Checking the Boobies...I'm Never Going to Do That, So Never Ask!

Every so often, someone gets me to go postal over some "Breast Cancer Prevention/Awareness/SillyMeme" The latest travesty arrives in Facebook Messenger and reads like this:

Hi lady can you put a <3 on your FB wall, without comment, only a heart, then send this message to your chick contacts. This is for women to remember its the week of breast cancer prevention! Check your boobies!! Hold your finger down on the message and hit forward.

Messenger Screenshot

You would be surprised at the number of friends who felt it was appropriate to tell me to "check my boobies!" I don't have boobies, girls, I have scars. I check them pretty frikkin' regularly, like every damn day, in hopes that I'll find the metastasis has resolved. It hasn't. I.can't.even....

The post is annoying for any grammarian; the number of errors is overwhelming. The hearts are annoying. I admire author Jean Šrámková's retort on Medium, entitled:
Stop It, Facebook Women: There is no “Breast Cancer Prevention Week”:

She properly points out: There is no breast cancer prevention week. In fact, there is no "Breast Cancer Prevention." She outlines her objections in general to the post. But the best part:

“Boobies”? Seriously? Are we

on spring break at Myrtle Beach?

She goes on to say: "Mammograms do not prevent breast cancer, nor do breast exams or screening prevent breast cancer. Mammograms and breast exams detect cancer; mammogram results may increase and promote treatment. Huge difference."

The whole awareness thing is out of control. If you have bad genes, you may be able to improve outcomes by detecting early, and by avoiding certain behaviors. If you don't, pay attention to your hormones and yes, get your mamms regularly. It's once every two years between 50 and 74 now. But you won't prevent breast cancer by doing this. You may detect it earlier, which might or might not help you live longer.

To say that you can prevent breast cancer makes it sound like bad behavior causes breast cancer. My response to that: 1. Define bad behavior, and 2. It mostly doesn't. Out of control cells cause breast cancer. Period. Being thinner, not smoking, maybe drinking less and not taking supplemental hormones may help reduce the risk for some, especially those who have a host of genetic predispositions, but some of us can do none of those things and still be in the crosshairs.

What not to say to cancer warriors has been the subject of past posts, if you remember. Add this to them. Don't send me Facebook Messenger memes about checking boobies.

I may not have much advice about what to say; there isn't much. Make sure you don't lose track of me, I suppose. Stay in touch, and don't let petty disagreements rob you of time with me or anyone. You won't get it back. (Yes, the family awfulness is still mostly awful, with one notable exception -- Mom is happy. These sisters are still sisters and always will be.)

I really admired a metavivor named Holley Kitchen about the subject of what to say:

Her video came up today in my Facebook feed as a memory of my post from 2015. Sadly, she is a warrior no more. We've lost another one.

I cannot stress this enough: Forget awareness and prevention. Here's a great series of reasons why:

• The objectification is overwhelming (Save the Ta-Tas???), 
• Corruption is rampant in some of the big names, but most importantly, 
• The money isn't going where it is needed. It is needed to research the killer, metastatic breast cancer.

Cancer that never leaves the organ it invades rarely kills. Remember that. About 30 to 40 percent of folks diagnosed with cancer of any stage will have metastatic cancer at some point in their lives, whether sooner or later. We don't fully know why, and research focuses on these issues not nearly enough. We need to stop conducting research with stage 1 cells only. We need to ensure that our government has the money to conduct the real research that needs to happen. We can't let up now! About 40,000 of us will die this year alone. That's the awareness you need! You already knew about breast cancer, and that you need mammos. Now know this:

Give your money and your attention to the Stage IVs. The whole rest of the team needs them to survive, so that we all do.

Update on treatment:

I am nearing the end of my first round of Kadcyla. How did it go, you ask? And how is retirement? 

I have no data on efficacy. Side effect results are mixed. I develop fevers with and the accompanying "long bone pain" (like you're getting the flu, but much worse) keeps me down for three days or so.

Fatigue is still very present: I feel like a million bucks, carry a box upstairs and I need a nap...that sort of thing, every day. Sleep is not what it should be. GI issues are somewhat better: less heartburn, other issues more or less the same.

I'm still losing weight. I still have peripheral neuropathy, but maybe I have more hair and nails. An exam of my eyes showed there was nothing to worry about in that department.

It's not better or worse than previous treatments. I am worried about progress, but I'll need data to be sure. That will come after round 3 or thereabouts.

Hubby and I have enjoyed several relaxing, enjoyable days together. We aren't in the RV yet (too busy with caregivers every day this week) but we will be soon. I'm adjusting to my new normal of lower energy and appetite. I'm looking forward to some trips and many new things. Life is ok, under the circumstances.

Am I worried about my future? Right now, it's 50/50 that I get to live past the three-year average for people getting the treatment I'm getting. So, yes, I suppose that's a pretty present feature of my life. I own that now. My plan is to survive as long as I would have; it's just not an assumption I can make like it is for most folks. My odds are lower. So, back to the battle. No retreat. 

Let me know how yours is going in the comments, or on Facebook.

Perfuse Infusions

First, a quick update: we are done with the Navelbine/Herceptin/Perjeta combo. I may get my hair and nails back! Yeay!!

My chemo chair and infusion IV pole

I navigated the challenge of getting treatment in Texas without a problem. We found a great oncology practice and a nice doctor. She walked through our treatment plan and echoed what my oncologist had been saying. We even made new friends while we were there getting my infusion. We visited their home and had dinner/nosh. 

When I returned home, my regular oncologist decided that my antigen numbers aren't great (they keep going up), so it's time for a change. Instead of another round, or moving to other maintenance-type treatments, it was time for something else. 

Kadcyla, or ado-trastuzumab emtansine, is an interesting combination of that incredible Herceptin with a chemotherapy drug embedded within. Herceptin finds the hormone-receptive cells and the chemo enters the cancer cell and destroys it. 

Reviews are pretty positive. Fellow travelers report a few down days, but overall a feeling of wellness most of the three-week cycle. The reports of fewer side effects probably has to do with the careful targeting of cancer cells, instead of the spray-and-pray effect of most chemo. Travelers  with bone mets have seen good results. I'm really looking forward to this. As I write, I'm sitting in this chair and getting my first infusion. 

I thought you might like to know how this all works. If you remember, I had a medical device called a port installed under my skin. I sit down in the chair, and my wonderful nurse places a special needle into the port. After making sure it's clear and running properly, they begin a normal IV, usually starting with some saline. 

Ports and poles: how they work together

When the meds are ready, I confirm it's really me, and the nurse hangs the chemo bag and starts it running. This one will take 90 minutes, followed by a 90 minute flush, but if I do well, future infusions will be half that time. Hubby and I usually visit with patients and staff to pass the time. When I'm fully flushed, the clear the port with a blood thinner and alcohol, then they remove the needle. This is far easier than having them put an IV in a vein.

I'll update soon to let you know how it's going, but I'm feeling optimistic. 

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.