Status Update, 2 months post treatment

I was so hopeful after radiodiodine therapy in June, and I still am.  I still have all kinds of hope that this journey is over (we'll find out in October), BUT... I'm starting to feel the effects of that treatment now two months later, that I didn't feel at first.  I was feeling SO GOOD initially, and it was so wonderful.  I felt NORMAL.  That's something that should never be taken for granted, that feeling NORMAL.  For the past few weeks, though, I've been feeling super tired, and bloated. I've gained a ton of weight, even though my eating habits haven't changed.   I haven't had a period in 3 months.  My body "zings" when I wake up in the middle of the night...oh, and I'm waking up in the middle of the night, every night.  I'm getting right flank pain.  I'm an air head, and have a hard time motivating myself and concentrating on things.  I'm stiff and walking around like a 90 year old woman. I have to hold on to the railing to do stairs, or do them one at a time.  That's ridiculous.   I get short of breath after doing very little work.  And I have been super queasy/nauseous, which has caused me to lose hours at work, and that's not good.  So general BLAH.  Malaise.  I just feel incredibly OLD.  And I am NOT OLD, dang it!!

So, I made an appointment with a gynecologist, as I suspected that the old hormones were out of whack.  And yes.  They are.  Again, therapy stunned my ovaries, and pushed me back into "post-menopausal" numbers, meaning they are not working AT ALL (FSH 40.4, Estradiol 15).   I figured as much, given what happened after the last treatment.  Last time, after about a year, my ovaries started coming slowly back to life, in a sputtering, half hearted manner.  We'll see if they decide to wake up again eventually this time, or if they've just given up for good.    So that explains some of my symptoms.  But last time when this happened, I didn't throw up or feel so queasy, and I didn't have right flank pain.  I didn't feel quite so weak or jittery, either.

Labs came back with a TSH of .02.  We want that number low, to starve the cancer, but WHOA.  It's supposed to be below .1, and at the start of 2019 I was running around .07.  Now we're getting pretty dang close to zero.  That could certainly cause some symptoms, too.  The disturbing thing about my lab values, at least in my mind, is that my liver function tests are all out of whack, which is probably causing the flank pain and nausea.    Apparently, hyperthyroidism can cause liver damage.  I can't actually get much more hyperthyroid than I currently am, given my super high dose at the moment.

Don't know what all this means, besides something needs adjusting, to make me feel better.  It's such a beautiful summer, I don't want to waste it feeling yucky.

It's all just minor stuff, though, and I'm acutely aware of that.  I'm still abundantly blessed.  An acquaintance's son just got diagnosed with stage three lymphoma, at 18 years old.  He's on his second round of chemo already and has been in and out of the hospital this entire summer.   And the son of a friend of Rob's  just died of cancer as well.  These kids getting cancer.  It's not right.  They have to deal with far more than I do.   I don't want to "navel gaze" or perseverate on my stuff, because it is such an easier battle than what others are going through.  Mine's not terminal, or life-consuming. It's just annoying.  So, I'm not complaining, just documenting.  It needs to go away already, and I think it has.  Now I just need to feel back to normal, and we'll be all good.

For The Record

The family and I went camping this weekend... the first time in years.  It was not planned, it just happened at the last minute.  The weather was gorgeous, the water was gorgeous, and after much complaining by the teenaged set on the way there - we had a fabulous time.  Just tons of happy family memories, and it was awesome.  No devices.  No tv.  We spent a glorious day and evening enjoying each other's company and the beauty of God's good earth.  I couldn't help myself, I had to take pictures.

The rest of the family got irritated by this.
"Mom!  Stop taking pictures and just enjoy the moment!"
"You're going to put this all on your 'quirky blog'."
The ribbing started edging towards mockery, and my feelings were getting hurt.

Do you know WHY I take so many pictures, family????
They guessed that it was to show the world what we're up to. To brag about a happy family. To present an image to the world.   NO. NO. NO.  Their answers made my heart hurt.

I will tell you why I take so many pictures, why I blog.

Dementia runs in my family.  My poor grandfather couldn't remember anything, and kept a pencil and notepad on him at all times to remember people's names, important things that happened to him.

My own father's memory is starting to fail.  I see it and it scares me.

I know I will be the same way.  I know it, because I feel it already.  And I don't want to forget.  I don't want to forget this beautiful, blessed life I've been granted, and I don't want to forget the happy memories.  I want to remember my family as it is RIGHT NOW.  So I document it.  It's my external memory, because I fear my internal memory will fail me.  It already has.

So I capture it as much as I can.  So I don't forget.  If I take a picture of it, if I write about it, if I video tape it.... it doesn't disappear.  Time is so fleeting, and I feel it passing so quickly.  So much of my own childhood has disappated and is gone forever.  I'm trying to grab on to it, one photo at a time.  To freeze these moments that mean so much to me.

So be patient with your sentimental mom, and smile for the paparazzi, dang it.

The Mini-Miracle

On June 14th, 2019, I returned home from Mayo Clinic, radioactive.  I found my bedroom transformed into a beautiful, peaceful, flower-filled spa room, and heard tales of my friends gathering in prayer to bless the space, and the healing to take place there.    Here are what the daisies looked like on that day:

Well, here it is, over a month later, and you know what???  Here is what those daisies look like after five weeks:

What the WHAT??? 

Cut flowers do NOT last 5 weeks, people.  They just don't.  I'm lucky if I can get something to stay fresh for a week.  

I believe that all that grace that filled my little spa room spilled over onto these daisies.  And THAT is a really good sign.  Obviously my room was filled with life and love!

On Virtue

"Chastity is the most unpopular of the Christian virtues. There is no getting away from it; the Christian rule is, ‘Either marriage, with complete faithfulness to your partner, or else total abstinence.’ Now this is so difficult and so contrary to our instincts, that obviously either Christianity is wrong or our sexual instinct, as it now is, has gone wrong. One or the other. Of course, being a Christian, I think it is the instinct which has gone wrong ... God knows our situation; He will not judge us as if we had no difficulties to overcome. What matters is the sincerity and perseverance of our will to overcome them. Before we can be cured we must want to be cured. Those who really wish for help will get it; but for many modern people even the wish is difficult ... We may, indeed, be sure that perfect chastity—like perfect charity—will not be attained by any merely human efforts. You must ask for God’s help. Even when you have done so, it may seem to you for a long time that no help, or less help than you need, is being given. Never mind. After each failure, ask forgiveness, pick yourself up and try again. Very often what God first helps us towards is not the virtue itself but just this power of always trying again. For however important chastity (or courage, or truthfulness, or any other virtue) may be, this process trains us in habits of the soul which are more important still. It cures our illusions about ourselves and teaches us to depend on God. We learn, on the one hand, that we cannot trust ourselves even in our best moments, and, on the other, that we need not despair even in our worst, for our failures are forgiven. The only fatal thing is to sit down content with anything less than perfection."

C.S. Lewis

Meditation of the Day

"My great God, you know all that is in the universe, because you yourself have made it. It is the very work of your hands. 

You are omniscient, because you are omnicreative. You know each part, however minute, as perfectly as you know the whole. You know mind as perfectly as you know matter. You know the thoughts and purposes of every soul as perfectly as if there were no other soul in the whole of your creation. 

You know me through and through; all my present, past, and future are before you as one whole. You see all those delicate and evanescent motions of my thought which altogether escape myself. You can trace every act, whether deed or thought, to its origin and can follow it into its whole growth and consequences. You know how it will be with me at the end; you have before you that hour when I shall come to you to be judged. 

How awful is the prospect of finding myself in the presence of my judge! Yet, O Lord, I would not that you should not know me. It is my greatest stay to know that you read my heart. Oh, give me more of that openhearted sincerity which I have desired. Keep me ever from being afraid of your eye, from the inward consciousness that I am not honestly trying to please you. 

Teach me to love you more, and then I shall be at peace, without any fear of you at all."

St. John Henry Newman

Jesus Shock

Peter Kreeft is one of my favorite theologians and authors.  I just re-read the book "Jesus Shock" for I think the third time, but the first time in several years.  Needless to say, I got out my little pencil and was underlining EVERYTHING in there.  He is utterly correct.  HOW can we claim to be Christians and go on about our every day lives as if that's no big deal?  If what we're confessing to believe is TRUE, how does that not impact every little thing in our lives?  How can our lives be boring or plain or typical, if this is true????

I have to admit, I am blessed with many friends and family with a sincere faith, and I am incredibly thankful for that.  But I also have to admit feeling frequently like "the crazy one", the one who "takes this religion thing a little too far".  Like it's a hobby I'm obsessed with, and not the reason for existence.  Not that I am any holier than anyone else.  Not that.  Just... if it's TRUE, then why are we not all "the crazy ones?"  If we truly believe what we say we believe, how can we be NORMAL?  Because it is 99.99999999999999% unbelievable, this Christianity thing, and yet, we all claim to accept it like it's not a big deal, when it TOTALLY IS.  And that should generate a whole lot of passion, not platitude.  Not comfort. Not normalcy.   It should be wholly UNCOMFORTABLE, and discombobulating, and off-kilter.  It should change EVERYTHING!  Kreeft gets that.  And revels in it.  And reminds me of this fact, every time I read this book.

Kreeft says something in the book that sticks with me every time I read it.  He talks about how we shouldn't just know about Jesus.  We shouldn't just believe in Jesus.  It's not all theology.  It's not all dogma.  We should know Jesus, body, blood, soul and divinity.  Not just spiritually as "my personal Lord and Savior," although He is that.  But concretely, in the matter in which He gives Himself to us in the Eucharist.  Mind blowing.

GO FORTH, and get thee "Jesus Shock" by Peter Kreeft, fellow kindred spirits! Or borrow mine!
And feel free to make your own little notes in the margins.....

Radioactive

Getting to Rochester was tough tough tough.  It was a long slog, during which time I struggled to stay awake and alert, and the trip took an additional two hours because of stops to sleep, walk around, get a coke, fill up with gas... just anything to not fall asleep at the wheel.  So I was terrified of what Friday would bring, when I would have the same drive time-wise, only in further hypothyroidism, with radiation, and late in the afternoon and into the evening, when I wasn't allowed to stop anywhere public to revitalize.  So, I unabashedly asked for prayers from any and all praying friends and family members.  PLEASE pray for the safe trip home of both my husband from Lansing, where he was at a conference, and myself from Mayo.

I woke up Friday morning with the typical headache and fatigue and swelling and BLAH BLAH BLAH that I'd had for the past two weeks.  Being off meds really isn't fun. It makes me look like this, and I feel just as miserable as I look:

Hypothyroidism is for the birds, let me tell you.  And this is WITH makeup on.  Yamma Hamma.  

ANYWAYS.....

 I was checked out of the hotel by 6:30 am, and was in having a whole body scan by 7:15 am.  By my 10:45 am doctor's appointment, Dr. Stan had all the results ready and waiting (well, I guess HE was 45 minutes late, but the results were there.  I was sure of it!)  He had already physically talked to the nuclear med doctor in person about the scan - not just read a report. He called him up and got his impressions mano y mano. The collaboration and communication in this place blows me away.  I am thoroughly impressed by it.

Six weeks ago, Dr. Stan gave radioiodine a 34% chance of working.  He told me not to get my hopes up, but since surgery and ethanol ablation weren't options, he was willing to try a less viable option if I was.  I was.  Obviously.  Well, yesterday, after seeing my scan and talking to the nuclear med guy, that story all changed.  He said "We couldn't have asked for a better scenario.  Usually things that show up on PET scan don't also show up on radioiodine scan, but these did.  The same spots lit up, which mean they are iodine-avid.  And only the two spots we already knew about lit up.  Which means that we're pretty sure we found all the cancer, and it's treatable with radioiodine.  This should work."  He was actually SMILING as he said it.  SMILING!!  I was like.... WHAT?!?!?!?!?!  He also was very explicit about telling me "These are not life-threatening lesions.  They are vocal-cord threatening lesions".  I already knew that, but it was GOOD TO HEAR in such plain language.  "We're a go for 2 pm today for 75 mci of radioiodine!"

Bottom line.... Dr. Stan was telling me that he thought I was going to be CURED OF CANCER with this treatment.  CURED people.  Not watching.  Not monitoring.  Not controlling or slowing down.  CURED.  After 2.5 years.  After my Marshfield doctor had very explicitly told me that being cured wasn't even a goal of his, he was there to "manage" it.  That it would never go away, because radioiodine didn't work the first time, and the remaining lesions weren't candidates for more conventional therapies.  And here Dr. Stan was, the chair of Thyroid core group of the American Thyroid Association, at one of the top medical facilities in the world, telling me that he was pretty sure he would CURE me, by not following the protocol. By looking at my individual situation and doing what his gut told him best, despite protocol.   I wanted to scream.  Maybe I did?  I'm sure I waited until I was in my car to do that, and not in front of the man himself, but I was ELATED.  OVER THE MOON.  Light me up, buddy.  I'm ready.

He wants to follow up in 4 months time.  I told him that I already had an appointment scheduled with my Marshfield doctor in November - would that suffice?  He paused, looked at me, and said carefully, "well, you know... the ultrasounds you had there were read as clear, and they obviously weren't.  They missed the cancer for two years.  I want to know that this is gone, and I trust our staff here.  Let me make sure the cancer is gone, then you can follow up there all you want."  DEAL.  DEAL. DEAL.  Plus, he wants to make sure that my tumor marker goes down from that horrendous 106 number to Zero.   FINALLY.  So I will be back in October.  Fine.  By.  Me.

It really didn't hit me until I was radioactive and on the way home.  What I haven't had in the past two years, through this entire saga.... what I was lacking...was HOPE.  Hope of a life after, where there was a real possibility of an end.  A way to put it all behind me, and not have it looming.  I was getting really good at pretending it all wasn't there until I had to.  But it was there.  Always in the back of my mind, always wondering about it, always lurking.  I had never allowed myself to hope that it could all go away completely.  I was too busy processing the thought of having to live with it for the rest of my life until either it or something else did me in.  But be rid of it altogether?  I wanted that, but had not allowed myself to believe it was an actual possibility.  So when Dr. Stan smiled and said "this should work"... MAN.  Hope!!!  Such a grand feeling.  I floated all the way home, and did not even get tired once, without the aid of tea or coffee, or Five Hour Energy, or Coke-a-cola, or naps, or stops to get out and walk around.  Nothing.  I floated home on hope and prayers people.  Hope and prayers.

When I walked into my bedroom after the drive, I was greeted by a surprise transformation.  There were flowers everywhere.  Slippers and a robe waiting for me on my bed.  Books and tea, and food in the fridge, and lovely notes, and essential oils with diffusers, and lotions, and soaps, and all kinds of wonderful, thoughtful, kind things!  My friends had broken into my room while I was gone and transformed it into my own private spa, and it was amazing.  IS amazing.  I won't want to leave, even after I'm allowed to be around people again, I assure you!!!    Take a gander at THIS:

I have the best friends in the world.  And I just can't help feeling blessed and happy.  This horrible day that I was dreading turned out to be an enormous blessing, and one I will remember with joy and gratitude FOREVER.  THANK YOU GOOD AND GRACIOUS LORD!  And THANK YOU, dear and wonderful friends, that I don't even begin to deserve.

I am blessed beyond measure.  

T-3 Days

Hypothyroidism is upon me, with three days until D-day (or R-day, as the case may be).  Headache, fatigue, hoarse voice, poor vision, irritability, bloating, weight gain, swollen face and HUGE bags under my eyes.  My eyes are getting smaller and smaller every day - by Friday, I'm sure they will be slits.   I look haggard, but at least I know that this "not taking medicine" thing is working.  I'm sure I'll make my TSH over 30 goal, based solely on symptoms.  I'm fully feeling the effects of not having a thyroid at the moment.  I have been subsisting on apples, pico di gallo, and homemade taquitos, which has not been bad at all thus far.    I'm in Rapid City, South Dakota, on my way to Rochester, after spending the week in Wyoming with my family for my parents' 50th wedding anniversary.  Thursday will be lab work and a small dose of radiation.  Friday will be whole body scan, an appointment with my doctor, and then the full dose of radioiodine (if the scan shows that radioiodine will work).  There's a possibility that the cancer won't pick up the radioiodine, in which case we'll just scrap the whole thing and I'll go home without treatment.  I hope that's not the case.

So, I'm ready.

Let's do this thing.

ADDENDUM:  Initial lab results are already back and emailed to me from this morning. How I love the efficiency of Mayo!  Good news- I’m not pregnant (ha!). They had to check, even though I told them so;). TSH, which we’ve kept suppressed under .1 for two years, is now up to 58. It needs to be over 30 for treatment, so that’s good. The disconcerting thing is that my TG tumor marker number, which was 3 last we checked and I was super pumped about that, is now the highest it’s ever been at 106. And I was concerned with 8 a few months ago!!  I know that since March when I had the PET scan I never got back to fully suppressed, and that can affect the tumor marker. Just- never been triple digits before- those numbers are usually reserved for lung Mets, and that’s bad news. Not panicking, though. I’m very hypothyroitic right now, and the cancer is feasting on all that TSH. Just a scary number. And means I’ll probably have a pretty dang big dose of radiation tomorrow.

Go ahead and gorge, stupid cancer.   I’m coming for you tomorrow.

Prayers appreciated.

THIS

I am regrettably up in the middle of the night, eluding sleep and subsequently catching up on my email.  Before automatically deleting it  from it's location in my spam folder (like I usually do), a headline caught my attention that led me to a link to an article from National Review. It was a fantastic article, one that hit the proverbial nail on the head, and made me suspect, by virtue of the author’s innate understanding of what Catholics believe, that he must HIMSELF be a believing and practicing Catholic. So I googled him and threw my insomniatic self down a rabbit hole. Apparently yes, this freelance journalist is Catholic, and writes for many secular venues, including The New York Times. He also writes for a group called 1 Peter 5, and when I clicked on the link to see what they were all about, I discovered THIS “about” page that made me mentally scream “YES!!” into the night. THIS. What they are about is what I am about, in my own minute, backwoods way. In the way I try (oftentimes unsuccessfully and imperfectly) to raise my family, teach my children, live my vocation as a wife and mother. It’s what I dream for our society and for the Church . So I am sharing it here as MY “about” page, too.  In a non-journalistic way, obviously, but in solidarity with the goals of these same men and women, brothers and sisters in Christ. THIS.

FROM 1Peter5’s “About” page. 

What does it mean to be Catholic?

It’s a big question. With over a billion self-professed Catholics in the world, we’re obviously going to be a diverse group of people. But the beauty of our faith is that it is truly universal — for all men, at all times, throughout the whole world.

The four marks of the Church are that it is One, Holy, Catholic, and Apostolic. But sadly, in our present age, much of our unity has been lost.

We need to get back to basics. Belief in the Real Presence of Christ in the Eucharist. An understanding of the Four Last Things, and that Heaven is not a foregone conclusion. Adherence to traditional teachings on sexual morality in a world hell-bent on dragging us away from them. A properly-grounded knowledge of the Church’s thought on religious liberty and social justice, and how these impact those of us living in the post-Christian, deconstructionist ruins of Western Civilization. The re-establishment of long-discarded tradition that once made the Church strong, and can do so again.

The statistics aren’t good. Belief in core Catholic teaching among self-identified Catholics is at an all-time low. Liturgical orthodoxy is an endangered concept. We have a vocations crisis that stems directly from the crisis in the sanctuary and the family. And the governments of the world move closer each year to declaring Catholic belief a hate crime.

We long for the return of Christendom. Of a social order predicated upon a proper understanding of God, His Church, her teaching, and natural law. But to get there, we have a lot of work to do.

OnePeterFive exists as a place to begin rebuilding the Catholic ethos. We’re not just here to zero in on the problems, but to offer concrete solutions. We want to restore Catholic culture, rebuild the Church as a patron of the arts, reinvigorate the family and the traditions that keep it strong, reform the liturgy, support vocations, dust off the old devotions and make them relevant again. We want to help infuse the world with beautiful music, inspiring art, families that pray together, parishes centered around the Eucharist, strong communities, and a new generation of Catholics who can effectively bring the Gospel message to a world hostile to that message. [Monica here.  Especially THIS!!!]

Our writers come from diverse backgrounds, but share a common goal: to work together to restore the beauty, majesty, and glory of the Catholic Church as the principal force for good in a fallen world.

We have a lot of work to do. There’s no time to waste.

Why “OnePeterFive”?

In the 1962 Roman Breviary, there is a recurring theme each night as the day’s office is completed. Asking God’s protection from the enemy, the supplicant calls to mind the words of St. Peter:

Brothers: Be sober and watch: because your adversary the devil, as a roaring lion, goeth about seeking whom he may devour. Whom resist ye, strong in faith:

V. But thou, O Lord, have mercy upon us.
R. Thanks be to God.

The quote is found in the first book of Peter, chapter five — a short but meaningful chapter, which offers guidance to those left to tend God’s flock in a time of peril. I can think of no more appropriate passage from scripture for Catholics to bear in mind during the dangerous times in which we live. It is from this passage, and the rest of 1 Peter 5  — that the name of this endeavor is taken.

In his Christmas address to the Roman Curia in December, 2010, Pope Emeritus Benedict XVI cited a vision of St. Hildegard of Bingen as he surveyed the damage in the Church:

In the year of our Lord’s incarnation 1170, I had been lying on my sick-bed for a long time when, fully conscious in body and in mind, I had a vision of a woman of such beauty that the human mind is unable to comprehend. She stretched in height from earth to heaven. Her face shone with exceeding brightness and her gaze was fixed on heaven. She was dressed in a dazzling robe of white silk and draped in a cloak, adorned with stones of great price. On her feet she wore shoes of onyx. But her face was stained with dust, her robe was ripped down the right side, her cloak had lost its sheen of beauty and her shoes had been blackened. And she herself, in a voice loud with sorrow, was calling to the heights of heaven, saying, ‘Hear, heaven, how my face is sullied; mourn, earth, that my robe is torn; tremble, abyss, because my shoes are blackened!’

And she continued: ‘I lay hidden in the heart of the Father until the Son of Man, who was conceived and born in virginity, poured out his blood. With that same blood as his dowry, he made me his betrothed.

For my Bridegroom’s wounds remain fresh and open as long as the wounds of men’s sins continue to gape. And Christ’s wounds remain open because of the sins of priests. They tear my robe, since they are violators of the Law, the Gospel and their own priesthood; they darken my cloak by neglecting, in every way, the precepts which they are meant to uphold; my shoes too are blackened, since priests do not keep to the straight paths of justice, which are hard and rugged, or set good examples to those beneath them. Nevertheless, in some of them I find the splendour of truth.’

And I heard a voice from heaven which said: ‘This image represents the Church. For this reason, O you who see all this and who listen to the word of lament, proclaim it to the priests who are destined to offer guidance and instruction to God’s people and to whom, as to the apostles, it was said: go into all the world and preach the Gospel to the whole creation’ (Mk 16:15)” (Letter to Werner von Kirchheim and his Priestly Community: PL 197, 269ff.).

There is not one aspect of the present situation in the Church that could not be greatly alleviated by holy priests teaching, administering, and tending to the needs of their flock. But holy priests do not exist in a vacuum. They come from devout families who live their faith. They come from parishes where the Eucharist is treated with great reverence, and liturgy is noble, fitting, and pleasing to God. They come from dioceses where seminaries form men to be alter Christus.

The Second Vatican Council ushered in an era of great tumult in the Church. But it also emphasized the role of the laity in the work of Catholic apostolate. There can be no greater work the laity can do than to bring about that interior reform, beginning at home, in the workplace, and in the culture, which will increase devotion to Our Lord, Our Lady, and those practices of piety and reparation which might return God’s favor to our deeply fallen world.

Half a century has been spent analyzing the problem. It’s time to start building again.

So I exhort the elders among you, as a fellow elder and a witness of the sufferings of Christ as well as a partaker in the glory that is to be revealed. Tend the flock of God that is your charge, not by constraint but willingly, not for shameful gain but eagerly, not as domineering over those in your charge but being examples to the flock. And when the chief Shepherd is manifested you will obtain the unfading crown of glory. Likewise you that are younger be subject to the elders. Clothe yourselves, all of you, with humility toward one another, for “God opposes the proud, but gives grace to the humble.”

Humble yourselves therefore under the mighty hand of God, that in due time he may exalt you. Cast all your anxieties on him, for he cares about you. Be sober, be watchful. Your adversary the devil prowls around like a roaring lion, seeking some one to devour. Resist him, firm in your faith, knowing that the same experience of suffering is required of your brotherhood throughout the world. 10 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, establish, and strengthen you. To him be the dominion for ever and ever. Amen.

– 1 Peter 5

We entrust this work to the patronage of Our Lady, Virgin Most Powerful; Saints Peter and Paul, Saint Benedict, St. Michael, and all holy angels and saints.

Oremus pro invicem.

Steve Skojec
Founding Publisher
OnePeterFive

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!