Rage Against the Dying of the Light

I’m overwhelmed. Odds seemed to be stacking against me. I was devastated.

I did well with surgery. It went fairly smoothly and I would call it a success. But remember that to get this surgery, I made the mistake, perhaps, of taking a break from treatment. The reason I say it may have been a mistake is because of the last three days.

I was feeling better. I am eating well. But a few days ago, I began to swell in my belly for no reason. There are other gross symptoms as well. After a truly miserable night, I saw the PA oncologist. She felt that the swelling is something called ascites — a buildup of fluid in the abdomen that happens as your liver begins to fail. But she also confirmed that my liver is enlarged. And the bloodwork that no one took throughout my surgery showed the truth: all the numbers look quite dismal.

The hernia surgeon — a really great surgeon who is highly empathetic — had seen the “tumors” as he moved though my abdomen. That idea alone sat poorly with me. But then I developed these symptoms.

The situation is so complicated. Apparently, Eribulen requires good liver function, which I do not have any longer. So it is off the table. Another chemo may do, or the PA mentioned something I immediately zeroed in on: my doctor might feel there are no more options.

I am not ready. I want any option. I want to make it through the holidays. I want to turn the train around and become one of those miracle sisters I hear from in my Facebook Mets groups. 

So today, I went to get the fluid drained. They couldn't find enough to drain. 

No ascites. 

Then I heard from the providers. I will start the different chemo -- Doxil -- tomorrow. 

Yesterday, maybe I had weeks. Today,. possibilities again present themselves. 

This disease is maddenimg. 

I am headed for more rough times. Painful mouth sores, hand and foot syndrome, GI issues. But I'm ready for that. I not ready to die. 

I thought I would be gracious when I faced death but it has come up on me so suddenly...I just can’t process. 

Your prayers, positive energy, good thoughts and love — all welcome. Just as I am no hero with pain and physical difficulty, it turns out I am just as bad at dying. I am certainly raging against the dying of the light, as Dylan Thomas suggested.

Do not go gentle into that good night

Dylan Thomas - 1914-1953

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light

Hell and Hernias

Time to catch up, but recent events aren’t moving in a positive direction. There have significant complications, some related to the cancer, and some influencing the cancer in unfortunate ways.

Update: I got to feeling better and the doctor and I met. She was feeling more optimistic and felt that, after hitting the chemo hard, we might at some point return to the inhibitors 

Unfortunately, being off the inhibitor means that bone pain I felt earlier is back. If it weren’t for bad luck.

The Hernia

About a month ago, I began to notice that my stomach wasn’t handling things well. I’ve struggled for years with a hiatal hernia, but fixing it meant putting my treatment on hold. It seemed too big of an ask, and it would not last long, in any case. 

I think that may have been a mistake. About a month ago, I was eating wearing a tight costume. All of a sudden, the area below my ribs felt like the guy in Alien must have felt — like Alien itself was attempting to claw its way out. The pain was so intense. I wasn’t throwing up, precisely, I was doing what infants do — spitting up my food. This lasted for several hours. I several more attacks before I saw the doctor. She sent me for an endoscopy.

The endoscopy found a huge paraesophageal hernia. The GI doctor noted an ulcer and a polyp, both of which were biopsied. Neither looked all that bad, but I figured it would be the ulcer that would be a cancer problem. The polyp didn’t looked pink and healthy-ish. 

Paraesophageal Hernia

Wrong.

When pathology came back, the ulcer was not caused by cancer nor by the usual h. Pylori bacteria. It seemed mechanical. Maybe it would heal with prescription omeprazole. 

But the polyp was cancerous. Dammit! The same metastatic, ER/PR positive cancer I have been fighting. This represented progression. Even though I had barely started the latest treatment, Kisqali, it was evidently failing. 

The Cancer: Back to Chemo

Time to move to chemo. My oncologist wants me to try Eribulin. 

Eribulin is another in the line of cytotoxic (cell-killing) chemotherapies. But it has been noted to extend lives for up to a year. And I’m not quite ready to give up. So, fine, let’s see how it goes. If I can maintain a reasonable Quality of Life, sure. I will lose my hair, maybe be nauseated, have low blood counts. Again.

Hernial Fun

Meanwhile, the hernia! What to do?

I wanted to waste no time consulting a surgeon. It wouldn’t have surprised me if no surgeon would touch me.  But I found a well-experienced surgeon and he found something no one else did:

My hernia pushes my stomach up above my diaphragm. That’s all hiatal hernias, though. But this one is much worse. It pushed the stomach up, and forced a piece of it, the antrum, against the esophagus. This can be life threatening. That explains the feeling that Alien is trying to get out.  

I can’t predict when these attacks will happen. Sometimes I eat just fine. Sometimes, the pain is so intense, I go to the ER. I’m told to go, in order to measure whether the tummy is, indeed, strangulating or incarcerating. 

Back to the Cancer: CAT and Bone Scans

In preparation for the med change, my oncologist ordered a CAT and a Bone Scan. None of that was particularly great, although I will argue that it could have been worse. Explanations in the parentheses.

1.  No findings of concern for new or worsening metastatic disease to the chest. (This is good)

2.  Diffuse hepatic metastatic disease, mildly worsened from prior exam with reference lesions detailed above. (My liver is still an issue, and getting slightly worse, maybe.)

3.  Diffuse extensive osseous metastatic disease, grossly unchanged by CT but warranting correlation with whole-body bone scan to be performed and reported separately this same date. (Lots of bone involvement. See the bone scan.)

And the bone scan:

Significant heterogeneous activity throughout the femurs, pelvis and sternum, consistent with known metastatic disease / most consistent with mixed lytic/blastic.  Focal activity within the left distal femur, left sternum near the sternoclavicular joint and within the humeral heads are consistent with osteoblastic metastatic disease.  (Well, crap. My legs, near my knees is new, the left sternum is new, and my humeral heads — the rounded arm bones, are all new and heavily involved, along with the hips, spine and chest.)

None of this is good. And let’s add to the fun: I have a UTI, and kidney stones. 

I will see the oncologist tomorrow. Surgery is scheduled for November 30. Pray that COVID doesn’t close the ORs again. I need this surgery.

MAID for Me

Colorado has a law called Medical Assistance in Dying, or MAID. That will be the subject of my next post.

 

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. 

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.

Surviving Pinktober and Life

Surviving Pinktober

Here we are, some 30 days later. We survived Pinktober. 

In terms of awareness for metastatic breast cancer, I think we are making strides. Susan G. Komen upped their ante, giving more for Metastatic Breast Cancer research. I saw multiple fundraisers for my favorites, like METAvivor and others. I feel like my mets sisters and I are making strides in making the point: you will never conquer cancer until you conquer metastatic cancers. Stage IV needs more.

And more happy news: I did not get one single “Check your boobies” or “Put a heart on your timeline” message the entire month. Ok, the last one was September 28, but still! Good job, everyone! Thanks for showing your love for me and the sisters.

My Update: No Reuptake!

So, my own update: in a twist I have barely adjusted to, I’m doing…well. 

I know, right? No, I’m not cured, and I never will be. I’m not really even No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD) for bones yet. But my PET scan showed some really amazing findings. 

I’ve become adept at reading findings. I can speak the speak decently well. Yet, the radiologist who wrote these seems to write especially obtuse findings. All findings are obtuse to lay people, but this one seems to contain double…positives. For instance:

There is interim significant decrease to normalization of the previously demonstrated diffuse hyper metabolism throughout the axial and proximal appendicular osseous structures, correlated with heterogenous osteoblastic disease consistent with diffuse osseous metastases. 

(The interpretation, as best I am able: the uptake to my bones is significantly decreased.) 

She goes on:

There has been interval resolution of hyper metabolic soft tissue nodules along the anterior chest wall in comparison to prior PET/CT. 

(Now this is really good, because I still feel areas of concern: my chest wall is resolved. Hooray for the radiation!)

And

The previously described hepatic lesions, best appreciated on the MRI dated January 22, 2018, are essentially inconspicuous relative to expected heterogeneity of background liver uptake. 

(The lesions on my liver are disappearing and nearly gone compared to the last one.)

So the report boils down to this: a really good response, with some remaining mets to my bones. It’s like a miracle, except it’s medical science.

To be clear: I’m not fully NED or NEAD yet. I can still see them in my bones. I can still see a few spots on my liver — boy, was that liver much worse than I realized. I once again dodged a bullet. I may have more time than the statistics would suggest.

I’m not used to this. I’m not used to being the one who gets good news. I’m used to being the one who weeps at home with hubby and then puts a brave face on for others. Since I began the path of recurrence, I have received one load of bad news after another. I’d think I was cancer free, only to learn I was metastatic. I would think I was getting better, only to find another structure that was affected. I have been through moments where I thought body systems were shutting down; I’ve been through tremendous pain, malaise, nausea and GI, a flu like you’ve never felt before — and even the pain from adjusting to this medication, which I still have to take cautiously. 

But dayum, it’s working! Thank God I didn’t quit as I thought I would.

To what do I owe this? Radiation gave me a boost, for sure. I’m taking the following: Lynparza 150s, twice a day (half the former dose), along with an over the counter drug called Pyridium to avoid that extra pain. I’m also taking a completely different formulation of my thyroid meds, with much more faster-acting T3 and much less T4 — a move which seems to have addressed that obstacle that I’ve written about: that the thyroid meds seem to encourage the cancer. I’m also taking a daily hemp-based CBD supplement when I’m in Michigan or wherever it’s legal. 

And the other thing: I feel well. Not perfect; I still nap nearly every day. I can’t manage a long walk. I still have to juggle, um, GI and urinary discomfort. I can, however, enjoy life again. It's been so long, I had forgotten how it feels. And, the hardest part to adjust to, I can stand down a bit. I feel like I can stop waiting for the other shoe to fall. 

So. Now What?

We in the community know that this good situation will eventually end. The cancer will overcome this defense. It could happen in a month, but the good news is that it could even be one, five or even 10 years. And they may not be 10 years of misery so much as impairment. And I will still have scans and pokes and big pills to swallow daily for the rest of whatever time I am permitted.

I can’t tell you how blessed and grateful I feel. Medical science is amazing. I've been given a gift.

Let me thank God and you all for your love and support. I wouldn't be here without it.

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.

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. -- https://www.metavivor.org/about-us/our-story/

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:

Sobering statistics from METAvivor.org

"...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. http://mbcn.org/

Living Beyond Breast Cancer https://www.lbbc.org/

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 metavivor.org/awareness

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.