It's All Happening! (Including Elk Goulash)

Hooray!  I'm 30!!  My birthday was wonderful this year.  I was able to spend it surrounded by friends, family and Aerosmith.  What more could a girl ask for?

I've been off of my thyroid medication (Synthroid) for 29 days now.  The descent into hypo hell has been an interesting one.  I felt almost normal until about day 12 when the chills and fatigue started creeping in very slowly.  On day 14 I felt like I got hit by a truck that was conveniently filled with mattresses.  Most likely discounted mattresses because, when are they not?  All I wanted that day, and all I have wanted since then is to sleep.  I need to nap in the afternoon every day.  If I don't listen to my body, my sleep at night is fitful at best.  I've been sleeping 12-18 hours per day for approximately 2 weeks.

I'll list the rest of my symptoms, in order of appearance, just for fun.  Remember, if you're going to be off of your meds at some point, don't freak out about this list.  This process is highly variable and everyone reacts differently to being without thyroid hormone.  Here we go! :)

Feeling cold when I shouldn't, fatigue, muscle cramps (legs at night), headaches (most likely due to water retention/edema), heartburn, nausea, super itchy eyes, worsening of seasonal allergies, puffy face (due to edema), slow pulse, extremely vivid dreams (especially during my naps), clumsiness, hormonal irregularities (at this rate it will be my time of the month 3 times this month...), and brain fog.

Luckily, the brain fog held off until very recently.  Those of you who have seen me recently can tell me if you agree with that assessment or not, lol.  I can say that I got several very complicated experiments done at work last week without messing them up :)  I can also say that I have no idea if I washed my hair twice with shampoo, twice with conditioner, or once with each this morning.

Many people who are off meds for this long (or longer) also report weight gain as a side effect.  We're talking 15 pounds or more in a month.  I'm happy to report that I have not gained any weight since stopping my meds.  In fact, I may have lost some.  I don't use a scale, so I'm only gauging this by the fact that my clothes fit just fine, and I'm wearing a pair of jeans that I haven't fit into in awhile.  I can only attribute this to eating primally before I started my low-iodine diet, and continuing that during the LID, even though it is a pain in my butt.

The LID is a 2 week (or longer) diet leading up to the treatment dose of I-131 that is meant to deplete your body of any extra iodine so that it is really craving the radioactive iodine when the ablative dose is finally administered.  The largest sources of iodine in our diets are iodized salt, sea salt, seaweed (and all of its derivatives such as carageenan and agar agar) and fish.  The ocean is a rich source of iodine.  Other things to avoid include egg yolks, dairy (including chocolate), rhubarb, strawberries, potatoes, breads, rice, red dye #3, soy products and molasses.  If you remember back to other posts, I already avoid most of those things anyway.  However, cutting out eggs, dairy and all sea-based products doesn't leave much for consumption.  There is more info here on the ThyCa website.

I was left with fresh meats, veggies and fruits.  I purchased all of my meats from the butcher and as many veggies and fruits as I could organically.  I did not shop in any meat sections because almost everything there has some sort of sodium solution injected into it for "tenderness" or some other B.S.  Guess what sodium solutions contain?  Probably iodized salt or sea salt.  I did not eat at any restaurants during this time and I prepared all of my own meals using Kosher non-iodized salt.  The food was delicious every single day!  And there is no way I could have done any of this without the help of my amazing sous chef/sister.  Or was I her sous chef?

For example, tonight I made Elk Goulash.  I chopped one onion, two carrots and a head of cauliflower and put them in the bottom of my crock pot.  I seasoned them very liberally with salt, pepper, smoked paprika, onion powder and dried minced garlic.  I topped that with one pound of frozen ground elk and a 28 oz can of San Marzano tomatoes with basil (salt free!).  I turned my crock pot on high and relaxed.  After about 2 hours I started breaking up the meat and stirring everything together.  I added 1 cup of water at this point because it looked a little dry to me.  Then I took a nap.  A few hours later I continued breaking up the meat and stirring.  Everything looked and smelled awesome.  I tasted the broth at this point and added more onion powder and salt, then cooked it about an hour longer.  Voila!  Dinner.  It was fantastic!

I'll be continuing my LID just through Thursday.  After that eggs, seafood, sushi, bacon!, dairy and other things will be re-introduced slowly.  Still no grains, red dye #3, soy or sodium solutions in meats, of course.  If any of you have any easy recipes to share, I would love to have them!  Leave links in the comments section if possible, or email them to me:  lnettens@gmail.com.

I went in last Wednesday to have blood drawn to see if my TSH was high enough to commence treatment.  We were looking for a number above 30.  Mine was above 130.  Thundercats are go!  I received my tracer dose of radioactive iodine (2mCi) on Monday and I will have my pre-treatment scan Wednesday at 9am.  Then I get to wait around at the hospital for awhile so the doctors can talk to each other, decide on my treatment/ablative dose of I-131 (between 100-150mCi) and get that ordered from the pharmacy.  Once it arrives at the hospital, I can take it (it's a pill) and then head off to seclusion at my parents' house for a week.  Next Wednesday I will have another scan to see if we can find any other micro-metastases in my body.  The high dose of radioactive iodine will allow us to see smaller mets than the small doses do.  Hopefully we don't find any, but if they are there, this treatment should wipe them out.

So, as I said in the title, it's all happening (can you name the movie?)!  I'll be starting my meds again on Sunday, 1/2 pill per day for 10 days, then back up to the full dose.  I'm hoping to be back to my old self energy-wise about 6 weeks after that :)  Enjoy your summer, people.  And send me recipes!

Until next time,
Check Your Neck!

The Post I Hoped I Would Never Have To Write...

I have received some disheartening news.  The whole body scan results are in, and there was faint uptake in my left neck.

Translation:  The cancer is back.

I was still at work when I got the news and I cried, right there at my desk because there really was no other option.  My heart started racing and my hands were shaking.  "Shit, shit, shit," was all that was going through my head.  Eloquent, I know.  It has been an interesting two weeks since I first got the news.  I still vacillate between anger and acceptance, and I think that is going to last awhile.  

I wanted to wait until my doctor and I had a firm plan in place before posting about this.  So, here it is:  I will go off my Synthroid on June 27th in preparation for a large dose of radioactive iodine (I-131).  I need to be off my meds because my TSH needs to be elevated in order for the I-131 ablation treatment to be successful.  I will start weekly blood tests on July 19th to monitor my TSH levels, and once it is high enough, we will schedule the high-dose I-131 pill.  I'm guessing it will be early to mid-August.  Then, I will be able to start my meds again a few days after the I-131.

I-131 is a great treatment because only thyroid cells uptake iodine, which makes it very specific.  We also have the opportunity to destroy any other micrometastases that we can't yet see on the scans.  There are no huge side effects from I-131 apart from needing to be isolated for a few days because of the radiation.  I also may experience some pain/swelling in my salivary glands because of how much of the I-131 is excreted from the body.  Last time I had a large dose of I-131 I lost my sense of taste for about a month.  I'm also going to go on a low iodine diet for 2-4 weeks prior to the treatment.  It's basically a paleo diet, but I need to eliminate Iodized salt, dairy, egg yolks, seafood, seaweed and associated byproducts, and apparently rhubarb--in addition to the continued elimination of grains, legumes, sugars and refined foods.  Meat, veggies and fruits, here I come.

The bigger issue is being off my meds and hypothyroid.  They call it "hypo hell" for a reason.  It will probably start about 4 weeks after I stop taking my Synthroid and will continue until about 8 weeks after I start taking it again.  I'll be sleeping 16-20 hours a day, feeling cold all the time, lose my appetite, gain some weight, and lose the ability to think in any sort of useful fashion.  Good times.  The only good thing is that I know there will be an end to it, and I know approximately when that will happen.  That makes it easier.

It's a solid plan, and it will be easier to get through it all this time because I have done it before and I know what to expect.  And of course, all of my friends and family have been wonderful.  I know I can reach out to them at any time, for any reason.  Anyone feel like sending low-iodine freezer meals my way?  :)

Mark Sisson of Mark's Daily Apple wrote a post entitled "Akrasia, or Why You Act Against Your Own Better Judgement."  The last paragraph really spoke to me, but I encourage you to read the article in its entirety.

"Part of self-control is self understading.  Knowing the circumstances that test your confidence.  Preempting the script that tends to play in your head when life gets tough or you have time on your hands.  Only then can you divert the narrative, anticipate your needs, and genuinely tend to your weaknesses before they get the better of you.  It's about understanding within a circumstance that this, too, shall pass.  The power to choose in full consciousness today determines who and what ultimately directs your overall life story."

I'm still trying to process it all.  Sometimes my brain reverts to expletives.  Suddenly I have gone from cancer survivor back to cancer patient.  All I know for now, is that I WILL get through this. 

Let's kick cancer's ass again.

Until next time,
Check Your Neck

Burdens

I just had another one of my biannual endocrinology appointments.  For about 5 and a half months I get to go about my life however I please, thinking about work, food, the kitties...whatever I need to or want to, really. Then, about a week before my appointment, I start to worry about what's coming.  This particular week I was just coming off of an illness, which helped keep my mind off of all of the "what if's" that usually eat at me.

Prior to my appointment, I had the requisite labs drawn and I also was able to have my ultrasound in advance.  I've been pushing for this for awhile because it streamlines the entire process to be able to discuss the ultrasound results at the appointment instead of trying to do it via email after the fact.  I was able to see my blood work results via MyChart before the appointment and the results were great.  I went into the appointment thinking that everything was going to be fine because the blood work was so encouraging, and that was a mistake.  The radiologist found an "abnormal lymph node."  All we can say about it at this point is that it is not the largest node identified on the scan, but it does have a lower fat content than the other nodes.

The next step is to do another Whole Body Scan (WBS).  I will have two Thyrogen injections next Monday and Tuesday.  Then, on Wednesday, I will take a low-dose radioactive iodine pill.  The Thyrogen will artificially elevate my TSH, which is important for efficient uptake of the radioactive iodine by any thyroid cancer that might be in my body.  On Friday, I will have my WBS and repeat my tumor marker blood work.

If the scan is negative, I get to go on my merry way for another six months until my next endocrinology appointment.  If it is positive, we will do another PET/CT to confirm the WBS results.  The PET/CT measures metabolic activity and will "light up" in any regions where cancer is present because cancer cells have a higher metabolic rate than normal cells.  If the PET/CT is positive too, then I will need to prepare for another ablative (i.e. very high) dose of radioactive iodine, and that involves going off my medicine and spending some time in isolation while the radioactivity decays.  We'll cross that bridge if/when we come to it.  It's a solid plan, and that helps me cope.

When I received this news, I immediately reached out to my amazing support system.  I really could not ask for a better group of friends and family.  Most people I told reacted in a stunningly supportive fashion.  I am so very grateful to have all of you in my life.  It does make me wonder if my overwhelming desire to gather my friends and family close to me during this difficult time is a selfish act.

Is it fair of me to share this burden with others when it is not theirs to bear???

I often think about what my future will be like.  A year ago I would have had a hard time doing this because I didn't have a very positive outlook.  Now, since discovering Mark's Daily Apple and making a big lifestyle change, it's fun to think about what things will be like in 5 or 10 years.  I get excited about what is to come instead of constantly worrying about how I feel now or how I will feel in the future.  I have influenced my day to day life in a positive way and that gives me hope.

It is difficult for me to maintain my sunny outlook when these test results smack me across the face and force me to acknowledge all of the other possible ways my future could look.  What if my cancer has come back?  How many surgeries will I have in my lifetime?  How many RAI treatments?  How many months out of every year will I have to be off my Synthroid and therefore non-functional?  It's during these times that I reach out to my friends and family--and holy crap do they reach back.  I realize just how much I need them and it is completely overwhelming to me.  I don't know how I would get through this without the support system I have--and does that make me selfish or sane?  I'm really hoping for sane.

Until next time, check your neck.