Oh, I suck!

Geeze! I just realized that I never updated on my scare!

Turns out that it's not a recurrence. It seems to be something neurological, but because of the new insurance, I can't get the meds the doc wants me to take. Kind of frustrating, but what's a girl to do, right?

Thank you for all the thoughts and well wishes! Ya'll are awesome!!

Really?

Hmmm. Menopause. Really? Already? I guess it's a good thing. I think it's a good thing. I thought that I wanted it so that that torturous bitch would stop visiting every month. But I wanted it on my terms. Sonofabitch.

Who knew? Who knew that autoimmune thyroid disease, I131 treatment and rheumtoid arthritis are all factors in triggering premature menopause? I sure didn't. Evidently NONE of my docs did, either. Just another one of those side effects that they neglect to tell you about, huh? Oh well. At least I know I'm not pregnant.

Fear is a four letter word.

Here I am again, facing that nasty four letter word that I have worked so hard to get past. For a week or so, the right side of my neck, the side where the cancer was concentrated, both in/on the actual thyroid and the metastasis, has been hurting and slightly swollen. It's not a muscular or nerve pain, as my GP quickly figured out (I have full range of motion and then some), and the nodes felt slightly enlarged, but I have no fever or other indication of infection. My WBC, while on the semi higher side of normal, is still well under the cutoff. So she did what any good GP would do when dealing with a cancer patient - she ordered a neck ultrasound and told me to get into my endo's as soon as I could.

I called on the way home and scheduled an ultrasound for Monday. Then I called the endo's office to try to make an appointment. They told me that the best they could do was almost 2 weeks out, so I asked them to connect me with the voicemail of my endo's nurse. I explained the situation, and asked her if there was any way she could get me in sooner, as I am quite nervous. This was at about 4:30 Thursday afternoon, so I expected to not here back from her till Monday, or this evening at the earliest. However, she called me around 11 this morning and set up an ultrasound with the imaging center that I have gone to for my biopsy and previous thyroid ultrasounds. For Monday. SHE set it up. She also told me that she will get me into their office for the first cancellation she can. Now, this nurse, Nurse Cindy, is not an alarmist. At all. Neither is my endo, Dr. Martin. So for them to act this quickly makes me a good bit more nervous than I already was.

So what could the neck pain be? Well, I don't know. I do know, however, that the nodes of the neck are the next logical location for metastasis, and that the pain and the concentration of malignancy are on the same side. However, I had a scan in November, and it was completely clear, so who knows. Maybe it's just some fluke thing. All I know is that, right now, I'm freaked out. Completely.

Taking some time for myself

After the last scan and the surgery and the flare ups, I've decided to take some time for me. I watched "How to look Good Naked" today and decided to submit. So now I'm in the running for a trip to NY for a make over and someone to help me to feel better about myself. It's based on people voting, though I'm not sure when the voting ends. it would be great to be able to have someone tell me, though, that I'm not as hideous as I feel. I think that that's been one of the hardest parts of all this.

LID Sanity saver!!

Now, I haven't tried this yet, but will probably make it either tomorrow night or Friday for the weekend. I got this from the Beer and Fiber board on Ravelry, courtesy of the lovely lady who posted it there (not sure if she would want her name plastered on my blog!). It is, to the best of my knowledge, LID friendly, and may just be the answer to my chocolate craving that threatens to overtake me right now!

**notes are hers, not mine**

Here's a really good recipe for Chocolate Stout Cake--it's super easy and just happens to be vegan as well. The result is a dense, rich, and moist cake with a chocolate flavor enhanced by the stout. This is a pretty big cake; I think I used an 8x10 pan and if I had a larger one, I would have used it! The cake rose quite a bit as it baked. I found this on the web, but have since lost the link.

2 cups sugar (I reduced the sugar by about 1/2 cup)

3 cups all-purpose flour

1/2 c cocoa

1 tsp salt

2 tsp baking soda

3/4 c oil (I used a little less; maybe about 2/3 c)

4 tsp vinegar

1 tsp vanilla

1 bottle (12 oz) beer (I recommend a dark stout or chocolate stout; I used Fort Collins Brewery's Chocolate Stout)

1/2 c water

Sift all dry ingredients together into a large bowl and make three wells in the dry mixture (one large and two small). Pour the oil into the large well, and the vinegar and vanilla into each of the small wells. Pour beer over mixture, add water, and mix well.

Bake at 350F for 25-35 minutes in lightly oiled pan.

It has begun!

The LID, that is. I went out with my girlfriends for fondue last night for Beth's birthday, and thank god. The food was wonderful - absolutely LOVE Colorado Fondue Company!

Anyway, this morning I woke up to no coffee because I can't have half and half, and I don't like my coffee black. Then I had to go to the grocery to get something to eat because I didn't have time to go shopping yesterday. So already, the day started out crappy. I just roasted a chicken, though, and made some orzo for my lunch. I also munched on some dried fruit. I think that, even though I told Hans I wasn't going to, I'm going to make some biscuits. I just can't live without something to eat that I actually want.

In need of validation....

You know, it's been a little over a year since I was diagnosed with thyroid cancer. One part of my brain is amazed that it's only been a year because it feels like it's been a few, what with everything that has happened since the diagnosis. Another part of my brain can't believe it's already been a year because of how quickly everything happened. And then there's that part of my brain that says that a year just isn't long enough to have come completely to grips with all of this.

Here's the deal, the reason that this is all being hashed out in my head right now. I start my LID (low iodine diet, for those not proficient in thyca-ese, in preparation for a diagnostic scan)on Saturday. Technically I should be starting it tomorrow, but a) I had surgery on Monday and haven't done my shopping yet and b) my best friend's birthday celebration is tomorrow night at Colorado Fondue Company. Then there's the other little issue - Hans and I have been arguing about the LID and how I should do it.

I've been (successfully) doing Atkins for about a month now. I stopped on Monday when my face was sliced open because, well, I feel that when you have surgery, you should be able to, to a great extent, eat whatever the hell you want. I'm on drugs, I'm in pain, and in this case, I look I put on my Halloween costume 3 days early and forgot to take it off. Plus, before and during the surgery they pumped me full of sugar water, so that pretty much blew the diet without me even doing anything.

The problem with all of this is that Hans thinks that I should attempt to not only follow the LID, but to low-carb the LID. Now, while I'm sure that it could be done, the LID is restrictive and depressing enough without putting anymore limitations on what can be consumed. As it is, I have to go 2 weeks with nary a bit of dairy, not as cheese, yogurt or whitener for my coffee. Also off the menu is soy in any form but oil, and even that is debatable. Meat is limited to 5oz of fresh, non-commercially marinated or brined, which pretty much excludes most commercially available (here) chicken. So, I decided that, instead of living off of tomato biscuits, like I did most of the two weeks in April, I would stick to fresh fruits and veggies, and my 5oz of meat a day. Still, hans thinks I should cut out the fruits, in addition to the biscuits, cornbread and bread I would have normally made myself, and spend two weeks eating nothing but low carb, low iodine veggies. He can't understand why his arguing me on this upsets me so much that, even thought I have taken a darvocet, a benadryl and a xanax tonight, I can't sleep.

So I laid in bed for a while, stewing and steaming over how insensitive he was, how he didn't understand what this is like. Then I realized that that is exactly the problem. He doesn't understand what this is like. He doesn't get that, while in his, and evidently 90% of the people I associate with's heads, it's been a year and I should have accepted all this by now, I haven't. I'm still adjusting, still grieving, still scared. I put out the brave face still because I can't burden anyone else with my imagined neuroses, so everyone thinks I'm fine. They ask and I tell them I'm fine. But I'm not. Outside, I'm smiling and positive. Inside, there's a little girl curled up in a ball in the corner, hiding and crying in fear, anger and frustration.

It's cancer. My god, I have cancer. Even though there wasn't anything showing up in the pictures in April, even though I hope that there won't be anything showing up in a couple of weeks, I will always have the distinction of having cancer. And every year, I'll take 2 weeks, eat a limited diet so that my body is starved of iodine, then swallow a small dose of radioactive iodine, spend a day flushing every. single. thing. out of my system, to the point that I wonder if I should take myself to the ER, then spend an hour or two lying on a strip of metal about 18 inches wide, with my arms strapped down by my side and a metal plate sitting mere decimeters from my nose, all the while listening to the sounds of the nuclear scanner and the people in the next room. I'll spend three days unable to hug my daughters because I don't want to do any more to contribute to the chance of them having to go through this than I already have by giving them my DNA. And I'll spend, at least in some part, and at least for the next few years, an entirely too large portion of my time worrying, waiting for the other shoe to drop. Because very few of the people in my life personally that have had cancer have survived.

There should be a "Your Treatment 101"

Seriously. Before you embark on any sort of treatment for any disease, the medical profession should be required to disclose all the potential side effects, not just the ones that are life threatening. The mundane is often the most irritating and troublesome.

I have a clogged nasolacrimal duct. It took nearly three months to get the diagnosis. Three months of my left eye tearing constantly, and perfect strangers asking me what I'm crying about. Three months of wiping my eye and damaging the skin around it because I can't stand the feeling of tears pooling up and running down my face. Three months of not being able to see out my left eye because it's always either full of tears or the gunk that's caused by the tears (think eye boogers you have when you wake up, only constantly and more snot-like. Lovely, huh?). Three months of not wearing makeup unless I want to look like a prize fighter after a losing match. And what do I get for this? Another month of waiting for a surgery that will install a stent in my tear duct, give me a black eye and a bloody nose, and cost me as much out of pocket as my thyroidectomy. All of this, though, I could deal with had the eye doctor not said the magic, piss-me-off-at-cancer-yet-again words - this is very common in cancer patients. Evidently it's yet another ailment that can be attributed to either the surgery itself or the raiation that followed, but most likely the radiation. Lovely. So first it was the inability to taste salt, then the sped up metabolisim leading to the slightly elevated blood pressure. Then the rheumatoid arthritis, now this. What's next?? What can possibly be next?? Nevermind - I don't want to know.

Ah, the joy and wonderment of it all!

So I get to add a couple more things to the discussions of this blog.
#1 - Epilepsy. Fortunately, I'm not epileptic. Unfortunately, my little HeatherE is. It all started out with a three hour long seizure a month ago, only we didn't know in the beginning that it was a seizure. And evidently the doctor at the ER didn't know what to look for in a seizure, either, and just kept scratching his head and taking diagnoses from Hans and I. Yeah. Idiot. Not going back to that hospital. Ever. Thank all that is good and holy that we have an incredible pediatrician, who then referred us to an incredible pediatric neurologist. So now, at 3 years and 11 months, HeatherE is on a daily medication to help keep the seizures at bay, with a lovely diazepam suppository syringe thingy for when the meds inevitably fail. Yay. I'm so very sorry to have passed on flawed genes to you, my dear. Very, very sorry.

#2 - Nasolacrimal Duct and Oculoplastic Surgeon. Yeah, I'd never heard of either of them either, until Friday. That's because last Monday I went in to my GP because my left eye has been watering for over a month now. I just chalked it up to allergies at first, tried some heavy duty prescription allergy drops and took my allegra. Didn't work. The GP looked at my eye and sent me on to the opthamologist. She looked, thought maybe it was just dry, but then realized (after seeing my eye leak profusely) that this wasn't just a little irritation - this is "hey, everyone look at me and ask me why I'm crying" eye watering. One of the only things that can cause unilateral excessive tearing (unilateral means one side for anyone who doesn't know ;)) is a blocked nasolacrimal duct. It's kinda beside your nose. At least, that's the impression I got from the picture that came in the brochure for the oculoplastic surgeon that I have to go see. Of course, she doesn't have any appointments available until September 27. So if I appear to be unilaterally crying, or walking around with my hand over my left eye, pay me no mind - just slowly going even more insane than I already was.

Beyond that, there's the big scan looming again. I'm supposed to go in for it in November, and, well, that's only about a month and a half (not even quite) away. So I'm going to start calling and scheming and planning now - I refuse to let cancer ruin this Thanksgiving, too!

On a happy note, I actually feel human these days. Some of the funk is disappearing from my moods (I said some. I would never assume to be funk-less!!), and I actually have the energy to walk to the bus stop and back without falling over in exhaustion. It's a beautiful thing. I've even be doing some yard work! Now if only the weather would cool off - I'm not used to this heat intolerance thing!!

Reflections

We're currently driving back to FL after picking our daughters up at my parents', as we do every year. It's making me think, though. Last year, we were doing this at pretty much the same time. We had just spent nearly 2 weeks up in the Kentucky mountains, blissfully unaware that our lives were about to be completely upheaved and rearranged.
we drove the 8 hours last year, chatting about inconsequential things - our plans for our "dream home." What we were going to do with the kids the rest of the summer. Normal married-with-kids stuff. Nothing too deep, because we didn't really have to.

We came home, and I went in to my dr's appointment, expecting to hear the same thing I always hear when I go into the endocrinologist - your levels are a little off, so we're going to up your meds and see you in 3-6 months. I had walked into the thyroid ultrasound 3 weeks before that thinking that it was just routine, not worrying about a thing.

Well, I should have been worried. I had every reason in the world to worry. If you're reading this blog, you know that last summer, I was diagnosed with thyroid cancer. It's been nearly a year since I went in for a biopsy on Friday, and got called at 3pm on Tuesday afternoon to come into the dr's office. And make sure my husband was with me.

The past year has been in interesting one, to say the least. Now, usually interesting is a good thing, and I have to admit that there have been some good points in all of this. My husband and I are a lot closer now, and I think I appreciate things more than I did. It's been a really hard year, though, too. Surgery, radiation, recovery, realizing that I have cancer, not getting better when I should have, finding out that the treatment triggered rheumatoid arthritis, learning to deal with my new life.

I had a scan at the end of April - my first post treatment scan - and it came back, according to my doc, clear. I think I trust him. Then again, though, I'm a bit distrustful of most doctor's right now, considering I saw numerous docs over the last 10 years, and not one of them caught this, though it's been there at least this long. That's another rant, though, altogether.

Point of this post? Not really sure. I think it's just a bit of self therapy. Even though all is getting better right now, something about the anniversary of it has me in a it of a strange mood.

Methotrexate

I've been on Methotrexate for a few months now, and have gone through my first dose increase. I think I'm starting to get used to the side effects, but let me tell you, Friday and Saturday are kinda sucking right now. I just have to keep reminding myself that it is a chemo drug, so side effects are expected. Still, sucks. But it works, and that's what really matters.

I'm not a radiologist.

Yesterday was amy appointment with the endocrinologist to discuss the scan and thyroglobulin .








The thyroglobulin was undetectable (Thyroglobulin levels in the blood can be used as a tumor marker for certain kinds of thyroid cancer), and he said what we all thought was my left lung was my stomach!! In other words, for the moment, there was no active cancer! I don't have to do another treatment this summer! You have no idea (unless you're one of my thyca buddies) how good it feels to have gotten my first clean scan. He was very clear that this is just one scan, and one clean scan does not cancer-free make you, but that, for now, I can go back to a normal life. I can actually have my summer this year, move without worrying about it interfering with treatment, and drive!

I go back for another scan in 6 months, and if it's clear, too, I'll go every 2 years. Seriously, I was so happy, so relieved, I cried. And cried and cried. I feel 100 pounds lighter. It's like I've spent nearly a year walking around with a black cloud over my head, and now it's gone!

Thank you to everyone who has said a prayer, kept me in your thoughts or sent me a positive, happy vibe! There is no doubt in my mind that that is why I got the news I did!!

Admire? Inspire? Amazing?

Those are some of the words that people have been offering up to describe me lately. Not sure why, but it kinda bothers me. I guess because I don't see that there's anything about me that fits those words. There's nothing admiral or inspirational about getting sick; neither is it amazing. It's something that happened. I had/have no control over it.
Hans and I were talking about it last night because someone has offered us a very sizeable gift, something that we have wanted but haven't been able to afford ourselves, because of the cancer. Now, don't get me wrong - I am very appreciative of this gift, but I don't understand why I'm suddenly so deserving of the kindness of others.

It just seems odd to me, you know? Hans said last night that it's because people see me as facing this with courage. That that's what amazes them - I have this going on, yet I still do all the same stuff, live the same life. But do I really have a choice? I mean, really, what else would I do? Do other people do something different? I can't imagine anyone with a family acting any differently than I have. Yes, I have cancer. But I still have kids and a husband, a home and cat, friends and neighbors. I don't think that having cancer gives me the right to just stop living.

And trust me, the brave front, the "courage" that people see? It's an act. All an act. Inside, I'm terrified. I have spent damned near a year with a knot in my stomach that is only calmed by xanax. Some days it's tolerable, so I don't have to take another pill. Other days, it feels like a pit of snakes in there, and I have to take a couple. I don't cope well, I just medicate and hide well. I don't want to deal with someone whose life is a drama, so I don't want people having to deal with my drama. And even still, I feel like I let it take over too much of my life, like I talk about it entirely too much. Friends that I've said that too, though (we had a long conversation about this a couple of weeks ago, actually), say I don't. I don't know. Maybe because it's a constant dialogue in my own mind?

Evidently, though, I keep it to myself really well. Hans told me last night that he's proud of me because I am able to hide it from even him most of the time. He even recognized my reason for hiding it from him - I know that he's dealing with his own demons because of this, he doesn't need to have to deal with all of mine, too. And then there's the kids. I can't very well be freaking out in front of them. This is scary and confusing enough for them without me falling to pieces. I still have to take care of them. I will say, though, that I'm looking forward to their trip to Nana and Papa's. Then I will be able to fall apart a bit more.

I guess the point of this is a) I don't think there's anything particularly wonderful about me being sick or about the way I'm handling it. I handle it the way I think anyone would. and b) Hans is actually proud of me.

Out of the Gamma Cam

Yesterday was the I-131 WBS (that's Whole Body Scan for those of you that don't speak fluent cancer). Wasn't too bad (the experience itself). Either the scan wasn't as bad as I remembered it being or my Xanax actually worked (sometimes it does, sometimes it doesn't). I was still a little panicky, but I was able to get through it without completely freaking out, and I didn't nearly pass out when I got off the table this time, either....

I was able to take the films with me when I left, and I also talked them into sending me home with the films from the first scan. Didn't even have to give a reason or anything.... So I have them to compare. Now I understand A) Why Doc M has been saying that I'm definitely having another treatment and B)Why he didn't tell me before the last 2 appointments. Looking at the first scan from back in September, there was a significant amount of uptake in the lungs, especially the left. Yesterday's scan showed no uptake in the thyroid bed at all (yay! No more parathyroid mets [for now]), but still a significant uptake in the left lung. I plan to scan in the films so that I can ammend this post with the images.

So next Friday (May 4th) I'll go in to talk to Doc M. He'll have my Tg results, and if they're elevated, coupled with the uptake on the scan, we'll figure out what's next. I already know that there will be another I-131 treatment this summer; he made that very clear, as did his nurse. However, the question in my mind now is, is this a solid mass that could be excised and then followed up with the I-131, hopefully making for a smaller dosing, or is this something that is microscopic in nature and will have to be treated with an aggressive dose of I-131?

So that's where we stand presently. I'll update as there's more news.

Surviving LID - A Field Guide to Eating Real Food on the Low Iodine Diet

All right, there are a few things that I have learned over the past two weeks that have made things a little bearable..... So I'm going to list a few tips that I have figured out for surviving LID here....


Milk substitute: I have found that coconut milk is a good milk substitute in some applications, such as coffee creamer and smoothies.

Smoothies: Smoothies made with frozen fruit, honey and coconut milk are a good breakfast, snack or dessert. My favorite is the one that I listed the recipe for in an earlier blog.

Stew: My daddy made me a beef stew with 1/2 a pound of beef stew meat and assorted frozen LID approved veggies. It was WONDERFUL!

Cornbread and biscuits: Using Martha White self rising flour, vegetable shortning and water, you can make biscuits and cornbread to help get you through. They're both also really good with the stew above, or with some natural, unsalted peanut butter.

Crisco Butter Flavored Shortening: They make one that comes in bricks like margerine. If you use it sparingly, it's a pretty darned good butter substitute. Makes corn on the cob and the aforementioned biscuits and cornbread even better.

Roasted, unsalted peanuts: a nice, simple snack that can get you through the munchies....



I'm sure there's more, but alas, I have hypo-brain and am distracted by my glowing fingers and toes. If I think of more, I'll update!

Glowing Toes

So I'm radioactive again. Not as much so as before, but enough that they won't let me make meals for anyone or hug or be near the girls.... so Wheeeeeee!

The worst part, though, isn't the being radioactive. The worst part is that, starting tomorrow morning, I have to be on a clear liquid version of the LID. Yeah. Oh, and I also have to drink 2 bottles of magnesium citrate. Have to have completely empty colon for the scan :S

Fun fun.

LID Smoothie

Okay, I can't take credit for this. My husband, the smoothie king, created this the other night when I was crying in frustration. It's wonderful, it's healthy, and it's fairly filling!



3 bananas (I use frozen bananas - peel them before you freeze them!)
1C. frozen straberries
1/4C. honey
1/2 can coconut milk
1/2 can water


Put honey, coconut milk and water into blender. Blend until combined. Add bananas and strawberries, blend to desired consistency. Thicker and you can eat as sorbet, thinner and it's a smoothie.


Thank you, Hans, for coming up with this!

Surviving LID

Oh, boy, LID is hard. I wasn't really able or willing to eat last go round, so I didn't remember it being this tough before. This time around, though, I'm starving.... Maybe I just didn't prepare well enough for it. I tried, I really did, but I kept getting upset every time I sat down to look at the LID cookbook...

So far, though, I have found a couple of things that are helping me through. One of the main ones is coconut milk. Pretty darned versatile, let me tell you... I use it in my coffee, on my fruit, in smoothies and to make gravy.

Just wanted to share that. Lame, I know, but oh well...

Waiting. Again.

I went to the rheumatologist last Wednesday. While I was there, we decided that I should start methotrexate. Only problem is that the rheumie wants me to have the endo's permission to start, as he feels (and I agree) that the cancer is the primary issue and the RA is secondary. Okay, fine, no problem. The appointment was at6pm, so I couldn't call the endo on Wednesday. First thing Thursday morning, though, I was on the phone leaving the endo's nurse a message at 8 am. I waited patiently until 2 on Friday afternoon, then called again, leaving another message. This was greeted with a return message stating that the endo was out of town Friday and Monday, and she would speak with him Tuesday morning and call me Tuesday afternoon. So today's Tuesday. It's not 20 till 5 and I have heard nothing. I just called and left another message, asking her if she had had an opportunity to speak with the endo yet, that I would like to know whether I could start the mtx, or if I needed to call the rheumie back to discuss pain management until after treatment.

It's frustrating. I do what I'm supposed to; I get my labs, I take my meds, I follow their rules (can anyone say LID hell??), and yet I don't even get the courtesy of a callback to find out if I can take my meds or not??

Is this the norm in healthcare these days? I realize that nurses are overworked and underpaid, but I also have very little patience when I know that this particular nurse's primary responsibility is charting calls and returning said calls. Her secondary is patient education in strange situations such as mine. It just irritates me. They have 3 cancer patients. Three. Me and two other people. And yet I can't get a call back.

Sorry, this just frustrates me a bit.

Another update. Kind of.

Here are my two sets of bloodwork from the rheumatologist:


So even though my SED is in range, it has been creeping up, despite taking plaquenil. Not sure what that means, and I was too beat at the appt last night to do much asking.... He has decided, though, that since I can't take prednisone anymore and the plaquenil by itself isn't working - I'm having more bad days than good - that we're going to possibly start methotrexate. That is, as long as my endo agrees to it.

Giving Credit Where Credit's Due

I am frequently pissed off and upset by the hand I've recently been dealt. However, there have been good things. Yes, I had to have my throat slit, and that sucks. But my surgeon was PHENOMENAL. Seriously. Check out this pictures chronicling my scar healing:

One week post op

8 Months post op:

My surgeon, Dr. Ivan Rosado, here in Orlando, did such a phenomenal job. If ever you have to have this done (or any surgery, I should think!) and you are in the area, give his office a call. Not only did he do so well with my surgery and scar, but he and his office actually care. Even when he wasn't on call, when I was in the hospital for hypocalcemia, he called a couple of times a day to check in on me. His office staff is great at getting people in on cancellations and making all the arrangements with the hospital so that you have nothing to worry about on that end.

Also, I need to give credit to Kelo-Cote. What an incredible product. It's expensive, but I definitely recommend it for scar healing.

LID to come

So I got all my paperwork for the scan today (well, yesterday, but I just went to the mailbox today.) with the instructions and the scheduling. Once again the nurse wrote to do the LID for 1 week, but the paperwork she sent on it says 2 weeks. So I think I'm going to do at least 10 days, just to be on the safe side. It sucks, but I would rather be miserable food-wise for 2 weeks than have a scan that doesn't show everything it should. Agreed?

I keep flip flopping in my moods this week. I have houseguests, so that's helping me stay on an even keel because I have that sense of hostess manners. Still, though, I have picked a couple of fights with Hans, and he with me. This is scary. I have to remind myself, though, that he's going through as much as I am in a lot of ways with all of this. That, and work is, um, stressful to say the least, for him right now. So it's been interesting.

All of my appointments seem to be for 10am, with the exception of the followup on May 4, which is at 11. And here's the interesting thing that was in the paperwork - I have to get a copy of my films to take with to the followup, which means I will be able to see my films myself, and possibly even have a friend or two take a gander and give me their thoughts....

So that's the update for today.

Scheduled.

The nurse from my endo's office called yesterday to set up the scan. She gave me a choice of two consecutive weeks. Being that I want to get this the hell over with, I chose the first. So on April 20th, I go in for my pre-procedure bloodwork and start my LID for a week. (I'm considering doing the LID for 2 weeks, though, just to be safe - there are so many varied opinions on that one that I just don't know....). On April 23rd and 24th I have my Thyrogen injections, on April 25th, I have my dose of I-131. Now, according to my nurse, I don't need to limit contact with the girls. Other people, though, are told to limit contact. So this is another of those things that I'm just not sure of. I have the 26th as a so-called "free" day, and then the scan on the 27th, with a possible second scan on the 28th.

During the course of explaining all this to me (yes, it has been explained before, but when she offered to go over it with me again, I took her up on it. Knowledge is power.), she told me that the week after the scan, I would go in for my follow up and results with the doc, and that at that appointment we would schedule my treatment. Again, not if I need another treatment. Just that we would schedule the next treatment at that time. So I called her on that. I told her that I had gotten the impression at the last appointment I had had with the endo that he wasn't hopeful that this scan would come back clean because he, too, was already mentioning the next treatment. And even the next after that. So, knowing that I don't like to be coddled or have things sugar coated, she told me yes, that from the baseline scan, he saw things that indicate that we would have to do at least one more treatment. She reminded me that there was significant metastasis, which I knew, but something about when they say it to you, it just hurts more.

So yeah, there it is. My update for now. April 23-27 is scan week, and the treatment will be in June sometime while the girls are with my parents for a few weeks. Who knows - maybe I can even schedule it all so that we also move over that time, so I can start fresh in a new city and new house.

Yeah.

When to schedule

Okay, so I'm supposed to have my RAI scan (tracer dose) at the end of April with Thyrogen. I have 2 small kids that I have to make arrangements for that week, as well as getting someone to drive me after the first injection.

My question is, how far out should this be scheduled.... because I have to make plans and arrangements for this, I'm thinking that it's not unreasonable to want to schedule it now. My understanding is that they have to order the thyrogen, and it has to be kept at a precise temperature, and that everything has to go exactly as planned. That, and I need to check with my insurance to make sure that they're goingt o even pay for the thyrogen. There are a number of things that will have to be done. Oh, and let's not forget 2 weeks of LID, right?

So how far out did you schedule?

Spoons

Sunday, Tracie and John came up a little early to help me finish getting ready for the party. They walked in laden with gift bags, and I was about to strangle her - there was no need to bring so much! Then she handed me a card and gift bag for me. I still haven't been able to bring myself to read the card completely, but the bag had the spoon bouquet pictured above in it. I cried. I was speechless and I cried.

If you don't know the significance of a bouquet of spoons to me, you should really read this. It explains the spoon theory, something that makes tangible all that those of us who have a chronic illness but don't look or appear ill sturggle with daily.

I'm still trying to figure out how many spoons I have. How many individual tasks take, and what I can do to conserve spoons. I more than depleted my supply over the past week, and am paying for it right now. I have plans of things to be doing, but I simply cannot do them right now. So, I'm doing the bare minimum and sitting on the couch as much as I can.

Anyway, away from the rambling now. Back to the spoons. On each spoon, Tra wrote messages - things for me to remember. Things like, "Always be good to yourself," and "If I could give you more spoons, I would." Things that remind me daily to listen to my body and not overdo; to make sure that I don't use too many spoons too often.

It's a good way to explain the things that we go through. That there are mornings when the mere act of getting out of the bed and walking to the bathroom takes as many spoons as I have for the entire day. But in spite of this, I look normal. There are days when I look tired (everyone around me picked up on it yesterday afternoon, and Friday afternoon, as well), but I don't lokk how many imagine someone sick as looking.

So read the spoon theory, and when you have the urge to say to me, or anyone else in my position, "You look great!" or, "but you don't look sick!" think about this.

Insomnia

Oh, I hate insomnia. I hate not being able to sleep when I'm so tired. I even had marathon (for me in mid flare with limited meds) ex-say, and took half a vicodin thinking that maybe I would take the edge off the pain and wear myself out. Yeah. Didn't work. Oh well. So here I sit. The shittiest part is that I can't crochet tonight, and I can't even really write out my to do lists for the next 2 days. That's something that I usually do to combat insomnia - it settles my brain. I can't find my fat pen, though, so I have my overweight pen. I really want need an obese pen. My neighbor has a couple, and I know my rheumie's nurse has one. Maybe I'll beg one off of one of them.

Pain sucks. I mean really sucks. Seriously, when I woke up this morning, my hands were stuck in a claw-like position. It was so painful to straighten them out, and took me a good 15 minutes to do, but I didn't have a choice. I had to get Al up and ready for school, take my meds and walk to the bus stop. And I did walk. That's one thing I'm trying to force myself to do - no matter how bad I feel, I at least walk to the bus stop and back as long as it isn't raining or below 45 degrees (I've found that 45 seems to be about my threshold as far as cold induced pain goes). So, like every morning, I did what I had to do. And then some. Came home, did some laundry, washed and aired the bounce house for Al's party, cleaned some, made lunch and dinner, helped Al with her homework. While I was making dinner, Hans and I got into a discussion about what's next as far as his job goes. See, this project is almost complete, and there's no more work here with his company. There's a chance to go to NC, but Hans doesn't really want to. I'm not sure if I do or not. But anyway, that's not the point. The point is, one of the things he said was that I can't keep the house clean. I try, really I do, but I just find that I don't have enough spoons most days to get all the housework done. So I try to choose the things that I have to do and go from there. Some days I wake up with lots of spoons and my daily tasks don't take as many. Other days waking up causes me to lose spoons in and of itself. Anyway, that set me off. I try so hard, and I have been busting my hump the past few days, even though I shouldn't right now, because of Al's party on Sunday. And like I mentioned before, today has been bad. So I started crying. And then I tried to open the parmesean cheese. Yeah. Had to have Hans do it for me. I couldn't even open the damned parmesean cheese can. So I went and sat in the closet crying. I hate being like this. I hate being 28 and unable to do the simplest of tasks. I couldn't even crochet today. Days like today make me wish for normalcy again. But I know that I just have to find a new norm - the old me is, unfortunately, dead, and I have to make peace with the new me.

I have found, though, that there are some convenience items that really are helping, to a great extent. The first and most helpful is family - I can have the girls do some simple tasks for me (it kills me to have to ask my 6 year old to open a jar or my deodorant, though.), and Hans is good at opening jars and parmesean cheese and other things I can't, as well as going behind me when I cook to make sure that my brain fog hasn't caused me to leave the stove or oven on or the water running. Then there's my handy dandy little multi-purpose bottle opener that I use for opening any kind of bottle imagineable. I also have a Hoover Floor-Mate and a Black and Decker kitchen scrubber. Both of those come in really handy on bad days.

So now it's one am. I have to be up in just over 5 hours to get Al ready for school and start my day, so I think I'll go give sleeping another try.

Last post tonight

Okay, I know I'm in a bit of a blogging tirade right now, but Tracie and I have been discussing fibro (her) and RA and thyca (me, of course), and it has just got my bain spinning. And if I've learned anything so far in this, it's that if I don't do something as soon as I'm thinking of it, I will lose it. So here goes.

Read this blog of Tra's. It's incredible, and tells a lot. She has been instrumental in making me realize my needs and limitations. I'm not there yet, but I'm working on it.

Just some more info for patients and caregivers

this is a repost of an email I sent out right before my RAI. Maybe it will help some of you.

Warning: this is going to be a very long email. I apologize for that, but lately getting the energy to send out single emails detailing what's going on and what I need has been very difficult. I honestly, most days, feel like I'm 90 years old. Yes, I have a great attitude, and yes, I sound chipper when most of you call or are around, but I have to be honest now. Most of it is an act and I'm scared to death right now. So please, if you have the time, read this email.

First, the update:THe endocrinologist's office called on Tuesday and told me that my TSH levels are now high enough to do teh RAI (radiation), so I started the low iodine diet (very restrictive) Tuesday night, will go in for pre-admission bloodwork on Monday, and the RAI on Wednesday. Still, we won't know anything definitive until the post treatment scan in 6-9 months.We do know, though, that there has been significant metastasis. All the nodules in the thyroid that they found were malignant, as was at least one of the parathyroid glands, and 6 of the 10 central comparment nodes. Based on that, my endocrinologist feels that there is most definitely distant metastasis, since the lymph channels were involved, and they're like the expressway out of the thyroid cavity of the neck. But, like I said, because of the way that the RAI is excreted from the body, we can't really know anything for sure until the second scan in 6-9 months. I am, however, going to insist on a PET scan, if for noother reason than my own peace of mind.

I will be at the La Quinta on International Drive North from September 1-12 in quarantine. I plan to take my laptop and some books and movies and such, but it's still going to be hard.So that's the update.

Feel free to ask questions, but also know that I am very hypothyroid right now, so my brain is extremely foggy. Remembering things is very difficult for me right now, so if I don't return your email or your call, please, forgive me.This second part, and it's the long part, is something I got from my ThyCa (Thyroid Cancer) support group (online). It says the things I can't. All of you that know me know that asking for ANYTHING is painful for me. I just never have been able to easily ask for help of any sort..... So I'm just going to use someone else's words now, because they are exactly how I think and feel.

ASKING FOR HELP:Advice on asking for help may sound like a silly thing, butwhen we are overwhelmed, needing help & support the most,is when it is sometimes hardest to name the thing that wouldbe helpful. And often it's even harder to actually ask for help.Asking for help is a tricky thing. For many of us, it's oftendifficult to ask for even the most simple things ("honey,would you do the dishes tonight?"), let alone larger favors("honey, would you take over my life while I nap for the next2 weeks?").If you have a group of friends who are caring, supportive andlooking for ways they can help you out, you are a lucky person.And undoubtedly you are a good friend to these people, so nowit's your turn to reap the benefits of your own kindness.I know, I know. I'm not very good at it, either.Practice helps. Planning ahead when you don't need actuallyneed help helps (you know that).Make lists of people who can be counted on.Realize that even when you've got it all under control, you'relikely to be disappointed by people you're counting on. Beingdisappointed is, well, disappointing, but predictable. Plan on it.

OTOH, it feels so good when someone comes through. And theyWILL come through, especially when they know what to do. And they'll feel good about it, too.If it's too hard to think of asking someone for help, think of it in terms of doing a favor for the other person; you, who are such a doer...how good can you make someone feel for doing a really minor thing for you?? It may be easier for you to give a list of suggestions to anyonewho asks (or have your spouse or a friend hand it out); that way you won't feel guilty for actually asking. You will probably want to rewrite this in your own style, adding your own ideas.On the other hand, you may feel dismayed because no one isoffering help. I have found that many people want to be supportive,but often truly don't know what to do or say. Chances are they have no idea what you are going through. It's cancer, but it's not. You're sick, but you're not. You've recovered from your surgery, but you're getting more incapacitated instead of more energetic. Immediately after the RAI, loved ones may start circling around you, watching you closely- "are you better yet?" This thyca journey and hypo process is hard enough to understand when you're going through it, it's even more difficult for those have to just watch. I know of one thycan who wrote a letter to her friends while she was going hypo for the second time, explaining as clearly and as detailed as possible, what she was going through, and, perhaps more importantly,what she expected to be going through down the line, and what kinds of help she thought she might be needing.The following is a compilation of suggestions from the listserv,in response to requests from friends who want to help but just don't know what to do.

ERRANDS/DOCTOR APPTS.
- Help me get my bills paid/mailed on time.
- Help me with my grocery shopping. It's hard for me to carry bags of grocery post-surgery.
- Pick up prescriptions and other items at the pharmacy.- Come with me to doctors' appointments and take notes, as this is a lot for me to comprehend.
- Drive me to my appointments and errands until I can drive.
- Pick up /drop off my library books (video rentals / dry cleaning.....)


EMOTIONS
- This is a time of great emotional upheaval for me. Not only have I been digesting a lot of experiences and information lately, but also my hormones are out of whack. I expect to be all over the emotionalmap, without being able to control it, or even understanding it.
- Some days just a hug, or sitting with me, can be a more powerful display of support than any words.
- Be understanding if I'm not acting like the "old" me. (Example, I don't want to go to the mall but I still love you. I don't feel like baby-sitting but don't think I don't care. I forget to ask how your important meeting went, but I'm always rooting for you.)
- Listen quietly when I sound off. There is a lot happening to me and I need to verbalize without worrying about hurting your feelings. But don't worry - I don't expect you to have any answers.
- Share your life with me. I still care about you and what is happening in your life.
- Please hug me, touch me. You can't get my cancer by touching me (or damage my scar). The only time I'm "untouchable" is a few days during and after RAI, and I need to isolate myself to reduce your exposure to radiation.
- Act normal. Just because I'm not myself doesn't mean you shouldn't be yourself. You don't need to put on an act in response to everything I say and do. Don't hide your own happiness. I enjoy seeing it. Be pushy or cheerful or empathetic (but not too much).
- Don't feel guilty because you are well. It's not your fault I have cancer, and I don't resent you for your good health.
- Don't try to cheer me up when I'm depressed. It's normal to be depressed when things are going badly or when the road ahead is muddy.
- Don't tell me that now I have the worst behind me. That trivializes what may be ahead.
- After I am diagnosed, don't tell me I will be fine before you know anything about my cancer or listen to me about what is going on. Make an effort to understand before you dismiss this as insignificant.
- When obvious problems are over, don't assume that I'm fine. I'm still dealing with emotional issues.

ME AND MY FAMILY
- Offer to cook for my spouse, children, significant other, life partner, family.
- Give attention to my pets. Walk the dogs. Change the cat litter. Play with them, take the dog to the park.
- This is a scary time for my family - even more so than for me. Invite them to your home after my RAI and surgeries so I can have some time alone. Even if my children are well behaved, it is a stressful time for them, and just having them around can keep me from gettingthe rest I need. And if they're around all the time, I'll feel guiltythat I'm not giving them what they need.
- Offer to help me change my bandages/dressing. Chances are I won't need any help, but some thyroid surgeries are more complicated than other thyroid surgeries.
- Instead of flowers, send over a cleaning service. Or a massage therapist.[NOTE: this is a wonderful thing, both post surgery and while you're hypo]
- Check in on my garden, maybe even mow my lawn. It will probably be a few weeks before I will be able to bend down or yank on the rip cord without worsening my sore neck.

WHILE HYPO
- When I'm preparing for a scan, bake me a bread with plain salt and no dairy. Or a big pot of stew. Or maybe some low iodine cookies. This is a bit tougher than it sounds, since I will be on a low iodine diet.Ask me for guidelines (or recipes), or go to http://www.thyca.org/ - then"radiation", and the low-iodine diet.
- When I'm hypo and fog brained, don't ask me what youshould do. I will probably not have a clue. If you think something youcan do will be helpful, it undoubtedly will be - just do it
- walk thedog,or do the laundry, or bring dinner over, whatever. I can't rememberor focus on details during this time and you'll need to take control.
- When I am post RAI, stay away until I say its okay to be around me.Please don't make me tell you to stay away, since I will feel guiltyrejecting you.
- "One of the greatest, and most fun, things was the care package mybest friend from childhood sent me for the RAI isolation. It had allsorts of little things to cheer me up -- chocolates, fancy toiletries,small jokes...Really kept me from feeling sorry for myself being in isolation andradioactive."
- While I'm still coming out of hypo hell, but no longer radioactive,invite me to a movie, come have a glass of wine, hang out, if I'm inthe mood for company (and I make no promises).
- Tell me which day (or days) that you can be available to drivefor/with me. There will be at least a two week period when I willbe so hypo that I won't be allowed to drive.
- Send e-mails, checking on how I'm doing and see if I need anything.But don't be hurt if I don't respond - I will still be grateful to getyour notes.

COMMUNICATION:
- Handle phone calls from well-wishers.- Send me an e-mail, postcard, or fax daily. Sometimes I get tired oftalking on the phone and repeating the same thing to different callersbut I never tired of reading a message you've mailed to me..- E-mail all my friends/family who want daily/weekly updates on mysurgeries, RAI, post RAI health.--------------------------------------------------Now. I know this is a lot to ask. As you're reading this,wondering if I'm really worth all this trouble, let me just saythat all of these warnings and requests may turn out to be unnecessary.�I may zip in and out of this hypo hell without feeling a thing.But this is for just-in-case, and I want to let you know what's goingon.The