2016: A Really New Year.

Thank God it is 2016.  I am so glad last year is done.  It has been 15 days since surgery, and I'm making some progress:

• They removed the drain after the first week. 
• The stitches were removed the second.
• I feel fewer tears and pulls in my abdomen.
• All of my paths are in.

They were interesting. All of the tissues sampled were benign, including breast, ovaries, tubes, and the polyp on my colon -- all except for the endometrium strips. The report indicated that the sample was too small, but that one tumor marker (p53) was overexpressed, but another tumor marker wasn't present. The pathologist suggested that it be tracked.

No, no, no.

I don't want to track anything else. I want it out. So, I'm not happy. We should have taken the uterus when indicators started to go negative. I will be discussing this with my surgeon next week. The uterus has got to go. If he doesn't agree, I'll be getting a second opinion.

I'm going through all of this new drama because of the Tamoxifen. Effin Tamoxifen.

My recovery is going well, I'm happy to report. I'm ready to be all healed, but I still have jangly nerves under my arm and around the incision. I can't push a shopping cart, lift or do things with my abdomen. I can walk, but I can't dance yet. (Did I mention I love to dance?)

I also have to figure out what to do about oncology. My trust is low to zero that there is another treatment solution for me. My bones are too brittle for the other hormonal treatments like Arimidex, and my heart probably won't stand the assault, either.

I think I may be done with everything for a while. I may have to just wait and see what shows up. I just don't think I have any reasonable options left.  My only other choice: to bra and breast form or not?

Let me know what you think, either here, on Inspire.com or Facebook.

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.

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.

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!)

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 bad...so 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 Inspire.com.

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. 

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.

IMPRESSION:

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?

Another magnificent vista off of US 220 in Pennsylvania

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.

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.

Then...  

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....

Then...

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.

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.

Just.So.Done.

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.

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.