Time for an Update

Is it time for an update? I suppose.

As you remember, I’ve moved from my regimen of Herceptin and Perjeta coupled with Navelbine to TDM-1 or Kadcyla. I’m on round three. It’s given as a single infusion every three weeks. Here’s how it’s going.

Pros:

• Much less heartburn
• GI is manageable
• Food tastes mostly fine
• Week 3 is almost sort of normal-ish
• It’s nice to not have to be in the infusion chair so frequently

Cons:

• I run fevers for about two weeks; I think the fevers are getting worse. I have to use acetaminophen or NSAIDs and really stay on top of dosing.
• Coupled with the fever, I feel that long bone pain I’ve written of in the past. I have this pain (it feels like you do when you come down with the flu) every time I develop the fever. It’s how I know it’s time to take some meds.
• I have low energy throughout the cycle, compared to my old self. It’s especially strong during the feverish part of the cycle. That means frequent naps, exhaustion from minor activities (like a trip to the bathroom), etc. It does seem a bit worse than the previous regimen. I am more “disabled.”
• I may not be making progress, at least with the soft tissue. My antigens are up significantly, not a good sign.
• Because I don’t feel that well, nearly everything I do is impacted.

The Post-Infusion Camping Trip

A dear friend wanted to spend her milestone birthday with me, so we arranged to go camping; she was hoping that we could just sort of travel and boondock, but it was Fourth of July weekend. We wisely made reservations. Of course, infusion day was the day before; nothing I could do. But we have an RV with all the comforts of home, although it is exhausting to pack – we managed to do it. We left for camp right from my infusion. It went ok that night; this was only round two so I wasn’t sure what the pattern would be. We were ready for the worst.

Our Campsite

I think it’s hard for high-energy people to be patient with us; my girlfriend brought a fun friend who is more at her scale, which was wise. I started out mostly ok, but by day three the fever cycle made itself known. We did have some fun: we ate, we saw some great fireworks, and I did what I could to be celebratory, but I also fell asleep in my camp chair, didn’t go for many walks, got pushed in a wheelchair and ate very little. I even forgot to bring out her birthday cake on the right day.

As time went on, the more difficult it became to reconcile the different energy levels. By the end of five days, I was ready to just be in bed, so instead of wandering with them, we headed home. (We had had a technical difficulty as well; wandering probably wasn’t a wise choice at that point.) That illness kept up for another week or so. I am just not up to much of anything when I feel like this...and this is becoming the majority of the cycle. Plus, it seems to be getting worse.

So much so that I thought that a strange lymphedema that I developed – it honestly looked like my breast was growing back – looked worrisome. I ventured downtown to see my doctor, and she sent me to the surgeon. Yeay! Another surgical procedure on my very favorite spot! (Yes, that is sarcasm.) It was mostly good news: a seroma (basically a large clot of congealed blood) not infected, no cancer seen. And eliminating it means that suddenly I am breathing better. I had no idea that that was an impairment to breathing. But once again, I’m tending an open wound to my chest wall. Gah!

That means I’ll be tending it while I’m on my European trip. Yes, Europe! In an expression of major financial and possibly medical irresponsibility, I’m going to take a river cruise. (But my doctor approves; it’s ok!) You’ll read more about it in my other blog, www.sunstarlandings.com. That type of cruise made sense to me when I arranged it many months ago; I’ll finally get to see all of those things I had not been able to since high school, the things that poverty followed by parenthood and middle class life denied me. Even if I'm not well, I can see windmills, vineyards, Deutsches Eck and Lorelei from my veranda.

The cruise is scheduled for week three. See how that works? But even if I’m not that well, I’m well enough to try. I’m going dammit! Then I’ll get the CT scan, the bad news and the plan for the next thing. I’m sure there will be something. There’s always something.

Feel free to share your thoughts and feelings below.

The Paper Chase

The raining paper scene from "The Paper Chase"

There is a great movie from 1973 about the rigors of getting a law degree; it’s called “The Paper Chase.” At one point, out sheer frustration, the protagonist climbs to the roof of the school’s classroom building and throws down the thousands of pieces of paper that composed the record of his academic career: notes, papers, worksheets -- a rain of paper. That image is what comes to me when I have to waste my time creating a paper trail, often needless, for the bureaucrats. I have such limited energy; I sure wish that wasn’t where my energy had to be focused this week.

I should explain why I need to do this: they need to pay me. That requires scrutiny. Here’s how I am lucky to survive now (and pretty standard for most American workers), and what I hope happens in the future:

• Short Term Disability:Duration: up to 6 months
  Benefit: Full Salary
  Healthcare: Normal employer-paid, with premiums and normal employee costs

• Long Term Disability:Duration: After 6 months qualification, if approved, up to (in my case) age 65
  Benefit: 66.67% of my former salary, minus SSDI, below
  Healthcare: 6 months, employee/employer paid, followed by COBRA (a federal program that lets you buy your own employer healthcare at full cost to the employee.)

• Social Security Disability Insurance:Duration: If qualified, as long as necessary, sometimes with periodic checks
  Benefit: Based on my long work history since 1976
  Healthcare: after 24 months, standard Medicare

and my tiny Ace-in-the-Hole, I was a state employee:

• Retiree PensionDuration: Life, after age 60 for me
  Benefit: 1.7% of my meager salary averaged over the last 5 years, multiplied by the number of months worked (so, not a lot)
  Healthcare: Retiree Healthcare, with a premium, deductible and out of pocket, similar to now

(Note: none of this anticipates what will happen when the new healthcare law gets past. I can't even begin to speculate, but none of it looks promising and will affect multiple programs. This also doesn't anticipate Medicaid, yet.)

So, you got all that? And all of them will require paperwork. Each actor involved in this drama has a fiduciary responsibility. In other words, they have to have proof, and that means paperwork: work records, doctor’s statements, scan findings, etc. My doctor sent some 65 pages over to my Short Term Disability administrator.

Somehow, in my initial qualification, they missed an important point, so I was put into the “Return to Work” workflow. If you are off for pregnancy, for instance, you’re going to return. So you give them a general idea when you expect to be back, and they check in with your doctor at that point. Somehow, the “Stage IV” was missed in all of the fun, so they expected me back to work June 19. But that information is buried online, and they did not communicate with me in any way until it was too late.

My first clue was a call on a Sunday. I didn’t recognize the number, so like all good Americans, I didn’t pick up. It was a MetLife customer service representative, wanting to know if “I wanted an extension.” Oh, No! What fresh hell?

I’m being paid weekly now, so any blip is going to hurt. Sure enough, I logged online. I had been suspended. I had to wait until the next day to talk with someone.

<rant>Ok, time for one of my little rant breaks on behalf of better UX. If you are a CEO of a company, and you have a Voice Response phone system, I want you to become a regular user and try your system, like every Joe that has to slog through it. You will find out that there are dead ends, hang-ups, and possibly the worst music you’ve ever heard. You’ll likely have to repeat the same information several times. You may try to talk to the machine, but she won’t understand your NBC Midwestern accent. Please do this, then fix your system and save us all. I’m begging you! </rant>

I slog through a few things and speak first with a nice CSR. He’s quite sympathetic when I start to tear up, and he gets me through (eventually and quite persistently) to my case manager. Sure enough, my doctor hadn’t sent through any of the information for scans and findings and a return date.
Um, I don’t have a return date. I’m Stage IV. While my regimen has changed, there are no new scans. But I’m really never coming back.

“Oh my god,” she said after a moment’s paper shuffle. “It says that right here.”
Ah-hah. They missed the important thing: I’m dying of cancer. Great.

Someday, maybe it will be common for folks to come back to work, even after Stage IV diagnoses. But that day isn’t today. I can hope for 10 years, but it isn’t going to be 10 years of wellness, even so.
There is a different process flow for folks who aren’t coming back. She promised to put me into that, to take this to her Unit Manager, and to get moving. Well, that problem seemed to be resolved.

Hahaha...silly me!
I wait a day, check online. Suspended.
Another day...still Suspended. Clearly, no paycheck this week.

Ok, time to navigate the wonderful VR system again. I get another great CSR. First he tries my doctor, but no luck for the doctor or the nurse. He gets ahold of my Case Manager again (I think they use IM to check for presence.) I wait a while, but I finally speak with her. She’s still waiting on the doctor for paperwork. “Why?” I ask. You basically have everything you need already and there are no new scans. She puts me on hold to go talk to her supervisor. (I should mention I’ve cried like three times already. This mortality stuff isn’t easy to talk about, even for me.)

Lovely hold music, happy hold music...walk and breath...hold music...remember, I need a nap after going to the bathroom!

She gets back on. I’m approved through August. Then they will start me in the process flow for long-term disability. Sheesh. I wonder: Even now, maybe they are hoping I’ll die first. The next day, she calls and confirms that the supervisor flipped the switch. Paychecks back on, next week.

When I spoke with the doctors’ social worker (thank God for her, the paperwork warrior) she had sent them yet another document that clearly stated “Stage IV, not coming back” in more medical terms. But come August, my scans will still be needed.

I can’t imagine what people do who’ve never worked with bureaucracy and have no head or patience for paperwork. The ability to manage healthcare and disability is a special skillset composed of patience, communication skill, good office management coupled with endurance and persistence. I learned it working in government. How do people who have no ability in this area survive? Is this why we have so many homeless and chronically ill? They couldn’t manage the paperwork so they just dropped out or died?

Sigh. At least I’m hearing now from the Long Term Disability people, and a claim is being opened. A new paper chase has begun.

Share your paperwork fun in the comments below or on Facebook or Twitter.

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.