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.