Jumping Track

Early in my blog, I referred to this journey using roller coaster metaphors. They are apt because the ups and downs are beyond capricious, trending into cruelty, even. You may remember this post, for instance.

I think my roller coaster just jumped the tracks.

The Crisis

My story begins in crisis. I was dying. 

You may remember that I have had trouble with the last inhibitor: Verzenio. I tried several times but my body simply said, nope.

As hubby would explain, if I wasn’t feverish, nauseated, in pain and crying, I was drugged and sleeping. I had lost all quality of life. My GI system, in particular, had lost the sense that it was working at all. Maybe I could choke down 800 calories. Mostly, I was in a sort of agony even worse than my experience with Kadcyla years ago. 

It’s puzzling: my bloodwork is a regular component of treatment. It showed only one really bad thing: despite not taking an inhibitor, my hemoglobin remained low. Other measures were not so bad, but this was a bad sign. I have already been diagnosed with bone marrow failure. Cancer has seeped into the marrow now and is doing its evil there. It is our hope that treatment will knock that back. 

But meanwhile, as we work our way through attempts and plans, I was getting sicker and sicker.

At first, the bone pain fevers happened in the evening. Soon, it was constant. Even without taking Verzenio, I was nauseated — and not “sick to your stomach” nausea but a sense that my stomach had twisted into a permanent, backed up knot all day. If I tried to eat, it would sit there. Ensure became a constant companion. 

What’s worse is this sense of disconnection grew. My body was shutting down and I could feel it. 

Hubby wanted to put me in the hospital to hydrate, feed, and treat whatever the cause of the fever and pain was. The pain was much like that bone pain that develops when you get the flu — it happens because the body is trying to ramp up white cell production quickly. And the fevers are a response to something that the body doesn’t like.  

It was with the Kadcyla that I experienced an early version, while antigens were ridiculously high. With this round of fun, I’ve had antigens too high to measure for many months. It is my strong belief that the two are related: I think my immune system is trying to take down my unwanted antigens, causing an immune storm.  

I had plenty of things to try: anti-nausea drugs, pain killers — support in this health system is great. But when things went from bad to worse, hubby arranged an emergency visit into the oncologist. Hubby was going to demand that someone do something.

The Visit

We met a new member of the team, a PA who worked with another oncologist. She had help for us, but first she had some sobering understandings. It was dizzying, but I will try my best:

• There is no question that my current situation was dire and consistent with bone marrow invasion.
• What’s more, things are moving more rapidly than before.
• Many of the treatments that we are looking at have only a small chance of working. 
• It is time to concentrate on quality of life, regardless of therapy.

So she changed everything.

She explained that they couldn’t put me in the hospital because of the way they need to handle COVID-19. Even if they did, they couldn’t pump nutrition in because of certain health risks. 

Instead, she had the life-preserver:

• A transfusion of packed red cells
• Daily steroids
• 24/7 background pain management with a light dose of morphine

Palliative Success

Measures like these are called “palliative care.” They are designed to help with pain and with living life. 

How quickly I responded! Within a day, my energy, my appetite and my joy in life was back. The PA noted that the thing that a host of studies show that what will keep me here longest are the ability to eat, live and enjoy life. I am truly a new woman again. I am so thankful.

But this is my life moving forward. And for quite a while, I must tell you that hubby and I were grappling a much shorter time frame and what that means. There were many tears and discussions and feelings that are impossible to explain. It was so hard to tell our daughter. I dreaded telling others. But it seemed it was affairs in order time, just in case. I will walk through that emotional toll when I can.

But Wait! There’s More!

Today, even grim thought that was called into question.

They ran my PET scan yesterday. It is exactly what I thought it would be, and cause to celebrate:

• My liver shows lesions increasing in size and number
• My bones show exactly the same as last PET — lots, everywhere. But not more.
• Nothing else new

Most people would not celebrate these findings, but these are findings taken almost without treatment. I’ve had very little opportunity to knock these suckers down. Yet I haven’t succumb to more and worse. What will happen when we get serious with our newest inhibitor?

One point upon which my oncologist disagrees with the PA: she sees BrCA gene positive patients like me respond better to inhibitors, so my “chances” of it working are boosted by those same bad genes that started this awful party.

I have just begun my new inhibitor: Kisqali or Ribociclib.  And happily, it is going well. Of course, it is an inhibitor like the others, so it is likely to cause blood count drops, GI issues and all of the usual side effect suspects you’ve seen me complain of before. 

We will be watching bloodwork for my hemoglobin, my white count, and all of the liver measures like bilirubins. I expect to have SEs that may require an adjustment of my palliative care.

I am back on track, but Lord, what a ride!

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.