Journalists and Celebrities, Say Its Name: Metastatic Breast Cancer

We have had our news feeds darkened of late by the news of a line of celebrities fighting, and sometimes dying, of cancers, especially breast cancer. Yet, inevitably, it seems, journalists say they die of  or are “battling” common, everyday cancer. That’s not entirely true, and the community of MBC sisters is perplexed: why won’t journalists and celebrities say its name?

Metastatic Breast Cancer

Metavivor.org likes to drive home this all-important point this time of year — the pink season. Cancer that never leaves the breast never kills. Cancer that leaves the breast travels to bones, lungs, liver, brain and beyond, beginning that race against time and quality of life that you gentle readers have been kind enough to follow with me.

Like it or not, it is Metastatic or Stage IV Breast Cancer that kills. There’s no “beating it” but many of us will be fortunate enough to be able to throw everything we’ve got at it for many years, even decades.

Or not. The average length of time women live following a stage IV diagnosis is 3 years. I technically observe that very cancerversary this pink month, thank you.

Why, then, does a prominent journalist die of “complications of breast cancer?” I understand she didn't want to be known as an MBC lifer while she was alive, but understanding her situation will help move folks to support research. Journalists, call it by name!

Metastatic Breast Cancer

Why won’t a famous musician admit that she is Stage IV and is dying? Instead, she promotes her hospital and her husband’s cannabis business. Apparently, it’s bad for business to admit you’ll die of the disease.  (Update: she has announced she is stage IV now.) Celebrity, please call it by name:

Metastatic Breast Cancer

It seems to be journalistic tradition to be ignorant of the details of metastasis. Journalists know vaguely that cancer kills, but to them it's all the same. Perhaps that’s why a certain game show host’s happy reports of progress against Stage IV pancreatic mets are accepted uncritically, despite it taking a mere few weeks before it rapidly recurs with a vengeance.

Like many metastatic cancers, stage IV pancreatic cancer's main quality is how lethal it is. Why would journalists be complicit in suggesting he "beat" the disease?  Pancreatic Cancer ranks behind Breast Cancer in lethality - a grim competition in which no one wants to participate.

Here’s why this behavior — this unwillingness to name and understand Metastatic Breast Cancer — is actually harmful for the rest of us:

• Some 30% of women who fight breast cancer will eventually move on to develop Stage IV cancer. That means resolving the challenge of Metastatic Breast Cancer improves every survivor's chances.
• Only 2 to 5% of cancer research funds are dedicated to understanding metastatic breast cancer, or finding solutions to extend the lives of MBC patients. We are woefully behind on this. Komen only gives 7% to actually saving our lives.
• There is no cure. There are many great therapies. We might get decades from modern treatment, but we will eventually die of the disease — or its complications. And we will always be treating our disease. Few of us ever get a break from the relentless side effects. (On this, I am luckier than most right now!)

Metastatic cancers are a whole new world. Yes, having cancer is tough; I know. I've been at this since 1996! But having metastatic cancer is a lifelong, never-ending series of physical and emotional challenges designed to keep you on this plane of existence as long as possible against a disease that intends to remove you from it. It changes everything. But you know that, because you read my blog!

It would be nice if our celebrities and journalists admitted this. If awareness saves lives, imagine how great it would be if we actually understood what it is about cancer that kills, and we dedicated our efforts toward saving lives for real. 

For these reasons alone, I would like to see the end of the phrases “died of breast cancer,” or “died from complications of breast cancer.” It’s a misstatement. Again, cancer that never leaves the breast cannot kill. Metastatic Breast Cancer kills. I ask that celebrities please ensure that journalists understand exactly what they are dealing with:

Metastatic Breast Cancer

No more sugar coating it; because it is the coating that is, in part, killing us. We want so much to think that doing pink is doing something. It is not. Save all your October pink money and dedicate it to one of the truly life-saving organizations: 

Metavivor.org

Metastatic Breast Cancer Network 
Living Beyond Breast Cancer 

Update: The Ibrance is helping, it appears. My PET is not clear, but it shows that everything that remains seems to be moving in the right direction once again. That is remarkable, for an $11,000/month drug. (No, that's not a typo.)

Happy October. Let's go back to celebrating with Halloween colors. 

Embracing Ibrance

It has now been two months since I began Ibrance. My life has changed remarkably, mostly for the better. Some days are almost close to normal, and managing a side effects has been much easier on me. I no longer have UTIs. I do have some GI issues but on a different scale. I can manage these better, I think. I am optimistic about this drug.

However, it has one side effect I cannot overcome: It makes me neutropenic. That means my white blood count becomes quite low. I had to take a two-week break between cycles, because counts did not improve quickly. Ibarance is dosed on a 21 day cycle, then I take a seven day break, so that extra week was important. I couple the Ibrance with daily Letrozole, which prevents me from converting estrogen that feeds the cancer. I feel few effects from it.

But my break worked out for the best. I had a long-planned trip to see some friends in Savannah, Georgia. My host went out of her way to make sure I was comfortable, giving me my own bed and bathroom, and even finding a wheelchair to push me around in the more physically exhausting parts of our trip. Although I felt awkward, we were glad to have it -- all of us -- when we stood in long lines.

I was able to enjoy the trip in part because I was off the meds due to the neutropenia. I just had to protect myself from other people's germs, and monitor my energy and other levels to make sure I didn't overdo. 

I've already had to miss many events (I'm deeply sorry, SB and NB) because of treatment and the illness. It is very disappointing each time. It was nice to be able to enjoy this one a bit more.

And while I'm not perfect, I'm making the best of it all. I can't hike or run or do very physical activity in any way. I have to avoid lifting things because my spine and hips are getting a little iffy. I have to be absolutely germphobic because I assume my counts are low.

Fatigue is a huge part of this drug. It's a different sort of fatigue: not tiredness so much is the inability to be physical. I want to be energetic but I run out of steam quickly. And it's a little harder to restore my fatigue. Sleep interruption is another big side effect I deal with everyday, er, night. 

But there's lots I can still do. I can still ride in and drive cars and RVs, I can still enjoy food fairly normally but in lower quantities. I am doing ok. We are just crafting new adventures that are different from the old.

All of that is good, because we are traveling. We're planning to spend the entire summer here in Estes Park, Colorado. When the doctor changed my drugs, I did have to overcome lots of obstacles to follow through on this plan. I had to find a place to draw my blood here. I will have to travel back and forth more frequently than I wanted to or expected to when we first made them. And we are going to have to figure out how we can see beautiful things without expending huge amounts of energy

It's still worth it. It's still worth living my life as optimally as I can. And that seems a whole lot more optimal than before. 

I will not be scanned until September. And that is fine. I plan to enjoy my summer. 

Moving on Up...to a New Med

I know it has been a while. I’ve been on something like an extended vacation from blogging, mostly because I’ve had so little to say that’s news, and partly because my energy wanes of late.

But I’m back with an update: I had a PET scan last month. My soft tissues remain clear but my bones are worsening. I may even be feeling it. So my bones were biopsied. That was fun; the fentanyl had me hunting coffee cups on a nonexistent black market. My doctor and his team were amused.

My bones have the same estrogen positive (ER+) breast cancer. Interestingly, it is no longer progesterone positive (PR) at all, and it remains Human Epithelial Growth Factor (HER) negative. 

Worse, my antigens -- the telltale measure of cancer markers in my blood -- are back in the 2700s (see the charts.) I also had a new set of symptoms: I was fatigued, sore like the flu and little feverish -about 99º to 100º. These last symptoms really slowed me down. 

The fevers may have been an infection; they seemed to disappear with antibiotics, but they would come back as soon as I completed them. My blood work mostly showed that I’m anemic, nothing more serious. But my symptoms might be a response to too many antigens in my blood. The last time I felt this way were the dates of the peaks on those charts. And they were up again. Sigh.

My CA 27.29 antigen history. Normal is under 32 or so.

My CA 15-3 antigen history; note how similar each are.

If you've been tracking, you know that I have been on Lynparza, for better and worse, for over a year. And it has been quite the mixed blessing. I cleared my soft tissue, but not my bones. And the side effects were not simple. I was not alone in my difficulties with Lynparza: the gas, the acid reflux that twists my tummy in knots, the fevers and even UTIs were all part of the picture for others. Well, my UTIs were extreme. I had sort of a handle on those, treating for UTIs with every dose. But it did do some good, and I wanted to keep trying. 

I began my doctor week with my primary care, and then the oncologist. I didn’t want to change my medications; but mentally and emotionally, I was prepared. I got bloodwork. Ok, maybe another UTI. More antibiotics. But no real answers.

The oncologist was ready as she walked in. We're moving on. As soon as insurance approved, I was to start Ibrance and Letrozole. Ibrance inhibits certain cancer amino acids by blocking their receptors on each cell. The Letrozole is an "aromatase inhibitor." It prevents my body from taking common androgens (a hormone) and converting them to estrogen to feed those greedy cancer cells. The one-two punch causes them to die.

Lots of women are on Ibrance/Letrozole. I'm reading lots of positive stories. I can expect a new round of side effects, among the two most common, fatigue and soreness. I may get low on white blood counts again, so I'll need to use precautions for infection.

Today is my first day. I handled it well, but I am experiencing the soreness. But my tummy is happier and I have no sense of those other issues. Stay tuned. With some luck, I'll have good news.

I sure hope so. I'd like to enjoy this summer. In my "feeling that I was doing OK" arrogance, I have planned a big summer, even though I always fear to plan, with good reason. I need to be ready to be happy just snapping photos from a tour bus; or from sitting outside listening to the Big Thompson River roll by, rather than doing anything remotely strenuous. My femoral head (top of my right leg) hurts like crazy. Let’s hope some of that comes back. 

Here's hoping the new med does the rest of the job for at least a long while. 

Another New Year: A Gift and a Challenge

There is not a great deal of news on the health front. I continue to walk the Lynparza path. I continue to manage the side effects to a degree that makes a reasonable existence possible. I still manage lots of GI, some fatigue (but definitely less) and many, many emotional challenges. But I made it this far. Someone recently compared my physical appearance to last year as better “by far.” I am in a period of improvement, instead of decline. I have been given the gift of a temporary reprieve of sorts.

This October, I will beat the official odds, if I make it. It will be the three-year anniversary from diagnosis of metastasis. Cancer.gov records the average survival of my disease at about 36 months. Yet, I’m reminded that I had the mets long before. For months before, I had been sharing my concern over that rash in my skin. So, in many ways, I’m already beating the odds.

My life is so very different! We are mostly living out of the RV. We come to the four walled home for doctor visits and business. I know we’ll have to Swedish Death Clean that place — I’m not looking forward to it.

RV living is different than I expected: I imagined that we’d move frequently, but that’s not how it turned out. We’re needed, so we’ve chosen an extended stay location near family. We spend the winter south and this year, the summer will see us in new extended locations, if all is well. We will travel, if nothing changes. We will explore the Southwest a bit this winter, and even cruise the British Isles this summer, if I continue on this path. Cruising is an ideal travel mode for the less healthy. You can control your activity level. You can choose what to do and to some degree, when. You have control over your diet. But I also have the insurance, just in case. No sense in losing all that money.

There are small adjustments to the life I had before: I’m learning that I have to excuse myself and isolate myself following a meal. So I’ll be able to do that. I need to nap often, so I should be able to manage activities like that. I’m looking forward to sharing my adventure with hubby, as we visit locations we have hoped to see, all while someone takes care of us.

Marcus Aurelius

Emotionally, it’s odd. Note the number of “if’s” in this story, when talking about the future. I can’t depend on that future, but life solely in the present is impractical. You have to plan some things. And my mood improves with something to look forward to. So we imagine the worst and hope for the best. I even have another trip in mind, if I am so fortunate. But, eventually, this run will end. And we will need to make new choices and different, more focused plans.

But the idea that I don’t have that much time, probably, changes a person’s perspective so fundamentally. I recommend you try to imagine that you don’t know how long you have. Ok, that’s all of us, but we make some assumptions: we should have years, and often, decades, unless tragedy strikes. Well, tragedy struck me. So now, I think days, weeks, months — less confidently in years. And that is if I think about it at all. I really try not to. I just read a New York New York Times opinion about a fellow traveler who realized that cancer forces you into the Stoic ideal: life in the present.

Thing is, I’m definitely not a Stoic. Marcus Aurelius would be disdainful, truly. I’m still fighting and clawing for the rocks and branches on my slippery slope. I still remember life before mets, and I want that back, in some ways. At least, I want that gal back. I don’t mind the physical changes: the hair, nails, joint aches — these might have happened with age. I miss being engaged and lively. I miss not being focused on me all the time. I miss walking confidently in the world, not hearing every cough and sniffle, worried about catching my death — literally. I’m not smiling back at Death at all. I’m raging, quietly.

There’s a gift in all of this, I’m sure. Let’s hope I figure out what it is. I know, Marcus has an answer:

When you arise in the morning, think of what a precious privilege it is to be alive - to breathe, to think, to enjoy, to love. 

Yeah, yeah...ok. I do, mostly.

For those of you who’ve noticed, I’m not on Facebook often anymore: fear not. You can still reach me here, by gmail, or on Twitter (for now — they’re next) @josies. I also have a presence on counter.social — social media as it was intended to be. I may come back to Facebook in a reduced capacity; one that will deny them the opportunity to mine so much data; one that will make clear to advertisers that I’m boycotting. I do miss my mets sisters; their support was so vital. But I’m still here.