Friday, August 28, 2009
Finally hitting me...
At least I have labs next week, so I can get a dose adjustment if I need it.
Thursday, August 6, 2009
I WAS RIGHT!!!
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.
Tuesday, July 28, 2009
HEY! I'm still here---sorry I haven't blogged!!!!!
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.
Friday, July 10, 2009
Feeling Crappy: may as well blog
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.
Sunday, July 5, 2009
Day +10; feeling OK
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.
Tuesday, June 30, 2009
Day +5: Out in public: no longer a menace
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!!!
Thursday, June 25, 2009
Officially Radioactive!!!
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.
Wednesday, June 24, 2009
Day -1 1/3: Tomorrow is the big day
Sunday, June 21, 2009
Day T-5: Strike while the iron is hot
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.
Friday, June 19, 2009
T-7: 10 days without Thyroid meds
Weight is starting to creep up even though I have not been eating junk and watching portions. UNFAIR!
Wednesday, June 17, 2009
The Accidental Chef, T - 10
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.
Saturday, June 13, 2009
Silver Lining, T-13
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.
Friday, June 12, 2009
Day T -14: The joy of PB&J
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.
Thursday, June 11, 2009
Low Iodine Diet: part 2: Lisa can cook!!!!
Wednesday, June 10, 2009
Low Iodine Diet, part 1
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
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.
Thursday, June 4, 2009
Still no concrete date for Radioactive Ablation
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!
Monday, June 1, 2009
Day +17: What happened to May?
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.
Saturday, May 30, 2009
Neck healing, scar fading
Wednesday, May 27, 2009
Frustration, Irritation
I had a 2nd ultrasound on my arm today, with little change (I think...the US took so long I couldn't see my doctor afterward).
I just want them to go away!!!! I want to get all the treatment stuff over and get on with my summer!
UGH!
Saturday, May 23, 2009
My "Second Smile"
This is my scar with no steri-strips. I call it my "second smile." Even though my scar still is kinda swollen (It's like having an extra chin--ugh!!!) it really doesn't look that bad...even after only 8 days post op. Remember, this picture was taken with a flash, so it is more well-lit and noticeable in the photo than in real life. I read on the net that in 6 months it will really start to fade and be even less noticeable, but for now everyone gets 2 smiles from me!!!!
Next Wednesday I have another Ultrasound on my arm to make sure that the clots are getting better (or at least not getting worse), and will probably schedule my radioactive iodine treatment and scans. Right now, I am more concerned about the 2 weeks of being off my thyroid meds and being hypothyroid (fatigued, etc.). From what I read, side effects of the actual radioactive iodine aren't too bad. I am seriously considering what my co-worker did and go on "retreat" to a hotel for 3 days...I'll let you know what I decide to do when I have more information.
Thursday, May 21, 2009
You are not going to believe this--GOOD NEWS
After next Wednesday's ultrasound, if my arm is not getting better then we will reassess at that point.
Oh, and if you ever need an ENT, I HIGHLY recommend Dr. Myers!!!!
Wednesday, May 20, 2009
Tuesday, May 19, 2009
T +4: My day in the ER
Long story short: after 5 hours in the ER and an ultrasound of every vein in my left arm, I get 5 days of injectable Lovenox and 3 to 6 months of Coumadin. Probably because a nurse botched my first IV attempt and blew the vein, along with other risk factors. Yes, I am mad because I don't think it had to happen.
On the good note, the nice doctor (a colleague of my surgeon who was on call) let me see my path report and all my tumor was encapsulated and not spilling out into other tissue so it is most likely ALL GONE!
So, the moral of the story is find a really good nurse to start IVs and DON"T BUMP ME FOR THE NEXT 6 MONTHS BECAUSE I WILL BRUISE EASILY.
Sunday, May 17, 2009
My T-shirt

Saturday, May 16, 2009
I'm home!!! T +1
Clarian West was lovely. The room was great, the staff awesome, and the "room service" food was really good. It certainly makes one feel better than the institutional-type hospitals of the past.
Thanks to everyone for all the well-wishes, prayers, and help. I have the greatest friends and family in the world.
Friday, May 15, 2009
Feeling good
Surgery went well
Wednesday, May 13, 2009
Bravado Declining
Tuesday, May 12, 2009
Want this over
Come to be reminded that my Brother-in-law had the same thing last year. Funny how for being so rare, I know people who have been there.
Friday, May 8, 2009
T -7
Wednesday, May 6, 2009
T -9
Many thanks for all the kind emails...especially to my friend Linda who wrote about her experiences with total thyroidectomy. It is so nice to hear from those who have been through it.
Monday, May 4, 2009
How did I find this out?
By the way, if you ever have to have a fine needle aspirate (type of biopsy) done, it really is no big deal.
I have to admit, I am sort of put out about the fact that my primary care physician didn't feel the nodule, as it was palpable and she did the whole neck exam in March.
Moral...if you don't agree with your doctor, insist on a visit to a specialist.
The countdown begins
My coworker who had this was back at work 3 days after surgery. If she can do that, I should at least be able to function!!!!
Friday, May 1, 2009
Chocolate
OK, I confess. I made up the part about chocolate being the best therapy possible, but I am sticking with that theory until it is scientifically disproven!
Thursday, April 30, 2009
Scar
Yes, I will have a cool scar on my neck! (But not as cool as the scar my friend Angie has on the back of her head and neck from her 2 recent brain surgeries--but that is another blog).
FAQs
1. What is the prognosis? A: If you have to have a cancer, this is one of the best types to get! Depending on what you read, 93 - 99% of people survive this. (I personally believe in the 99% statistic!) Besides, my doctor has been treating this for 16 years and he has never had a patient die from it. I specifically told him that there is NOT a first time for everything!
2. What is the treatment? A: Surgery. On May 15th, I will have my thyroid removed. This means I will need to be on thyroid meds for the rest of my life. I will most likely be in the hospital for a day or two. (My co-worker who had the exact same thing was back to work on day 3.)
Sometime after that, I will have radioactive iodine treatment. I will need to stay away from people for about 3 days, but since only thyroid tissue takes up iodine, any remaining tumor will be detroyed. During this period, I am temporarily changing my name to "Chernobyl."
3. How do you feel? A: I love this question! This "Thing" (the name I've given the tumor) didn't pop up overnight. It has probably been there for years, so I physically feel exactly the same as I have for all that time. Now that I know it has taken up residence in my thyroid, I am EVICTING IT. The papers have been served and the THING is leaving on May 15th!!!! Emotionally I have my ups and downs, but as long as I am surrounded in prayer, I'll be fine! (It is probably a better question to ask Mike how he is able to tolerate me--I always knew he was a saint!)
4. What are your rules for us? A: NO PITY PARTIES ALLOWED! Occasionally, I will give myself a brief pity party, but I will let you know if you need to participate! Actually, pissy-parties, where I get really pissed-off at the whole situation are more common. Anyone caught having an unauthorized pity party will get punched in the nose!!! (But, I know a good otolaryngologist if you need to have your nose fixed...)
5. Any more tips? A: Don't behave any differently towards me...I'll let you know if I don't want to talk about it...ask questions! Be forwarned that I will probably bore you with the more mundane details of my "normal" life.