It's PN, Verizon. Your tech support needs a lesson in compassion. Can you hear me now?

I'd love to tell you everything is perfect.  It's good, for sure, but not perfect.  I do have good energy, and I fell back fairly easily into work once again. One concern: my incision is open again, all of a sudden, and all of a sudden I'm back to dressings and wound care.  I think I may need to get a second opinion for my surgery site. There are one or two other issues, like the peripheral neuropathy that I still enjoy.

Ok, Verizon: Do you hear me now?

Last week, I was handling my cell phone -- a phone I was packing to return because it had issues -- and doing so when I should have been resting, instead. I admit that. I had exhausted myself that day, and my peripheral neuropathy gets a bit worse then.  My PN seems to be persistent. PN means that the nerves, usually at extremities like fingers and toes, feel a bit numb and tingly...or worse. It can it very difficult to manage fine tasks.

It's not terribly bothersome for me now, but it does make itself known periodically, especially when I'm tired. I pulled the phone out of the box I was packing to reposition it, and my fingers didn't grasp properly. Plop! There it was, face down on the garage floor.

The flimsy packaging to be used to return a malfunctioning phone.
It is nothing but a bit of cardboard and a plastic film over it.
You slip the phone between the two. Yeah, that's safe.

This was only the beginning of my humiliating journey.

I was returning the phone, and a less honest person might have just packed it and claimed it broke in shipping -- especially with the flimsy packing material they gave us. I did not, of course, because my conscience speaks quite loudly to me. Nonetheless, I knew a negotiation was ahead. The phone was already defective; I should not have to put it through insurance.  I already have a working replacement phone. I just want to pack the broken one up and ship it back.

I knew I have to put myself through customer service hell in order to address my issue. I waited until the next day and I was rested. I called *611.  I worked my way through the annoyingly inadequate and repetitive "Interactive Voice Response" or IVR system, so that I could speak with a human being. I wait on hold, listening to HORRIBLE HOLD MUSIC. That took about 10 minutes.

I began with a pleasant enough chat with a woman, one of their support techs. I explained my problems and why. Her answer was to follow this procedure:

1. Put in a claim with Assurion, the insurance carrier.  There is a deductible with that, $149.
2. Ship the good phone I was using to speak to her with back in the shipping container they gave me.
3. Use the new phone they send me.

If I did not follow this procedure, they would charge me the full price of the phone: $300.

I did not wish to be out a phone, and I still wanted to pursue the issue of paying a deductible on an already broken phone. For those of you who've never worked a call center: each call is placed in a queue (a line of calls) and your call is routed based on your inputs into the IVR system.  The person you speak with is a first tier support tech. I know that I need either a second, third of even fourth tier person (we're at the product manager stage by now) before such a decision could be made.  I politely asked to escalate my call, if she can't go any further. She seemed to take it well, and complied right away.

I listened to the HORRIBLE HOLD MUSIC for another 10 minutes. Then I met Mark.

Mark sounded younger than my first tier support.  More importantly, he came in with an attitude.  He came in the call to win. How sad. (I should mention here that unscrupulous call centers frequently spoof their escalation. Instead of sending it up the chain, they just put you on hold until someone else is willing to take the call. I suspect that happened here. There is no way this young man was her supervisor. Emotionally, he lacked every aspect of leadership and maturity.)

Some poorly trained support technicians are taught that you have to "win" your conversation. When customers have unpleasant conversations with customer service, this is usually the root cause: The CSR believes this is a battle, that they champion the company against the abusive customer, and that they must win. The tactics used by such include:

• Making demands instead of solving problems,
• Talking without listening, 
• Talking over the customer, 
• Raising one's voice louder and yelling at the customer talking to you.

We began with his demands that I return the phone, and I began calmly, trying to explain what PN was; why I had it (chemo); what my position is with regard to this phone.  To each of these two, I told them I would not stay a Verizon customer if I had to pay the full price of the phone.  It didn't really matter what I said to him:  He talked over me and raised his voice louder and louder.

I suggested that he moderate his tone, that he was difficult to talk to, and that I was going to record this conversation. (I actually tried and failed to start a recording.) HE BEGAN TO YELL AT ME!

It seems that Verizon very foolishly has implemented a customer-cannot-record policy. The rep has to hang up, they told him. Mark told me that at the top of his voice three times. When I asked him if he was recording me, he hung up on me.  I didn't have a chance to comply. He never intended that I did. He "won."

I've now been on the phone over an hour, and I'm emotionally exhausted.  Nonetheless, I recenter from this stunningly rude experience.  I call back, and, rather than going through technical support, I go through customer support.HORRIBLE HOLD MUSIC again. In this queue, I begin immediately and somewhat tearfully to ask to put in a complaint.

That's when I speak to the wonderful Dawn. She resolves this in moments. Just wait for the new phone from Assurion, and return that to Verizon. Keep the phone you're on. It's fine to do that.

"Why wasn't this simple solution offered the first time?"

"I don't know, and I'm sorry you weren't offered that. I will track this personally."

So, Verizon, you need help in tech support.  You failed a cancer survivor who asked for something simple, and you failed in a rather horrible way.

I'd like you all to share this, please, everywhere. I plan to try to post it to their Facebook page.  I tried to tweet -- to this moment, I have not received a single response. It's a shame. I was a customer of this service before it was Verizon, since the days of bag phones, and I and my family may very well have or will provide them over 100k in revenue; I kid you not. But they don't apparently care.

On the other hand, both T-Mobile and Sprint tweeted right away that are happy to have me, if I choose to move.  Hmmmm....

The Journey Now, Part 11: Post Chemo and Back in the Saddle

Me, with my wig and no eyelashes.

It has now been over a month since my last chemo.  My hair is only 2 or 3 mm long with look that is sort of a cross between 80s stars Max Headroom and Annie Lennox. My new wig makes me look like Trixie from Call the Midwife. (only much older, I'm afraid.) I am taking Tamoxifen now, and I feel surprisingly well.

I waited quite a while to begin the Tamoxifen. I wanted a taste (quite literally) of normal before I started down the path of a new, potentially difficult drug. 

The first step after chemo was to check in with my endocrinologist, who had some sage advice:  If you take thyroid meds, take them separately from anything else, especially far from the Tamoxifen. She recommended that I take that one at dinner. This is wise for several reasons: it is a little hard on the GI system, and taking it with food helps ameliorate that. It gives the proper distance from my other lifesaving medication, and it seems to reduce the side effects.

So far, the side effects have been both surprising and interesting. First, my taste is a bit off. There is a mild metallic aftertaste in my mouth -- nothing like the Abraxane metallic taste, but it's there in the background. Sometimes, I even forget about it. I'm currently searching for cause and effect -- if I can figure out what's triggering it, maybe I can head it off altogether.  

The other negative side effect seems to be a bit of joint and muscle pain. I have arthritis; I've had it since last chemo. It's interesting because I noted that quite a lot of the usual aches and pains
disappeared when my immune system was suppressed (To be sure, replaced by others. This will be a discussion with my doctor soon.)  They are certainly back, and maybe a bit stepped up.  But I won't let that stop me.  I am currently experimenting with rubs, nsaids, acetaminophen, and maybe therapy to address those. But again, not stopping me. Eff the pain!

My neuropathy is better, and I maintain that I did not have much chemo brain this time around.  My fingers get sparkly every so often, and less so than before. I've been doing multiplication in my head; I'm up to 4 places by 3 places (involving my weaknesses, 7s and 8s) and I can complete the equation. Screw you, chemo, you can't have my brain!!!

There's been an unexpected upside to my meds.  I feel very strong and energetic. It's having a very positive effect on all sorts of systems that have been a bit quiet of late, including female and related systems. Yes, I didn't expect that! Most women experience worsening menopause systems...I feel like Tamoxifen is addressing those systems that needed a bit of a boost, and I really didn't have much to complain about before. Enough said. Other benefits from Tamoxifen: strengthening bones (that may actually explain quite a bit) and an improved cholesterol profile, although I've never really had a big problem with that.  

I'm trying to walk 10,000 steps a day four or five days a week. I'm working full time. I feel better, and I am incredibly grateful that I feel so well. I'm not crazy about the ongoing metal mouth, but this feels pretty good, despite it all. There will be bad days, I know, but the good ones seem especially so, now. 

The Journey Now: Part 10 -- Maintenance Drugs

Well, I did it. I completed the chemo. I'm on the mend from the last of the Abraxane. My hair is about 1/32 of an inch, generally, and it looks very white. I'm not perfectly well, but I feel better every day. I expect to go back to work on April 15, and I should be recovering nicely by then. Here's what I'm hoping:

• I am hoping for hair, quickly. 
• I'm hoping for my usual energy again. 
• I'm am looking forward to things tasting normally again.

This Easter season's message of renewal will be particularly meaningful. But the cancer battle isn't over, by a long shot. I have to keep fighting.

Being recurrent means being on guard, forever. Apparently, and very much to my surprise after all these 17 years, my cancer was stimulated to return. Now I've gotten rid of the body part that generated all the breast cancer, but unfortunately, there still could be cancer cells traveling around, looking for a place to call home. If that happens, I'm instantly in a new world, the world of metastatic cancer. I have to do what I can to prevent that.

The progenitor (the factor that forms) of most hormone sensitive breast cancer like mine is estrogen. Apparently, I can still produce estrogen in my system, even though I'm long past chemopause. I have to stop the estrogen that remains from re-stimulating those potential stray cells. There are two current choices: SERMs and AIs.

SERM stands for Selective Estrogen Receptor Modulator. It works by blocking estrogen reception in cancer cells but not for other parts of the body, where it seems to add more estrogen. Tamoxifen and raloxifene are SERMs and have been used for over 20 years. They do have risks, such as:

• blood clots
• cataracts
• increased risks of certain cancers

There is some suggestion that people with thyroids may experience hypothyroidism. Since I take synthetic thyroid medication, I will need to watch how I take my medications and when, closely. I already have an appointment with my endocrinologist to get her advice. I want to keep my blood levels in balance, on the chance that the imbalance encourages the cancer again. I suspect that all my thyroid drama caused the remaining breast cancer cells to stimulate...but that's just a causal theory. I will never have the data to be sure. 

AIs are Aromatase Inhibitors. They work to block the estrogen in my tissues. Drugs like Femara and Arimidex, also with a more recent but fully researched history, are effective in stopping the remaining cells from becoming stimulated. But they have some pretty nasty side effects as well:

• thinning bones
• heart stress
• severe joint pain
• mood swings and depression

These effects are so strong that women are stopping treatment mid-stream, but the survival numbers are strong. 

My doctor recommended two years of Tamoxifen and then three of Femara. I am skeptical that I'll be able to tolerate the AIs, so I'm starting down the path with Tamoxifen for now.

There's hope for better! There are many promising therapies in the wings. The most promising is training your own body to kill the cancer, mostly through the mechanism of a vaccine. I would happily participate in a trial, so I'm going to reach out to find one. 

Meanwhile, time to start my new normal.

What's your maintenance experience?  Feel free to respond in the comments, on Twitter, Facebook or Inspire.com.

The Journey Now, Part 9 -- Last Day

A Sign of the Times

Ok, I finally made it. My numbers are way up, so I think today will be it for a while. I decided to make a big deal, even if I'm a bit under the weather; we all deserve tiaras, right?

So, what comes next? I'm certainly not off the hook, and, as a chronic cancer survivor, I never will be again. I will never be able to say cancer is not on my radar; I can only hope that it is not in my body.

Because, Tiara!

First there is recovery. I will be several weeks getting back to a semblance of normal, and I have a hard time believing I will be unscathed from this harsh treatment. My 90s treatment took years to recover my new normal...how long will it take for me this round?

Among the problems I could have: I might have damaged my heart or liver (these are pretty unlikely, I think.) I might have the tingling numbness in my fingers and toes forever. My hair might grow in funny, or not at all. The most likely problem that I see right now is further damage to my bones. My neck injury is prominent and bothersome. I think my connective tissues, which were somewhat weak, are further damaged as well. I cannot foresee if I will lose the 10 lbs. I gained the first two days. 

I think my chemo brain amounted to a bit of forgetfulness only. I'm not worried there, but I need to recover from what could essentially become PTSD. I do hope to skip the big emotional drama, this time. I find my head is in a different place, less angry, more accepting. I'm hoping to avoid big fallout, but there is a physical component, even to emotional effects. We will see.

My last chemo chair: Don't I look regal?

Can't say it enough, right?

I will see the doctor next week. She will offer one of several drugs that could keep any remaining cells at bay. I may or may not go with any of them; they all have big side effects, including other cancers, or they are a big challenge to a normally functioning life. Because I'm recurrent, the doctor will want to step things up, though. We'll see what she says. I very much would like to find an immunotherapy clinical trial for my status. I'm willing to gamble, because all the rest of the treatments are so full of problems. 

Finally, I'll be getting scans and mamms and getting poked and prodded, pretty much for the rest of my life, however long I have been graced to enjoy this life.  

Enjoy life: my new goal.  

I'll keep you up to date with posts, periodically, so stay tuned. Thank you all for your support through this.

Love you all,

Josie

The Journey Now: Part 8 -- Homestretch

Day 88!

Yes, I'm thrilled to say that. It looks like I might be on the homestretch. 

I can't be sure. I have to keep those Neutrophil numbers up. I barely made it by this week: my number was actually just too low; my doctor signed off anyway. She also stepped up my doses of Neupogen: I'll be getting three, the last one scheduled today. With some Irish luck, there will be no further delay.

One more Abraxane dose.

One more week of the up and downs; one more sick Sunday. Fewer rollercoasters. More hair. Less phenomenal joint pain. Fewer bloody noses. No masks when I go out. Back to work...so happy to be there! I will rejoin the human race.  

I simply can't wait.

Herd Immunity, Measles and Neutrophils -- A Cancer Survivor's Perspective

As I walked to my car in the parking lot the other day, I forgot for a moment. I approached the car but stood back, waiting to access my passenger door while the driver of the car next to me quickly donned her sweater in the chilly air.

"Sorry I'm in your way," she said, quickly moving aside. 

"No problem, you've gotta take care of yourself in this weather," I replied. 

"Oh, don't I know it!" she said, launching into an unexpected discussion. "My husband is immune-suppressed and he can't go anywhere without getting terribly sick from everyone else. He just got over something! It's awful how terrible people are -- how selfish they are about being sick and not caring what they do to anyone else."

I agree, but where did that come from? Oh, yes, the mask!

When I go out, I now wear anti-viral surgery masks in public. With my cancer treatment killing those Neutrophils (the white blood cells that fight disease), I shouldn't go out in public without it. People with relatively common problems might infect me with something I may not be able to fight. She's been there, too, bless her. I appreciate her sympathy.

In my mask, when I had hair!

In play here are a number of new challenges that we have not seen in the past. People are going out sick more frequently, for instance. Bugs are becoming truly resistant. The level of immunity in the population is declining, by choice: A significant number of parents have chosen not to vaccinate their children against the killer childhood diseases that my generation, and theirs, were vaccinated against routinely.

When the non-vaccinated numbers were low, this wasn't much of an issue, because enough people were vaccinated that any disease would not be likely to spread. This was called "herd immunity." Most of us grew up with herd immunity. Recently, the large holes in herd immunity allowed epidemics to break out. Many states, including the one I live in, are wrestling with measles, whooping cough and other diseases.

So, what's going on? When did we stop trusting science and doctors and replacing anecdotal and personal evidence over our community responsibility? Forbes author Neil Howe examines this in a great article about the so-called "Anti-Vaxxers." He suggests that it is generational, driven in part because two generations have never seen how devastating these illnesses are. He also cites factors of poverty and an extremely low level of civic trust. Why should we believe those profit-driven doctors and the government? Can't we think for ourselves? What if our research says otherwise? Our skepticism, cultivated by the media, has us paralyzed when it comes to public health.

I've been faced with this choice many times. In my sphere, I find -- hell, I have -- a fair amount of skepticism about "Big Medicine" and "Big Pharma." I had to wrestle with my own demons about the decision to have chemo. In my research, I was graced with this incredibly impactful blog post that outlined how horrible it was to die of cancer, versus the challenges of chemotherapy.

Author David Gorski challenged me on a key point:

"What is also often forgotten or intentionally ignored by promoters of unscientific medicine is that doctors don’t use chemotherapy because they have some perverted love of “torturing” patients, because they’re in the pockets of big pharma and looking for cash, or because they are too lazy to find another way. They do it because, at least right now, it’s the best therapy science-based medicine has to offer...."

All medical caregivers take the Hippocratic Oath. They do take this responsibility seriously, so seriously that they only choose the protocols that have efficacy based on intense study. Whatever the warts that the "cancer industry" may have, practitioners do care and they want their patients to live. This isn't profit-driven gut feeling; there's evidence for every cancer treatment.

There is also evidence for every public health initiative. BUT WE DON'T BELIEVE THEM! Why are we afraid? Why aren't we more afraid of horrible disease?

Take the current measles outbreak: measles aren't fun. For those in cancer treatment, or those who need to suppress their immune system because it's attacking them for no reason, or those with babies too young to vaccinate, measles are now, rightfully, terrifying.

From the CDC Measles Infographic. 

I didn't get the MMR vaccine; it didn't exist before I had a raging case in Kindergarten. I also got "German Measles" later. I was a very sick little girl, something my daughter did not have to face. I also remember lining up with the rest of my classmates for the Polio vaccine -- I still have the little scar it caused. (The vaccine today is much better than that.)

I remember something else clearly: Our nuns, who had seen Polio's effects first-hand in their work, were quite literally ecstatic that we weren't going to face that awful disease. Vaccines, with their 22 subdose regimen, are far safer than the diseases we are once again facing.

The fact that I had measles doesn't matter. My immunity is gone for now; I can't even eat raw fruit because of the possibility food-borne disease.  It's not merely speculation: when I crashed a few weeks ago (seems like forever), I began to develop a fever. I was getting sick from something...we may never know what. The three Neutrophils left in my body at that point must have been pretty tough...the problem did not develop into anything serious. But it might have, just as easily. If it had been viral, I was out of luck.

I feel like I been able to avoid certain situations that might have placed me in jeopardy only by the grace of God. It isn't pleasant, either: I have not always been able to see loved ones; I'm often sad that I can't be at certain events or certain places. It's not that I don't feel well enough, I have to be careful. In several weeks, normal levels of immunity return, although I'm not clear what happens about childhood disease immunity. I'm not sure we know.

Meanwhile, my status now means that any one of these most infectious childhood diseases, like the one that spreads easily and lives on surfaces for hours, may simply kill me, paralyze me or cause other untold suffering. How ironic would that be?

The woman I met in the parking lot had faced exactly that problem: Her husband is fighting for his life, and someone more careless about health made him sick, and maybe risked his life. Maybe that didn't need to happen, if only....

I know no one who wishes to be responsible for someone's death or suffering. I can't imagine that anyone would find it acceptable to force an immune-suppressed baby to experience great pain because of personal skepticism. This mom's story of her immune suppressed baby exposed to measles at the doctor's office truly is almost criminal! (Happy news: he did not develop measles!)

It feels like we've let fear replace good thinking. As one Facebook post noted, "We've replaced logical thinking and science-based evidence with anecdotes and personal feelings."

That's just killer.

Survivors, are you immune-suppressed? Do you have a story to tell about disease exposure? Feel free to comment (keep it respectful, please) here, on Facebook, Inspire.com or Twitter.

The Journey Now, Part 7: Up and Down

At first, Round 4 Chemo went much the same way the others had. I began to decline at the end of the day Thursday, and Friday got progressively worse. The usual symptoms happened in the usual patterns: GI issues, energy, aches and pains. I battled them with the usual tools: corticosteroids on Friday (boy are they helpful), and Claritin. Overall, I could tell that I was trending downward, heading into that spiral I had experienced last time.

The Claritin was in preparation for something we hadn't tried before: Neupogen. This drug, injected 24 hours after chemo, is the faster acting version of Neulasta: it upholds the white blood cell count, but it needs to be injected more frequently. The Claritin helps with that flu-like bone pain that sometimes results. The shot itself is administered in the soft, lower part of the arm, or in the belly. I had mine in my arm; it didn't hurt. We went home to hunker down.

Throughout the day, I sat with my hubby, increasing the heat on my throw, eating lightly, trying to navigate the symptoms, but feeling uncomfortable and flat. Late that evening, as we marathoned Doc Martin episodes, I decided to down just a half an Activia. The yogurt is easier on my tummy than plain probiotics, so just a bit, I thought might steer my system better.

About 15 minutes later, I noticed the change. I was a bit better! I went to bed. The next day, I felt wonderful! I had to go in to the clinic for my hydration, but I was already on the upswing. I was irrationally happy: No GI, no pain and real energy! Maybe the Neupogen did the trick!

It was such a blessing to feel this way; I was happier than I had reason to be! I cleaned my house top to bottom (I felt that good) and saw an old friend that evening, Saturday. I was so happy; I thought the worse was over. I organized this blog post just to tell you so. 

Then it hit.

It began with an upset tummy Sunday, and worked it's way through by evening. Sunday night and I was sick again. No energy, GI issues (various, no nausea), aches and pains. Instead of going shopping, I was going to nap and recover. I was feeling awful.

Now, I became irrationally sad. I had felt so good! I wanted this to be over! This bump in the road felt more like a pothole. A sinkhole! The thought crept over my mind that I would never be well again!

Ok, by now you're making the same conclusion I have: yeah, that's overdone, too. Both the up and the down: they weren't natural reactions! The fact is, the chemo is affecting my emotional regulation as well: the highs are higher during this time, and the lows are very, very low. My cognitives (memory and thinking) are not horrible, but my emotional regulation is a bit off kilter. 

Well, it's good to know. At the moment, I'm just fine. I am a little metallic, a little GI, a little tired, but not terribly so. The sun is shining and I'm hoping to get dressed today and get some natural Vitamin D. I'm fine, my standard answer to everyone who asks. 

From here, it should be all recovery. I should be feeling better, despite the two additional Abraxane rounds in front of me. 

Day by day, hopefully, better and better.