You’ve Come A Long Way, Baby!

Four years.  Four years.

It’s been exactly four years since I took my I-131 radioactive iodine treatment for my papillary thyroid cancer. My oh my, how my life has changed since then!

I’d like to say I haven’t given cancer another thought since that day, but truth is, I think about it every day. Every morning I wake up and take my thyroid replacement pill first thing and wait an hour before eating or drinking anything that might affect the absorption.  During my pregnancy my daily dose was changed 5 times to meet the increasing demands from my body and from Maddie. Since her birth 2 months ago, my dose has been changed twice as my body readjusts to my “new normal.” Without this one little daily pill, I would slowly go more and more hypothyroid and eventually my mind and body would shut down.  I would be so screwed in a zombie apocalypse scenario.

I have just one more year until I can say I’ve been cancer free for the magical five years = cured mark.  In this upcoming year, I have plans to undergo a whole body scan once my daughter is weaned.  Once again I will have to go hypo on purpose.  Once again I will have to take some RAI and go into isolation for a short time – this time from my husband and daughter – to protect them from my radioactive self.  Hopefully this time nothing shows up on the scan in my thyroid bed or in my lungs.

If I think on it too long, it terrifies me. So I try not to let my mind go there.  I have a long life ahead of me – including seeing my great-grandkids grow up – and I'm positive there are many adventures awaiting me!

Lymph Noooooo….

This blog originally started as a way to keep family and friends updated as I went through thyroid cancer. If you haven’t been along for the journey, you can read some of the highlights {lowlights?} here.  This year will mark 4 years since my diagnosis – 5 years is magical point where cancer patients are declared “cancer free.”  Until that point, I have follow-up appointments and screenings every 6 months. Since I’m pregnant and have no thyroid, I am monitored monthly because of necessary medication adjustments.  The thyroid is a pretty important little organ!

About 4 weeks ago I went for a neck ultrasound. Friday at my monthly endocrinology appointment I got the results. The report found 7 lymph nodes that are enlarged, 2 of which are significantly enlarged.  There is also a cystic area noted on the left side which is where my original nodule was – and if you don’t remember my papillary thyroid cancer was cystic in nature. {ie: looks like a cyst on scans rather than a solid mass}  My blood tests show no indications of recurrent cancer, however, and my doctors cannot feel the enlarged nodes on physical neck exams.

So what do we do?  My options were:

get an ultrasound guided lymph node biopsy done
OR
watch and wait for 3 months and repeat the ultrasound. 

Lymph nodes can be enlarged for many reasons, one of which is illness, and I had been sick with a flu-like illness a month prior to the scans. Knowing this and knowing that my blood tests have been clear {Tg, TgAb} my doctor and I have decided for the watch and wait for the repeat ultrasound approach. 

It seems very contrary to my normal aggressive approach toward all things cancer related, but being pregnant changes things immensely.  While a biopsy would be done with just a local pain reliever, if it came back positive for recurrence I would need major surgery followed by radioactive iodine treatment. I know surgery can be done while pregnant but it can be risky.  The radioactive iodine cannot be done without harm to our baby girl.  I feel like surgery and RAI are just not options at this point.  So we wait until June for a repeat scan {that will hopefully be all clear} and about a month later baby girl will arrive and then additional decisions can be made if necessary.

I know I ask for prayers a lot on here but we would really appreciate yours these next few months.

Follow The Rainbow

Look at all the pretty colors! 

If you have thyroid issues you may recognize one or more of the above prescriptions.  This is the assortment of replacement thyroid hormone doses I’ve been on in the last 9 months. Let me tell you, its no fun.  Since my radiation treatment I’ve had my medication dose monitored every 6 months as well as my tumor markers.  Now that I’m pregnant I have to have these monitored monthly.  Since I’m less than 5 years from my initial treatment I’m still under active cancer surveillance which is a little more than nerve wracking when you have a baby on board!

Four months into pregnancy and I’ve had my med dosage increased twice. This is fairly normal from what I’ve been told but it is critical that mom and baby have sufficient supplementation over these months as we both grow.  That means in addition to my monthly OB appointments, I have monthly Endo appointments.  I also have monthly blood draws to monitor my TSH, T3, T4 and the all important tumor marker TG.  Every month I wait anxiously for the call that says my tumor markers are still undetectable and for the verdict on a new dose of hormone.  This month alone I have an Endo appointment with blood draw, OB blood draw, neck ultrasound appointment, 2nd Endo blood draw, and the most anxiously awaited OB anatomy ultrasound appointment.  That’s a lot to deal with.

But… if it means that we can have a healthy pregnancy for momma and baby, it is perfect.  I know as we get further along in the pregnancy the appointments will increase and I welcome that.  It means an even closer watch and more opportunities for reassurance.  Instead of looking at these appointments with fear or dread I will welcome them and be thankful.

I am well. Baby is well. We are blessed.

Time Goes So Slowly…

…when you are waiting to find out if you have cancer again.

I’m anxiously awaiting the biopsy of “Jo” and the days seem agonizingly long. As of today there are 18 more days of waiting until the biopsy and who knows how long after that to hear results.  We *might* know something preliminary that same day – I really hope so.

So in the meantime, my imagination is left to run wild with all the things it could be. Based on my latest thyroid tumor marker labs, a recurrence of that is not likely to be the culprit. That leaves things like an infection, cyst, lipoma, and of course a second primary cancer as possibilities. 

While cancer is probably the lowest possibility on the list, its hard to ignore. Since I’ve had cancer once, I have about a 20% higher chance than the rest of the population of getting a second type.  If you look at studies on my specific type of cancer & its treatment, you find that I have a 30-40% chance of getting a second primary cancer at some point.

To get my mind off things for a while, I’m heading to Michigan to see my new nephew so I know at least the next 6 days will fly by!  Then its back to work in St. Louis for 8 days and then home to Tennessee for Easter weekend before B-Day.

Meet Jo

Once upon a time I had a visitor named “Bob”… 

“Bob” {for the short story} had invaded a space formerly occupied by my unassuming thyroid, carotid artery, trachea & esophagus so I had to evict him… twice. And then I had to clean up the mess he left behind.

I’ve been “Bob” free for *almost* 3 years now.  Three wonderful, visitor-free years… until I found “Jo.”

“Jo” as it were, happens to be a new resident in one of my axillary lymph nodes.  Well, maybe not quite so new… I first noticed something around Christmas and thought it would just go away, you know just a short visit over the holidays and then gone?  Three months later and my visitor is still hanging around so I hired a Physician Investigator to help me get to the bottom of it.

I am terrified of the various possibilities of just whom “Jo” might be.  A relative of “Bob” perhaps?  A stranger just passing through?

My PI has big plans to do a biopsy to get to the bottom of that one soon… like April 9th soon.  So until then I’m on pins and needles wondering just what “Jo’s” intentions are…

SOCS: I Suck At Blogging

The timer is set and I am here to admit to you all that I have been neglecting this little blog o’ mine!  See I went back home to visit my family and then have had a completely hellish week and… well I’ve been too wrapped up in my own self to share anything with you all!  I’ve thought about some posts but haven’t actually done them… but hey, it’s the thought that counts right?

So to do some very quick updates for you all…

I finally went to my Endo for my 2 year check-in.  I was nervous as h-e-double- hockey-sticks.  But turns out I had no need to be. My tumor marker came back in negatory glory and my neck ultrasound turned up nothing suspicious except a missing lymph node. {note: I am in fact missing a cervical node as a result of checking for mets during surgery so that is normal for me.}  So I got a pass for no doctor visits for 8 months although I do have to visit the lab vampires twice between now and then and they changed my meds…again… because now I am to hyper which could explain some anxiety, sleeplessness, and hair loss I’ve been experiencing.

The visit back to G. Rap was fantabulous… I will be blogging about that in all it’s glory in another completely separate post.

I have just 5… count ‘em 5… days left at my current job.  I am very happy with my decision to move on even after just 6 short months of being there.  It is not a healthy environment for me.  So where am I going and what am I going to do?  I am NOT moving back to Michigan at this time.  I like it here in East TN.  I AM all set with a new gig.  One that involves consulting. And travel. And I am super excited about it!  The job may also require a completely separate post coming up!

And there is another exciting development going on in my life…

Annnnnd there is the buzzer… no I’m completely serious… I did not mean to have that last sentence be a cliffhanger! I  guess if you all want to know what the end of that sentence will bring, you will just have to stay tuned?
…

This was my 5 minute Stream of Consciousness Sunday post. It’s five minutes of your time and a brain dump. Want to try it? Here are the rules…

• Set a timer and write for 5 minutes only.
• Write an intro to the post if you want but don’t edit the post. No proofreading or spellchecking. This is writing in the raw.
• Link up by clicking on the button below!

Words That Heal

If my doctor told me I had only six minutes to live, I wouldn't brood. I'd type a little faster.
~Isaac Asimov

I was reading this article today about how writing through a serious illness can be cathartic.  I wholeheartedly agree.

I may have started this blog under the guise of keeping friends and family informed about my progress through surgery and treatment but it evolved into so much more. 

I started with just a few posts that were more factual than feeling.  Soon enough I was talking about the confusion, pain, fear, loneliness, anxiety… all the things that I couldn’t say out loud when asked “how are you doing?”  Those who asked such a question received an ever cheery smile and the upbeat “I’m doing good…”, “Feeling much better thanks…”, or “Everything is going really well…”

Truth is sometimes it wasn’t all hunky-dory.  Truth is having cancer is never ok.

I feel like my writing through my cancer journey was honest even if it wasn’t always light hearted.  I also think that writing about it was the cheapest form of therapy I could have found {with the exception of Gilda’s Club of course!}.  It helped me organize my thoughts and feelings and really reflect… and now that I’m on the other side it helps me to remember things completely lost to cancer brain.

I’ve realized that even though I started this blog for my friends and family, it isn’t about who reads it, its about the life I’m able to live because I wrote it.

Fill your paper with the breathings of your heart.
~William Wordsworth

Live your life from your heart. Share from your heart. And your story will touch and heal people's souls. 
~Melody Beattie

Saturday Seven

Trying something new today… the Saturday Seven. Just seven random things I’ve been thinking about this week most of which would not make up an entire blog post by themselves but are worth sharing or at least I think they are!  Link up if you want to play along!

One. In honor of ones, I realized its been a while since I’ve done an update to my 101 in 1001 list.  So here are a few items I’ve crossed off and some I’m still working on… 

• lose 25 lbs – sorry to say I’m still in the working on it phase
• Pay off car & credit cards – working on it! Only 4 more car payments!
• Go to a live musical – tickets bought for Beauty & The Beast at the Barter next week!
• Local restaurants – new one to add: Cranberry Thistle, Jonesborough, TN
• Create a calendar to track birthdays – downloaded a template to help me do this… just haven’t filled it out yet!
• Grow my hair 5in below my shoulders – currently at 4 inches
• Get a massage & get a pedicure – done on Feb 19th in Gatlinburg!
• Send mail to someone once a month – April, May, June: check!
• Read a book starting with every letter of the alphabet – new letters claimed: Bountiful Container, Outlive Your Life.
• Read a book in one day: The Final Summit
• Read 101 books – new to add: Wasted, The Secret, Grits Guide To Life, 33 Ways to Tell Your Fortune (that makes 17)
• Watch 26 movies {alphabet} & 10 classic movies I’ve never seen– working on this with help from Netflix

Two. I slept in until 8am for the first time in months. Yes, I said months. And yet I’m still exhausted… maybe it takes more than one night to get rid of sleep deprivation?
Three.  My horoscope for today reads: “Your house of career is undergoing a slow and profound change as you shift from one way of working to another.  You’ll have great potential and options as Uranus in your house of self combines with Jupiter in your house of money to bring a delicious set of planetary helpers.  Venus and the Sun in your house of words could help you write your future.”  This is more scary true than you know… more to come.
Four.  Remember the apartment debacle?  I still haven’t heard boo from the management company after they swore they would “get on it” to “rectify the situation.”  This weekend will be devoted to formulating the next line of attack.  I gave them ample time to fix things. They chose not to. Now it’s on.
Five.  Stress has been crazy lately… combined with the sleep deprivation and you get my body attacking itself… again. You can read more about that here, here, and here. Last night I noticed my parotid was pulling one of these again.  And the other symptoms of Sjogren’s are back as well… dry eyes, dry mouth, aching joints, brain fog, dry skin, fatigue.  Must manage stress to prevent flares.
Six.  My plan for this weekend is to nap and to heal… and to clean my house and do laundry. Sigh…  where did the maid go? 
Seven.  I made good on my promise.  I have tests and an endo appointment scheduled for early July.  Praying that the fears are all in my head and I get only good news.

I’ve Got A Feelin

“June 12th, 2009 – …My doctor was nearly certain - in fact said he would be "very surprised"- if my full pathology came back as anything but benign. 

We were both a little shocked when I went in to have my stitches out a week ago Friday and found that "Bob" had been sent to the Mayo Clinic for a second look. He said he would call me as soon as the reports from Mayo came back...

So that is basically how exactly 2 months after my 30th birthday, I got the phone call telling me I have cancer”

Today marks 2 years since I heard the words “You have cancer…” over that phone line.  It’s a day I will never forget...  A day that changed my life forever.

It seems like a lifetime ago but at the same time I know I’m not at that magical 5 years = cancer free mark yet.  It is probably why I have been dragging my feet to find a new endocrinologist and have my testing done.  I know I need to do that.  I know.  But I’m scared that there will be news I don’t want to hear.  That and Endos are notoriously prima donna like so meeting yet another one isn’t exactly high on my list.  I will make that appointment. I promise.

So how am I celebrating 2 years of survivorship?  I don’t know yet.  I’m thinking of sleeping in, reading a good book, watching a new movie, and heading down to get a Peanut Butter Dream to stick 2 tiny little birthday candles in. 

I’ll light those 2 little candles.  And while blowing them out I will make a little wish for all the dreams I’m holding in my heart.

Because as I said one year ago today…

“Today is a day to celebrate every moment, to appreciate the little things, to stop and smell the roses, to live life to the fullest, to shout it from the rooftops! 

I am here, I am healthy, I am loved, and I have a very long life in front of me.

For today, I am pushing all of that away and am remembering that today is worth celebrating because life is worth celebrating!  Life in all its ups and downs is simply a gift every single day. 

Today Every day is my most precious gift”

For Your Consideration

I’ve been considering making my blog private for a while now.  There are several reasons why that may be a good idea, one of which is the obvious fact that anyone can read this and sometimes there are things that are a part of life that you don’t want certain people knowing.  It’s all very mysterious, I know... But the reason for not wanting certain people to know certain things is simply to avoid the drama that could {and probably would} ensue.  Of course there is also the drama of those whom you don’t include on the exclusive “allowed readers” list.

Some of you may be thinking – why blog about it at all then?

Good question.

For some of you out there, your thoughts spill out into the the very private pages of a diary – or journal as is the trendy way of saying it these days. I tend to blog about mine.  I’ve never been good at keeping a journal but for some reason I can blog on a semi-regular basis.

I used this blog as a communication tool during the doctor appointments and surgeries and treatment course of my cancer journey... but it became more than that.  It was my coping mechanism.  A place where I could express the many emotions that come with dealing with a serious illness.  I was completely open through it all and I’ve had other cancer survivors tell me they appreciated that level of honesty.  It was good. Raw. Me.

So why am I feeling like I need to be guarded now? 

Thirty {Point} Two

I refuse to believe that another birthday means an increase in my age, hence the point two on the end. I need that part to help me remember exactly just how old I am since at some point after 25 I started forgetting that little fact.  I know, I’m old and showing my age by admitting that sometimes I forget how old I am! 

I firmly believe that you are as old as you feel.  Some days that means I’m 5, sometimes I’m 20, and sometimes I’m 100.  It just depends on the day, my mood… and maybe the weather.  My rheumatism acts up from time to time contributing to the 100 factor… and if you don’t know me, I’m kidding on that last one… maybe…

But to be serious for a minute, a birthday is something to celebrate with full force. This is my second birthday after my cancer diagnosis… not quite my “cancerversary” yet but one year closer to that 5 year term “cured” mark!  I’m alive and well and thankful for every breath I take. Yes, that even means on the bad days!  I laugh and cry more freely than I did before.  I pay attention to my body and things that might not be quite right.  I take more chances and don’t worry so much about what other people think.  I make a point to enjoy relationships, family, friends, every moment of me time, the smell of spring flowers, the story in a good book… I know I’ve said it before but hearing the words “you have cancer” changes you.

For me the change was living fully and I’m forever grateful for that.

So happy thirty {point} two to me!  I’m looking forward to the next year’s worth of adventures!

One Advantage

Hearing all the reports of the radiation worries in Japan lately makes my heart go out to the people there.  The country is already devastated from the damage caused by the earthquake on March 11.  Now those poor people have to worry about their water and food and even the air…

I’ve been reading the news reports and thinking how bizarre it is that the radiation that is causing all the hubbub is the very same stuff that I had to ingest in quite a large and concentrated quantity just 17 months ago.  The very same radioactive isotope used as the treatment for thyroid cancer also causes thyroid cancer. 

I have first hand knowledge of what can happen if you ingest this isotope in high doses. I won’t recount all the dirty details of just exactly what did happen in this post but if you are interested you can read about it here, here, or here. 

After going through all of that and having every last thyroid cell radioactively burned out of my body, its nice to know that there is at least one thing I won’t have to worry about should a nuclear disaster happen nearby.

You Can’t Handle The Truth!

Kaffee: I want the truth!
Col. Jessep: [shouts] You can't handle the truth!
- A Few Good Men

What is the thing everyone says they want in a relationship?

Honesty.

What is the one thing that most people can’t handle?

The truth.

It’s hard enough dating and worrying about normal rejections: Will he think my hair is too short/blonde/long/flat? What if I something gets stuck in my teeth?  What if my outfit is just all wrong? What if he thinks I’m too thin/fat?  The list is endless and we all worry about them every time.

But…

What if you add the “cancer thing” in there? See you can hide that precious little gem from people for a while but when you literally bear your dirty little secret on your neck, it doesn’t stay hidden for long.  [I’m sure I’ve blogged about this topic before but for the life of me can’t find it on here!]  When should you tell that potential someone? If you tell them right away, it might be too much too soon.  But if you wait, will they think you were keeping this big huge secret behind their back?  Once you do tell them, whenever you choose to do so, will they bow out anyway because it’s just too much to handle.

I had cancer. I dealt with it, I accepted it, I conquered it. I have changed because of it. I know I am stronger because of it.

I had cancer but I am a lot more than cancer ever was. And you are the one who’s missing out.

Mind Over Mass?

I was reading an article on CNN.com today about a guy who “visualized” his bladder cancer away.

Uhm…

Ok I’m not one to knock a miracle or anything… and I think we have all heard a story or two of someone who was seriously ill and then suddenly wasn’t… but I always cringe when I see articles like this. Articles that basically say you don’t need to get the standard treatments, you can just sweat/exercise/eat/think yourself to a cure!

While I can’t argue that miracles DO happen, I think I can safely say that they don’t happen to everyone. And if you forgo all the amazing things that modern medicine can offer, you may just get the short end of the stick.  In my humble opinion, you need to take ownership of your diagnosis and then do whatever it takes to kick it’s little booty!

At the same time I have read many studies about the impact that attitude has on outcomes in patients.  Basically they all say if you think you are sick and dying, you may want to be a little more careful of what you wish for…

Now, I’m not going to say it’s easy to stay positive through months [and sometimes years] of treatment.  I know I had my moments… or at least I think I did… where everything was completely miserable, horrible, the worst ever.. [hmmm now I think I’ll have to look back at those blog entries to check]  And sister, if it makes you feel like you have some control over the situation by eating only raw, crunchy, rabbity food… by all means go right ahead!  We could all use those extra vitamins and minerals to boost our immune systems!  And if you feel like meditation and visualization helps you keep things in a positive light, then Namaste.

But please, please, please people… talk with your doctors about all your options! You may be surprised to find how many of them will encourage and support your complimentary medicine wishes and will even incorporate them in your treatment plans.

In the end it’s all about owning your body, mind and spirit instead of letting the diagnosis take that role.

World Cancer Day

Every year 12 million people receive a cancer diagnosis.  Of those, 7.6 million will die of their disease. 

I am one of 12 million who heard those words in 2009.    It’s amazing how isolated you feel when you hear those words yet there are 12 million others that have heard the same thing within that year. 

Reading the statistics above, I feel extra lucky today that I am a survivor.  Did you do the math?  Those numbers mean that over 60% who have cancer die of cancer. But it is estimated that 30-40% of those deaths could be prevented and as many as one third could be cured through early diagnosis and treatment.

It’s time for us to fight this global epidemic. Click on the logo above and sign the declaration urging our global leaders to come to action.

A cancer patient will thank you.  I thank you.

Stressin

My To-Do list seems to be growing by the day and with Christmas just three days away my time is running out.  Once Christmas Eve hits, things will come to a close and I will be spending stress free time with family before the big move… I hope!  The post-it notes are in full effect now.  I’ve always loved post-its, but since having thyroid cancer my memory is just nonexistent so I use post-its on doors and in my planner to remind me of things.  On my entry door right now I have 5 post-its with notes ranging from “remember storage space boxes” to “cancel cable/internet, gas, electric” to “ remember CD for U.Ken on Saturday.”  Notes that may get added to the door in the next day or two: “Bring: presents, turtle pumpkin pie, laptop for dad”, “email to moving crew of new time”, “fill out paperwork.”  Some of these are notes I usually would post in my planner or in my Outlook as a reminder but since I’m off work until next year, post-its it is!

Packing is going slowly.  I have completely cleared one room and almost cleared two others.  Today I didn’t get much done on the packing front but I did start and finish my Christmas shopping.  Go me!  All presents are now wrapped and in a laundry basket ready to head to my parent’s house on Friday.  Still on the list are many things in addition to packing and today I’m just not feeling so well.  I’m trying to decide if I should head to bed early to make up for the mere 4 hours of sleep last night but I have so many things swirling around in my head to do that my anxiety levels are rising just thinking about wasting time on sleep.  On the top of my To Do list for tomorrow is to cancel my cable/internet so maybe I can look at it as time to finish my DVR clearing project?  I’m doing pretty good so far and have gone from 58 movies on there to just 5!  I’ve seen 4 of the 5 before which to me means its ok to “watch” the movie in the background while the main focus is on packing.  So maybe taking a break to watch the last one I haven’t seen isn’t too bad.  I’m just hoping I feel better after 8 hours of sleep tonight.

If I don’t get some sleep, I think I may soon look very much like this…

And no one wants that now, do they?

And Then He Said Stop

This week went into major fast forward mode starting on Tuesday.  My mind has been racing, my body has been racing.  There is so much to do, so many things to take care of, wrap up or begin.  The list is growing by the moment and certain things are just too much to think about right now and give me total anxiety.  One thing is: I don’t know where I’m going to live yet.  But things are moving in a direction so that I know I will have someplace to live.  I just hate the not knowing thing right now!  Another thing is when am I going to find time to pack in this busy holiday season?  It has to be done, so it will be… I just need to start!

But the main thing giving me anxiety is health related.  I need to find new doctors which doesn’t just mean a PCP or OBGYN or dentist… for me that also means a new Rheumatologist and Endocrinologist and possibly a new Surgeon. It means telling every little detail of the past 2 years all over again.  What if I forget an important piece?  Can I keep my current Endo & Rheumy with my new insurance?  Can I schedule the appointments when I will be able to make the trek home?  And at the last Endo appointment they said at the next appointment [coming up in Feb] we need to schedule my 1 year follow-up scans.  Which means I have to go on the LID again… and go hypo again… this time 700 miles away.  Or will my new insurance pay for Thyrogen?  Will there be any Thyrogen available?  Should I try to get into a new Endo down there to start them out with a bang or should I try to get in with my current Endo before I leave… but then I still wouldn’t have time to schedule the LID, going hypo and my scans… 

It’s just too much to think about right now on top of everything else.  I have too many other things that absolutely have to get done in the next 30 days.  And please, spare me the lectures on the importance of the 1 year scan – I Know – but I also know my TG levels have been undetectable which is a really good signal that my cancer is still gone.

So in the midst of all this too much to do anxiety, I decided to start packing this morning. As I ate my IKEA cinnamon roll, [I managed to squeeze in a trip yesterday to buy me some lovely new curtains for the yet to be named living space] I started to feel that familiar tightening on the left side of my face.  My jaw started feeling stiff, the place where my jawbone curves up below my ear started swelling. [similar to this]  Seriously?!

In the midst of the do I/don’t I in relation to Sjogren’s Syndrome, it sure seems like my symptoms fit the bill.  Symptoms are aggravated by stress and in the last 2 weeks my skin has gotten so dry that it cracks, my hair has been falling out in massive amounts, my hands have hurt so much I could barely  make a fist and well… now my face is blowing up again.

So I’m taking it as a sign that today, I need to just stop.  Meditation, movies, cleaning, writing, scrapbooking… I don’t know what exactly I will do yet but I need to clam my body and mind.  I’m starting with blogging and lots of fluids to jump start my parotid back into action. Hopefully the facial disfigurement is short lived.

Micrometastasis? Maybe.

micrometastasis (n.): the spread of cancer cells from the primary tumor to distant sites to form microscopic secondary tumors.

My post-RAI WBS turned up activity in my “residual thyroid tissue and/or local lymph nodes”. (great specificity nuc med) The residual thyroid tissue is expected to show up because your thyroid is literally attached to most of the structures in your neck (most notably your windpipe) so they can’t physically get EVERY cell without damaging other, more important organs. The part about them not knowing if it was also showing uptake in local lymph nodes makes me entirely not confident in the nuc med physicians at my hospital. Well that and the fact that they didn’t think I needed a post-RAI WBS when it is ALWAYS done everywhere else… but I digress…

The WBS also showed “diffuse uptake in the left lung posteriorly” in a pattern “not consistent with focal metastatic disease.” What this means is there was RAI uptake in my lung but it didn’t show focal tumors (macrometastasis). If you remember, radioactive iodine is ONLY taken up by thyroid cells in the body (cancerous or regular) and whatever they gave me that wasn’t taken up by my residual thyroid tissue was excreted in urine, sweat, and saliva. There is NO reason there should have been any uptake in the lung with the exceptions of the presence of thyroid cells in the lung tissue OR an infection/inflammatory process (like pneumonia or pleural effusion). The recommendation by nuc med was to get a chest x-ray for further characterization which I had done on Friday. My chest x-ray was CLEAR. Meaning I have no pneumonia or pleural effusion or any other inflammatory process.

So what does this mean? Without the presence of focal metastatic disease (cancerous nodules) there is the strong possibility that I have diffuse micrometastasis of my cancer throughout my left lung. It could also have been a fluke in the machine but that is the less likely scenario.

So ok, what does that mean? In patients without metastatic disease elsewhere (this is why the lymph node comment bothers me) long term survival rates are very high when lung mets are too small to see on x-ray and have only shown up on post-treatment WBS. 10-year rates are still near 100% with these diffuse micrometastases… but when the mets become micronodules (<1cm) survival rates drop to around 40% and when mets become macronodules (>1cm) rates drop to 15%. It not showing on the x-ray is common in patients my age and is actually a good thing. Also, the dose of RAI I had (200mCi) is exactly what would have been prescribed had we known about this prior to my treatment and the follow-up course should not change at this point. In 8-12 months I should have a follow-up scan and if uptake is present on that scan, I will need another 200mCi of RAI, repeat that cycle until no uptake is seen on the post scans. We should also be monitoring my thyroglobulin levels and if they are elevated that will indicate persistent disease.

That all being said, I think its time for a second look/opinion on my case. I plan on calling my PCP for a referral to a thyroidologist and the only ones in state are at U of M. Any metastasis in thyroid cancer tends to mean higher chances of recurrence and/or further spread so I think having a specialist review my case would be a good thing at this point and if they have a more aggressive treatment plan in mind I will probably transfer my care to them.

So lots to think about, pray about, and try not to worry about in the coming months!

Cutting Through the Fog

After weeks of being very deep in Hypo Hell and having the most ridiculous brain fog [see also: chemo brain]… for a few hours today I found myself with lots going through my mind!

That may not seem like an exciting [or good] thing to most people, but literally I feel like my mind has been a barren wasteland for weeks. Day in and out I thought of nothing, could concentrate on nothing, could comprehend nothing. I had all this wonderful time on my hands to plan fundraisers for the 2010 3-Day for a Cure or plan trips to visit Lacey in CO or Eva in Germany or work on my scrapbooks or simply email/call/text friends but I literally could. not. think!

Today for about 3 hours I was able to cut through the fog enough to make lunch, worry about my WBS results [coming Thurs or Fri], respond to emails in my personal account, contact HR & my bosses about going back to work next Monday, looked up my dentist appointment time, make a grocery list, almost make plans for a movie with Slaglm [forgot to look up times! oops!], asked my dad if they ever sent Chad & Allison’s wedding card [this was 4 weeks ago & my dad laughed at my memory coming back], sent out an email reminder to those interested in joining the 3Day team… and then I literally passed out for 2.5 hours until my mom called and proceeded to ask me if I was ok because I sounded out of it.

Too Much, Too Soon

I decided to make my first foray back into the public today [aside from Dr’s offices that is] by going to breakfast with my family and then grabbing some groceries.  According to my hospital issued isolation precautions this was ok but just in case we made some extra precautionary plans to avoid pregnant people and kids for lengths of time.

From the moment I woke up I knew it was going to be a tough day.  You see, I haven’t slept more than a couple hours at a time for days now but last night I fell asleep around 12:30am and then slept straight through my alarm an extra 45mins.  When I realized how late it was I had 15mins to get ready before my parents picked me up! [note: still not able to drive]  I was feeling the exhaustion down to the very center of my bones.

We went to breakfast and afterward, mom asked if I needed anything from the store.  Of course I did because the only food I had in the house was LID friendly [nightmare] or was the normal random odds and ends that don’t make up an actual meal.  So I told her yes even though all I wanted to do was curl up in a ball in bed.  We grabbed things at the store and my mom said I was looking pale so she knew it was time for us to go.  We had to make one more stop for my kitties [food] but then they took me home.

Sounds like a crazy big exciting day huh?  Apparently it was for me.  The exhaustion is ridiculous and there is simply no way to explain it to its depth or breadth.  My entire body hurts.  My neck is throbbing and I can’t lay down because of the interminable reflux.  I could go on and on complaining of various symptoms but I won’t.  I will just say at the moment I'm completely miserable and I hope that I can sleep again tonight.

Worst part of today?  I didn’t even enjoy my breakfast because I can no longer taste anything.  Another one of those “no side effects” side effects from the RAI.