Another thought. Stress.

We've had some stress in our lives these days.  The normal stressors, sure, but then... bigger stressors.  Fear.  Unknown.  Health issues.  Relationships.  Stress.  And it's effecting my husband's health, in a very real way.    So, that got me thinking about stress in our lives, and how we handle it.

I was talking to a friend the other day, and she said something profound that stuck with me. We were talking about how overwhelmed we get with stupid things like getting kids to extracurricular activities, and keeping up with housework, and making sure homework is done, and how all of these are very much first world problems and NOTHING in the big scheme of things. And she said “I feel like our bodies are designed to feel stress. It used to be the stress of staying alive, the stress of survival... for all of human history until the last few generations. And now we seek out that stress in other ways because are bodies are programmed for it, even though we don’t need it for survival anymore”. How true this is!  And why are we not aware of it?!  Is this part of what we’re allowing to happen to ourselves as a society?  If we have food and shelter and security, do we then subconsciously feel like our lives depend on how much money we make, or how others see us on social media, or how we look?? Because we’re programmed to think that we have to survive in SOMETHING, and that something is no longer food, shelter, and security? Those in the past knew unmistakably that they were largely helpless against the forces of nature, and that survival depended on our reliance on a holy and protective God.  Now our reliance is on ourselves. 

  I don’t know. All I know is it feels like an ugly attack from the great deceiver to me, and we’re all falling for it.

Just thinking.

Just lying here wondering what has happened to us as a society, as people, as families and community members. How we’ve lost joy, and relationships, and a compass that tells us what’s truly important and what isn’t. Maybe this is judgey of me. Or maybe I’ve idealized the past and it was always like this, but I don’t think so. I feel like, as a society (but even closer to home, as an extended family) we’ve forgotten who we ARE.

I feel like where we live is a little bubble of reality, here in our little corner of the UP. Others outside of this bubble think we’re backwards and behind the times and boring. So be it. To me, it feels like a place that hasn’t forgotten what’s real. Being close to nature grounds a person. I can see how certain people mistake nature itself for almost a deity, how the environment becomes their religion.  They are searching for sacred, and find sacred amongst the water and the trees. They find beauty and peace and quiet where it struggles to take hold in busy metropolises. And they recognize that this is holy. Except, they mistake nature for the end, rather than it being the reflection of the GREAT Beginning and End. But they are closer to truth in my mind than those who run about chasing material things and status and achievement and false youth as so many do. Nature reminds us that there is much that is greater than ourselves, and that we are small in comparison. Our busy society teaches that "me myself and I" are the most important things. It breeds self-centeredness. I am the center of my own world, and only I matter. This is not how it was. But it is now. My community here in the UP is close to nature, and I feel like that has helped to keep us grounded.  Which is besides the point I am making, but true. I digress.

I guess one of the big reasons I’ve been pondering this is that my parents’ 50th anniversary is coming up, and it has been a ginormous struggle for my extended family to simply come together and celebrate that.  Meanwhile,  I’ve been going through 72 years worth of pictures, and it occurred to me that it didn’t always used to be this way. In fact, even two and a half decades ago, we were able to gather in our parents’ back yard and work together to put on a lovely party for their 25th anniversary, filled with friends and family and love. It wasn’t fancy or expensive, because we girls were college students with no money at the time.   But it was fabulous. And we worked together to make that happen for my parents.  What happened to US that we can’t do that now?  Now that we are more mature and have resources?  Why have we forgotten who we were as a family growing up, the joy and love that our parents showered on us from an early age?  Can we no longer see that acknowledging that love is so much more important than where we celebrate it, or what recreational activities are available in the location, or how we’d rather spend our vacation time??   We’ve forgotten who we are. We’ve become distracted by stupid things that we’ve convinced ourselves are of the utmost importance when they are NOT.

Going through these pictures is helping me to remember. Remember that joy and relationships and family and loving one another - that is what is important.

This is rambling and not cohesive. I’m just waking up, and typing this on my iPhone, so forgive its scattered nature. But it’s what I’ve been pondering on this early spring morning and I pray that we remember, as a family, but even more as a society, who we ARE.  Because what is happening in my family I feel is a microcosm if what is happening everywhere in America, as we become more and more self centered and selfish and self absorbed. Paradoxically, the more we focus on ourselves, the less we remember who we ARE, in the grand scheme of things. So sometimes, we need to look back to look forward. Don’t forget our roots and who we used to be.

ADDENDUM:  Just read this by Cardinal Sarah, and it feels like it's saying what I am trying to say, in my awkward way.

" Our contemporaries are convinced that, in order to be free, one must not depend on anybody. There is a tragic error in this. Western people are convinced that receiving is contrary to the dignity of human persons. But civilized man is fundamentally an heir, he receives a history, a culture, a language, a name, a family. This is what distinguishes him from the barbarian. To refuse to be inscribed within a network of dependence, heritage, and filiation condemns us to go back naked into the jungle of a competitive economy left to its own devices. Because he refuses to acknowledge himself as an heir, man is condemned to the hell of liberal globalization in which individual interests confront one another without any law to govern them besides profit at any price".

What Happened Before It All

I've detailed this journey from the time of my thyroidectomy forward, but I've never written down what happened BEFORE surgery... how we got to that point.  The story doesn't yet have an ending, but I realize now that it doesn't have a beginning either, so I might as well document that, too.

Mother's Day, 2015:  The beginning.
It wasn't a big deal, really.  I was sitting at the dining room table, reading a blog on the computer, and I put my hand to my throat to rest my head.  My left hand, cradling my neck, and holding up my jaw.  That was it.

I felt a lump.  Not a bump.  But like a big, swollen, hard lump in the right side of my neck, several inches long, and a few inches wide.  Which was weird, and something I had never noticed before.  What was this?    I went into the bathroom, where my husband was in the shower.  I looked in the mirror, and now I could see it plainly.  Why had I not noticed the enormous lump on the front of my neck before?  I asked Rob in the shower (he was thrilled to be interrupted) if he could see it.  "No.  It's in your head."  I grabbed his hand and put it on the lump.  Feel that?  I remember that he said "I don't know what I'm supposed to be feeling here."  That big lump! Right in the front of my neck, on the right hand side, resting against my windpipe!  It's definitely there.  He shrugged, and told me that it kind of grossed him out.  He didn't want to be feeling any lumps.   Weird.

Mother's day was on a Sunday, and later that week, I decided to make an appointment with my doctor to check things out.  Which again, is an unusual move for me, since I despise going to the doctor, and rarely go if I can help it.  My doctor was a lovely lady, and very kind... but I still didn't like going to see her.  I hadn't been to the doctor in three years, since the year of my 40th birthday.  But, given that my Dad had had thyroid cancer, I thought it a good idea to check out this lump on my neck.  And that's what I told her.  "I'm sure it's nothing, but my Dad had thyroid cancer, so I thought I would have you check it out, just to be on the safe side."  And my doctor felt the lump that my husband couldn't, and ordered an ultrasound.

The ultrasound found an enormous, 3 cm x 3 cm x 4.2 cm "solid lesion with heterogenous pattern and vascularity" on the right lobe of the thyroid, and three smaller but solid nodules on the left lobe.  The radiologist recommended a fine needle aspiration biopsy of the largest lesion, to rule out cancer.   That wasn't the news I wanted to hear.  But by all means, please stick a needle in my throat, and find out whether or not I DO have cancer, because that's a pretty important thing to know!

In the meantime, and I swear this is true but no one but my primary care physician ever believed me... it felt like that stinking thing was getting bigger.  And I began have troubles swallowing - like something was stuck in my throat.  I remember when I went in for the biopsy, I asked the radiologist that question... "can this thing interfere with my swallow?  Because something is making it hard to swallow."  And I told him that it honestly felt like it was getting BIGGER.  "These things don't grow that fast" he told me.  But it sure felt  like it.  And it wasn't just in my head.

The biopsy is kind of a gruesome process, whereby the pathologist does an ultrasound of the neck, locates the target, and then repeatedly stabs a needle into the throat.  Like 6-8 times in a row.  Stab stab stab.  Luckily, I have a high pain tolerance, because the thought of being stabbed in the throat is kind of freaky.   Waiting for the pathology report after the fine needle aspiration was painful and seemed to take forever.  WHY does it take so long to look at a slide of cells????  One benefit to working at the hospital, though, is that you get to know people.  And I just happened to know the reading pathologist, Dr. Kotov.  He was someone I had interacted with on many occasions, and when he saw my name on the sample that came through, he called me directly with the results.

"Who did your FNA?" I remember him asking.  I told him the doctor's name.  "Well, I hate to say this, but he's not good at doing these things.  There were so few cells in the specimen that it's essentially non-diagnostic.  But I'm sure you probably don't have cancer."  UHHHH.  What was I supposed to do with THAT information???  I made another appointment with my primary care physician, to discuss next steps.

Meanwhile, my swallowing continued to worsen, and I would have trouble breathing on occasion.  Plus, I began having a chronically sore throat. WAS the stupid thing getting bigger?  Because I was feeling worse and worse!  I brought all this up to my primary care doctor, who blessedly listened to me, rather than assuming everything was in my head.  She sent me to another ultrasound, and scheduled at CT scan.  Apparently, the thing had NOT grown like I feared, but it was pushing against my esophagus and trachea, displacing them laterally. And my thyroid, which was supposed to be just in the front of my neck, was firmly resting on my spine.  So yes.  That might cause a few symptoms.  She agreed to send me to the Marshfield Clinic to see an endocrinologist for follow up, but it would take a few months before I could get in.

Fast forward to July of 2015.  I drove to Marshfield, WI to meet with the endocrinologist.  He looked at my ultrasound, looked at my CT scan, looked at my lab results, and determined from this that I was "fine", and that I could not be having any problems swallowing or breathing, because... my thyroid hormone levels were normal.   But I WAS having problems swallowing and breathing, regardless of hormone levels.  By this time, I had trouble even talking without coughing, and my throat was killing me.   In 30 seconds, he had concluded that, although I had a big goiter, it was probably nothing, not nearly as big as some he had seen, and essentially told me to go about my life, and deal with it.   After 2 minutes, he got up to dismiss me.  And I got MAD.  "I just waited two months to get in to see you, and four hours one way to get here.  I am telling you that I have a chronically sore throat, am choking on food, and am miserable.  It HAS to be because of this golf ball in my neck pressing against those structures.  You need to DO SOMETHING."  He looked at me for a second, and said "well, your biopsy was inconclusive.  I could retest that."  YES, I told him.  Do THAT.  At least that's something to make my drive here worthwhile.  So, I laid down, and he did some more stab stab stabbing into my throat.

Later in July, we took a trip out west to visit my family.  I remember that I was miserable all the way there.  My throat was so chronically sore, I was literally guzzling Pepto Bismal the entire day, just to coat my throat.  I would choke when I ate.  I could only tolerate eating soft stuff.  It was NOT fun at all.  While there, I did get a call from Marshfield Clinic that my biopsy results came back negative for cancer, and that was good news.  But what the heck was this sore throat from, then??? WHY was I having trouble swallowing?

My best friend from childhood, Rene, worked for an ENT.  How fortuitous was that?  A GOOD ENT who actually listened to her patients, and Rene got me an appointment with her ASAP.  The moment I started talking, she began nodding her head.  She knew what was happening, but wanted to do a scope to make sure.  So she numbed my nostrils and throat, and stuck a camera down my nose to catch a glimpse.  Sure enough, my esophagus was red, irritated and swollen.  She quickly diagnosed "silent GERD".  Apparently, the goiter was pushing on the esophagus, causing the sphincter that closes off the stomach to not close all the way.  And acid was rushing up to the back of my throat, even though I felt absolutely no stomach pain whatsoever.  My misery was due to reflux.  And reflux is treatable!  She put me on reflux medication immediately, and within hours I was starting to feel better.  THANK GOODNESS.

My primary doctor had referred me to a local ENT to monitor my goiter at regular intervals.  I was still having periodic problems with swallowing, but things were largely under control, and I felt much better about having a big lumpy neck.  I had one major episode of reflux in April of 2016, so bad that I ended up in the emergency room and could not eat anything but white rice for an entire month, but that eventually got better.  So I let things go for over a year.  At my one year ultrasound follow up, the local ENT told me that whenever I wanted, he would take the goiter out for me.  Things seemed relatively stable - no rush or big deal.  But if it got to be a problem, say the word... he'd take it out.  This was in July of 2016.  And I thought about it, and thought I'd probably be fine leaving it in, but then he said something else.  He said "you know, we didn't biopsy all those nodules, and you've got a lot of them in there.  If it was my wife with a multinodular goiter like that, and a family history of thyroid cancer... I'd take it out, just to be safe."  That got me thinking.  Hmmmm.

My primary doctor left her practice sometime around this time, and I found a new primary, who I liked just as well.  I asked for her opinion as to whether I should have the goiter removed .  I mean... why mess with my metabolism hormones if I didn't have to?  I had heard horror stories of people having a hard time adjusting levels after a thyroidectomy, and gaining all kinds of weight (superficial, shallow me).  I did NOT want to get fat, if I could control this thing through medication and not have to go through surgery.  The thought of having to take synthetic thyroid hormone for the rest of my life was also concerning.  My thyroid was working just fine... it was just enormous and really lumpy.  But she assured me that most people do really well after a total thyroidectomy, have no problems at all adjusting their levels afterward, and some even felt better.  This was true... I had a girlfriend who had had a thyroidectomy a few years earlier, and she insisted that she felt light years better afterwards, and told me not to be afraid.  OK.  Well then.  I scheduled the surgery for December, at a time when it would be convenient for my work schedule, and so my parents would come for Christmas ;).  No rush.  No big deal.  Just time to deal with a chronically annoying problem.

What happened next, I've documented thoroughly throughout this blog, starting here.

One thing I've realized repeatedly in hind-sight.  If that right lobe nodule had not been SO big, and SO annoying, causing SO many problems... I would've never had surgery to remove my thyroid.  And if I hadn't ever had surgery, they would've never found out that I actually DID have thyroid cancer… but not in that big right nodule they were all worried about.  The cancer was in those smaller nodules in the left lobe.  The side they never bothered to biopsy.  And as much as a roller coaster as it has been these past two years, I can't imagine how horrible things would be at this moment if we never HAD discovered the cancer.  Even after surgery and radiation, and suppression... this stuff has spread and thrived.  Can you imagine what a heyday it would've had if we hadn't been fighting AT ALL in the subsequent years?  I feel that annoying right nodule and the sore throat it caused me pretty much saved my life.  Which is pretty humbling to think about.  I don't for a minute feel that that was an accident.

Thank you, Lord, for annoying lumps and sore throats.

So there's the beginning of the saga, in my typical, over-wordy fashion.  Documented for posterity.

I'm ready to write the end of the saga.   More than ready!

Partial Test Results

Heard from the doctor's office this morning.  Leanne, my favorite nurse, is awesome.  "You're in your car?  You're not driving are you?"  No, Leanne.  I am in my car, but I wasn't driving.  I was sitting in the driver's seat with a pen and paper at the ready, because... these are important results.  Give it to me.

She, again, was very hesitant and careful about what she said, which raised my antenna.  Before giving my results she said "you said you were going to request your own copy of the report.  Have you done that yet?"  Yes, I told her.  I'd requested but hadn't received it yet.   That's a weird question.  "OK.  Because you know, you're going to see things on there.  And the doctor really wants to explain it to you in person.  He wants you to come for a 40 minute appointment as soon as we can get you in."  OK.  That also does not bode well.  What did the report say???  "Well," she continued, "we know that three lymph nodes lit up on the scan.  He doesn't think these are surgical candidates.  And all the other stuff on the report... he wants to talk to you in person about that."  Other stuff?  "It's very technical and detailed.  So... he just wants to make sure he's available in case you have questions.  And he'd like to refer you to the Mayo Clinic."  OK.  I had already decided that the Mayo Clinic was most likely in my future, but since he was suggesting it... that's a for sure thing.

Bottom line, my tumor marker TG, when stimulated by those Thyrogen shots (TSH rose to 167 from .08... it did it's job well!), rose from 8.1 to 28.  Given that one unit of stimulated TG = approximately 1 gram of cancer, and a whole thyroid is about 20 grams, we can surmise that there's  now more cancer in there somewhere than the whole of my thyroid to begin with.  And the report with the details of the "other stuff"  has yet to arrive from medical records, but I'm guessing that three little lymph nodes do not contain 28 grams of cancer.  Scenario #3 may be in play, but I'm not going to go there until I see it in the report, and talk to the doctor.

For now, next step is more blood work next week, and then meet with Dr. Sheehan on Good Friday (the most sorrowful day of the year????  Let's hope that's not an omen of bad news either!).  And let's hope medical records gets off their tookis' and get that report to me pronto!

ADDENDUM:  FINALLY, after three phone calls, and on the third day of me pestering them, medical records sent me the PET/CT report.  Seeing things in black and white is so much better than imagining all the terrible scenarios that it could be.   The report said that there were mets to three small nodes in my neck:  one beside my trachea, one on my esophagus, and one behind my carotid artery.  Location explains why these might not be surgical candidates... the risk of cutting them out is too great.  The "other stuff"?  Apparently that nodule in my lung, the one we've known about since March of 2017,  but after two CT scans they thought must be benign, well... it grew.  Not a ton in the past two years, but it went from 5 mm to 8 mm.  So they can't rule out that it's metastasis to the lungs, because a benign nodule wouldn't grow.  Don't know where all of this leaves us, treatment wise.  It's possible we're entering "watch and wait" mode again, since surgery isn't an immediate option.  Or maybe more radioiodine?  External beam radiation?  I really don't know.  Thus, we will meet with my doctor to discuss options, and then go to Mayo, to see what they think, too.

So for now, the relief of just knowing what I'm dealing with has brought some sembelance of peace, and a plan of action (even if the plan is to meet to come up with a plan).

Moving on.