Preparation

I have been off my thyroid meds since the day we came back from Mayo, and have replaced them with a short-acting substitute for the time being.  Next week, we'll go cold-turkey and start the plunge into hypothyroidism.  Not necessarily looking forward to that, but hopefully it will be short-lived and not too uncomfortable this time.  I'm a whole lot healthier this time around as compared to last, so it should be better.  I hope it will be better.  I've timed hypothyroidism with a visit to Wyoming to be with my family this time, which doesn't make that trip as pleasant as it could be, but does minimize my time off work.  Currently rushing around, trying to get ready for the low-iodine diet that starts next week, which I will need to follow while on the road, while in Wyoming, while driving from Wyoming to Mayo for treatment, and after I get home and am in isolation for the first several days. This entails eating only food I have prepared from scratch myself, while in hotel rooms with only a microwave at my disposal.  That's a lot of food prep ahead of time, and a lot of logistics to think through. It's stressing me out a bit, but I feel like I'm getting a handle on it.  Friends have been very helpful suggesting recipes, helping me make some food, and offering really helpful tips (like "map out the Whole Foods locations from Chassell to Jackson Hole, and stop there for a salad bar lunch every day".  BRILLIANT.)    So far, I have made from absolute scratch the following items:  4 loaves of bread, homemade tortilla chips, homemade taquitos (including homemade tortilla wraps), a wild rice casserole, homemade salsa, homemade marinara, homemade applesauce, no-bake oatmeal cookies, and corn muffins.  I have pre-cooked organic chicken.   I have purchased vegan, soy-free, salt-free margarine, bought wheat-only pasta, riced cauliflower, lara bars, old fashioned oatmeal, and popcorn kernels.  I will buy all fruits and vegetables (minus strawberries, celery, and cranberries, which are verboeten) right before I go.  That, along with my abundant, already-present fat stores, should keep me alive for two and a half weeks, right??    I know a lot of people eat organic, whole-food diets all the time.  A lot of people cook from absolute scratch every single day, even when travelling on vacation.   My gosh... people cooked from scratch for all of human history up until the last few decades!  This really shouldn't stress me out as much as it is.    It's something different for me, though, and is taking a whole lot of planning, and thinking, and label reading, and shopping in different places, and cooking extra food in between our normal busy activities, so...  an adjustment.  I am adjusting.   But I will not starve.

The other worry on my mind is that I have had a sore throat for the past few months, and my voice is going hoarse, and I am having more trouble swallowing pills.   I just don't know if this stuff I've been experiencing, even before my trip to Mayo, is the laryngopharyngeal reflux I've had in the past rearing it's head again, or cancer invading my laryngeal nerve.  I highly suspect the first case.  But how do I KNOW?  Regardless, treatment is coming soon, and it's a good thing, and I hope it works.  Worst case is a life silent, and there are worse things in the world then silence.

Writing things down helps me immensely.  It puts concrete borders around what's in my head, and helps me to process and prepare and not be overwhelmed.

Game face goes on pretty soon here.  I want to do a good job preparing myself, because I want to be DONE!  Yesterday, the Marshfield doctor called to scheduled follow up appointments in November and December.  So, by December, I will know if this all worked, and if I am done or not.  December = cancer free goal date.

We got this.  Lord willing, we got this.

On Adoration

"In our self-centered culture and classic American emphasis on work, we often feel we have to accomplish something during our times of prayer before the Blessed Sacrament. We rate our experience by how 'good' our prayer was, how heartfelt our devotion was, or how focused we could remain. Yet prayer and contemplation are fundamentally God's work, in which we are invited to participate. We need only to give Him the opening, and He will do the rest. By coming to adoration, we are handing Him the keys to our hearts, allowing the rays of His love and grace to bathe our souls in the light of His Presence, as the rays of the sun bathe our bodies in light. If we can take the time to pull away from the busyness and distractions of life and just sit at His feet, He will lead us."

From the Poor Clares

The Plan

Back from an unexpectedly long week at the Mayo Clinic.  Man, that place is amazing.  We thought we were going just for appointments on Tuesday, but then Dr. Stan said "while you're here, I'd like to do more tests."  So the one day of appointments turned into four.  I had already seen my Marshfield doctor back on April 19th, and at that time, he answered our questions, but essentially deferred all further treatment decisions to Mayo.  And I had no idea what to expect from Mayo.

Well, turns out going to the Mayo clinic was a really, really good idea.   We found out ALOT.  Like, for example, that my right vocal cord is still paralyzed from the original surgery two years ago.  I knew that I get a stridor when I jog and that I still have problems swallowing pills, but... honestly... other than that, I had no idea.  Apparently all the yelling I have done over the past two years has been left vocal cord only!  It's super strong ;).  So, whatever.  That's not a big deal, because I'm obviously very functional in the speaking, breathing and eating departments.  BUT, and this is a very huge BUT... apparently one of the cancerous nodes is lying on the recurrent laryngeal nerve that controls that intact left vocal cord.  So, according to the head and neck surgeon, if we tried to cut that lymph node out, and it was stuck to the nerve, we run the very real risk of leaving me with both vocal cords permanently out of commission.  Which would mean a forever tracheotomy, a feeding tube, and a return to utter silence. Apparently there are no tests that can be done to see if the cancer IS stuck to the nerve.  The only way to find that out is to actually Open up the neck and tug.  Which seems like not a good way to find out important information.   The flip side of that is, if we don't do anything, there's a definitive possibility that the cancer could grow and invade the nerve itself anyway.   So big risks if we do something, big risks if we don't.    The largest cancerous lymph node is located right off my aorta.  The surgeon said that the only way to get to THAT one is crack my chest open, which does not sound appealing to me at all.  The good news, reportedly, with that is that the mediastinum (behind the breast bone) has a lot of spare room, where that node can grow to quite a size without encroaching on anything else, so we could let it be for a good while before the whole chest-cracking scenario has to come into play.

The interventional radiologist, who did my biopsy and would be the one to attempt an ethanol ablation (injecting alcohol into the nodes to kill them... a technique developed and perfected at Mayo and my doctor's original first choice for therapy) called my doctor in the middle of my appointment to say that he did not think that option was a good idea.  Apparently, two of three lymph nodes are way too deep in my neck/chest to reach with a needle. He could potentially reach the first one, but... again, it's sitting on that crucial nerve and who knows what would happen if we tried the procedure that close to the nerve.  He didn't think that was worth the risk, and I certainly don't either.  Not for a 1 of 3 ablation that wouldn't get rid of all the cancerous nodes anyway.

Some encouraging things we found out with testing, however, included the fact that my tumor marker inexplicably plummeted from 13.2 two weeks ago to 3.2.  It has NEVER been this low!!  WOOT WOOT!  Dr. Stan cautioned us about putting too much stock in that number, though, because we're comparing two entirely different labs, with different assays and techniques.  Whatever that means.  I wanted to celebrate my new low tumor marker, but he didn't quite let us do that, because we now know where the ACTUAL cancer is, and how big it is, so we don't need indirect methods telling us differently.  The other encouraging bit of news came from a radiologist, who compared my recent PET/CT with my whole body scan and my old CT scans, and determined that these mets haven't grown that much in a year.  GOOD.  They are slow growing, and that's reassuring.

So, that leaves our choices as A) watch/wait and do nothing until things get big enough that surgery and/or ethanol ablation is worth the risks they present or B) try radioiodine again.  Apparently, surgery usually has a cure rate of about 90%-95%.  Ethanol ablation has a cure rate of about 84%.  A second round of radiation has a cure rate of about 34%.  And it doesn't typically work all that well on lymph nodes, which is why the doctor didn't initially present it as an option, and why they don't do it very much anymore.  In my mind, though, 34% is better than the 0% of doing nothing.  There are few risks associated with a second round of radioiodine.  Dr. Stan said that if I chose to do nothing at this point, he would insist I come back every few months to monitor the status of those lymph nodes, so that we could catch any danger before I lost my vocal cord.  Driving 14 hours round trip every few months didn't sound appealing either.  So, ding ding ding.  Radioiodine it is.  Even though he told me not to be overly optimistic about outcome; that it might work completely, buy us a few years by halting growth, or not work at all.  It's doing something rather than nothing, the risks are minimal.  I said "go for it".  So we're going for it.  Six weeks to prepare, so D-day is June 14th.

Throughout this week, I've honestly been pretty numb.  At first, my reaction disturbed me.  These experts were telling me some pretty daunting things, and I just sat there and nodded and asked appropriate questions, and then... went out to dinner with my husband, or went to TJ Maxx, or worked on my computer back at the hotel room.  I didn't think much about it, honestly.  I legitimately asked myself if I was NORMAL or not, to be so seemingly unconcerned about it all.  Every doctor, every nurse, every technician I met was super kind, super gentle, and very compassionate about the "c" word.  They didn't sugar coat anything (THANK YOU), but they all said things like "I know this is hard to hear..." or "maybe your pulse is up because we're talking about cancer".  I think that actually, though, I just haven't processed any of it.  It's all just pure information that I'm taking in. It doesn't seem REAL.

One thing did occur to me tonight, as I was praying in the quiet church during Adoration.  The low tumor marker number.  I think it was a sign.  Over the past 15 months, my TG has done nothing but rise and rise, at first slowly, then a big jump.  I think that was God warning me.  "Look closer!  Get a second opinion!  Go somewhere else!"  And as soon as I DID go somewhere else, as soon.as I was where I really needed to be..... the number dropped.  ALOT.   I'm taking that as "you are now where you need to be, doing what you need to do."  I feel like God was trying to get my attention, and it just took me awhile to figure out the message and follow it.  He's watching out for me, always and still.  I just need to pay attention.

I trust You, Lord.  Thank you.

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.

Another thought for the day... Again, just what I need to hear.

"Pray, hope and don't worry. Anxiety doesn't help at all. Our Merciful Lord will listen to your prayer."

— Saint Padre Pio

Verse of the day....

.... which is just what I needed to hear.

"Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from your Father. And even the hairs of your head are all counted. So do not be afraid; you are of more value than many sparrows."

Matthew 10:29-31

Pre-Test Jitters

Tomorrow, we will leave for Wisconsin, and I will begin preparing for my whole body PET/CT scans, which are scheduled for Friday.  This feels like SOMETHING to me - even though it's just a test.  I've been reading the scientific literature and the support boards, non-stop.  It feels like this test will probably give us answers that I've been asking for two years.  WHERE ARE YOU, CANCER??
As I do, I have played out every scenario in my mind.  There are three potential results from this test, and I have mentally prepared myself to hear any of them, so that I'm not taken off-guard.  It's how I've managed all of this thus far - prepare for the worst, and you can only be pleasantly surprised by good news (or at least not shocked by the bad news).  Mostly, it works.  But it's still a nerve-wracking mental exercise.

Scenario 1:  PET scan and/or CT scan picks up metastasis to lymph nodes in my neck.  To me, this is the best possible outcome, although it doesn't seem so on first glance.  Metastasis to the cervical lymph nodes are common in my type of cancer, and don't generally change prognosis.  They are usually easily excised with a neck dissection (that term sounds TERRIBLE).  If cancer is in the lymph nodes, they can be removed and cancer is GONE.  This is usually followed in most centers by another round of radioactive iodine.  But this is a path to CURE.  And has a definitive protocol, an action plan.  So in my mind, if this stuff insists on being here this long after my first treatment... I'd like it to show itself in an easily accessible way, so it can be conquered.

Scenario 2:  PET scan and CT scan shows nothing.    This is the result I fear is most likely to happen, and I dread it because it continues the unknown.  If these scans are negative, it doesn't mean that cancer is not there. The tumor marker says otherwise, so we know it's there.  A negative PET/CT means that we still can't FIND it, and that does not give us a target to attack.  This result means that there's more interminable "watching and waiting".  This result means status quo and inaction, and uncertainty.  I've been in that place for two years now.  I don't want to be here any more.  So, if this is the result, I've decided to seek a second opinion at Mayo Clinic, and get fresh eyes, and a fresh perspective on everything, by some of the best clinicians in the nation.  At least I will have a plan in the event of scenario 2.  Second opinion.

Scenario 3:  PET scan and/or CT scan shows metastasis anywhere outside a lymph node in the neck, or anywhere outside the neck.  This is the worst news result, the one that we absolutely don't want.  This is the scenario where prognosis takes a steep plunge in the downward direction, and treatment gets a whole lot harder than a little surgery and staying in my room isolated for a week.  Depending on location, such a tumor may or may not be a surgical candidate.  This is where external beam radiation for weeks on end and clinical trials come in to play.  This is where I would definitively transfer my care to Mayo Clinic, and put on my battle gear.  But I'm not going to dwell on scenario 3, because... I don't want to.  I'm staying positive.  And the other two scenarios are far more likely anyway.  We'll deal with scenario 3 if it comes, but I will not live there.

I am NOT dying (at least … not any more than any of us are marching towards our end), but I have been thinking about my death lately.  Maybe that's inevitable with all of this.  I have prayed for a happy death one day, with my family by my side.  And I am not afraid to die.   So I can honestly say "Lord, thy will be done".  I do not want to leave my children before my work with them is through, and I do not think that the Lord will ask that of me.   But if He DOES... thy will be done.   None of us are guaranteed anything in this life. This place is temporary for 100% of us.  So there is peace with that.

Prayers are appreciated, and actively sought.

Ponderings

Part of my Lenten disciplines has been cutting back on my excessive Facebook time and replacing it with podcasts. I’ve discovered some fabulous ones, and the kids and I have been enjoying listening on the drive to and from school, and while I’m at home doing the daily drudge. One of the most recent podcasts we listened to was the conversion story of an Iranian atheist to Catholicism. And something he said has stuck with me ever since. When asked about how he came to understand the role of Mary in the church, he said the following. “Catholicism is about Jesus. Not belief in Jesus, but Jesus himself. It’s not a set of ideas, it’s  a person. And a person has a mother”. 

This, for me, bore down to the crux of a lot of issues. When we dig deep, when we get past theories and beliefs and ideas... we find Christ. The divine man. The bridge between heaven and earth. God in the flesh. Not in the “I don’t need religion because I’ve got a relationship” kind of way. But in a gritty, real, concrete, “this is a man who lived in history” kind of way. He is REAL.  And all truth stems from that fact. And a man has a mother. And a family. Enter the communion of saints, that cast of characters that my husband initially struggled so hard to understand at first as well.

Lent is such a spiritual reset button. How I need it every year.

"I worry some of you still have not really met Jesus—one to one—you and Jesus alone. We may spend time in the chapel—but have you seen with the eyes of your soul how He looks at you with love? Do you really know the living Jesus—not from books but from being with Him in your heart? Have you heard the loving words He speaks to you? Ask for the grace; He is longing to give it. Until you can hear Jesus in the silence of your own heart, you will not be able to hear Him saying 'I Thirst' in the hearts of the poor. Never give up this daily intimate contact with Jesus as the real living person—not just the idea."

— Saint Mother Teresa

Verse of the Day: Again with the importance of ACTION, and living out our faith

"For it is not the hearers of the law who are righteous in God’s sight, but the doers of the law who will be justified."

Romans 2:13 

Paul says "JUSTIFIED".  Not sanctified, although that can certainly happen, too.  And not that the doer of the law justifies HIMSELF, but that, because they are seen as righteous, GOD justifies them.  We are the receiver of the gift, certainly, but have an active role.   Just realized how these two terms, justified and sanctified,  fit into my "smelter" analogy perfectly.  In the all-consuming fire of God's love, the justification is the transformation of the mere creation/human into the divine nature of Christ.. or in my analogy, from a dead tree branch into  the finest gold.  The sanctification is the process by which imperfections and impurities are burnt away, and we are left perfect and holy, and ready to stand in the presence of a perfect and holy God.  Sanctification, then, cannot CAUSE justification.  No matter how "good" you are, without Christ's life within you, you can peel away the bark on your dead tree branch all you want, and you won't find gold there.   But those justified are those who DO the law.  God chooses those who are willing and open to Him.  

A lot to think about on a snowy Monday morning.

Status Update at 26 months

Most recent round of test results came back yesterday during parent teacher conferences- which didn’t make for the most private of medical phone conversations, but it was what it was. Bottom line, TSH remained stable at .08, which is fully suppressed and means we’re still starving the remining cancer. However, this cancer must have the same metabolism as I do, in that, despite starving it as much as we can, it STILL gets bigger!  Quite a bit bigger, actually. TG tumor narker rose from 5.1 to 8.3. It has been slowly creeping up over the past year, and I had already decided I wasn’t comfortable with the slow creep (see my New Years resolution post) but this big jump just kinda confirmed things for me. Enough is enough. Initially, the nurse on the phone was a little hesitant to give me the number. When she finally told me, I was like “wow!  That’s kind of a jump there!”  She agreed and said in an unsure way “I guess we’ll keep monitoring it for now”.   No.  Not ok.  That’s when I told her in that I was no longer comfortable with “monitoring” and I felt it was time to do some more thorough imaging to find this stuff. She sounded almost relieved, and agreed with me immediately. “The doctor’s still here in his office. Hang on while I go talk to him”.   So she left me there on hold, in the middle of the high school hallway waiting to talk to the Spanish teacher for parent teacher conferences, and went to go hash out my future with the doctor.

Bottom line:  we’ll do another whole body scan, a PET scan, and a CT scan as soon as it can be approved by my insurance and set up. It’s a little tricky, since I live in the middle of nowhere. The scan entails going once again on a low iodine diet for two weeks, then going to Wisconsin for a shot, spending the night, getting a radioactive pill the next day, then coming back three days later for the scan. The shot alone is reportedly $2000, so insurance is pretty important here.  Sounds like I will miss most of a week of work just getting a single scan, which wouldn’t be the case if I lived closer. The goal of the Thyrogen shot is to increase my suppressed TSH from .08 to over 30 in a matter of days, before taking another radiodine pill. That’s a big change, and will probably make me feel pretty crummy, like I did before radiation. But it’s better than going off my thyroid meds for 6-8 weeks like I did before, so I can handle it. It is essentially the same preparation as I did Radioiodine ablation two years ago,  just the sped-up version. And I won’t be nearly as radioactive this time;).

Anyways.  That’s where we’re at. As much as I don’t like the big jump in tumor marker, it does feel good to do SOMETHING, to feel a little on the offensive, rather than just sitting back and watching the cancer grow.  If we can find the dang stuff, we will schedule surgery to cut it out. That’s a path forward that could potentially lead to an END and that’s what I want.

Dear Lord, I pray that Your will be done in all things, but You know the desire of my heart. Please grant wisdom to my doctors, accuracy for the tests, and a clear path to follow towards healing. Through it all, I ask for continued peace, found only in resting and trusting in You. Thank you Lord.

Amen.

A Very Apt Analogy

"Prayer and fasting, worship and adoration, Scripture and sacraments and sacramentals all provide the weapons of our spiritual warfare. With them we go on the offensive against the Evil One. But the virtues provide our defense armor. As Blessed Pope Paul VI once observed, St. Paul ‘used the armor of a soldier as a symbol for the virtues that can make a Christian invulnerable.’ They are our best defense against his attacks, for they guard our minds and hearts from his deceptions and temptations. A lapse in virtue is in fact a chink in our armor that makes us vulnerable."

— Paul Thigpen

Another Rant.

OK.  We've got dual narratives running in this country, one that THINKS there is a genocide perpetrated by the President, against minorities, and one that is ACTUALLY HAPPENING to our most innocent and vulnerable American Citizens - children in the womb.  Lord have mercy on America.

I read this article by the BBC and I wanted to scream at the screen.  In particular, I was mortified by this utter lack of logic:

In 2016, Erika Christensen was pregnant and living in New York with her husband. The couple were thrilled.

However, at 31 weeks, she found out that her pregnancy was "nonviable", meaning that the baby would not survive outside the womb.

Ms Christensen told the BBC that she "didn't know about the law" banning abortion in New York beyond 24 weeks.

"We wanted to end the suffering of this child. It was a simple choice."

After doing some research she realised she would have to leave the state to terminate her pregnancy.

She borrowed $10,000 (£7,600) from her mum, and flew halfway across the country to have an abortion in Colorado. 

HELLO!!  "END THE SUFFERING OF THE CHILD" by ripping it limb from limb in utero????  Crushing it's skull and evacuating it's brains??? Rather than let a child peacefully and safely develop in it's mother's womb, be delivered, and then die in the loving embrace of it's family, they chose to end this child's "suffering" by the most violent form of death imaginable.  ARE YOU KIDDING ME?  Somehow this family has convinced itself that this brutal murder is "kind"????  What kind of warped thinking is this??  

I had a student physical therapist once tell me that aborting children with Down's syndrome was the kind thing to do, to end their suffering.  I FLIPPED OUT ON HER.  I looked that girl directly in the eyes, and was not so professional about saying "That is a lie, and if I ever hear you say that again, you are done with your clinical with me.  We work with these kids every day, and if you think they are better off dead then leading their happy, productive lives, you have no business being a pediatric therapist."  MURDER IS NOT KIND.  Being different is NOT SUFFERING.   Allowing people whose bodies are dying to peacefully die?  YES.  Allow their bodies to die.  The Christensens could have allowed their child to die peacefully, held in the arms of her parents, loved and let go.  But NO.  They chose instead to violently murder her and call it KIND.  THIS IS A LIE OF THE GREATEST PROPORTIONS.

Should we take a guillotine to every cancer patient?  Is that the kind thing to do??  COME ON PEOPLE.  THINK!  Find your moral compass!  It's been warped and stomped on for so long, but it's there.  

Lord have mercy on us.

Today, we will say rosary in reparation for the evil that is abortion.

ADDENDUM:
I just came back to this after pondering for a few minutes.  WHAT would possess a family with a "nonviable" infant to abort rather than deliver and let the baby die?  That makes no sense at all.  But then it hit me like a ton of bricks.  They weren't afraid that this child was going to die, merely wanting to spare his or her suffering.  If that was the case, they certainly wouldn't have gone through with a late term abortion, which is hideously violent and painful.  That family was afraid that their child was going to LIVE.  That they would deliver, and he or she WOULDN'T die, but be in the hospital, and require medical care, and maybe survive with disabilities.  THAT was what they were afraid of!  Because if that baby lived outside the womb, but imperfectly, it (for now) IS against the law to "get rid" of that child.  THAT is the unstated fact of that scenario, and those parents weren't willing to admit it. It has to be so, because otherwise their choice makes not one shred of logical sense.    The whole thing is so so so chilling to contemplate.

THIS.

"If you become Christ's you will stumble upon wonder upon wonder, and every one of them true."

— St. Brendan of Birr

The State of Our Country. A Rant in favor of logic and common sense.

The world... or maybe just the United States?... is going mad.  Stark-raving, howl at the moon mad.
This is what I want to say to every shrill Facebook post that I see.

Dear Facebook Friends.

CALM DOWN.

THINK LOGICALLY instead of through the lens of fear and doom.

Don't believe even half of what you read or see in the media.  LOOK AROUND YOU.  Do you see a genocide occurring next door?  NO?  Then don't let people in the news media tell you it's happening, because they want you worked up.

The word "racist" is being bandied around, shouted from the roof-tops, hurled at anything that has a different view point.  It's NOT RACIST TO DISAGREE WITH YOU.  It's really, really not.

I get it.  Our president is not your typical politician.  He's a boxer.  He likes the fight.  With words.  With negotiating.  The attention a fight brings. He thrives on all of it.  Every one knew it.  It wasn't like he was an unknown before getting elected.  He didn't come out of nowhere.  He's been on the tv, in our living rooms, for decades.  And you know what?  Americans voted for him anyway.  Some while holding their noses, but it was their vote to make, and those are legitimate votes, too.

When I see the all-out assault on our President, and how it's dividing our country, it makes me sick.  Not because I love Donald Trump.  He's not someone I would want to have over for dinner, or let my daughter date.  But he was voted legitimately by the American people.  If you respect this democratic system of government we've got here... the one that allows for the peaceful transition of power,  has been the most successful form of representative government in history, and an ideal for countless other countries around the world... if you love AMERICA, you will respect the will of the people and stop trying to impeach the man.  You don't like him?  Vote him out next election.  That's how we do things here.  We don't whip up the populace, manufacture conspiracies, pit neighbor against neighbor, friend against friend, family member against family member, obstruct every idea and put government at a standstill.  DO YOU SEE HOW WE ARE BEING MANIPULATED????  YOU are being manipulated.  I am being manipulated.  A pre-established picture is being painted, and the media is looking for snap shots to fit that narrative.  So that YOU get angry and hate the President, hate a stupid HAT (how can you let a silly hat have that much impact on your life? What power you are letting an inanimate object have over you!) and everyone who wears a silly hat.  Give me a break.

Border security is not racism.  Never has been.  Never will be.  Knowing who is coming into and out of a country is imperative for the safety of our citizens, and a right of any sovereign nation on the planet.  I do NOT think every undocumented person is a criminal.  Absolutely not.  The vast majority are seeking a better life for themselves and their family.  I get that.  So we need improvements in the system for them to come legally. THAT needs improving, at the same time as any increase in border security.  We need to stop the cash-cow that is drugs and hedonism in our United States, so that drug cartels go out of business in central and South America, and people don't NEED to come to the US for safety and a stable life. If central and south America were economically and politically stable, we would not be in this predicament.    Our own selfishness is a big part of the problem.  Make no mistake about that.  There's  no curing our immigration problem without a multi-prong approach:  border security, legal immigration reform, and a decrease in our own drug problem.  I guarantee they go hand in hand.

The other thing I see, on both sides, is GENERALIZATIONS and ASSUMPTIONS.  If you wear a red hat, you are racist, xenophobic, entitled, and misogynistic.  If you are anti-Trump, you are a "libtard".  Again, I beg each one of you.  Look at your neighbors.  Look at your friends.  Chances are, we all think and vote differently.  And yet, on a personal level, we like each other.  The anonymous "them" are fine to vilify.  It's easy when they're only a name and profile picture on social media.  But in REAL LIFE, these are the people of your community.  Things that people would never say in real life, face to face with another person, are said all the time on social media.  Because it's removed from the social interaction.  It's too easy to make those that disagree with me anonymous and less than human.  To paint with broad strokes. To be uncivil. To make others a caricature.  Look around you in real life.  What is REAL?  Who is REAL?

I am desperate for the end of this manufactured, manipulated war.   I pray that people will simply turn off the news, block the Facebook posts, spend more time in the real world, relying on their own senses, their own intellects, rather than being spoon fed everything.  I pray that Americans will start spending more time with people, even those that might think different than them.  Stop with the name calling.  Stop with the assumptions.  Stop with the over-generalizations.  Let's start talking about ideas.

Forget about blue and red.  Let's be Americans. Let's roll up our sleeves and find solutions to the challenges our nation is facing.   Don't let politicians and media moguls separate us.
Let's make our government and the media respond to US, instead of US playing right into their manipulative hands.

end of rant.

New Year's Resolution

I have decided upon two New Year's Resolutions. The first is to start a meal plan, so that this family is eating
 healthy meals each and every day.  The second I decided just this morning.   I am going to attack this stupid
cancer, and no longer "watch and wait".  After consulting some thyroid cancer boards and getting input from
 some very knowledgeable people that have "been there", I am going to request another whole body scan or
a PET scan.  If something lights up, then I am going to request another round of radiation.  If the scans light up,
 it means that the cancer is susceptible to the radiation, which means it's worth doing another round or radiation.
I know my doctor doesn't like to do that because he thinks it's not effective.  But I talked to two people that have
 had it done and it worked for them.  So it may not work in every case, but it's worth a shot.  If my doctor refuses
 my request for more tests, I will seek another opinion.  The people I talked to are going to major centers in New
 York that treat 9000 cases of thyroid cancer a year - and they routinely use a second round of RAI if warranted.
  Given that the cancer obviously keeps growing, I refuse to let it get any bigger.   If it was staying stable, that
would be different.  I would be more comfortable "watching and waiting".  But it's not.  It's actively growing -
albeit slowly.   And I'm not waiting around anymore. 

Decision made.

Going on the attack.

Gonna be CANCER FREE in 2019.

End of rant.