Good News

How often does a metastatic breast cancer patient get good news?

I imagine it varies. Writing from my experience, I don’t get good news that often. Bloodwork has been steady and decent. Stability is considered good news. Stability or slow growth is usually how news is presented as “good” in my situation. I want more. I am thankful my news has been mostly good over time. Initial lines of treatments were highly successful. Mild, minute progression was the usual result when these stopped working. Millimeters. Sometimes these millimeters weren’t even considered medical progression. They sure mattered to me. Millimeters add up over time.

Millimeters crush my hope.

I’m still able to do many things. I am active. I’m independent. I also know others have received news much worse than mine. Grief weighs heavily on me when I learn that someone I know in person or online isn’t doing well or has died. That last piece is a huge reason why I don’t share news, good or bad, on social media platforms. Someone always is struggling and the timing never feels right. I don’t share much health news online.

What happens when I do get good news?

I don’t trust it.

I must not understand it.

I don’t allow myself to feel joy because I have to keep myself in check.

It will be taken away if I get excited.

It won’t last.

MBC has done a number on me.

I hope for good news. I pray for it. I try to do whatever I can to tip the scales in my favor. I also have fears and have been conditioned from too many similar reports of minor growth to not expect that is what I’ll hear. Patients with metastatic breast cancer don’t get a lot of good news. I imagine our oncologists don’t get to give it to us very often either.

Well, I got good news. Whatever is ahead of me, this good news can’t be taken away. I understand it. It wasn’t a mistake or some fluke. I held off in getting too excited until I had a face to face with my oncologist to see if our definitions of what good news meant were the same. We are on the same page.

I am feeling joy. I get to feel joy.

My October 2019 scans showed regression.

My largest spot is now a little smaller than it was in 2012 when I was diagnosed.

I have waited YEARS for this kind of news.

Millimeters also make a difference over time when they are being subtracted.

If size is the only thing that matters, then I have regained ground to where I was over seven and a half years ago. Size isn’t the only thing that matters, but that is how I’m framing my thoughts. There are other factors, especially the physical and emotional tolls of treatments, retiring early from teaching, the never-ending obstacles of living with MBC, etc. All news is not golden in my life. Bad news has been hard. These all have had major impacts.

Research also has major impacts.

Research works.

Trials work.

My privacy has always been something I want to protect, and I will continue to be a private person. Privacy is the other reason I do not share much publicly. When others share good news, I always find myself wanting a little more information so I can assess if I may be eligible for their protocol and have a chance for the same kind of good news. This is one time where I will share more details. It may help someone.

I have been participating in a phase 2 trial since February that I was matched with through Foundation One. Foundation One is a lab that does in-depth genomic testing that (as I was told) goes deeper than what genetic testing through my treatment center clinic involved. It looks for mutations. Most of the time mutations are not found. If there is a mutation, there hopefully is also a trial that would target that mutation, as there was for me.

The cancer in my body is identified as estrogen positive, HER2 Neu negative. An activating mutation of ERBB2 (Her2 Neu) gene was identified. This means I do not have too many of the Her2 Neu genes. Having too many would be an amplification and make me positive. I am negative. The issue is the gene is OVERACTIVE and doing the wrong thing. The overactive aspect can be targeted.

I also have a mutation presenting as a variant of ESR1 in my hormone receptors. It is a variant of an estrogen receptor that is not active and therefore means the receptor is ON all of the time. People do not respond well to aromatase inhibitors where this is true. A mutation here explains why previous lines of treatment stopped working or haven’t worked as well. This mutation can be targeted as well.

Herceptin, neratinib, and faslodex are targeting both these suckers.

I’ve traded one batch of side effects for another set. Some have stayed the same. I’ll push on and keep doing everything I can. I pray I can stay on this regiment for the long haul and that it keeps doing good work.

Cancer acts differently in everyone. It can still behave differently in those of us with the same type. I hope those of you in similar situations get good news, too. We all need good news.

There is more work and research to be done, for myself and for others.

Research gives me hope.

I live in hope.

Still in Treatment Bells

Yes, the title is correct. I have read a number of End of Treatment Bell posts over the years. This one has a twist.

Today’s post may be unpopular and upset women and men dealing with metastatic cancer. I am sorry if my words cause distress. There is enough of that in your life and mine. I welcome respectful comments and will respond respectfully in turn.

For those readers who aren’t familiar with an end of treatment bell, it is a bell rung by patients at the end of a final treatment to celebrate the occasion.

If you are a new reader, it’s important to know I’ve had metastatic breast cancer from the start of treatment back in 2012.

Prepare for Controversial View #1.

There was a time when I actively advocated for bringing one of these bells to my treatment center. I supported it for others even though I had metastatic cancer. Even if I would never ring it, I wanted others to have the opportunity. I truly didn’t think hearing it would bother me. I thought I would equate the sound as hope for someone’s future. My intentions were good. I didn’t understand the arguments I read from others because my perspective was different. My plan was to set benchmarks in time and ring it purposefully at those points in time.

I didn’t understand.

I have read. I have reflected. I have changed my opinion. I am deeply sorry I haven’t understood and that it’s taken me longer to get where so many are in their beliefs. I was wrong. I am grateful that the idea for a bell was rejected.

I was told no for the exact reasons so many others have mentioned: Some patients would never get to ring it. It would not be sensitive to their needs.

I have read other reasons on social media from those who do have to hear the clanging of end of treatment bells where they receive treatments and these brief accounts have been gut-wrenching to read. There is trauma in the sound that is beyond painful and harsh. One description compared it to being kicked in the teeth. My perspective has changed. Hearing these bells now would make me feel discouraged, depressed, and envious. One person’s celebration would be my despair. I would not feel good about these feelings or thoughts.

I believe the initial intentions of these bells were good, but also that the decisions were not well thought through and inclusive of all patients. The repercussions have not been positive for everyone. I haven’t read anything about end of treatment bells being removed from treatment areas that have them.

Prepare for Controversial View #2.

Ring the bell.

Ring the bell every chance you get. Ring it when you arrive at your office visit appointment, after your office visit, when you enter the treatment area, and when you finish treatment.  Ring it SEVERAL TIMES DURING ONE VISIT. Ring it because it wasn’t intended for us. Ring it because we weren’t valued in the decision.

My point is if they can’t see us (those with metastatic cancer often are the unseen patients in news or fundraiser campaigns), then we are going to be heard every opportunity we have.

Change the meaning of the bell. It would either become meaningless because we are removing its purpose . . . or something else could happen. Is it completely crazy to think over time a shift could occur where the only people ringing the bell would be stage IV metastatic patients? Could ringing it become a reminder that 30% of patients will become metastatic if more research isn’t dedicated to more effective treatments, medications, and a cure for us? Could it be recognition that 10% are already metastatic at the time of diagnosis?

There are die-ins. Protests. There are many forms of advocating for change. A Still in Treatment Bell could be one more way to use our voice.

Does changing the word end to still make you feel differently or pretty much the same?

Ringing the bell would likely not be welcomed. Good. Let more research happen and then maybe no one has to hear it ring. I really don’t want to ring it but I will ring it with a vengeance if one ever appears where I receive treatment.

I imagine I’d shout, “MORE FOR STAGE IV” as I ring the bell. No rhyming poem. No plaque. No explanation. Just a clear and emphatic shout for what is desperately needed.

I imagine I might be told:

“Please don’t ring the bell. It’s for end of treatment survivors.”

“That bell is not for you.”

“The other patients feel uncomfortable with the constant ringing.”

“You are ruining it for other patients.”

 

How I’d hope to respectfully respond:

“Wouldn’t it be something if no one had to ring the bell? More research is needed for all of us. MORE FOR STAGE IV.”

 

Cancer has changed me. There are times I feel like I’m going nuts. Maybe I need to embrace it and live more of the way I feel.

What does that mean?

It means I should bring my own damn bell to ring at treatments. Maybe I will.

 

Consider responding:

  • How have conversations you’ve had been received in places where bells are present?
  • What are your thoughts on still in treatment cymbals?

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?

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?

Sunshine Blogger Award

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Sunshine is synonymous with warmth. It feels good when it’s carried on a summer breeze. It’s reassuring when it makes a frigid day in winter a few degrees warmer.

And sunshine is pure Vitamin D for the soul when it takes the form of the Sunshine Blogger Award.

It is an honor to be nominated for the Sunshine Blogger Award by fellow blogger Abigail Johnston of No Half Measures. We both live with metastatic breast cancer. A nomination coming from her means a lot because I have admired her work, her strength, and her honesty as I’ve gotten to know her through the bits and pieces of her life she shares.

What is the Sunshine Blogger Award?

The Sunshine Blogger Award is an award of recognition given to bloggers from fellow bloggers. It recognizes those who are creative, positive, and inspiring. It celebrates people who spread sunshine to the blogging community.

What are the Rules?

These are the rules of the Sunshine Blogger Award:

  • Thank the person who nominated you, and provide a link back to their blogging sites.
  • Answer their questions.
  • Nominate up to 11 other bloggers and ask them 11 new questions.
  • Notify the nominees about their nomination via their blog or social media.
  • List the rules and display the Sunshine Blogger Award logo in your post.

My Answers to Abigail’s Questions

What led you to start blogging?

I love many forms of writing. I’ve written poetry, kept personal journals, and worked on picture book manuscripts. I have drafted a book about living with cancer. I brought it to completion and then I took it through more revisions than I could count. The hard part wasn’t writing it. As I began to explore how to publish it and whether to aim for a publisher or go the assisted or self-publishing route, it became clear that I needed to be more visible with whatever choice I chose. Blogging was a good fit for me to do this. It also showed I was serious about my goals and that I saw myself as a writer. What I discovered was it provided me with a way to use my voice very effectively and I enjoyed it. Blogging has made me more confident in other areas not even connected to writing. Blogging has honed my writing skills and I have become a much stronger writer. I have written a wealth of content I didn’t even know was waiting for me. I find the process and result intensely meaningful. I have connected with some amazing people.

Who is/are your childhood hero(s)?

A hero is a person who is admired or idealized for courage, outstanding achievements, or noble qualities. I’m not sure my childhood heroes displayed a lot of courage, noble qualities, or even had outstanding achievements. They were famous because of some quality of being super cool.

Wonder Woman comes to mind because she was independent, strong, fought for good, and was glamorous. She also had the lasso of truth and the invisible jet!

Dorothy Gale from the Wizard of Oz is an unassuming hero. She discovered truth and strength in herself and in friendships. She faced many obstacles and got through all of them.

Wonder Woman and Dorothy are not real. In real life, my grandma was my hero. Every fiber of that woman was good.

Who are the people in your life with the most influence?

Hmmmm . . . this is tough as there are many. I feel my parents still influence me even though they both are deceased. Teachers I have worked with and children I have taught have influenced me in innumerable ways. My dear friends with whom I can confide in and share anything with influence me with their wisdom and support. My fitness coach has changed how I exercise and think about moving and being strong. Undoubtedly, it will sound like I have a very healthy ego, but I would also say I am the person with the most influence in my life. With both of my parents being gone, I’ve grown to understand I am on my own, I am responsible for me, and I have the most invested in my choices and outcomes. No one else should have more power or influence over an individual than the individual.

If you could go back in time to meet one person, who would it be? Why?

My first thought was I’d go back and meet a younger me so I could warn myself that my future held breast cancer and then I could stop it. How? I didn’t do anything to cause it. Science doesn’t have it all figured out. There is no action I could possibly have taken. My second thought was that I’d like to go back in time and meet an ancestor I never knew but who had an impact on influencing the trajectory of my destiny. I believe we are influenced by ancestors we’ve never met because of the effect they had on our parents and grandparents who in turn influenced us.

If you could live anywhere in the world, where would it be and why?

I’m happy where I am. When I’ve entertained thoughts of moving, I think about places in or near a medium-sized city where I can get away easily. I love mountain and forest settings. Perhaps I would wind up near Yellowstone National Park surrounded by blue lakes, wildflower meadows, mountains, and wildlife.

What is your favorite book and why?

My most recent favorite is hands down Where the Crawdads Sing by Delia Owens. It combines a mystery, emotion, an original story, and absolutely beautiful writing. It’s one I want to reread and relish the stellar storytelling again.

What is the most memorable thing about you?

I have no idea. I’ve never had to remember me before. I get a lot of comments about my kind heart. I’ll go with that as my memorable thing.

Look at the most recent picture on your phone and tell us what it is and why you took the picture.

Ugh! It’s a boring photo of a letter from an insurance company. I needed to take it so I could verify payments I made to submit for reimbursements. I wish it could have been more exciting because nature photography is something I enjoy throughout the year.

Dogs or cats? Why?

Dogs. I had always wanted a cat because of all the kittens I played with when up at my grandma’s farm. My sister pushed for a dog. My family got a dog when I was in fourth grade and that was it for me. My heart swelled with love for a sweet little cockapoo who was affectionate, endearing, and a reliable companion.

What was the most difficult conversation you’ve ever had and why?

Health conversations continue to be at the top of my list. The most difficult was not even about me, but with my mom when she was in her final days. There was pain, sadness, and grief.

What one word sums up 2019 so far for you?

HOPE. So many of my thoughts and actions keep coming back to hope I’ve been given, hope I have, and my path not to give up hope.

My nominations for the Sunshine Blogger Award

A lot of bloggers I read already have been nominated for this award. Abigail’s blog is one of my favorites that I look forward to reading. I don’t think there is a rule about only receiving it once, after all, people receive more than one Oscar. I see being nominated more than once as another opportunity to highlight that blogger’s work. However, I also hope to spread the sunshine and warmth to others. Some of my nominations are for bloggers whose work simply makes me happy, some are an important voice for those who have cancer, some teach me new things, some inspire. Drumroll please . . . my nominees for the Sunshine Blogger Award are . . .

Holly Marie

Annie Forest

Dr. Perry 

Jet Eliot

Cindy Knoke

Val Boyko

Heather Stoker

Cathy Leman

Ilene Kaminsky

Pink Stinks

Surviving Breast Cancer

My Questions For My Nominees

  • What is your favorite dessert and why?
  • Who was your favorite teacher (K-12) and why?
  • What is the best advice you’ve ever been given?
  • When was the last time you laughed really hard? What caused it?
  • What do you enjoy most about the writing process?
  • Where (or when) do you feel happiest?
  • Where in life do you find inspiration?
  • When did you feel like a grown-up?
  • If you could fix one problem in the world, what would it be?
  • Who would you invite to a dinner party if you could choose 5 famous people living today? Short reasons for each would be welcomed.
  • What is one word you can use to describe yourself? No need to explain unless you feel it’s needed.

Let the sun shine in summer and in winter.

Let it emanate from our inner being outward.

Let it shine through our words and blogs.

Find a way for it to shine. Always.

The New Abnormal

Those diagnosed with any form of cancer immediately are thrust into a world known as “the new normal.”

It is anything but normal.

“The new abnormal” would be a better name.

Normal will never happen again for me. My reality of attempting some form of normal for the last seven years doesn’t mean life is normal for me. It means I’ve learned how to exist in crazy. Maybe I should refer to present-day life as my old crazy because I’ve existed this way for so long. The new normal phrase has always rubbed me the wrong way because normal was ripped away and replaced with nothing of the sort.

Is calling what I do the new normal supposed to somehow make me feel normal? It doesn’t. Instead, it makes me feel like I can’t even do the new normal normally. Is it meant to make me or others feel better? It doesn’t make me feel better. I’m not sure if it makes others feel better. It potentially minimalizes what I do in the eyes of others. It invalidates my struggles in what really is abnormal because of the language that this is the norm.

The new abnormal is a topsy-turvy world of back and forth. It’s a world of opposites. I have felt wonderful and miserable.

I’ve gained and lost weight even though my level of exercise has remained about the same.

I’ve had my share of down days plagued with fatigue and others with more steroid induced energy than I know what to do with.

I’ve had no appetite and other times where I’ve eaten everything in sight.

Diarrhea. Constipation. One word sentences here are fine.

The medical world is a potpourri of repeating abnormalities. There are more one word or near one word sentences coming.

Labs. Office visits. Treatments. Side effects. Repeat.

Scans. Anxiety. Regrouping. Repeat.

I call insurance companies and billing departments far more often than is necessary. I rarely did when my life was supposedly normal.

I’ve gotten to feel at home with nausea. Ondansetron works well for me when it hits.

I’ve gotten to feel at home with many other drugs and supplements. I know what works for me and what doesn’t. I know my body well. I think I have finally broken through and convinced my team NOT to give me one particular drug used during MRIs that causes a worsening reaction. Every office visit begins with a review of my long list of medications.

How is any of that normal whether it’s the new routine or not?

In between all of this complete abnormalness are all the attempts to squeeze in any normal moments that are possible. ME time. I exercise and plan activities I enjoy that will keep me moving. Time with family and friends fill in normal moments. Football season has started. Go Badgers! Special occasions are sprinkled into my schedule when possible. There still is meaningful work that matters to me. Whereas my schedule had always been fairly rigid, I love the flexibility I now have. Being able to focus on purposeful work has been one part of my new abnormal that feels pretty close to my old normal.

The only constants are change and the need to live in the moment. Cancer has taught me lessons in change repeatedly. I am more present. It’s why I like #NotTodayCancer so well because I can be pretty definite about certain things as I go through my day.

The new normal is not the right term for how I live. Life is abnormal. Calling my life permanently abnormal is the best fit.

What even is normal?

Living in the Storm

The role of a teacher is important and valuable. A teacher’s influence is still seen years later. Students return to say hello, to thank you, to hug you, and to say they made it. It’s the best kind of recognition a teacher can receive. I enjoy seeing former students. The oldest students I taught must be around thirty-five or thirty-six years old by now. For the record, I’ve taught around 543 students. Admittedly, those numbers make me feel old, but it’s a good old because I loved teaching. Working with children brought me immense joy and sometimes it drove me crazy. There were good days and hard days as are inevitable when over twenty children were put together on a daily basis.

I remember one student of mine who had very troubling years getting through elementary school. He was violent and destructive. He scared children. He scared adults if I’m being honest. Staff eventually learned some of his trigger words and actions that foreshadowed he was close to losing whatever control he had of himself. One such signal was if he suddenly started clucking like a chicken. He was a teacher to us in that way. We all wondered if he would make it through middle and high school. He did. He returned with other graduating seniors several years ago to visit. We talked and he struck me as happy and excited about his future. He had plans to attend a community college and learn a trade. He told another teacher that he was better now. Elementary school held a positive place in his heart even though it was excruciating for him. He wouldn’t have returned if we hadn’t mattered.

Curriculum is significant, but HOW teachers teach it and the connections we make while doing so are even more important. I always thought my two largest roles as a teacher were to help my students become critical thinkers and to teach them to be kind to one another. Knowing how to think and be kind will positively impact the world more than knowing a lot about numbers, science, or words (all of which are amazingly awesome on their own).

I am finally getting to how all of this connects to storms. Life has storms. We need to know how to think and be kind when one of life’s storms comes our way. Storms are teachers.

Poems also are powerful teachers. Writers create images that stick with people for different reasons. Mark Nepo is a poet and spiritual advisor who has taught poetry and spirituality for over thirty years. He has written fourteen books and has a wide following. He also is a cancer survivor. His poem titled Behind the Thunder weaves together ideas of learning to be strong without losing yourself. I believe its point is that an event can change you but that you don’t give yourself over to it. At its core, the poem is about resilience.

 

Behind the Thunder

~ Written by Mark Nepo

 

I keep looking for one more teacher,

only to find that fish learn from water

and birds learn from the sky.

If you want to learn about the sea,

it helps to be at sea.

If you want to learn about compassion,

it helps to be in love.

If you want to learn about healing,

it helps to know of suffering.

 

The strong live in the storm

without worshipping the storm.

 

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Image credit: pexels.com

 

Cancer is one bleeping kind of a storm.

And no, I can’t use the word I’d like to use after a poem written by Mark Nepo.

It wouldn’t be right.

What a storm it is. It has drenched me. I have lived with this storm. Like a fish that has learned from water, and like birds that have learned from the sky, I have learned from the storm. I have suffered, but I feel I have also learned a little about healing. This is what the storm as a teacher has taught me:

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Image credit: pexels.com 
  • It’s better to exist in the storm from a place of healing rather than a place of suffering.
  • The storm has made me stronger than I knew I could be.
  • The storm hasn’t broken me. It won’t. It can’t destroy my soul.
  • Cancer has been a rather cruel and unrelenting teacher, but effective. Maybe it intended to turn me bitter and negative, but it failed. Through it, I have learned about joy, kindness, peace, and gratitude.
  • Just because I live in a storm doesn’t mean I’m a human lightning rod. I will protect myself seeking shelter and sanctuary in whatever way I can.
  • The storm has not made me ugly. I am more beautiful than ever. Living in this stupid storm has taught me how to finally embrace and recognize my beauty.
  • There are some who will never understand how I think or feel about this storm. It’s okay. I don’t understand myself a lot of the time anyway.
  • Others live in similar storms. We can support one another and learn together.
  • There will be more storms.
  • I am resilient.

Thunder can’t hurt me.

It’s the lightning that’s the problem.

I’m still learning.

 

Consider responding:

What lessons have you learned from living in a storm?

Revisiting Grief

I ran into a friend of a friend a little over a week ago that I haven’t seen in a long time at a local restaurant. One of the things Laurel and I have in common is that we have both lost people we’ve loved due to cancer (my mother and her husband). She was with a group of about six or seven others. There was nothing remarkable about anyone’s appearance. Everyone looked normal. I stopped by her table for a quick hello as I left the restaurant and learned she was eating with her grief group from hospice. Her husband died around three years ago and although they do not meet formally as a group anymore, she explained they still get together every so often to check in on how everyone is doing.

“So, how are you doing?” I asked her.

“I’m vertical,” she told me.

She looked great. I know. Even though I heard it in my head, it was my first reaction. Looking great has nothing to do with how a person is feeling. I even used the word “normal” above to describe her.

It’s cringe-worthy.

I was thankful I hadn’t said it out loud. I know so well that someone can look like they have it all together on the outside when the inside is a hot mess. This is true whether the inside is slammed with treatment side effects, pain from sickness, anxiety, depression, or grief. The inside often is in some state of constant churning. It may be such a present feeling that it is normal for you. Normal always fluctuates for me and has an overpowering element of uncertainty of the future. Normal has to be rooted in the NOW. I’m good at holding it together on the outside. Most of the time.

Grief is messy.

Being vertical shouldn’t be so hard. But it can be.

There is something comforting about being with others who have similar experiences. Support groups are great for this if it fits your comfort level. I went to one after my mom died. It was more of a workshop setting. It gave me a better understanding of my feelings and explained a few things that I wouldn’t otherwise have attributed to grief. Individual counseling is another option to support someone through grief.

Running into Laurel made me pause to revisit what I’ve learned about grief over the years. I reminded myself of many points worth remembering.

Grief Reminders

  • Grief is physically and emotionally exhausting. A grieving person needs more restorative sleep.
  • Grief is hard. It’s tougher to make decisions and trust others, including trusting your own abilities while grieving.
  • Many question truths in their personal belief systems such as religious beliefs, the meaning of life, and ideas of fairness.
  • There is a sense of having no control over anything.
  • Grief is distracting. Functioning in day-to-day activities or at work can be affected. There is a tendency to forget things.
  • Some people may bump into things, drop stuff, or be prone to accidents. They do not attribute these events to grief and wonder what in the world is wrong with them.
  • Some people find it easier to be at work and like having a focus away from grief, while others find it difficult to be in their work environment. Some who find an escape from grief at work find that it overwhelms them again as soon as they get home where the memories live.
  • Dates such as birthdays, anniversaries, holidays, and other important events will be bittersweet. The anniversary of a death will be dreaded and the day after will feel better again because there is a whole year before it happens again.
  • Grief is real and ongoing. A person doesn’t just get over it. The goal isn’t to get over a loss but to find a way to get through it.
  • People grieve losses other than death. Loss of jobs, a move, divorce, a friendship or relationship, failed plans, and changes in health are all sources of grief.
  • It doesn’t mean someone is over their grief if they are having a good day. They may just be getting through the day vertically.
  • Grief spurts come out of nowhere. They may not last long but can be intense.
  • There is no timeline. There are as many ways to grieve as there are people. What works for one person may not work for another.
  • Grief can teach us about life.

I find a lot of strength in affirmations. I’ve read and collected many, blended them together, and written my own when I have a specific need. I have close to one hundred in my affirmation file and I’m always coming up with more. Here is my group of affirmations on grief. Perhaps one or two will jump out as applicable to a situation in your life.

Affirmations That Acknowledge Grief

I allow myself to fully feel my feelings, both happy and sad.

I can still feel love in the world without my loved one.

I seek the help I need and accept help when it’s offered.

I hold on to love and will let go of the grief when I’m ready.

I am surrounded by seen and unseen love and support.

I am kind to myself while I grieve and heal.

I honor my lost loved one by living my own life in positive and beautiful ways.

I move away from memories that bring me pain and focus on memories that bring me happiness and peace.

Grieving is a part of life and I am doing okay.

There are many feelings involved with grief and loss and it’s okay to feel all of them.

I still feel my lost loved one’s presence and it comforts me.

I grieve loss in healthy ways that are right for me.

There is no timeline for when grieving is done.

Grieving ebbs and flows differently for everyone.

I recognize difficult moments and know they will pass.

I choose to grieve my loss and move forward at my own pace.

It is okay to feel happy again.

Moving on with my life does not mean I have forgotten someone I loved.

I am grateful for the time I shared with my loved one.

This experience has allowed me to discover new truths about myself.

I am done being sad for today and I move on to other emotions.

My life has changed and I will meet these changes day by day.

There are many people I can talk to who will listen to how I’m feeling.

I feel supported during this difficult time.

I am learning how life works for me with these new circumstances.

After I’ve given all this unsolicited advice, I think it’s also important to avoid offering easy answers or clichéd expressions to someone who is grieving. As an example, I often hear people say God needed another angel when someone has died. It’s meant to be comforting. I don’t believe this. Heaven has enough angels. Keeping people around longer on Earth that spread goodness seems like a better idea to me. We need those people to stick around. Someone who is grieving needs to feel listened to and feel comfortable enough to cry and express their feelings with the support of their friends. Telling someone how they should be feeling or dismissing their feelings with some tired or cute remark invalidates grief.

I have grieved my parents and other family members, friends, neighbors, and people I have never personally met who have died from cancer. I don’t think I’ll ever be done grieving some deaths, and that’s okay. It’s there. I can still be happy. I’ve grieved a child and an unfulfilled dream when cancer put a screeching halt on plans to become an adoptive parent. I’ve grieved relationships that have changed. I’ve grieved my teaching career when it became clear it was in my best interest to retire. I’ve grieved my past because I can’t reclaim my life and health to what it was before cancer. I’ve grieved my present because of disappointment and anger and changes that still don’t fit my plans. I continue to grieve my future because of fears. Although it isn’t what this post is about, I also have hope for my future and I will not let go of my hope.

There are many parts of myself that I grieve. I choose to keep many of those thoughts private for now. It’s my work to do, difficult to share, and very hard for me to put into words.

Grief is universal but everyone does it differently. There is no one right way to do it, but it needs to happen in its own time and in its own way. I don’t want to forget my loved ones who have died. I do want to quiet memories that haunt me. I do want to remember all the happy times I’ve shared with people who’ve died.

Laurel is incorporating grief into her life as she keeps living and moving forward. Looking fine on the outside doesn’t tell the whole story. It seldom does. I hope I can meet people with compassion and empathy to offer whatever support is needed.

Three affirmations from my list jump out at me as I write today:

I honor my lost loved one by living my own life in positive and beautiful ways.

Moving on with my life does not mean I have forgotten someone I loved.

My life has changed and I will meet these changes day by day.

 

What are your thoughts on grief?