on my fundraising page. If you haven’t seen it, today’s the day.

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My goal: Raise $50,000 For

Stage IV Breast Cancer Research

To Celebrate My 50th Birthday

 

My Diagnosis

I have been living with cancer ever since my diagnosis on March 14, 2012. Tests, scans, and biopsies were thrown at me one after the other in quick succession to determine what stage was to be attached to my diagnosis. On April 13, 2012, the day I started chemotherapy, I learned I was stage IV.

Facts and Research

Stage IV cancer means cancer has spread, or metastasized, to an area other than the primary site where it originated. Breast cancer that is contained to the breast and is stopped there doesn’t kill people.

Metastatic cancer kills people.

The facts are:

  • 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.
  • 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 . . . unless you know precisely where the money is directed and for what purposes. That leaves too many breast cancer patients feeling isolated, forgotten, or that our lives aren’t worth as much as early-stage lives.

Putting more funds toward research, more treatments, and more options for stage IV lifers benefits ALL breast cancer patients. 100% of donations to Nifty 50 directly benefit metastatic breast cancer research at UW Carbone.

The UW Carbone Cancer Center

Thank goodness for the UW Carbone Cancer Center. The UW Carbone Cancer Center where I receive all my care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will always receive quality care and the best treatments available.

Initially, I received 12 cycles of chemotherapy for six months. I took several different anti-cancer and oral chemo pills for several years afterward. For the past three and a half years (and counting) I’ve gone back to more formal chemotherapy treatments and infusions. There have been over one hundred of these. I will have more. I need more.

My Mission

Part of my purpose is to change perceptions on stage IV cancer. People are living longer and stronger with this awful disease thanks to continued advances in cancer research . . . research that must continue.

I have created a space for myself where I focus on living in unrelenting wellness. I do my best to disregard medical timelines and ignore medical statistics. I strive to think outside the medical box and I’ve developed a mindset dedicated toward surviving, thriving, and living well with cancer. I live and lead by example. I work hard to be active whether it’s summer or winter, rain or shine.

My mom passed away from metastatic breast cancer in 2013. She would be very pleased with how well I’m doing today.

I know I will always be in treatment.

When one treatment fails me, I need to move on to another one with the hope it will be more effective and effective for longer.

Research equals hope. Research, however, is extremely expensive.

I am hopeful cancer researchers are on the cusp of making the next great breakthrough in treating, and eventually curing, breast cancer.

I am always hopeful.

Go to my Nifty 50 page to make a secure donation.

DONATE HERE

Thanks so much for your support.

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?