Leaky Eyes and Treatment Plans

I wanted very much to spend some time with my daughter, so I had hoped that I'd be between treatments this April. I had arranged to be with her in Austin, TX for nearly a month, ages ago.

That's partly why my eyes were leaking last visit with my oncologist. She walked through the findings, showing me some of the spots where we had seen bone metastasis. I admit I hadn't seen the spots on my pelvis, and that was jarring. In fact, I do not have a accurate picture of all the locations: sternum, spine and pelvis.

Yes, they are stable. No new lesions seen, nothing bigger than before. But my mets are "generally diffuse." So, treatment will continue, as there is no evidence on my chest. It is better (probably not gone.) I'm pleased about that. But I can't look forward to ridding myself of the bone mets ever. We are shooting for stability.

By William Edward Frank Britten (1848–1916)-
The Early Poems of Alfred, Lord Tennyson,
https://commons.wikimedia.org/w/index.php?curid=22781448

Ok. (Leaky eyes.)

Why? What's wrong with me? This is good news!

I was tired, I told her. I was sick and tired of all the side effects, even though they weren't the worst. Still, the constant heartburn and GI issues, the neuropathy, the fatigue and the cognitive effects...they are tiresome and difficult. But still, I was hoping for a time where I could be free of all of this. She seemed troubled by my reaction, and I hate that. The doctor returned twice to my room to talk about what happens next. She ultimately decided that I would be doing two more rounds of the Herceptin/Perjeta/Navelbine, then onto something else. Probably, Herceptin and something like Zometa or Femara or...crap. Nothing she talked about sounded good. Maybe I should keep my tears to myself, as if I could.

So, to make my visit with daughter possible, my oncologist told me (well, told hubby actually) to find a doctor and an infusion practice down near where I'd be. That went well. I located a doctor at a large statewide oncology practice with an office about 10 minutes from where we park the RV. It has gone so smoothly, it's scary. What was most reassuring was the local oncologist, who walked through everything my doctor was doing, said pretty much the same things about the current treatment. I felt reassured.

But everything has changed with the bone mets.  I'm frightened for what comes next. The fact that I gotta do it matters not at all.

I'm spending money I feel like I no longer have to travel for bits of time at a time, instead of being able to go full time or even transition my care or go full time. Hubby is putting off things he needs to take care of.

Doesn't matter. Cancer don't care. I guess I'd better buckle up, Buttercup.

Oh, and can we please stop messing with the healthcare political football? It looks like Death Pools are still on the table. I have enough I need to worry about.

Stability is Good, Right?

There is a scene in my new favorite show, ABC’s “This is Us,” that had me tearing up recently. The show features the strength of familial love and commitment during the knocks encountered in life. One member of the multi-generational family has been adopted, having been abandoned by his addict father decades before. 

They connect late in his biological father’s life, as he faces Stage IV (my favorite) stomach cancer. Even though this successful son devotes all of his resources, the father’s cancer begins to take over. It is time to stop chemo.

As the son comes into the kitchen in the morning, the biological dad, William, seems not only happy, he’s ecstatic. He’s ready to do anything, and especially, to hit the road, despite hospice care. Someone asks what’s with him. The answer, more or less: “He’s on a high because he’s stopped his chemotherapy.”

I so understand that, completely!Chemo and the new biologics have their side effects, even if they are milder. Being off chemo means to feel well again; completely well. It’s a happy time. And it’s one I won’t get for a while, or maybe never. My regimen has been extended for at least two more rounds. And I will never by off some treatment. I can’t.

It’s not that the side effects are horrible, but they are a problem. My poor GI system is entirely messed up. If it isn’t one issue, it’s another in that realm, and the problems can be unpredictable and embarrassing. 

My nails hurt from the brittleness and tendency to split and dig in. My hair is just odd; I look like Carol from the Walking Dead with less hair. I have to cut the sides and back periodically or I look even odder. I can’t afford to lose anything off the top.

I have that tendency for infections I have to be vigilant about, especially urinary and bronchial (stay home if you have a cold, please!). I get tired and nap frequently. I get spasms and aches. Each and every one causes a moment’s concern that I’ve got mets there. 

Although my husband insists I’m fine, I feel some cognitive impairment as well. I missed my therapist appointment today. I really depend on her and I’m angry that that happened. Retiring now is the right thing: I would have dropped threads eventually at work.

But, the regimen seems to be working, both visually (my chest is looking much better) and even according to my latest CT scan (my comments in italics):

“BONES/Other: Patient appears to be status post bilateral mastectomy. Elliptical fluid collection in the left chest wall is stable. Small calcification or clip in the superior right chest wall stable.

I have a clip from my needle biopsy. But see what’s missing? No discussion of thickened walls or tumors, on either side. Am I NED (no evidence of disease) there? I can’t tell. I know my skin is still a bit mottled and red but far better. Moving on:

“...There are numerous sclerotic osseous (bone) lesions scattered throughout the axial skeleton of the chest. Overall distribution of disease appears stable from prior. No clearly new or enlarging osseous lesions identified.

“...LIVER: Nearly 1 cm low-attenuation lesion in segment 5 stable, likely a cyst. Subcentimeter low-attenuation lesion in segment 4, technically too small to characterize but stable from priors, also likely a cyst. Tiny low-attenuation lesion in the lateral left liver...also present on prior exams, statistically most likely a small cyst.

The liver is what my oncologist is most concerned about. What do they mean, statistically? I thought there were two lesions ID’d last time, I’d like more information about the third one.

Several other systems are reviewed; nothing in them, then:

"...OSSEOUS STRUCTURES: Numerous small scattered sclerotic lesions throughout the visualized axial skeleton of the abdomen and pelvis, again smaller similar distribution compared to prior exam. No convincingly enlarging or new lesion identified.

Pelvis? I don’t remember that coming up earlier, but it says it was. What does she mean by “smaller similar distribution?"

"...OTHER: No additional significant abnormality.
IMPRESSION:
1. Stable appearance of diffuse osseous metastatic disease...."

I hate scans that produce more questions than answers. I need my radiation oncologist to do his detailed review and tell me what’s really going on. Unfortunately, I don’t have an excuse to ask him, so I’ll ask my overly busy oncologist instead. But it appears that I have the soft tissues beat, and the now we need to target the bones. The Xgeva may be helping by halting further spread. This mostly seems like good news.

So, I will continue my regimen, or move to the next phase when the doctor feels it’s time. But one way or another, I’m going to be doing chemo/biologics or something for a long time to come.

I guess that’s the idea, right? In fact, if I’m not being treated, that’s going to be bad news.

Goodbye, Amy Krouse Rosenthal

Amy Krouse Rosenthal, speaking at TEDx Waterloo in 2010
http://www.flickr.com/photos/trevorh/4390728130/sizes/z/in/photostream/
Author =Trevor Haldenby

Periodically, someone praises my bravery or my strength. I really appreciate that, but I don't really actually feel strong or brave. I keep saying, there are some really dark moments for folks like me, and I'm there for all of them. I know the hidden truth. I'm a big baby.

I also occasionally post about friends I don't actually know:  Lesley Gore, Sherri Fillipo; people who touch my life with cancer, some of them warriors like me. I didn't know Amy Krouse Rosenthal, but her essay touched me as much as her passing today touches me.

She was an amazing human being, whose last great work was dedicated to restoring her husband and her family's happiness after the inevitable. She was advertising for a new love for him. But her endless love for him shown through, and it was easy for me to relate. I feel that way about hubby. Except I am way more selfish. 

And I would want to be as eloquent. And gracious. It was beautiful, and touching, and I cried for hours like a baby. Because I can, dammit! See? I'm not brave; not strong, and I'm often very raw.

Here's her essay and here's her New York Times obituary. God damn cancer. Damn it to hell!

Peace, Amy, to your beautiful soul and to your family.

Updates from Healthcareland

Catching Up: Good

First the good news: No liver lesions, period. My brain MRI shows no problems, either. That's a relief, because one of my newer symptoms are visual migraines and they would totally freak me out if I did not know better. (Visual migraines are pretty, don't hurt, but do interfere with vision. They last 20 to 40 minutes then go away. I have no idea why.)

Catching Up: Bad

The official findings from the PET CT shows that I do have bone lesions in my spine at L1, T1, T3 and T5.  These lesions are seen as new since the last scan, but may have been there and hard to find. They are "sclerotic" meaning that they are thickened. It is possible that they are already healing. One in particular really lights up; the others not so much. As a result, we know that I do have bone metastasis, but their exact status isn't clear. Were they there and missed before? (There's mixed findings on that.) Are they healing or are they just lighting up because they are cussed and stubborn? 

A sclerotic bone lesion -- mine looked similar

We had two choices to proceed: either finish out the 6 rounds of Navelbine, Herceptin and Perjeta, or move right to TDM-1 or Kadcyla. I decided to finish this out, because it is clearly helping in the soft tissues: the radiologist thought I'd had surgery to remove one of the tumors. My oncologist added Xgeva, the bisphosphonate, to the regimen. That may help the sclerotic bone get replaced when it dies off. It is a more clinical version of Prolia. I'm happy to report that Ms. Side Effects seems unaffected, for once. Aside from being tired, I'm suffering few effects at all, and none that are new.

It's a balance

Another interesting discussion happened around my thyroid meds. My radiation oncologist agrees with me, both from his own observation and from some early and older studies. Those studies do indeed show that being suppressed (having heavy doses of thyroid medication to hold off my thyroid cancer) may encourage the breast cancer. I've said this all along; it is wonderful to have my doctor agree, rather than looking at me like I have horns growing from my head.

Let's pause for a word to my doctors:

Doctors, don't argue with me. Seriously! I get reality pretty fast and I don't miss much. It's like a part of my brain is always researching and gathering data. I read peer-reviewed studies and understand what they are saying. I understand statistics. I come to strong conclusions most of the time. Most of all, every point of my body gives me data. I pay attention all the time. I know what I say is true.

Here's more indication (although not causation, yet):  A link is observed in a Harvard study, but another effect is seen in China. It suggests that T3 (Cytomel) be administered instead. Hmmm. I feel like the evidence points to T4 being toxic (Synthroid, Levoxyl) but T3 may actually be better. Anyone know an expert I can get a second opinion from?

Now, back to our regular programming:

The teeter-totter of treating my cancers

I need a fighting chance against this cancer, and it seems like the thyroid meds are making things much harder. I'm going to grapple this issue with my endocrinologist, but I sure wish they would all get together on their own. The studies indicate that being low on thyroid hormone improves breast cancer survivability. It does, however, leave open the possibility of waking up latent thyroid cancer -- and I'm likely to have just that. On the other hand, it's more survivable.

It's like being on a teeter-totter, and there may be no center of mass to balance upon. And I won't lie: I fear that this is the element that will kill me. I feel that resolving this is urgent.

And the seasons, they go round and round...

So, let's move to the carousel with the brass rings. Remember when I talked about the brass ring and work? So close, but fell off the horse because of this cancer? Well, I'm leaving the carousel behind entirely. This is it. I'm done. I'm heading for disability, probably in April.

I know what comes next for treatment won't be easy (I expect it will be much worse, in fact.) And this hasn't been easy. I have developed two UTIs, caught bronchitis, and developed a debilitating case of salmonella poisoning from trying to work. It's time to focus on health, and maybe an RV trip in between, to blog about America.

Getting off this carousel horse in April, if all goes well.
 I need to move on and focus on my health.

Here's how this will work:

First, I will have six month's of short term disability. Short term disability pays my full salary. I will have health coverage and I keep my life insurance. If (and this is not an if situation) I cannot return to work, I will move to Long Term Disability. LTD expects me to apply for Social Security Disability, then compensates me for the rest, up to 66% and change, of my old salary. I get health coverage for six months more, then move to Cobra. We all know how useless Cobra is.

However, I should turn 60. That means I become eligible for a tiny government service pension and another great benefit: healthcare from the state of Michigan. So, with luck, I won't find myself without coverage.

If I do, I'm probably screwed.

I figured it out: I'm going to cost millions to survive. A conservative estimate is $4 million, but it's likelier to be $10 million or more! Million. With an "m." Insurance is not an option.

So many people did not know that the Affordable Care Act took care of so many concerns, even for people with regular insurance. I couldn't be fired for the cancer (I could now; no one will enforce the law. Thank God I work for a great company and they are being Ah-maz-ing about this.)

Before, I wouldn't be penalized for a break in coverage. That will almost certainly change in the near future: to get rid of the mandate that everyone have insurance, they will charge exorbitant insurance costs if you, say, become unemployed and lose coverage. Any break in coverage will cost you loads more. 

And let me be clear: I intend to spend every penny.  I will do what I need to survive. I'm needed, Mrs. Peele.

We're still needed, Mrs. Peele

BUT...

However, if I don't have continuous coverage, or if my insurance becomes too expensive (up to $18K annually, according to AARP) I may fall into a "high risk insurance pool."  Or a Medicaid block grant. Or something that puts all the sick people in one place. Let's be clear what that is: a Hunger Games-style death pool. Millions will compete for limited dollars.

Certain states have tried high risk insurance pools as a way of easing the burden on insurance companies. They are all failures, having been starved for funds in the face of overwhelming demand.

My care isn't special. My costs aren't out of line for mets. Currently, Congress has discussed funding the high risk insurance pool with $2.5 billion.  Experts say 10 times that won't be enough.

So what do we do if there's no coverage for metavivors? Read more  about high risk pools at NPR.

source: American Cancer Society
https://cancerstatisticscenter.cancer.org/#/

Progression: The News We Don't Want

Updated: I just came home from a three hour session with a wonderful radiation oncologist. He went over every scan and finding carefully, looking at each piece of data like I do. They are jigsaw puzzle pieces that paint a picture only when aligned properly. Inconsistencies in my scans made him look more and more deeply. We walked through every image together. He called the radiologist. 

Findings: I actually had those bone and liver mets when we started this current round. Since then, every indication shows improvement everywhere -- or so we thought. 

I will get a few more data points with a PET scan and blood antigens. 

I'm still not sure what the future will be for me.

Update to the update: welcome to the roller coaster. My antigens are up significantly. My body has stepped up its campaign. There's more cancer. It would have gone down otherwise. Crap!!! 

Now what!?

Original post:

I had a mid-treatment CT scan this Friday. I read the results when they became available, because I sure it would be good news. You can see the reduction in my skin thickening and feel the reduction in my tumors. I am not done, but I was making good progress. Or so I thought.

It really wasn't good news:
1. Multiple new sclerotic osseous lesions consistent with progression of metastases.
2. New subcentimeter segment 4 liver lesion may represent a metastatic lesion as well.
3. Stable bilateral lung nodules.

Well, at least my lungs are good! But four rounds of chemo and biologics later, and the disease is progressing and traveling to more distant sites. My spine, sternum and liver are affected. This is terrible news.

This is a good question, posed at yesterday's
Women's March in Lansing: why does my
treatment depend on who is elected?

Another feature of metastasis is the periodic moments we survivors get to enjoy, in which you say: "OMG, I really am dying." This was another of those moments. We do things like plan for the insurance process to kick in. We research states that have assisted suicide and how our insurance will handle that, just in case. (It pretty much does not.) We start to think, "this will really kill me, and much sooner than I hope." We grapple the worst, and start to imagine what that looks like.

I am sure that the doctor will have another plan, as soon as I can speak with her. I am sure there's much more fight left. I still may have decades. There are vaccines and other trials that are really remarkable. But I've had the rug pulled out again. No wonder my fellow survivors hate scan days. 

Now, I have to replan my future and quickly. I will retire onto disability very, very soon. I don't care what's in store; I have to go now! I have to go before I can no longer take advantage  of what benefits I have left.

I stood on wet ground in front of the state capital yesterday, with 10,000 others, listening to people who, among other causes, are determined to have healthcare that makes sense. We are all frightened of the new mandates (or their lack): preexisting condition bans are gone; we can all be fired now. Lifetime caps are reintroduced: each one of my chemos is $30,000. I am an expensive date for any insurance company. I've probably already topped mine.

The high-risk insurance pools will become bureaucratically managed Hunger Games. It's so ironic that people were worried about death panels: you can call these pools "Death Pools. " They are taxpayer-funded pools of sick people, to alleviate the burden for insurance companies and make insurance more profitable.

Each one that has been tried so far collapsed with under-funding. Bureaucrats who have no skin in the game make decisions about where funds will be spent. We are going to have to fight for every dollar -- all while dying.

And let's not forget: I will be subject to even more out of pocket. It's a new year, so add another at least $7,500 to my $60,000 total out of pocket. But hey, some of it is in my tax-free savings accounts, so there's that!

I've said this before: the new healthcare situation may literally be the death of me someday.  But who knows? Maybe I won't have to wait long. I'll show them all and just up and die.

I know this is another dark post. I'll update you when the doctor gives me hope again. But it's good to understand how the cycle of bad news works. This is the beginning of another cycle.

Stage IV, Metastatic: What It Really Means

I love my regular doctor. She's a sweetie. But she does have two annoying traits: 1. She thinks most of what's wrong with me can be controlled by me, like my high blood pressure -- and I don't agree most of the time -- and 2. She thinks I'm going to be cured.

I'm not. That is the definition of Stage IV, Metastatic. I'll never be "cured." There are 155,000 of us in the US. Having metastatic cancer is entirely different that earlier stages. The treatment focus is different. Instead of eradicating, the doctors seek to keep the disease at bay.

Cancer.net defines Stage IV: "This stage means that the cancer has spread to other organs or parts of the body.  It may also be called advanced or metastatic cancer."

The Metastatic Breast Cancer Alliance, in their 2016 report, Changing the Landscape for People Living with Metastatic Breast Cancer, noted:

The dominance of the “breast cancer survivor” identity masks the reality that patients treated for early stage breast cancer can experience metastatic recurrence. The focus on survivorship obscures the fact that, in spite of decades of breast cancer awareness and research funding, 40,000 women and men still die of breast cancer every year in the United States with metastasis the cause of virtually all deaths from breast cancer.  

Metastatic breast cancer (MBC), also referred to as stage IV breast cancer, is an incurable, albeit treatable, progressive cancer that originates in the breast and then spreads to other parts of the body, such as bones, liver, lungs, or brain. 

While some progress with research and new treatments has been made in reducing mortality rates from breast cancer, median survival after an MBC diagnosis is 3 years—and this has not increased meaningfully in more than 20 years. Despite these statistics, research funding for MBC accounts for only 7% of the total breast cancer research investment.

We talk of hope for NED: "No Evidence of Disease." That's my current goal. But however long I may be given, I am going to battle this for as long as I'm given. Period. I may have a reprieve or two. Or sixteen. I may live decades. Without treatment, possibly a year or two.

But I will never be "cured."  I suspect that most people who get cancer are not "cured."

Treatment is not wonderful. I'm having a hard time. Tonight, I am home instead of celebrating Christmas with my hubby's band and some friends. I'm home because I feel like crap. I am in GI pain and I can't trust my system to behave. I can feel that long bone pain that says I'm reaching for the white blood cells I don't have (it's that bone and muscle ache like when you get the flu.) Speaking of flu, people may make me sick as a dog with simple colds. Flu shots don't work if you have no immune system to rally against the virus.

Nor is it easy emotionally. With all of the drama, I also feel emotionally drained, quick to temper, and frightened of our political world and the negative impact it almost certainly will have on me. I have to wrestle a demon that wants me dead and all of this makes that seem so much more likely.

There are folks trying to quantify our experience; the Metastatic Breast Cancer Alliance actually conducted a study and noted these findings, and I agree with every one of them:

• Emotional distress, experienced by a majority of MBC patients, is associated with increasing physical symptoms.  
• You follow this blog; you know how I feel. It's more than physical.
• Most patients initially report adequate emotional support from friends, family, and community, but many feel isolated by the experience of the disease; social stigma is felt by half of MBC patients, especially within the breast cancer community. 
• You see what has happened within my own family. My new hypothesis: it is easier for these "loving" members of my family to keep a distance, so they just used any excuse.
  
  Among other survivors -- they are just so sure that it won't happen to them, and they don't want to be reminded. Best to keep a distance.
• Individualized information about MBC is a critical factor for informed participation in treatment decision making. Information also plays an important role in coping by reducing uncertainty, lack of control, and distress. Many MBC patients do not receive adequate information from health care providers to enable them to understand the disease and its treatments so they can make informed decisions. Patients’ understanding of the nature of the disease and goals of treatment is often poor; many believe they will be cured. 
• I'm going to argue that that applies at much earlier stages. I want a mathematical calculator that helps understand the statistical benefits and costs. The only one I found is now defunct. (Too many updates, I suppose.) But we deserve a more honest look than we usually get. Most treatments are measured by a few percentage points. But that isn't all they held back from me: I never thought I would ever be Stage IV. I was a good girl and did what I was told. No one told me this, and they should have.

• Most MBC patients suffer multiple symptoms of disease and side effects of treatment that disrupt their lives—most common are fatigue, pain, and sleep problems. Despite this, half of patients say they are not routinely asked about their symptoms and express concern about “bothering” their doctors. 
• Ok, no one is going to accuse me of being shy with my docs.
• Financial hardship is a common issue for families dealing with MBC, and many patients do not realize they will likely qualify for Social Security Disability benefits or Medicare. Even, if eligible, the 2-year waiting period for Medicare represents a financially vulnerable time; many file for bankruptcy and face lower standards of living. Other practical needs may include transportation to treatment, home, shopping and child care, disability and insurance applications, and work-related issues, among others. 
• This!! A thousand times!! I now calculate $60,000 in medical costs out of pocket. I face a decline in my standard of living as I retire into disability. God help me if they cut that.
• A significant number of MBC patients report they are not receiving the help they need to address their physical symptoms, side effects from treatment, and emotional distress.
• All I know is that one dose of that anti-depressant nearly killed me by itself.
• Action and initiatives based on the findings from surveys of patients’ needs, and other research, are lacking.
• And this is the fundamental problem with MBC: it is severely under-funded. Research even now focuses on earlier stages, and utilizes early stage disease. No one gets it, no one researches it; we all die from it.

So, now you know. This is no walk in the park. It's not even a walk. It's a sprint. Ok, I'm running for my effin' life.

My Cancerversary: A Day That Lives in Infamy

I'm observing an anniversary: my 20 year anniversary of this awful cancer journey.  I remember it well: Our office Christmas party was in an hour. I was shrugging into my party bra, adjusting it, when I found the lump.  There it was, in my left breast, just under the hand that use to adjust the bra; it was about the size and shape of a small grape.

Where did that come from? A wash of concern; a moment of fear. And so it began. From that moment on, I have been in battle.

This cancer journey that has now become the fight for my life. I can now count four cancers, some 10 or so different instances, a journey from early Stage I to Stage IV metastatic -- it has begun to blur. But I am here to tell you about it.

I always remember the date, because it is the date that so many of consider infamous: the date of the bombing of Pearl Harbor. The date I found my cancer. Twenty years ago, today.