Sunday, September 30, 2018

It's Pinktober Again!

Oh, goodie, It's October. What a colorful month! I love the reds, oranges and yellows of this season, but I am wary of the pink.

The pink is for Breast Cancer Awareness. October is Breast Cancer Awareness month. I very much appreciate anyone who walked for me, raised funds, and who've given me a host of pink swag. It means you love me, and I feel exactly the same about you all.
A ribbon of lime green and teal is overlaid with a thin ribbon of pink
The pink ribbon is well-known for representing the fight against breast cancer, but many stage 4 breast cancer patients feel that pink does not encapsulate their experience. Metastatic breast cancer may start in the breast, but its spread to vital organs makes the disease fatal. To highlight the uniqueness of the disease and show its commonality with other stage 4 cancers, METAvivor designed a base ribbon of green and teal to represent metastasis. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast. --

But the pink is out of control! From its inception in 1992 to encourage early detection with mammograms, the infamous pink ribbon morphed into an avalanche of craziness. Pink latrines. Sexually suggestive high school football games (Save the Tatas.) Sexually suggestive Ts and active wear, endless parades of Messenger posts asking me to post a heart for the non-existent breast cancer prevention. Maybe worst of all: Corporations whose fundamental mission also causes deadly cancers, paint
their equipment pink -- the height of hypocrisy.

There's money in all of this. Some organizations raise and spend billions. There's a huge problem: until recently, most funds weren't spent for research on the killer: metastatic breast cancer. It has been spent instead on programs designed to get women to get their mammograms.

As my favorite organization, METAvivor rightly points out, cancer that never leaves the breast doesn't kill. Metastatic cancers of all types kill, by compromising vital systems. METAvivor notes:
113 Individuals die each day from metastatic breast cancer; only 2% to 5% of breast cancer research is focused on research for the already metastasized.
Sobering statistics from

"...100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.
Despite these realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% - 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die."
However, the tide is turning. After receiving much criticism, the Susan G. Komen foundation is dedicating $26 million to metastatic research and support. It's a start. 

There are other worthy organizations:

The Metastatic Breast Cancer supports metastatics and caregivers.
Living Beyond Breast Cancer

If you support breast cancer this month, spend your money wisely and in a way that helps us most. 

Struggling with Her MBC Voice: Olivia Newton-John

It's funny how folks struggle to understand the unique dimensions of Metastatic Breast Cancer.  Recently, another breast cancer story marched across the world stage: Olivia Newton-John has returned to treatment for  breast cancer. But once again, poor reporting ranged on the edge of ethical reporting.  Here is what I have posted on social media:
For everyone offering thoughts and prayers for Olivia Newton-John based on the highly inaccurate US media reports, let me elucidate:
We can always hope for miracles but the way her announcement has been reported in the media is very, dangerously misleading. Those who have her disease are angry at the misinformation and poor reporting on this.
This isn't the third time she's "battling" cancer. She has Stage IV breast cancer and it has progressed again. She has chosen to limit treatment and concentrate on wellness.
...However, 30 to 40% of those who get breast cancer eventually move on to its metastatic form. No one yet knows who or why.  They don't even know how many of us there are, because there is a criminal lack of research in this area.
So, barring getting hit by a truck, those with metastatic cancer know that they are dying of cancer. Treatment isn't curative, it delays the inevitable.
ONJ has known this for years. Moreover she's been in treatment all of this time, and her treatment is probably as difficult as it is for all of us -- slow torture isn't inaccurate.
That Olivia has chosen not to pursue certain medical treatments, means that she is choosing to move on.
There is no miracle yet. There is no cure for metastatic breast cancer.
Please pray for ease, peace and comfort. She knows very well what comes next as we all do....
Here are practical things that can put your thoughts and prayers in action.
1. Learn the facts about breast cancer at
2. Donate to one of the funds listed above.
3. Think about how you talk about metastatic cancer in general. The folks who are dealing with this have a road that you cannot imagine. Those treatments are often brutal. But they can extend life by years. Decades, even. They really have no hope  for recovery, they hope for time; for effective treatment and relative comfort. For lessening of pain, and for health care that they can rely upon.
4. Fight for healthcare justice.  Right now every one of my sisters is dealing with being denied pain meds (cannabis and opioids are vital) and worrying about their health insurance. The injustice chokes us. Today's political climate was literally the last thing they needed in many cases -- I even know people whose lives have ended too soon as a direct result of the current political situation.
5. Avoid donating money to the pinkwashing campaigns where most of the funds go into awareness programs that accomplish little....

These are the things you can do for us. Thank you.

Friday, September 7, 2018

The Gift of Normal

This view into the valley below the Alpine Visitor's Center shows a cloudy sky, green peaks gracefully flowing into a glacial valley, with a tiny dirt road peeking out of trees far below, and a family of elk lounging near the center.
The view from the Alpine Visitor's Center at 11,500 feet, high up on US 34, Trail Ridge Road, Rocky Mountain National Park. The dirt road I drove to get there is to the left, a family of elk sits below.

It is easy to lose perspective with this disease. I, for instance, have forgotten what it feels like to be normal. For me, that meant a dancing, singing, traveling, working-two-jobs-in-one type of hardworking gal — that’s who I used to be. My family called me the Energizer Bunny. But that gal got left behind almost two years ago, next month.

Since I began the Stage IV experience, one treatment after another has robbed me of that energy. Sometimes, I felt like I was moving through jello. Other times, I felt like I would never fully wake up again. In this current treatment, I feel great on the couch but unable to walk up the stairs without depleting the little store of energy left in my remaining blood cells. Throughout all, I have become the nap queen. My thyroid meds have me all over the map, too, greatly contributing to the malaise.

Because of the chronic anemia, my oncologist moved me off the Lynparza for a few weeks until I cleared a few scans and labs. My bloodwork gradually improved, and I could stand up without bracing myself again. I was cleared to start again.

Because our world has been so crazy, hubby and I decided to make a trip to see a place that is dear to us: Big Thompson Canyon and Rocky Mountain National Park. In many ways, this area is our geographic center. We've come here since our youth. US 34 had had road work done, closing the whole beautiful canyon for months. It was recently reopened with new bridges and alignments. The announcement served as our call to return. So I took one more week off meds to drive out there and back. We flew the daughter in as well, just for a few days. The trip was a blessing in more than one way. 

It was great to see all of those sites. I certainly can’t hike the backcountry anymore, but I can drive the steep terrain with ease, using the same skill I honed as a young woman. And by the end of the week, I remembered what it was like to feel good. My spirit soared. I was with the family I loved; I felt wonderful. The feeling, so strange to me of late, grounded me. It was my gift: a week of normal. Normal eating, normal energy, normal joy in wonderful things. I began to plan my future with hope again. 

Meanwhile, Back on Earth

The week in the high country did my lungs some good: my groundglass opacities have cleared. My endoscopy showed inflammation but no infection. My CT scan for the lungs reconfirmed other findings; nothing new. Nothing new is good. 

But I am back on the Lynparza, at a lower dose. I do feel better on this dose, but I expect I’m going to return to anemia over time. I am still taking naps. I still have GI and U-tract issues, at a more manageable level. Importantly, my urologist and I have a plan to stay on top of developing issues, and I can treat them as they happen; I don’t have to wait.

I have an unexpected ally in my battle for the thyroid. As you recall, early studies suggest that one thyroid replacement hormone, known as T4 (Synthroid, Levoxyl) is encouraging my cancer cells to grow, and possibly blocking treatments by locking into the same receptors and giving those cells a boost instead of a kick in the rear. There is another version of the hormone that works similarly but doesn’t act that way with the cells. It’s called T3 (Cytomel, Liothyronine). However T3 alone has some risks, and it is usually prescribed only for brief periods when thyroids are scanned. But my endo is seeing more than one patient taking these “monoclonal antibody” therapies, and we are all struggling with our endocrine system. (Hey, we get to live long enough to struggle; that's something right there.) She believes that my wild thyroid status swings (from very hypothyroid to very hyperthyroid) will be improved by taking more T3 as well. We have crafted an entirely different combination that favors more T3 (a shorter acting agent) and less T4.

It is entirely possible that my system will be able to fight more cancer on the lower dose now. I’m excited at that possibility, even if I can’t find the energy to dance about it. Stay tuned.