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.

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.

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?

Van Gogh and Hope

Did the Impressionist Movement only give us artistic masterpieces and inspire other artists for years to come? Please note I use the word “only” loosely. My answer would be an emphatic NO. These artists also gave and continue to give us hope.

Vincent van Gogh may not initially stand out as a hopeful figure. He struggled with both his mental and physical health. His most famous paintings will always be his main contribution to the world. Starry Night is one of my favorites.

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Van Gogh painted Starry Night in 1889 during his stay in an asylum near Saint-Rémy-de-Provence.

Today’s post combines my love for inspiring quotes with blogging. Lately, I’ve come across several quotes from Van Gogh that have blown me away. I do not know in what context he said them or really if they were significant to him at all. I tend to believe they were significant to him based upon their content and some of his paintings. These are some of his words that have inspired me.

“Be clearly aware of the stars and infinity on high. Then life seems almost enchanted after all.”  ~ Vincent van Gogh

Life is enchanted. It’s easy to get wrapped up in its day-to-day minutia. There’s a repeating cycle of laundry, groceries, cleaning, yard work, and for me, medical appointments. The time I spend trying to live well with cancer feels so far away from noticing moments of infinity on high. There is always something health related even if it’s a little something. Daily medications are a good example. I see my port bumping out from my chest every day. My wig. These all are routine things but constant reminders of how my life is different. Making time to recognize and take in infinity is a must because it provides balance and perspective to life in my medical world.

It also sometimes feels like everyone is so focused on their own lives that moments where we interact with one another in meaningful ways are fleeting. Stores are understaffed. Customer service has all but disappeared in some businesses. Friends are in a rush. I treasure time with them. Social media, texts, and emojis replace conversations. Living life through social media is not very enchanting. I live in this world, too. Emojis are quick, effective, and sometimes highly amusing.

Looking up at the stars reminds me how big the universe is and that all my big problems are really small. People don’t make time to gaze at the stars and wonder anymore. Unless you live in the countryside far away from man-made light, getting to see a true starry night where shooting stars are common and a person can witness infinity on high is hard. City stars are not the same as country stars. I remember a geography course for graduate credit I took in Ecuador around the year 2000. It was in the jungles off of the Napo River where darkness closed in all around me where I saw the best starscape of my life. Utter darkness met me in every direction except upwards. Stars bedazzled the dark above. I only took them in for a few minutes because we were encouraged not to stay outside very long in the blackness for our own protection. Large cats stalked unseen and unheard in the night. Yet, for a few sacred moments, I saw the heavens like never before. It stays with me as a singular moment I’ll remember forever.

“I confess I do not know why, but looking at the stars always makes me dream.” ~ Vincent van Gogh

Dreams give us hope. We wish upon stars. Stars awe us. Songs are sung wondering what they are made of and comparing them to diamonds. My dad sang Twinkle Twinkle Little Star nightly to me. Starshine has always mesmerized me. If light from stars can travel trillions of miles to reach us, then can’t we also believe our dreams may come true? Can I wish to live? Can I wish to be completely healthy again? So often when we dream while sleeping, we don’t remember what we dreamt when we wake up. We can control what we dream when looking at stars and dream of what makes us happy.

Did Van Gogh say these statements before or after he painted his masterpiece? I don’t know. It doesn’t matter to me. It is more than enough that he said them because it makes me look at my favorite painting of his with more wonder and awe. I work hard to wonder and awe about life as much as possible as someone with metastatic breast cancer.

“If you hear a voice within you say you cannot paint, then by all means paint and that voice will be silenced.”   ~ Vincent van Gogh

 

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My attempt to create a Ukrainian egg in the style of Van Gogh.

Am I a painter? No. I am confident there would be voices other than an inner voice confirming it. Even so, I do believe in doing the thing I think I can’t do. I do plenty of new things (new hikes, bike paths, foods, small risks). I do plenty of hard things (conflict, scans, side effects, funerals). I think Van Gogh was thinking about all the opportunities we don’t pursue because we convince ourselves we can’t for any number of reasons. The negative inner voice is quelled when I take a NO and turn it into a YES. Maybe this quote of his is telling me is I should give painting more of a try. I’m up for finger painting. The swirls of color would feel so Van Gogh.

“Close friends are truly life’s treasures. Sometimes they know us better than we know ourselves. With gentle honesty, they are there to guide and support us, to share our laughter and our tears. Their presence reminds us that we are never really alone.”   ~ Vincent van Gogh

And . . .

“I wish they would take me as I am.”    ~ Vincent van Gogh
 

Friends take us as we are. Those who don’t are not friends or worth the trouble. My need to belong has always caused me anxiety. There are still times when I feel left out. Like Vincent, I wish everyone would take me as I am. I wish I could be okay with it when some don’t. The people who don’t aren’t worth my time. I’m reminded I only need to belong to myself.

“I think that I still have it in my heart someday to paint a bookshop with the front yellow and pink in the evening…like a light in the midst of the darkness.”   ~ Vincent van Gogh

Why a bookshop? He could have said a flower shop, a café, a market, a boutique, or any number of storefronts could be yellow and pink in the evening. Van Gogh also spoke of light. Reading is light. It gives joy, knowledge, and self-awareness. Reading can be a source of hope. Light is hope. Once again, I return to ideas of stars being the light in the midst of darkness. Books are like stars. Books shine light in the midst of darkness.

“Many people seem to think it foolish, even superstitious, to believe that the world could still change for the better. And it is true that in winter it is sometimes so bitingly cold that one is tempted to say, ‘What do I care if there is a summer; its warmth is no help to me now.’ Yes, evil often seems to surpass good. But then, in spite of us, and without our permission, there comes, at last, an end to the bitter frosts. One morning the wind turns, and there is a thaw. And so I must still have hope.”    ~ Vincent van Gogh

Call me foolish for I am one of those people who believes that the world can still change for the better. There is more goodness in the world than badness. There will always be more heroes than villains.

Springs and summers follow the coldest winters. Having said that, spring sure took its sweet time this year.

I must have hope. I must maintain hope that treatments are discovered in time to save me, to save everyone with cancer. I believe in targeted therapies that are matched to patients who have a strong likelihood of responding well to those treatments. More research is needed to develop more of these. Research equals hope. Hope is my driving force and motivation in advocating for more research directed to treatments for advanced stage cancers. I do my best to stay strong and healthy which feeds my hope. I do what I can to financially support research for metastatic breast cancer. I still have hope.

Van Gogh has said he wanted his work to express “sincere human feeling.” He succeeded many times over and over again. Hope is a kind of feeling that warms, intensifies, and empowers. How he captured this quality in his art so that it still evokes such an emotional response over a hundred years later is a mystery to me. He had an extraordinary gift as an artist. His art and words continue to give hope.

Immense and everlasting hope.

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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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?

 

Thoughts on Oncology

Doctors’ roles are essential in healing.

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They should not be minimized or discounted. Cancer research will someday find a cure for what has affected us personally and our families. I am in awe for the dedication and care I have received. Traditional western medicine is only one route to choose. I know many who have stuck to this road with little question if something additional should also be done. Maybe they didn’t need or desire anything different. Maybe they didn’t know they could ask for anything else. Cancer was a six-month detour that blurred more with every passing year. It became part of their past.

However, if you only drive down Main Street, you only experience one part of a town. Side roads and rural areas are well worth the ride. They offer something different. You don’t have to travel only one or the other. My opinion is both are necessary to live well and/or be cancer free. You are the patient and in control over decisions that affect you. My healing plan consists of many side roads and rural areas that have made a positive difference for me. I am the common factor and pull it all together.

It has been so much more than a six-month detour for me. Parts still have blurred. I have traveled on many roads to get where I am today.

It seems strange that I haven’t blogged much about chemotherapy or my oncology appointments. Chemotherapy has been a focal point for far too long. It sucks energy and manifests more physical symptoms than I care to list. It sustains life while it kills cells. Chemo is reassuring and comforting in its own way. It ranks high as a huge part of my healing plan. I have hit my 100th treatment. That’s pretty significant. It isn’t a celebration, but I am checking off the box and moving on. I am still here.

There are so many other aspects in addition to active treatment that I think are also important to an integrated approach to a cancer healing plan.

A strong doctor-patient relationship is vital for my living as healthy as possible.

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The relationship I have with my oncologist is a really good one. He deserves credit for sticking with me, listening to me, and working for what I want. He knows how I feel. Yes, I’d love to be someone who visits her oncologist once a year, and eventually less than that, but it’s not the kind of survivor I am. I’m getting active treatment. I go to my doctor a lot. Sometimes it means I may be a pain in the butt. I do get all my questions answered. I even come up with some good ideas from time to time. The good news is my oncologist doesn’t have a chance to forget about me. If I don’t speak up for me, who will? I am my own best advocate.

Oncologists differ from one another. They’re human just like the rest of us. I met with a couple oncologists at Mayo Clinic in Rochester, MN, shortly after my initial diagnosis. Overall, they agreed with the treatment plan suggested at Carbone Cancer Center in Madison. Mayo was more open to surgery options. I liked them quite a bit but it was just too far a trek for regular care. I had top-notch care a few mere miles from home.

A couple of years ago I sought out another second opinion within my provider network and it wasn’t very helpful. It wasn’t hurtful either, just not worthwhile. This oncologist let me know what his opinion was on my options. I let him know what I thought of his limited research. He was not open to complementary cancer supports. I was not a good fit with this oncologist. In my opinion, he defines healing with a very limited scope. Every once in a while I see a clip of him on the local news. He has a great reputation, but I am so glad I have the oncologist I do, who also has an excellent reputation. My position is that healing includes many different aspects that work together.

I’m going to repeat that: Healing includes many different aspects that work together.

No one heals in a sterile petri dish or test tube.

My health journal helps keep all my medical information together.

A health journal has been incredibly useful for my oncology visits. It really helps with dates and specifics as to how I’m feeling, my questions, how and when medications were tweaked. I am a planner. I make the most of the short time I have with my doctor. Sometimes it isn’t so short, but again, that’s the kind of survivor I am, and I’m going to take the time I need. My health depends on it. I believe one reason I’m still doing well is because I’m able to keep really detailed notes to report to my doctor and have one place to keep all my information.

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I’m also more of an anxious person than I used to be. Cancer and anxiety go together. Keeping a health journal eases some of my anxiety because it gives me power. An added benefit is the built-in memory that naturally exists with documentation.

Ask questions. A short office visit doesn’t suffice for what I need to feel as a satisfactory visit, even with my health journal in tow. It wouldn’t hurt if office visits were about ten minutes longer than they are now. The oncology nurses are good resources in getting word to your doctor, as is electronically messaging your doctor through MyChart or any similar online technology. I am important enough, and so are you, to have your questions and concerns answered and acknowledged in a way that you understand. It is okay to disagree. I do believe everyone is there to advocate for your best care, but that doesn’t mean you blindly agree to something you don’t understand or have reservations about. There may be something even better for you.

I do believe the answer, a cure, lies in research and things like immunotherapies, targeted treatments, genomics, personalized medicine, and medical advances that haven’t happened yet.

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This is why research for advanced stage cancers is so important. More research dollars need to be allocated to advanced stage research! Click here for some suggestions. There needs to be a lot more access to better treatments and drugs that are more effective for those of us living with secondary cancer. We deserve access to advances in immunotherapies, targeted treatments, personalized medicines, and new therapies. It isn’t an option to run out of options. Keep telling your oncologist this over and over again. They meet with the other oncologists in their network to discuss cases. If they keep hearing these demands from patients, it’s more likely medicine will go in this direction.

Keep speaking up.

Patients can help steer these discussions by continuing to advocate for what they need in their office visit.

Healing and a cure are not interchangeable. A cured person may not be healed. Trauma, fear, and other physical or emotional issues can still interfere with living fully. Healing and a cure will inevitably overlap as healers, doctors, and patients work together. Stranger things have happened. Healing and a cure absolutely can overlap. I keep striving for both.

I am ever hopeful I will find a way. Always.