Thursday, December 17, 2015

There, it's done!

There, it's done.

I had the mastectomy. I had the salpingo-oophrectomy.  I'm out of the hospital and on the mend.

I keep saying, surgery is my jam. I handle surgery, no issues. I just do. I've had zero pain meds. I know! But it's just a little sore, not a big deal. Not like chemo, not like so many things. It all went like clockwork and now all I have to do is recover. I did all of this because of my bad genes, but there was nothing that said "cancer." So, this went easily.

I took my medication the night before. I was worried about it, but my doctor told me to keep a positive attitude: guess what? She was right. It was a little crampy, the misoprostol. Not a biggie.
An IV Pole with a bag hanging.
Oh, my IV pole is my friend.

I went into the hospital with the wonderful hubby, who himself is still recovering from his surgery. They prepped me, gave me happy drugs and wheeled me away. Actually, I don't remember getting wheeled away. I was on drugs.

I woke up five hours later. I was told one of the doctors was delayed, so it took longer, not that I noticed. From there, I slept and wrestled with the IV so I could get to the bathroom. That was a pain, but it went fine too. I managed all by myself all night. I ate a liquid diet. I slept and posted on Facebook and slept some more.

I have three stitches in my belly, including my belly button, and a big bandage across my chest. I have a drain I get to tend. All of this is fine. I'm relieved to have the weight off my chest.  I now have a boy chest.

I have a long list of pathology findings coming:

  • My breast tissued will be examined
  • My ovaries and tubes, the same
  • There were samples taken during the hysteroscopy (they used a scope to examine my uterus)
  • There was a little glioma on my colon

So, I will have interesting findings coming. More cancer concern, but not a scare. Not yet. Let's just relax and recover for a few days. I do have pain meds, if I need it, but...I'm good for now.

Thank God.

Tuesday, December 8, 2015

No One Pays Attention

How long have I been telling you I'm heading for surgery? Two months? Three? Why is everyone surprised then?

Everyone I've mentioned this to this week, even people I know I told personally, not just through this blog, seem to have forgotten. Apparently, they don't read this, and they must be tired of hearing me talk about myself. (Lord, I am!)

Amazon woman "S03 06 01 020 image 2552" by William Henry Goodyear - Brooklyn Museum. Licensed under Public Domain via Commons -
A single-breasted Amazon woman -- not going to be her anymore!
As a refresher: next week, I'll have that second mastectomy, along with a "salpingo oophrectomy", tubes and ovaries, both coming out. (You gotta love Greek -- Oo is the Greek word for "egg" and an oophor is an egg bearer. Salpingo means tubes or trumpets, but I'm sure they meant tubes this time. The "ectomy" part literally means to cut out.)  If you also remember, I will have my uterus looked at, because it's showing signs of a toxic reaction to my Tamoxifen regimen. I would not be surprised if I wake up without it as well, but that's not what the doctor is saying.

Yep, more fun over the holidays with stitches and drains and wound care. I'm ten days out from the anniversary of my first chemo, and I'm heading to the hospital again.  At least the food is really, really good there.

To add to it, my company separated officially from it's former parent, so our insurance changed just about a week ago. I've had to scramble to make sure that I'm covered, that the deductibles and out-of-pocket costs (over $5k) will still apply -- they nearly didn't.

I had to hit the ground running on this, because my dear hubby needed surgery, too, this time for his shoulder. He'd had a rotator cuff repair three years ago, and the recovery was long and difficult for him. Fortunately, this time it went more smoothly. He's going to recover quickly.

Fortunately, because our HR was on it, things went well with the insurance,. Thanks, HR Leader Lori. You saved much in the way of drama for me. I am most grateful.  Fighting hospital bills while recovering should be considered unconstitutional...cruel and unusual punishment!

I took a lot of encouragement from hubby's surgery going smoothly; maybe mine will as well. Maybe I'll recover very quickly, too and I'll find that certain issues, like that cyst that caused and infection, are gone.

One thing right out of the gate: I'll be balanced again! Right now I look like an Amazon warrior, who cut off her left breast to use a bow and arrow more effectively. (You may have heard me joke about being Wonder Woman, an Amazon, because my car is invisible to other drivers -- well, I even look the part now!)

I've had another challenge as well: my blood pressure is just spiking. High. I have no idea why; I've been losing weight, I walk a great deal, I have a decent diet, just a bit high in sugar, but not what's going on? And remember those heart palps? There's a correlation as well. And I have to grapple this now: they won't perform that surgery if I don't get it down. It doesn't rain...

So, you ask, am I upset about losing body parts again?  Yes and no. I will miss things a bit, but my looks are shot anyway. My once lovely shape (I had a great figure before all of this) is pretty misshapen now, so I'm concentrating on just keeping healthy. I *welcome* the possibility of losing that still troublesome cyst on my ovary.  So, I might be a bit sad that this has to be, but, really, it was ready to go anyway.

Docs, I'm ready. Make the drugs good.

How's your health adventure going? Feel free to comment here, or Facebook or

Wednesday, November 4, 2015

Another Cancer? Say It Ain't So! Ok, Probably.

My lucky MSU socks -
I have to wear them or the
Spartans lose against U of M.
When I go for a long period of time without posting, I want you to know it's against my nature. I am sometimes amazed that the training as a journalist I received at MSU (Go Green!) remains with me, always. That means I love language; I love to write and post and create conversation. When I started this blog, I made the commitment to keep that up. 

The cancer journey has lots of twists and turns, and it is difficult to see all ends. Or, really, any end. I don't post sometimes because I don't want to worry, say, my family and friends. This time, I didn't post because the outcome was not at all clear, and I didn't want to worry you, my friends online.

Oh, I had another elephant dance, for sure. This one was pretty intricate, too. Here's the story.

You remember that I have the BrCA2 gene deletion. If you remember, that makes me vulnerable to a host of cancers, most notably breast cancer. It also gives me a strong run at ovarian cancer. So I rallied my surgeons and arranged to have the other mastectomy and a salpingo oophrectomy -- both the tubes and the ovaries go. I can have them done on the same day, same anesthesia. I want to do this for the holidays, so I can just blip out like everyone else does around that time of year, and be back before people notice I'm out. 

Winding road, fall color in Pennsylvania
Every day is a winding road, right?

That was the plan, anyway.

More Findings

The GYN surgeon wanted an ultrasound of the pelvic area to ensure that I'm good to go. The findings suggested -- not so much. Again. Among the findings:

Uterus > Endometrium
A hypoechoic area is seen within the endometrium measuring 3 x 4 x 4 mm.

Remember that word, hypoechoic? That means the ultrasound echoes are weaker, it is harder to see. It is associated with cancers. Uh-oh!

The latest Newsweek cover.
No, elephants don't get cancer, we do.
1. The endometrial stripe is thickened measuring 9 mm, with cystic areas noted. The differential includes endometrial hyperplasia, tamoxifen related endometrial changes (although patient states non-usage over last several months), and endometrial malignancy is not excluded.
2. Small amount of fluid in the cervical canal which is a nonspecific finding.
3. Neither ovary is sonographically visualized.

So, they found something suspicious, just not my ovaries. I’d had previous ultrasounds where they didn’t find my ovaries. So, I was only mildly annoyed when the US tech describe my ultrasound as “difficult.” Hey! She practically stuck that probe right into my bladder – it hurt! Transvaginal ultrasounds aren’t a spa service, that’s clear.

I had this done in early October, just before my highly anticipated (by me) fall color tour. We went to Pennsylvania (so I could combine it with a work trip) where the colorful panoramas were stunning. I was sure that I would have no problem with the findings, so I made a mistake: I checked my electronic medical record chart Saturday morning. I should know better.

Miles and miles of color -- off of US 6 in the Sweden Valley
Let me tell you about the crisis that brought about in me. I was furious, then resigned, then teary, angry -- just a rollercoaster of emotion. For about five seconds, I thought about not telling my husband, but that’s not how I work. I share everything with him. I apologized to him even for looking. It took hours for me to pick myself up and function: I had a big presentation coming up; I had to look sharp and act normal. Criminy!

At least I had the grace to snap out of it to get some beautiful shots, and to facilitate that event a few days later. That counts for something, right?

I called my surgeon, who is kind enough (or crazy enough) to leave me his cellular number. He showed great empathy, but I would not be assuaged with “I’m sure it’s just normal…let’s have a closer look during surgery.” Nope, because if it is cancer, it grew up with less than 90 days of Tamoxifen. If it is cancer, it’s very, very aggressive. And I’ve had this stitch in my side that got a lot worse on Tamoxifen. It was possible that I had yet another CANCER. Ok, it’s endometrial, which usually responds well to having those parts removed, but that wasn’t the plan!

My plans are now completely askew! I had no idea what to expect!

More Procedures

So, we did an endometrial biopsy. Another fun procedure! Actually, things were worse back in my earlier days, so recovery really was quick. But suddenly that stitch in my side became an infection. I actually don’t think the biopsy caused the infection, wrong place, but no one knows what did. What got stirred up? What didn't like all this fussing?

What I know is that my lower left abdomen/groin area was stiff and hugely painful, and I developed a fever, even after the doctor prescribed big antibiotics. I still don’t know what caused it, I just know that the antibiotics have it under control. I will have an ultrasound next week, but if they didn’t see it before…

Meanwhile, I am trying to act normally at work. We are in an intense period, and I am navigating some major challenges. I was working from home to manage pain and medication side effects. (What is the major side effect of ridiculous amounts of antibiotics? Hint: it pays to be near the restroom.)

The biopsy results came back normal. The bloodwork showed I’m responding to the antibiotic. I’ll have another ultrasound next week, but right now, the plan is unchanged except for the addition of an hysteroscope – they will dilate me (misoprostol, anyone?) and have a look-see, complete with light and camera. It is still possible that something is there, but who knows what?

Update: The second ultrasound found the ovary, and it has the same cyst that has been there, giving me trouble, my entire life. Doctors should learn to listen to me. It also shows some possible progression of my uterine findings, but not the tumor. 

What fun! I am so glad I’ll be out of it. The day is nearing, and I find that my courage is not stuck in the sticking place, but "There is nothing either good or bad, but thinking makes it so."  Thanks, Hamlet.

I'm thinking this sucks.  How's it going for you?

US 220 vista in Pennsylvania, full of colorful trees.
Another magnificent vista off of US 220 in Pennsylvania

Tuesday, September 29, 2015

Oh, My Elephant

I've told you many times about my Cancer Elephant. He's really big this week.

I told you that I have had my genes examined and indeed, I have BRCA2. Having an oophrectomy (ovaries and tubes removed) was the most immediate recommendation.  I could wait for the second mastectomy, right? That was true, until I had an MRI.

My big pink and teal cancer elephant has come to call, again.
Hello, Cancer Elephant...please go back to your shelf!
First the MRI was unpleasant. I had to lie face down, and the ear protection fell out. I was calm until the noise really got going. I thought all that buzzing was happening inside my skull. I had to practice mindfulness to keep calm.

The MRI showed a mass, most likely a cyst. It looked small and rounded, not fed by veins, not spidery and reaching. Just a mass.

Well, hell, I'm done with that. Now I want my mastectomy immediately. Can I do them both? At the same time, so that I can recover all at once and avoid problems at work? 

Maybe, they said.  You need to talk to your breast surgeon and coordinate with your gynocological surgeon.

Hello, Cancer Elephant.

UPDATE:  Ok, it's benign. HUGE sigh of relief.

In the meantime...

A few weeks ago, I had was referred for something called Mohs surgery... on my nose!  I had developed a small bump at the base of the old basal cell site from many years ago.  The dermatologist looked at it and decided  to refer me "to be sure."  

Mohs surgery (micrographic surgery) takes slices of skin from the affected area, layer by layer, until the sample finally shows no cancer. If there is cancer, the surgery can go quite deep. This surgery is a big step, and the gynocological surgeon suggested I get a second opinion.  

That dermatologist got me in immediately.  He looked at my nose, numbed it up, and  took a "small biopsy so we will know if we need Mohs."  Now, I have a big hole in my nose.  Dammit! That was what I was trying to avoid!

See, call me vain, but I've been down this road before. It takes months to heal. Yes, I'm glad for the early biopsy, but, I have to face people with a big bandaid on my nose.  It's not like they aren't worried about me at work already. Do I need to parade my vulnerability on my ample nose?

Never trust a dermatologist when they say "just a little."  I'm officially traumatized back to earlier days.  So much so, I refired my therapy. I need a little support, honestly.  The elephant is a bit bigger.


I had an echocardiogram for my heart. If you remember, I've been struggling with heart palpitations, especially on Tamoxifen. (I've stopped taking it at the moment.)  But seeing my screens with valves opening and closing and Doppler-colored blood flowing brought back memories of my daughter, who had many of these as we tracked her aorta and her heart health.  By the end of it, my anxiety was pretty high.  Fortunately, they reassured me that my heart would probalby be determined to be fine, although they'd take a deep look at specific structures to make sure the chemo hasn't affected them.

A while ago, a smaller EKG was conducted, when I first saw the cardiologist. When the findings were posted on my Electronic Medical Record, it basically said I'd had a heart attack. That was another tipping point: I had to get my cardiologist to call on a Sunday to assure me that that was an error.  So, I spent about five hours, all told, thinking I might be on my way out much sooner than I expected.  

My findings from the Doppler do indeed, show a pretty healthy heart. Thanks, God. The chemo, radiation and all this fun hasn't hurt me yet.  I don't know how, but I'll take it.  Even if it means we have no idea why I'm having palps. (HINT: *ahem* Tamoxifen *ahem*)

Ok, taming my elephant back down....


I had that consult with my breast surgeon. A 15-minute appointment turned into four hours,  as they poked and proded me with more mammograms, ultrasounds and fine needle biopsies. Again, my anxiety got the best of me before the end, and I was weeping on the table as the resident learned to get good tissue samples.  These biopsies do not hurt much to me, they just play games with my mind.

A picture of a maze, my internal mind game.
The game is in your mind.  And you have to play.
This was another tipping point. You see, there's no one that can say the biopsy will come back clear. No one can guarantee that I am not in a whole new world of horror.  I've been on this exact table before, you know. Queue the tears.

It is ironic to be told how strong you are when you just don't feel it at all.  You feel small and vulnerable and so done with this cancer anxiety.  You just want to wake up from the nightmare of very nice caregivers and fear of what's next.


I'll probably have the findings of this next week.  I'll have the dermatology findings later this week. Meanwhile, I had better get comfy with my boy, that elephant of mine, cause he's like an elephant in the china shop of my emotions right now.

How's your elephant? Feel free to post here, on Facebook or Inspire.

Update on the dermatology finding: Yeah, no cancer, just some actinic keratoses. And big hole in my nose.  Not happy.

Sunday, August 23, 2015

Tamoxifen and Testing

I know I haven't posted lately, mostly because what's happening in my life is not cancer, and that's a great thing. But I do have some challenges, so time for an update.

I have to tell you that I was (note the tense) doing well on Tamoxifen. It was hard on my GI system and kidneys, which are somewhat wrecked from all the medical treatment. (Tests say I have external renal pelvises and large shoulders, which means swollen, basically, but functioning ok). Tami caused periodic radical joint pain, but eased other pains, so that was a trade-off. My hair looked great (but impossibly curly), my nails began to recover, and I had a sense of wellness I haven't had for a while. That was my experience. I know what you're thinking: Amazing, given that I'm the side-effect queen. I actually felt like my body was getting something that it hadn't had for a while.

Then, it began. As the weather warmed, so did heart palpitations. Heart palps means your heart is not beating correctly, either through skipped beats or improper beating rhythm. They were small at first, then truly demanding. It was impossible to sleep. I spent an entire out-of-state conference adjusting the thyroid medications followed by the Tamoxifen, and trying to deal with symptoms. After several weeks of controlled experimenting, I am forced to the conclusion that the Tamoxifen is causing them, or at least, tripping the trigger that causes them.  So, I've stopped, for now.

This illustrates how tamoxifen settles into the estrogen receptor that feeds a breast cancer cell, and blocks estrogen from feeding the cancer cell,  so it dies.
The Tamoxifen Mechanism
My oncologist is firm about me wanting to restart, however. My geneticist says that my likelihood of avoiding a recurrence (remember, a recurrence now will put me in stage IV) increases by 50%.  I enjoyed that wellness feeling, and having better hair and nails.

So here's my humble theory of what's happening:

Most thyroid doctors (endocrinologists) prescribe only one medication for thyroid hormone replacement: T4, known by the brand names Synthroid or Levoxyl. It is believed that the body then sends that medication through a series of transformations, so the body can make use of it: T4 to T3, 2, 1 and five other hormones, all with a specific function.

Recent research, as well as the voice of millions of patients, suggests that this transformation happens ineffectively in some of us, or not at all. One group strongly promotes a different, older formulation of thyroid meds, made of dessicated pig thyroid, called natural dessicated thyroid (NDT) as more effective. Most doctors, however, either dismiss these concerns and the research, or they add Cytomel, the T3 medication.

I am one of those people who needs it. I feel a strong difference when I add T3 to my regimen. I can't find a doctor willing to suggest the NDT, but I'd welcome the opportunity.

There is also research that suggests that Tamoxifen affects the synthesis of T4 and the way it binds to receptors.  That's what I think was happening to me: It changed the way it binds, so that my hormone cascade happened much more efficiently. That's why I felt well. Eventually, however, I built too much thyroid medication in my system, so I became "hyperthyroid." There are a series of symptoms, but one of them is heart palpitations.

Now, I get to fight a battle to get cross-discipline treatment. I need my oncologist and my endocrinologist to work with each other to find me a solution. They do talk to each other, but this issue is like nothing they've seen before.

Right now, however, my endo is waiting for another test to make a decision: which brings me to my other cancer fun. It's testing time again. Time to dust off my cancer elephant because he's going to make an appearance in my life.

First, there's the thyroid: I've had a couple of suspicious neck lymph nodes show up on tests for the past few years. If they are the same size now, we're good. If they're bigger, that could mean recurrence and surgery. Even if they aren't cancer, I think surgery may be a good idea. Thyroid recurrence is a bit different than BrCA recurrence -- it means more annoying surgery, possible loss of voice or nerves or other side effects, but usually it doesn't mean much more than that. You can spend 20 years chasing thyroid cancer around your body, and die of something else altogether. Still, who wants that ever?

Remember that I have other things to worry about as well. I have a mammogram or (more likely) MRI in my near future, the ultrasound on my neck lymph nodes, and I have to get my oophrectomy soon, everyone agrees.

I was able to put my cancer elephant mostly on the shelf while I went on a wonderful vacation, and for that I'm grateful. I've been refocusing my bid for progress at work.

But time to get back at that hidden life, taming my cancer elephant, managing my life through the worries of testing and treatments. I'll dutifully go for each test or procedure, and I'll watch faces for reactions. (I could have played poker with all of my surgeons, I swear. They all have no bluff faces whatsoever.) I'll have sleep meds at the ready, so that I can keep fighting my progress battle at work, because it's better than panicking, anyway. I will wake up at 5 a.m. anyway, when the batch file with my test results runs and sends a notice to my health app. I'll be unable to resist reading the test findings because I'll have been up all night despite the meds.

I will try to tame the elephant back on the shelf, even though he's really big and wants to annoy me. This is the normal world of a cancer survivor.

Did I mention my mother-in-law is hospice with end stage cancer? It doesn't rain....

Don't forget to share your thoughts here, on Facebook or Inspire.

Saturday, July 25, 2015

It is in the Genes!

DNA and RNA are wonderful things; they tell us so much when we learn how to interpret them. They can tell us where our ancestors came from (in my case, Great Britain and western Europe, with a little Caucuses and Finnish for good measure.)  Or, they can tell us how to approach our cancers, our treatments, and future issues we may face.

Angelina Jolie certainly brought awareness to this diagnostic tool when she went public with her decision to test. Her genetic test showed that she had what's known as the BrCA1 mutation.  The BRCA stands for Breast Cancer, and this is one variation.  She opted to remove her ovaries and have a double mastectomy with reconstruction. She told us about it , explaining that she had watched her family members suffer.  She did not want the same for her.

An illustration from Wikimedia of the BRCA2 gene.

"PBB Protein BRCA2 image"
Licensed under Public Domain via Wikimedia Commons 
I recently had testing as well. I'm guessing this is no surprise: all those cancers! They tested a full panel of different gene mutations that lead to breast cancer, each with a slight variation of what other issues the body is likely to have. Pancreas, kidneys, lung -- all sorts of delights!

Sure enough, I have a mutation known as BrCA2. In my case, part of the tumor suppressor genes that prevent cancers have been deleted. I inherited this mutation from either my mother or father, and all of my first degree female relatives have the same chance: my daughter, my sister, and if she has it, my niece and nephew. My cousins may have the deletion as well.

I stood a 45% chance of developing breast cancer before the age of 70. Adding in estrogen from birth control (for unbelievable cramps, not that it matters), especially at the doses given in the 70s, meant doom for me. I also stand a decent chance of ovarian cancer, and certain other cancer risks. 

But not thyroid. They don't know why I got thyroid cancer. My thryroid cancer was "idiopathic," meaning they don't know why it happened.  I do: treatment for the first cancer I had, plus x-rays, cell phones and other exposures. It was a bucket that just got filled up with everyday radiation and spilled over with cancer. 

Here's my plan for treatment: I am planning to eliminate my ovaries (I'm most certainly not using them) and yes, I'll have that other mastectomy.  I won't have reconstruction.  It just makes no sense; the one side won't heal anyway, and who wants to be lopsided?

By the way, bras and supplies for mastectomy patients are simply the worst. Badly made, too expensive, ugly and, in the case of my supplier, too heavy to be safe for my still healing incision at the time. I won't have that burden any longer.

You might wonder how I'm feeling. I'm at peace. I'm mostly concerned about work, so I may delay the mastectomy for a while.  I'm also struggling about where to go for surgery; I was very unhappy with my repeated incision reopenings and I feel like I hadn't been cared for properly. In addition, the health system I'm in frequently bills me for amounts that my Blue Cross/Blue Sheild Alabama will pay. I'm seriously going broke!

So, more costs for cancer: a trail of body parts. Yes, that's whistling-past-the-graveyard humor.

Saturday, June 27, 2015

It's True: I've Paid Another Cost of Cancer

Well, it really happened.

I had hope that it wouldn't.  It started to sound like it might not.  Then it did.

In February, I wrote an open, honest post about the True Costs of Cancer.  There, I discuss the effects it has on your career. I suggested that I had been like a little girl on an old-fashioned merri-go-round, reaching for that brass ring...the ring that I miss every time. It feels like my cancer ensures I just fall right off the horse altogether.

I wrote, "For many of us, cancer signals the end to our future at work. Work changes for ever. Upward movement goes away. Maybe they keep you, but they put you aside; they want you to phone it in." Something like this has happened every time in the past, and, sure enough, it happened again.

When I first got back, everyone was so sweet, but I could tell something had changed. While I was off, my HR leader called my colleague my team lead. I corrected her, but think about it: she doesn't know my leader from Adam, except for what her system tells her. I was already placed under him, I speculated. In coming back, my eyes and ears did not deceive me. It took them nearly two months, but last week, they let me know they had made a position, and nominated a leader (not me), and that there were no plans to grow my program at present.

I'm no slouch at what I do. I may be among the top in the nation; and I have reason to know...I used to conduct research on folks in my field. I have a great background, experience and education.  I have expressed leadership potential, done everything right. Sorry if that doesn't sound humble. I love to do what I do, and I can really help shape a company's innovation culture with my work. I had passionately pitched for growth in my program, as well as an investment in my leadership. Then, cancer.

You see, they haven't been impressed. I work in an environment where my biggest accomplishments have been attributed to the boys. (It's called "bropriation" by the Lean In Movement. Great name.) Even though I've made the company millions; even though I've been the one to rope in the great research that senior leadership touts, even though I have better training, better qualifications, a better resume...I now get to work for a guy who won't treat me like a human being.

This guy had not been very nice to me for months. I had documented his deliberate social isolation of me, while treating my other teammate in a way-too-overfamiliar manner.  He wouldn't say more than a word at a time to me, and usually it was fairly negative.  My visual documentation on that was great: email message after email message, color-coded to show communication where he was communicative with me (positively or negatively), colored in blue, and those where he grunted at me in red. For four months worth of messages, a sea of red. He would interrupt me in meetings; he would explain everything his way. (They also have a name for those traits: mansplaining and manterrupting.) Although he has improved, to this day, I have a very different relationship with him than others he works with. Great.

To paraphrase Lethal Weapons' Roger Murtaugh, I'm too awesome for this sh*t.

Maybe not all of this was cancer. (Obviously, some of it is being a strong woman in an broculture IT world) but cancer certainly paved the road to my situation.

But I'm a team player. I said my piece, which will not doubt show up in my next review ("She takes things too personally.")  No one else, but you, will know I am unhappy.  I will put on my happy face, I will not phone it in, I will make great things happen. In the words of Chumbawamba: "I get back up again." No one is going to keep me from being as awesome as I should be. Not redolent broculture. Not even cancer.

Sunday, May 17, 2015

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.

Verizon logo
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 broken 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.
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....

Sunday, April 26, 2015

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

A shot of me with my wig on, but no eyelashes.
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. 

Monday, March 30, 2015

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.
My latest chemo log, showing that I'm on the mend.

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.

A pink woodland trillium.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

Thursday, March 19, 2015

The Journey Now, Part 9 -- Last Day

A hand drawn sign that celebrates Today is my Last Chemo.
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.
A photo of me, in a tiara, because NO MO CHEMO!
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 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.
A photo of me in my chemo chair with all decorations for my last chemo.
My last chemo chair: Don't I look regal?

My car, chalked up with messages that today is my last day of chemo.
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,

Monday, March 16, 2015

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 happy to be there! I will rejoin the human race.  

I simply can't wait.

Sunday, March 15, 2015

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.

CDC Measles Facts from their Measles Infographic
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, or Twitter.

Monday, March 9, 2015

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.

An image going up a Roller Coaster, looking to the sky.

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.
An image of the steep downslope of a roller coaster.
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.

Wednesday, March 4, 2015

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 progress chart, indicating higher numbers for the last two rounds of chemo, plus a minor setback on my wound recovery.
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: 

Nurse Ratched: Some people just react differently to chemo, dear.
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.

Saturday, February 21, 2015

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.)
A man worries over his growing bills.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.
Rampaging cancer elephant stomps on dreams and goals.

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?

A girl on a carousel horse reaches for the Brass Ring.
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.

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