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.

Cross the Line

There are many times in life where people are just trying to get through the day. I am not up for attempting to change the world or my little part of it when I have one of these days. On other days I can be quite formidable. It was on one of these more rebellious days I heard a good old Johnny Cash classic come across the radio – Walk the Line. Do we do what Johnny Cash advises in this song and stay in middle ground area to play it safe? There are advantages to not creating a fuss and staying socially accepted. Respecting boundaries is huge with me. I am not looking to cross any clear boundaries that have been made or have mine crossed. It’s tough for me to hold others to some I have made, but I have gotten better. I can say NO and mean it. Boundaries are meant to mark the limits of an area, to keep us safe, to enable us to play by the same rules.

But there are times you don’t get the notice you deserve if you walk the line all the time. Being a cancer patient is no time to walk the line. Cancer patients must dare to cross it. We must make a fuss because it’s our health that is on the line. Cross it, blur it, erase it, and boldly step into territory where you ask for what you need. New limits may need to be marked and a new set of rules written. These are a few of the times when I think it’s appropriate to advocate for yourself and dare to cross the line:

Cross the line when someone tries to make you feel “less than” because you have cancer, or that you’ve done something wrong because of it, or that if you just did this or that it would go away, or that you aren’t thinking clearly, or that you just aren’t good enough. None of these things are true. There are many pesky questions. These comments are a reflection of the person giving them. Just because I’m thinking about something differently doesn’t mean I’m not thinking about it clearly. It’s insulting to infer my mind is affected because I’m making decisions that don’t jive with decisions someone else would like me to make. I won’t be gaslighted. I believe some comments that fall into this category are made in an attempt to feign that the person speaking them cares or to somehow make themselves look good. MAYBE they are sincerely trying to be helpful, but I don’t get it. You can’t lift yourself up by putting someone else down. Call these folks out while you’re at it. Possible responses may include:

  • Why are you asking?
  • Where did you hear that?
  • That’s not true. (I’m not interested in debating it.)
  • I disagree.
  • Let me answer your question as it pertains to me.
  • I choose not to discuss my health.
  • Choose more of an impolite response of your own choosing.

Cross the line when you feel your treatment plan may not be giving you its best. Patients never fail treatments. Treatments fail them. It’s more than okay to ask questions. Secondary cancer does not equate to substandard or second-rate care. We are not any less deserving than early-stage patients. Treatments need to be given in the spirit of the best possible outcomes as they are for everyone else. Sadness, pain, and suffering are all real feelings that don’t discriminate based on stage or prognosis. We should not have to ask for compassionate care or if something more effective may be available, but if these things aren’t there, cross the line. Keep asking if new treatments are available. You might not know if you don’t ask. Doctors may not know you’re interested in other options if you don’t speak up. Doctors may need nudging. Lots of nudging.

Cross the line if you do or don’t want to do something. This could be socially or medically, especially if you have questions about plans directly involving you. Remember it’s okay to change your mind. Everyone can change their mind and it doesn’t mean things have taken a turn for the worse. Everyone’s interests change and evolve over time. You can have energy one moment and none the next. You have a right to talk more about your treatment if concerns and questions have cropped up after agreeing to or starting something new. You are not being difficult. You are being an informed and empowered patient, a good patient in my opinion.

Cross the line when someone talks about someone who has died from cancer and then tacks on in a hushed voice that he or she was Stage IV. I mean no disrespect – but withstanding complications of surgeries or infections – of course they were Stage IV. It isn’t exactly a newsflash. I know I’m sensitive to those words. It always strikes me as somewhat insensitive and unkind to whoever died. Why does it need to a qualified by a stage label? Someone still died. Yes, life changes with a metastatic cancer diagnosis. I feel the time has passed, long passed, for people to whisper the words “Stage IV” after someone’s name. I’d feel better if they expressed more anger and outrage, asking instead WHY or HOW in this day and age hasn’t more research been directed to lower the number of deaths from metastatic breast cancer. THE NUMBER OF DEATHS HAS NOT GONE DOWN SINCE 1995!! I haven’t figured out a way to effectively address this growing annoyance I have with the whispers. Perhaps my first step is to find out why it matters to them to include the information of a Stage IV label with a lowered voice before I go on the defensive. It’s possible I’m misinterpreting their intent based upon the lens from which I hear it. I could then go on to explain how I’m living strong with a Stage V mindset.

I appreciate that people care about me. Most of the people in my life are not intrusive. Those folks get the boot. I have reached a point though that when I encounter someone who is either speaking about me or for me by way of assumptions or falsehoods that I won’t let it pass and be quiet. Perceptions about secondary cancer must keep changing. I felt such a wave of relief and support from a friend I had lunch with a month ago who listened with empathy as I shared how I felt about comments I heard about those with Stage IV. She said she knew LOTS of people who were living years past the five-year survival mark. She should know people like me because she’s a director of development with ties to events and donors at the hospital where I receive treatment. I know there are more people like me who are living by example and changing the perceptions, definitions, and conversations around metastatic cancer.

I am done walking the line.

Patient Rights and Raising the Bar

An oncologist, radiologist, and surgeon all walk into a bar. Each was feeling frustrated because each felt he was more responsible than the other in successfully eradicating a patient’s cancer. In the midst of their heated discussion, a nearby bar stool swiveled to reveal the very patient they were debating (it was a juice bar). “You all have been a vital part in my healing, but I AM the most important factor in healing my cancer.” Each doctor was struck speechless, whereupon the patient treated each to a nutrient and antioxidant rich green smoothie.

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Image credit: pixabay.com

I’m feeling fired up today about many, many things related to health care.

Do you realize how empowered you are? YOU are the common factor that ties your specialists together. Good communication is key. Sure, they discuss your care without you, but you get to integrate that information together. It needs to make sense to you. It affects you the most. YOU are the one who has sought out complementary treatments and again the person fitting all these pieces of your health puzzle together. YOU have done the research and made informed decisions. They all work for you and your interests. YOU are the CEO of your team. That’s powerful.

A lot is being done TO you. You may feel out of control. You have rights. Knowing your rights is empowering.

  • Having complete and accurate information from your doctor about your diagnosis, treatment, and prognosis tops the list.
  • As a patient, you are entitled to privacy regarding your medical care and records.
  • You have the right to quality care and treatment consistent with available resources and standards of treatment.
  • You have a right to refuse treatment and be informed about the consequences of that decision.
  • You have the right to care and treatment in a safe environment.
  • Another big right is that you have the right to considerate and respectful care.

I want to add two additional patient rights.

One: The right to demand more research and more effective treatments for advance stage cancer.

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Image credit: pixabay.com

It seems to be an idea I keep repeating over and over. Tell your oncologist, radiologist, and surgeon. Make phone calls and write letters to administrators of treatment centers and hospitals. Find a researcher who would love to give you a tour of their lab and share what is being worked on.

I think this is a great way to create a direct line to the front line.

It also provides a face to the work the researchers do, even though I think many researchers went into their chosen profession because of loved ones who’ve been lost to illness. Every new face can continue to motivate researchers.

Touring a research lab certainly will better my understanding of work being done. It’s on my list of things to do. Spread the word to non-medical people (family, friends, coworkers, followers, etc.) so they can spread the word on the urgent need for more research for advance cancer. When more people speak up and demand more, and keep demanding more, there is a better chance that people will get more. I ask for more all the time.

Two: The right to have more equality and power with pharmaceutical and drug companies.

I feel this is an uphill battle but one worth having because those needing drugs are humans with feelings and deserve whatever can help them feel better. This one relates a lot to the aforementioned right to CONSIDERATE and RESPECTFUL CARE. It is neither when you are treated like you don’t matter or are insignificant. THEY are there for ME, not the other way around. Too often the latter is the norm. I could easily throw insurance companies to the mix.

I am tired of feeling exhausted with efforts to make a positive difference, but I will keep working to do so for myself and for others. I am so sick of arguing and jumping through hoops for what I deserve in order to be well. I have mentioned this point in earlier posts: I’m well enough to argue for myself and hoop jump, but what about the patients who are physically too tired or weak to do so? Those who are sick are vulnerable just like any other powerless or marginalized segment of society. Take your pick – there are plenty of “others” in society. They are discounted. Laws and policies do not work in their favor.

Here’s more depressing news – the cancer the specialists argued about eradicating in the beginning of the post may not have been eradicated. It should be part of the complete and accurate information you get from a doctor about a cancer diagnosis and prognosis. 30% of cases recur or may metastasize. Unfortunately, it could still be lurking, biding its time. A new cancer can also grow. You, being extremely empowered, need to know this is a possibility. You, being extremely empowered, need to stay vigilant in understanding your risks and the red flags that may suggest secondary cancer. I apologize in advance if the following freaks people out. It freaks me out, too, but I feel it needs to be shared. Jo Taylor is the founder of After Breast Cancer Diagnosis and a patient advocate living with secondary breast cancer. She can be found on Twitter @abcdiagnosis and her website is abcdiagnosis.co.uk.  The graphic below (used with permission) illustrates warning signs that should be on everyone’s radar.

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Years ago, I felt a little tired but just chalked it up to the demands of my job. A lot was going on personally for me as well. These things could very well have been why I felt tired. Many people are fatigued who do not have cancer. Cancer was the farthest thought from my mind. I have no idea of knowing for sure.

Although the above symptoms pointing to a reality (or possible reality) for some is depressing or upsetting, knowledge is power.

Let’s talk about the term healing. Semantics can be tricky. Healed cancer, treatable cancer, cured cancer. Can you be healed without being cured? I think the answer is yes. Healed is more of an element of mind and spirit. Healed and cured are probably the most synonymous. You can be healed and still have treatable cancer. You can be healed and have curable cancer. You can be cured, but not healed. And you can not be healed while having treatable cancer. I still hold fast to the idea that you are the most important factor in your healing as you have to decide what you are going to allow and how it works for you.

It’s time to get back to the doctors who walk into the bar. They may continue to argue. They may nod politely at your declaration. Perhaps they believe you. When you assert that you are the most important factor in your healing, you raise the bar of expectation in doctor-patient relationships. You change how you are perceived. You may even change the treatments offered to you. Maybe you find something that is a possibility for you that your doctor hadn’t considered. You are important. You matter. Your voice matters. The bar is important.

A patient, researcher, and leader all walk into a bar. Here’s the punch line: They are all the same person . . . you. Being an active member on your cancer care team ensures that no aspect of your care is taken for granted. Your team is accountable to you, as it should be. And here’s even more good news: The oncologist, radiologist, and surgeon have been waiting for you. They wave and welcome you to your seat at the table.

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Image credit: pixabay.com

Consider responding:

  • How do you feel you are a part of your team for your health?
  • Are there any other rights you’d like to add to your personal list of patient rights?