Black Canyons and Less Black Moods

Time to catch you all up! Wow, have things changed. Most of it, not for the good. I tried the lower dose of Verzenio last post. Well, we stepped it down one more, and I took it only once a day “to build a tolerance.” Nope. Three days and I was right back with all the same symptoms. 

The other drug, Faslodex, is administered once a month. I tend to think of it as easy on the side effects, but hubby believes I enter a dark period for a few days on it alone. Each time I’ve tried Verzenio, I’ve done so right after that shot (actually two, in the buttocks). Maybe the strength of the shot is making it difficult to process the side effects of the Verzenio.

After discussing it with hubs, we decided I would take yet another break for our 35th anniversary — a little driving trip to the beautiful Black Canyon of the Gunnison National Park. Highly recommended, even as a driving trip. Then, a week or so later, I would try again.

Yeah, no. That night I developed a fever and they haven’t quit. Every day around 3 or 4 p.m. I’m spiking small fevers, with no reason known. 

Meanwhile, my energy level is terrible, although that may have to do with altitude. Where I live now, I am 5000 feet up, and we were 8 to 9000 at the canyon. My mood off Verzenio isn’t the worst. I can be pretty optimistic despite the fevers and pain — lots of bone pain accompanies the fevers. I am eating, but not as well as I wish I could. Still, I have stopped the precipitous weight loss. 

So why the fevers? Why is my energy so bad? Why is my bloodwork, especially my antigens, not getting any better? Very likely, they are all related. 

I will admit to being frightened. When I was on Verzenio, I ideated quite often that I felt like I was dying. My system was just shutting down, mostly the alimentary and GI. Dead. Not working. 

The worst part is that I was fine with that. I don’t ever want to feel that way again. 

My next stop is likely to be Ribociclib, with the “cute” name Kisqali. It is rumored to have few SEs. I hope so. My concern is that I’ve become too weak to fend off these SEs. To address that, and out of an abundance of compassion, I will have a transfusion next week. I sure hope that helps. I hope the Ribociclib works. I hope my antigens drop below the 9000 mark (normal is 40.) The only reason it’s at 9000 for the last three blood draws is that is as high as this test measures. 

Gee, great. I am such an overachiever. 

It's ba-ack! A new strategy for Verzenio

What a long adventure; and it's not fun. I am between a rock and a hard place. I need the inhibitor, Verzenio. After weeks off, my hemoglobin is actually going down and my ANC is only just enough to start the inhibitor. It's the bone marrow, most likely. 

But my new lower dose of Verzenio still makes me nauseated in an indescribable way. I may or may not throw up, but I will be deathly ill and uncomfortable if I miss my meds.  I won't eat and you can't make me.  I also have other GI issues but the biggest one is that my system seems dead. Mouth to oriface. And it's  coming back for revenge. If my meds don't get on board fast enough, I've given Brian that "I wanna just end it look" more than once. The secret is to conquer that before it takes hold. 

So we work on the side effects. And my palliative team has the meds! A pain killer (Tramadol or hydrocodone) and at least a full dose of Ativan faithfully, not just as needed. Some onandesetron anti-nausea just before the Verzenio. But if the Ativan is not onboard, forget anything else. 

I might get sleepy taking it, but I won't be able to tolerate life without it. I am tired from them. I don't feel like working too hard at anything. My legs are wobbly. Sleep is a big, big thing. But I may eat something as well. I aim for north of 900 calories a day. My brain isn't the intellectual wizard, I know. But once settled, the buzz is pleasant enough. 

And active life that is gone for now: we own a wheelchair because walking and hiking seem tough. I don't eat big dinners but I do try to stay engaged with food. We're experimenting with Freshly. It's not a bad way to handle this. 

I try to stay social and engaged on life. 

But I must be high, or Verzenio will make me die...it feels.  And this is the drug, not the cancer. But there's hope.

I hope that things improve over time. I hope my hemoglobin comes back up. I hope my native energy returns. I hope to feel less nausea as my body learns to accept the Verzenio. Things could get better. So pray this is temporary for me, ok? 

When one's energy slows, one notices new things. 

This is a wild rose, currently abundant in Rocky Mountain National Park. 

Verzenio No More: An Update

I need to update! It's scary time, for sure. I spent five miserable days on Verzenio.  I was nauseated in a way that I didn't think possible and unable to form proper stools. I was cramping and not eating at all. I seriously believed I was dying. Every time I think I've seen the worst, MBC says, "Hold my beer!"

The doctor stopped me three days ago. I am much better, but still crampy and nauseated. I am worried about so much:

• My system wasn't solid before and it hasn't fully recovered now, although I am far better.
• I am still tired. That suggests my anemia isn't fully recovered. My bone marrow failure is crawling back, but it sure is slow.
• I don't know what next. I've had a sense of what comes next for a while. I no longer do. Is there somewhere to go from here? How bad will it be?
• Getting that close to system shutdown felt so frightening. I mean, I've sat with my death for four years but never like this. I felt that cold hand...I can't begin to explain. 

Meanwhile, I see the oncologist this week. I am in Texas helping my daughter recover from emergency gallbladder surgery. I will have to fly in and return to Texas to help her recover and get the RV ready. It gets me out of myself, so that's a plus. She's doing ok so far. We were ready with the RV before. We long to return.

So another day in paradise. Or whatever this is. 

One one update. Doc wants me on a lower dose. I start next week. I felt so good today, too. 

New Sites and Sights for Sore Eyes

I know it has been ages. I realize that the pace of my posts has slowed considerably. I guess I like to post when things change, and for quite a while, the Ibrance/Letrozole combination I've been on worked just fine.

Until it didn't. 

The last few cycles have seen a big increase in symptoms. I've had fevers and chills on my week off which you may remember from my days with Kadcyla. They were new aches and pains; nothing major. My energy level didn't rebound and I was even more fatigued than usual.

As you know I've been moving in the middle of all of this. We sold our home in Michigan and moved to Colorado. This a made sense when I was stable.  My new oncologist would be taking the reins on the same team of horses. Unfortunately neither the old nor the new oncologist could overlook how high my antigens were getting. I don't have a chart for you but my most recent measurement is in the 8,000. This would explain the fevers and bone pain. My body thinks these antigens are an attack. 

The new oncologist ordered a new PET scan. And that clinched it. There is progression throughout my bones, new sites and sites on my liver again, and who knows where else. I am set up for an MRI for my brain, and they're going to biopsy my bones again. 

All of this means I need to change my meds. I am due to start Verzenio, another estrogen receptor inhibitor. Coupled with Faslodex, the two should slow down the progression and even banish the cancer for a time. 

Unfortunately, Verzenio is known for some major GI problems. Some patients fail just because of the severity. I am expecting a big change in my lifestyle in order to accommodate the side effects. But you have to do what you have to do and I have to do this.

Regardless, my neutrophil count was too low to begin the Verzenio, so I will get a 2-week break to bring my numbers up. The Faslodex shot went easily. 

So it's an uphill battle again, at least for a while. The best outcome here will be that I adjust to the medications with the right strategies for the GI problems, and that I respond to the treatment well and we beat the little buggers back. That's the goal. 

A view of Rocky Mountain National Park as seen from Estes Park, Colorado 

I am getting excellent care here in Colorado. I don't regret the move, because as soon as we got the news then processed it, we drove up to see this sight. A sight for sore eyes.

PETs, Mets and Masks

A Tale of Two Homes

It’s an exciting time. I am transitioning care from Michigan to Colorado. I currently have two oncologists and two care facilities. So I decided I'd get my PET scanning in my future home.

My germ masks are a precious commodity

My PET scan went well enough. I still don't seem to have soft tissue involvement anymore. The radiologist noted there are bone mets everywhere but not really worse, or maybe just mildly so; and not more active than before. They are all thickening lesions, not lacy ones. We continue the Ibrance and Letrozole combo. 

It's not a perfectly good news story. My antigens are in the 5- and 6000s again. I'm not sure why. My bloodwork looks good. I seem to have red blood cell recruitment in my "appendicular skeleton" meaning my arms and hands and legs and feet. And my cervical spine hurts due to cancer, not arthritis, I learned. My first ability to go will be lifting, I suspect. 

So I continue to live with the side effects, which is itself challenging. We are learning I have several tell-tale signs that my system is sub par: I am cranky, I get winded grocery shopping and I infect easily. Dumb things like finger nails or my nose become troublesome. And my GI system starts to get wobbly.

Life in the Age of Coronavirus

What a time to be immune-supressed! Life in the Age of the Coronavirus! Like the flu and even common colds, I need to avoid the COVID-19 like the plague. Pun intended. 

For some reason, it didn't hit me that I would need more masks. I have a bunch. But if I'm going to go out in the next few months, I should wear a mask. 

There are none to be had. Anywhere. Unless you have $400.

Yes, I'm well-informed about COVID-19. I've heard the pundits claim (to calm hysteria, likely) that masks won't help. But my own experience with common infection proved otherwise. You know the story, perhaps: on a plane back from Europe, a woman was dreadfully sick and coughing, all within striking distance of hubby and me. I wore a mask and glasses. He wore none. We were both equally careful. 

By now you are imagining the outcome. Yes, he was sick with a bacterial bronchitis (and possibly a respiratory virus combo) within 48 hours. I got sick much later, hoping enough time had passed and he was not contagious. He was contagious still, many days later.

Masks work. And nothing about this virus’ size or shape makes it different for purposes of germ masks. It does live a long time on surfaces, and people often don't know they have it. But overall, a germ mask is at least some protection. 

Problem is, I won't have access to a resupply for many months. Goodie. 

So here are the common sense things you can do to help not kill me:

• Avoid close contact with people who are sick.

• Avoid touching your eyes, nose, and mouth.

• Stay home when you are sick.

• Cover your cough or sneeze with a tissue, then throw the tissue in the trash.

• Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe.

• Follow CDC’s recommendations for using a facemask. CDC does not recommend that people who are well wear a facemask to protect themselves from respiratory diseases, including COVID-19. (Editorial notes: I heartily disagree for the immune-suppressed.)

• Facemasks should be used by people who show symptoms of COVID-19 to help prevent the spread of the disease to  others. The use of facemasks is also crucial for health workers and people who are taking care of someone in close settings (at home or in a health care facility).

• Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.

• If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. Always wash hands with soap and water if hands are visibly dirty

This information and more may be found at:

https://www.cdc.gov/coronavirus/2019-ncov/about/prevention-treatment.html

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.