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.

The Journey Now: Part 6

77 Days

That's how long I've been working this chemo.  This leg of my journey began last August, but this chemo, the "easy to moderate" chemo that was only supposed to be 12 weeks, is 77 days old today. It will stretch out three more weeks, with at least more weeks of recovery. I updated my work email notice today, although my doctor's paperwork always anticipated an April return. I hoped to make it earlier, but I probably won't be up for a real return until then.

My Updated Chart

This week's chemo begins the last big round.  They always schedule an oncologist appointment before the round. This week, my doctor was out, so I saw another member of her practice.  I liked her especially well because 1) she didn't minimize my reaction to Cytoxan; it was serious and 2) she agreed: my reaction will be bad, once again.

So, Nurse Ratched, this message is for you: 

No, It isn't just that I reacted badly. The Cytoxan is making me crash, my physical reaction was dangerous and my emotional reaction justified. You really should have acted a bit more responsively when I called; the doctor said so. Oh, and if you can't tell the difference between a dangerously sick chemo patient with neutropenia and someone with, say, a cold, you should stop being a chemo nurse.  

This was only one nurse in my chemo clinic, but she was the one who took my call. My bad luck, I guess. The doctor encouraged me to take my narcotic painkillers.  I'm sure hubby will make sure, when I'm that sick again. I'm not crazy about them, but I guess it is better than being fully engaged with just how sick I may become.

The doctor also prescribed neupogen for the three days following this round. That means I'll be back to being bone pain sore, but I was anyway.  Another reason to be free with the Norco, I guess. Fine.  Bring it on!

I am still fortunate: Just Three.More.Weeks.

Been through chemo? Did you have a Nurse Ratched of your own?  Please share your thoughts.

The True Costs of Cancer

I am three days post-chemo, confined in my house because those neutrophils are heading downward again. I don’t want to field another infection. I just fought off an eye problem. These things happen, they tell me.

Today is World Information Architecture Day, a wonderful event that brings together great Information Architecture luminaries around the world, and most events are free. A few years ago, I was honored to appear in the Ann Arbor event to share my experience. This year, cancer has me listening in on UStream. I am frustrated that I’m not out there, with my peers, working hard to learn with others and share what I know. This is a joyful part of my life; one in which I may not actively participate right now.

This is one of the costs of cancer. Let’s take a look today at the true cost of cancer, from a personal perspective.

I. Monetary Cost

I know that there is a societal cost to cancer.

• There is the overall cost of care. The Cancer Society says it was $88.7 BILLION back in 2011, and it can only have increased from there.
• My employer is fielding the costs of me being disabled right now. Believe me, I am aware that makes me a liability to them. I want to be an asset for them. (Fortunately, I think I have made some contributions that might make it worthwhile, but you’re only as good as your last show…I need to get back in the saddle.)

But there is a cost to my family, and the price has been dear. In the US, middle class families with good healthcare coverage have seen their costs rise precipitously in the past decade. As generous as my employer is, I have to pay:

• Premiums every paycheck that total several thousand each year
• Deductibles and co-pays up to $1.5K each year
• Out-of-Pocket costs that amount to $5 to $7k per year
• Costs that are not covered – several thousand more

People who are healthy don’t incur many of these costs, but if you get sick, you’re screwed. Three years ago, when I had just started my new job, I was diagnosed with my thyroid cancer.  At the same time, my husband developed an internal problem, nearly died and had to be rushed to surgery. Since that time, he, our daughter and I have incurred nearly $40,000 in costs that we have had to pay out of our funds. (My insurance has incurred hundreds of thousands.) Is it a surprise to you to hear that we hold debt to nearly that amount? We’ve sold a house and downsized, done what we can to reduce our costs…and we are still losing ground.

This is the monetary cost of cancer, for many Americans: a long, slow slide, often into poverty.

II. Personal Cost

The cost here is beyond measure.

Cancer Kills Dreams

I have a few dreams:

1. To see the world. Ever since I was little, I’ve wanted to know what lay around the corner, what will lie ahead, how do other folks live? I love nature and beauty and I want to take it all in. I’ve traveled extensively in the lower 48 in my time; I can’t wait to see all of the continents, preferably with Brian at my side. Few things make me happier than traveling.
2. To be the best I can be at User Experience research; to share what I know and to improve the practice wherever I can. Included in that idea: maybe writing a book, teaching, presenting and helping host UX events. I really love my field; I want to make a meaningful contribution to the practice and to my work place.
3. To summit Long’s Peak. I got close when I was young, and chickened out at a crucial point. Brian summited a few years later and left me a message in the guest book at the peak. I want to see it.

I’ve had to adjust every one of these goals to account for my cancer. I am too indebted to travel now; I can't participate and contribute as I'd like; I may never be physically capable of making such an ambitious journey up Long’s.

Cancer Robs Professional Success 

For many of us, cancer signals the end our future at work. There. I said it.

It’s the dirty secret that even the Americans with Disabilities Act couldn't fix. That is one reason why I didn't tell anyone about my cancers for so long, and a big motivator in moving my career from point A to B after each round. 

In past rounds, I’ve watched people sabotage my work, use my accomplishments to further their career, use my illness to plant the seed that I am not capable or that I am somehow dangerous. Human beings are programmed biologically to fear disease. Overcoming cancer at work is made exponentially difficult because we are fighting a psychological battle in others as well as our own.

I fought back. My professional colleagues do hold my work in high regard. A work colleague once told me going to conference with me is like going to a high school prom because I spend my time princess-waving to my many friends. I have more than one design accomplishment I can point to with some pride. I know my stuff and I can hold my head up when compared to anyone in my field. I graduated with my technology degree magne cum laude just a few years after my first chemo. I still see the fruit of my work in the efforts I have made in civic design; even though no one but me remembers . (That’s ok; I didn’t make that language happen because I wanted to be a star; I wanted things to be right.)

Just before I realized I had to grapple my cancer elephant yet again, I was making my case at work for the promotion that I deserve, and that makes sense for my team and business. I was already dealing with the normal issues: team members who didn't take the time to get to know my bona fides. I had to reprove myself despite being recruited for this team. When I return to work this time, what will happen? Will I get that promotion? Or will this be starting over?

To be clear: I have a great job! I am grateful for the way I’ve been treated by my company and my team so far; they have been wonderful. In the future, I worry that circumstances could change; I fear my choices may boil down to being pigeon-holed, or moving on. This was my past experience. I do love my team, and I want to share my knowledge and grow my practice for them. I am just not sure if I can stand the idea of being put in a corner. Having a future to grow into; being a vital member of a team, those remain a big part of my motivation. Past isn’t necessarily prologue here; but if I can’t return as vital as I was, or if I have to reprove myself -- I have to rethink.

Cancer Pares Down Physical Appearance and Ability

We cancer travelers lose body parts as we go, we lose skin tone, nails and hair, sometimes for good. Remaining parts are numb and disfigured; our joints ache more than they should; we have swelling and post-surgical issues that are not for the faint of heart. We never again see the relatively whole person who began the cancer journey.

Honestly, this is the least of the costs, in my mind. They have been the easiest for me to manage. Yet, these can’t be discounted as unimportant: in an active career, looks and ability matter. When you have to make a big presentation or conduct an event, it doesn’t matter that you didn’t sleep the night before or you can’t straighten your foot today or you have a chemo brain fog. I’ve been overcoming for decades now, and the uphill journey just got steeper -- all of which may justify those vultures circling. What if the doctor wants me on maintenance meds that won’t allow me to function as I had? What if I have lost it for good?

Almost!

SO CLOSE!!! The regret I feel is indescribable. I have told my friends that I feel like I was on the carousel; ready to grab the brass ring. Instead, cancer pushed me off the pony altogether. Desire may be the enemy of contentment, and this may all be in God's hands, but who wouldn't be frustrated at effin Cancer! What a nasty, horrible thief!

And I’m lucky: I still have some idea that maybe I will be able to fulfill some subset of these dreams, if I am tenacious. I follow many folks with more advanced disease: a readjustment of priorities happens pretty fast when you get that diagnosis. I certainly can’t assume it won’t be me someday.

I clearly understand that I will never return to a state of non-cancer. I may have no evidence of disease at some point soon, but my cancer elephant will never just sit on the shelf again.

And my dreams and goals don’t matter one bit to him.

How are the costs of cancer affecting you? Please share here, or on Twitter, Facebook or Inspire.com.