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.

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.

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.

"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.

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.

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

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

Ok, Verizon: Do you hear me now?

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

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

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

This was only the beginning of my humiliating journey.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Me, with my wig and no eyelashes.

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

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

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

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

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

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

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

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

The Journey Now: Part 10 -- Maintenance Drugs

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

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

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

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

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

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

• blood clots
• cataracts
• increased risks of certain cancers

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

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

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

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

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

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

Meanwhile, time to start my new normal.

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

The Journey Now, Part 9 -- Last Day

A Sign of the Times

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

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

Because, Tiara!

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

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

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

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

Can't say it enough, right?

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

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

Enjoy life: my new goal.  

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

Love you all,

Josie