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