Christmas 2010--over 1.5 years since...

I have separated myself completely (mentally) from the tumor. It is so funny...friends will ask how I am doing but until they do, I rarely even think about the cancer anymore. I still set my alarm to take my Synthroid every day (4 a.m...I like to eat too often during the day to find a time that is 2 hours after I've last eaten and at least an hour before I plan to eat!), and I still play with my scar, but even the Synthroid and the scar are mentally separated from the tumor. I can be aware of my medication and my neck (the scar has recently faded again--it's like it is stable for months, then suddenly I notice that it looks a lot better and more faded), but neither of those "awarenesses" remind me of the cancer. How oddly wonderful is that? I even think of my every 3 month visits to my ENT more to check Synthroid levels than to check for recurrence, which obviously we do too!

Lisa

One year out: Surgery Anniversary

As life got back to "new normal" over the last year, I needed to blog less and less and concentrate on family stuff (normal stuff) more and more. Yesterday was my one year anniversary of my surgery. Funny how I thought about the days as there anniversaries occured...I remembered the day of the original FNA (biopsy), the day I got the results, and now my surgery. I anticipate the next step is the day of the radioactive ablation.

The good news is that all my blood work is perfect and my Chest CT and Neck US were clear. Other than waking up at 6 a.m. every day to take my Synthroid, life is normal...or at least "new normal." I took a picture of my scar's one year anniversary (above). Most people don't notice it at all, although I think it is like a neon sign. Not that it bothers me...scars a by definition tougher than than the skin was before, and so am I. I feel that I can do more than I could before. I too am tougher. Life doesn't scare me as much.

I am 30 pounds lighter than I was at my high point last summer. Being a.) hypothyroid, b.) sorry for myself, c.) having everything taste like metal for a month after RAI, and d.) having no energy to go to the gym packed on the pounds.

I feel good. In the great scheme of things, this wasn't an entirely bad experience.

Looking forward to the next year....

Lisa

Finally hitting me...

I think that this is all finally hitting me...I have been kind of down the last few weeks. Could be that I still don't have enough Synthroid in my system, but I don't feel like myself.

At least I have labs next week, so I can get a dose adjustment if I need it.

I WAS RIGHT!!!

...and now I have lab values to prove it!!! TSH (thyroid stimulating hormone) is supposed to be (although there are some who disagree with the range) between 0.4 and 4.9. If it is too high, you are hypothyroid (because your TSH is trying to stimulate MORE thyroid production--your body is low...it needs more hormone). And...my nuclear medicine doctor said that post-cancer, TSH should be <0.1.


Mine was 53. (Or 530 times higher than it should be!!!)

My doctor upped my dose. Hmmm...go figure...I knew that 4 weeks ago. My Free T4 was 0.8, low or low normal range.


I hope this new, higher dose helps.

HEY! I'm still here---sorry I haven't blogged!!!!!

Hi, all my loyal blog followers! I have been bad...not blogging.


We just got back from vacation (FAMVAC as it is known...a 16 year traditional trip to a state park with 25 - 40 of my relatives). Mike, the kids, and I started a day early. We spent Monday at Holiday World in Santa Claus, IN, one of the best places in the world. After my scare with blood clots, I was afraid I wouldn't be riding coasters this summer, but am happy to report that I was able to do whatever I wanted, arms high in the air on The Raven and The Legend. About 7 pm I "hit the wall" and got fatigued, but that was the first time all day I thought about my lack of thyroid except for making sure my scar was drenched in sunscreen.


Then...off to Brown County State Park. Monday we arrived at 11:30 pm so we didn't see the group until the next morning. Long story short...I got to spend 3 full days playing with my nephews Brian (age 5) and Ian (age 4) who I hadn't seen since last November.


So, now I am home and trying to get out of "vacation mode" (sleeping till 9:30 every day...far cry from my pre-radiation withdrawl period when I was up at 4:30 am). Next week I finally get to go for my first bloodwork check and hopefully get my Synthroid dose updated. I think I am still low, albeit functional, but my skin is really dry and I still am having weight gain issues. (Considering I got sick with some nasty gastrointestinal bug on vacation for 2 days, I doubt overeating on vacation has much to do with the gain!)


On the basement front (or as I have been calling it, "the Underworld") we are, for all intents and purposes, DONE. I even finished sewing the curtains and pillows. Of course, as time goes on, we'll add more furnishings, but the construction is COMPLETE. I love my craft room...I can leave all my stuff out and close the doors and no one will bother it (at least not if they value their life!) And my little TV/DVD player in there is wonderful when I am working on a project.

Feeling Crappy: may as well blog

Warning: the following has been written while PMSing and feeling like crap. Read at your own risk.


Welcome to Day +15. I still have all the taste alteration issues and now my skin is drying out (I am having "winter skin" in July--ugh), I am gaining weight, feel like a big balloon, have too much to do, time to do it, but feel like doing nothing. I have 4 more weeks until my next appointment with Dr. Myers, won't adjust my Synthroid until then, and I'm not sure the annoyance factor is tolerable. I want everything right RIGHT NOW. I feeling like I am wasting my summer.


Anyway, yesterday evening Mike, Anna, Josh, Anna's friend Kasey, and I went to the US National Swimming Championships at the Natatorium and got to see Michael Phelps break a world record (so I guess we are doing something fun!!) I just wish I had more energy.

Day +10; feeling OK

I have been on just the Synthroid now for 5 days (no "tide-me-over" Cytomel.) Although so far I feel pretty normal, my tongue feels numb at the tip (more like I burned my tongue) and I have a metallic taste in my mouth still. I was doing a bit of searching today and this might not be because of the radioactive iodine, but is a symptom of being hypothyroid (it is called "Burning Mouth (or Tongue) Syndrome). I hope it goes away as the Synthroid gets into my system, because a lot of stuff tastes funny. Strong flavors seem to be better (salsa tastes really good, but chocolate is just so-so; ham tastes good, but turkey is bland, etc.) Lemonade with extra lemon tastes great, plain water tastes like metal.

My doctor said that he usually low-ball estimates the Synthroid until the first set of blood tests (TSH and T4) are done and adjusts from there. (Too high can cause blood pressure and heart rate issues, among other side effects). I have a feeling with my size that 125 mg is probably a bit low...but we'll see. My body has a habit of metabolizing drugs oddly.

We spent the 4th of July at my in-laws and had a wonderful, relaxing time. I love going there...naps are not only accepted, they are encouraged!!! Fortunately, cheeseburgers and hot dogs are foods that still taste good!

My husband and several of his brothers, besides trying to kill the rest of us by not reading the directions for one of the fireworks, set off some great fireworks this year. If there is anything more dangerous than one Francis man not reading directions, it is 4 of them (Josh being one of them) not reading directions. Happily, the rest of the fireworks went up according to plan and we had quite a show. Anna, my niece Courtney, and I took shelter behind the pine trees until we felt like the men had it under control. Everyone survived.

Day +5: Out in public: no longer a menace

I am back among the general populace. The radioactive iodine was not too bad...I stayed in my basement craft room for 3 nights. I watched a lot of really (I mean really) bad movies, slept, drank copious amounts of water/diet soda/lemonade to flush my system from any leftover radiation, and of course, peed--a lot! My stomach was upset on Friday and Saturday...not sure if from the iodine or from the steady diet of fast food and take out that my family provided me with.


Friday till Monday I had a metallic taste in my mouth and food tasted funny, but it seems to have resolved today (Tuesday). I am still drinking lots of lemonade (with extra lemon juice to make it more sour. The sour candy and lemonade are thought to help the salivary glands keep from getting plugged up...from the iodine more so than the radioactive part).


I am feeling pretty good today. I went back to work and cooked a REAL, NON low iodine meal. Now the fun of tweaking the Synthroid dose begins (I was told to take 5 days of Cytomel along with the Synthroid to jump start things...it takes about 3 weeks to establish a decent blood level of Synthroid, so there still may be ups and downs).


So thus I begin the rest of my life as a "cancer survivor"...please keep praying that I am among the 80% of patients who do NOT have a recurrence after radioactive ablation therapy!!!

Officially Radioactive!!!

Buzzzzzzzzzzzzzzz...I am officially radioactive for the next 3 days, since precisely 11:45 am this morning. The good news is that there was no indication of any thyroid tissue except the leftover from the surgery (which is normal since you don't want to cut things like nerves, other glands, etc.)

The I-131 (radioactive iodine) will now go to work to ablate (destroy) all that remaining tissue.

The treatment itself was anticlimatic...a small vial of liquid to drink and then home. I need to stay away from my family (in passing is fine) so I am staying in my new basement craft room which is complete, as of yesterday, and is stunningly beautiful.

I can go back into public on Sunday afternoon.

The best part of today was getting off the low iodine diet and eating take out...in fact, I'm not supposed to prepare food for other people for 3 days (what a change from the past 2 weeks!). I think we'll eat a lot of take out in the next few days.

Day -1 1/3: Tomorrow is the big day

I have labeled this T-1 1/3 instead of T-2 because I now have really good information about what is going on. I just got back from Radiology where I took my "Tracer Dose" of Iodine-123. Tomorrow I go in, get scans and then (most likely) take my therapeutic dose of I-131. But the good news is that after that, I can go off my low iodine diet almost immediately. (Do I smell Pizza in my future???)

Day T-5: Strike while the iron is hot

I'm not even sure where that phrase came from, but it has become my motto. Welcome to Day 12 of hypothyroidism. I am your host, Lisa Francis.

Today my parents and grandma are visiting so I am recreating my Spaghetti dinner for them. As what has become usual, I woke up at 5:30 this morning (after an 11:30, yikes!, bedtime). By 9:30, I had 3 lbs of hamburger browned, the sauce made and simmering, the chocolate fudge pudding cake ready to go into the oven, and the 2nd batch of bread ready for its second rise, not to mention 3 loads of laundry done. I had unloaded and reloaded the dishwasher, put away the 2nd load of dishes and am deciding if I have enough time to stain my pocket doors. When I have energy, I have it all at once. Will I still be awake at 2:00pm?? Probably not.

When the fatigue hits, it hits hard and fast, but I know that I absolutely have to sleep. But otherwise, I feel pretty much OK. I notice that I get a lot more head rushes if I get up and down too fast, but otherwise, frankly, I am shocked at what I can do. But I never, ever take it for granted that I'll be able to do it tomorrow.

Hopefully, I'll be back on meds by the end of the week or early next week and be able to even out a bit.

T-7: 10 days without Thyroid meds

I think I am starting to feel this whole hypothyroid thing...walking to the breakroom to heat my lunch was like running a marathon...although food seems to help, so I am hoping to get another burst of energy to get me through the afternoon.

Weight is starting to creep up even though I have not been eating junk and watching portions. UNFAIR!

The Accidental Chef, T - 10

On the plate: chips and salsa, chicken fajita with onions, peppers, salsa, small plate: apple berry salsa with cinnamon and sugar matzo. See, so tortilla or cheese on the fajita!!

OK, this post is actually being written on T-9, but it is 4:30 in the morning and I meant to do it last night.

Once again, I am beside myself with glee, merely for doing what most people do all the time...cook a great meal. I do, however, have a greater appreciation for restaurants now and will never take for granted all the work that they save me!

Anyway, last night (or should I say all day yesterday) I made chicken fajitas with onions and peppers, homemade fresh salsa, homemade tortilla chips (made with corn tortillas which had no prohibited ingredients), apple berry salsa, cinnamon chips (which I could not eat, so I put cinnamon and sugar on a matzo and used that--turned out well) and finally, after a week of NO CHOCOLATE, I made a chocolate fudge cake (in the low iodine cookbook, but almost identical to the "chocolate mess" recipe I make all the time.

Surprisingly, I am still feeling rather well. Besides all the cooking, I got a lot of painting done in the basement. I am a bit more tired, and falling asleep about 9 pm, but I am waking up so darn early and not being able to go back to sleep. From most accounts, people sleep a lot during this time, but I really have been sleeping worse at night and minimally during the day, although I am taking more rests between tasks.

The hardest part is not knowing whether or not this is as bad as it gets or if the whole thing will unexpectedly catch up with me without warning. So I thank God emphatically that I expected to feel like crap for this period and I have had no meds for 7 days so far and have had 7 really good days.

Tonight: leftovers. The Accidental Chef is taking a break.

Silver Lining, T-13

Do you have any idea how much sodium is in food? Even "fresh" chicken and some pork can have lots of added salt. If nothing else, I will always be more conscious of what I am eating. Maybe with this new awareness, I can lower my bp somewhat.

Ahh...Day 4...starting to feel the effects of no thyroid med...a bit tired, but OK. It is a busy time making bread and everything from scratch. I think I'd be tired under normal circumstances!

So, today Josh made a loaf of bread (I can't eat), I made the cinnamon bread from the Low Iodine Cookbook (more like a dessert/coffee cake). Then I decided that I'd made Italian Beef for sandwiches for supper tonight, so I had to make French bread to serve it on. I never even thought about making the French bread before, but it was easy and looks excellent.

Tomorrow: pot roast with carrots, onions and potatoes (no skins, potato skins are BAD BAD NEWS on a low iodine diet, but the inside is OK). The trick will be deciding how to season it since I can't use onion soup like normal. I also want to try making homemade pork breakfast sausage for pancakes and sausage (dinner Monday night) and apple berry salsa with homemade chips.

Day T -14: The joy of PB&J

I have rediscovered the joy of peanut butter and jelly. Of course, this sandwich is made with no sugar/no salt natural pb (which the regular grape jelly makes palatable) and on thinly sliced (thanks to the electric knife) homemade bread. So the meal count is 8 low-iodine meals down, 40 to go!

I am getting better at the bread baking thing...I am very thankful for my bread machine...even when I use it in the "dough only" mode.

Low Iodine Diet: part 2: Lisa can cook!!!!

Look what I can do when I have to! I can cook! Since I can't go out, and I can't use processed foods, I have to make things from scratch...so, for the first time in my 42 years, that is HOMEMADE spaghetti sauce (I might never go back to Prego, but the kids will), homemade rosemary bread, olive oil with pepper to dip it in (no butter or margarine allowed) and homemade balsamic vinigrette salad dressing (which tastes exactly like The Old Spaghetti Factory's dressing. Since I can't have milk, I'm drinking OJ with calcium. Best part is that I froze 5 portions of spaghetti sauce for a quick meal that I can eat even if the family is eating something else. I am so glad this is the summer...this would be really hard if the kids were in school with activities and stuff.

Last night I made Pork Chops on the grill (and froze the individual left overs), Asian veggies, grapes, applesauce. The chops were really good. I might have the only family that looks forward every year to the 2 weeks of Low Iodine Diet.

...of course, this is only day 2 so I may be sick of it really really soon.

Tomorrow's plan is grilled chicken and cinnamon apples. I am loving the Low Iodine Cookbook, but also finding it fairly easy to adapt many other recipes...substituting olive oil for butter, for example...but I do miss CHEESE!!!!

Low Iodine Diet, part 1

T-16 (They tell you it is for 2 weeks...but with a day prior for the tracer for the scan and at least part of the day of the ablation, I counted 16 days)

Last night, I couldn't sleep...OK, that was the gallon of iced tea I drank at Beef and Boards during my "last hurrah," but also I kept dreaming that I woke up and ate all the wrong foods!

In reality, I am off to a good start...thanks in part to the fact that my normal breakfast (Coco Wheats with peanut butter) is not on the restricted foods list, although it is different with no sugar/no salt peanut butter...had to add extra sweetener to it. Orange Juice instead of milk, not the end of the world.

I've been snacking on nuts (no salt, but that is how I prefer them anyway, and the protein boost should help keep energy levels up a bit). My low iodine corn muffin was great (added extra sugar to the recipe), and I am currently enjoying no salt peanut butter and strawberry jam on homemade low-iodine bread (I must learn to cut my bread slices thinner...I think I'll use the bread machine for the dough and do the 2nd rise and baking in a regular pan in the oven.) I'll probably depend more on fresh fruits (a habit I'd be happy to keep). And...I have an excuse to make homemade kettle corn (sweet/salty popcorn) with non-iodized salt because it is something I love and actually am allowed to eat!

Now...about dinner...yikes!

...And thus it begins: The new T - 16

Today I start my low-iodine diet and withdraw from my Thyroid hormone. This is the worst part of the treatment...being hypothyroid for about 2 weeks.

There is a method to avoid this part, by taking synthetic TSH (thyroid stimulating hormone), but the research is still out as if this approach is as effective in catching any lingering cells. My doctor doesn't like to do it that way, but he was open to letting me make the call (how cool is that!)

Believe me, I researched and researched, prayed, thought, and talked it out...and decided to give myself the best possible chance at never having to do this again...I would hate to have taken the easy way out, and then regretted it later.

I think I have my radiation on the 25th of June, but there was some confusion as to my scheduling, so I am waiting to hear from my doctor today if what was scheduled was actually what is supposed to happen.

Still no concrete date for Radioactive Ablation

I still don't have a concrete date for the radioactive ablation treatment, but it will probably be around the 25th of June...I am actually looking forward to getting this over and getting the dosage of Synthroid figured out so I can feel normal in the long term.

Lately I've been feeling almost too good...wired and tired sometimes, but I feel like I am going a mile a minute. My BP is a bit too high, so I get to add yet another drug to the regimen.

I am beginning to plan for the low iodine diet I have to be on for 2 weeks prior to the radioactive iodine. I can have salt, but it has to be non-iodized, so most commercially prepared products are out if they are made with salt because there is no way of knowing from the label if the salt used is iodized or not. That means Josh (who likes to use the bread machine) and I will be baking homemade bread with approved ingredients (there is a whole list of other things...NO MILK OR DAIRY AT ALL, NO EGG YOLKS, NO SOY OR SOY OILS and lots of other stuff) so this will take a bit of planning. I am going to go through my pantry and put stickers on everthing that is OK for me to eat so I don't have to think about it when the time comes. The Thyroid Cancer Survivors' group has a cookbook online, which I have printed and has some great ideas/recipes. For two weeks, that is 14 whole days, I will be a Lisa no one has ever seen...the Lisa who cooks from scratch! UGH!

Day +17: What happened to May?

The month of May totally got away from me...it went so fast! I bet September will sneak up on me fast too...and the summer, which has yet to truly begin, will be ending.

I have no restriction on my arm, so I can do whatever I want with it. Lately, that has been painting trim work for the basement. The basement project is coming along nicely, but a little slower than we thought...of course, I wasn't a huge help for several weeks recently. At least there is light at the end of the tunnel.

I should have more concrete dates for my radioactive iodine treatment after my appointment with Dr. Myers on Wednesday...then I can start making better plans for the summer.

Other than my BP being a little higher than it should (hmmm...can the all-chocolate diet have anything to do with that???), I am doing well and feeling well...please pray this continues. My primary care physician put me on yet another blood pressure med, but some of the elevation could be due to the drugs I am currently taking. I do feel a bit wired and animated, but then I hit the wall and sleep. Hey wait! That is not much different than in my pre-surgery days.