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 first weeks after surgery shouldn't be too much of a problem,since I'll still have plenty of thyroid in my system.After that, who knows! It could take as long as 5 weeks of spiralinginto hypo hell before my levels will be high enough to be scanned.And it can likely take that long again (or even longer) on the back up.LOVE ME ANYWAYIf I seem cranky or unappreciative for your efforts, please knownow that that's not the case. I love you and appreciate you morethan I may ever be able to tell you, but I've had a lot on my platelately, my hormones are in upheaval, and I may just be incapableof letting you know how much I appreciate you. Please let this notemake up for all the times I don't treat you as well as you deserve tobe treated.THank you all, and know how much I appreciate each and every one of you.
Love,
Kerry

10 tips for visiting someone who is sick.

I got this list from a great site, But You Don't Look Sick? It's a remarkable site that deals with the people like us, the ones that have to suffer silently because there isn't any real outward signs of our illness, so everyone assumes that we're fine. Add to that the fact that most of us act stoic because we don't think anyone really wants to know how we actually feel, and we end up with hurt feelings and frustration.

I love this article, especially number 10, because it's a truth that most people don't realize.


When visiting someone who is sick, here are some suggestions that may help both the visitor and the patient.

1. Before visiting the patient, phone ahead to let him or her know you are coming. That is just plain common sense. Your friend or loved one will appreciate you finding out a convenient time to visit. Some times a patient has had too many visitors, has gone through painful treatments or just needs to nap. If the person is sick at home and being cared for by a caregiver, knowing when you are coming may give that person a chance to run errands or plan for some personal time alone. At least it will give them a chance to tidy up the room or help the patient get ready for your visit. I know I have wished people had called first when I was receiving visitors, because I might not have been dressed appropriately and a robe or change of clothes would have made me more comfortable, etc.
The simple act of a phone call creates the anticipation of a visit, something to look forward to. Calling in advance also puts the patient in charge. Being sick often results in a forced passivity. When you phone and ask if it is all right to visit, the patient is able to exercise some control in whether they feel up to visitors at that time.

2. Do your research. If the person you are visiting is in a hospital or rehab facility, then call ahead to see when visiting hours are. Ask if there are any other restrictions. Some facilities do not allow children or pets. Find out if it is all right for the patient to receive flowers or food of any kind. You do not want to bring your friend's favorite brand of chocolate, only to find out that they are on a special diet and can not eat it right now. Inquire as to what you are allowed to bring. Can the patient eat food brought in from the outside? Can she have flowers etc? Some patients are very sensitive to perfumes or smells, so check if this is the case and leave those types of things at home. The most important point here is to ask questions.

3. Don’t plan on a long visit. Hospital patients have a busy schedule and sick people often tire easily. It is better to visit briefly but more often, than to visit once for a long time. When the patient tires, leave courteously with a promise to return another time or to call. Stay long enough to put a smile on their face, but not too long as to see their smile tire. Most people would rather have many visits, then one long dragged out one.
This should also help to put the visitor at ease. If you plan on a short visit, you do not need to worry about what to say or how to “fill up” time. A 15-20 minute visit is just long enough to say hello, catch up, help out and leave. You can play a game for 20 minutes, or take a walk. Stay as long as the patient wants.

4. Bring the patient a small gift. This is not about money spent- the gift can be something you made, like a card. Let’s face facts, we all like receiving gifts, especially when we are not feeling our best. A newspaper or magazine can reinforce a sense of connection to the outside world. Besides being pretty- flowers, plants or cards leave tangible evidence of the visit. I remember when I was in the hospital I spent hours looking at my “wall of cards” and reminisced about who came to visit me. It always brought a smile to my face, even if it was days after the person left.
Bring something that can be a distraction after you have left. Crossword puzzle books, reading books, even lotto scratch off’s. Anything that they can easily do on their own. Many places do not allow visitors after certain hours, so your gift will help with the boredom at night and be a welcome relief.
Bring something that will help make the experience nicer. Blankets, new pajamas, slippers, new lotions, soaps, or a soft pillow can make the time spent in bed for a patient more enjoyable. Gifts like these will be much appreciated. Ask nurses or caregivers if it is ok to give the patient food or treats. Bring the patient their favorite candy or snack. If they are having appetite trouble maybe a gift of their favorite food might help.

5. Have Fun. Bring an activity with you. Sometimes we learn the most about someone while doing something together. It takes the pressure off coming up with conversation, while providing a non-threatening atmosphere. The focus becomes the activity and not the person and their disability and that is refreshing. It could be a board game, craft activity, movie, or even food. If the individual has a computer, you could surf the net for helpful resources or community services. Bring the newspaper and talk about current events. Give her a manicure or fix her hair. Bring a friend or children to visit. Be creative.
Some of my best memories in the hospital were when my mom played Scrabble with me all night until I fell asleep. It was great to get my mind of being sick and it also was a great way for us to pass the time.

6. When visiting, help with concrete tasks. After getting the sick person’s consent; help by straightening the bed, watering plants, straightening up the room, or any other chore that helps the patient or makes their surroundings look well attended.
It also might be helpful to offer to do things in the “outside” world for the patient. When we are sick, we do not have the energy, ability or time to do simple things, but quite often those are the very things we worry about not getting done. Picking up mail, helping go through bills, watering the lawn, or even cooking meals, can truly make someone’s day. What might seem like an easy task for you can really help someone who is too sick to do these things for themselves or their own family.
It is very hard not to be able to do for yourself. Many times when I am not feeling well, I might be too embarrassed to ask for help, but I am very happy to accept it when it is offered.

7. Don’t be afraid to sit in silence. As with any situation where we are trying to bring comfort and friendship to someone who is suffering, the primary statement we can make is not through any words we speak, but through our presence. Do not force conversation, but let it come naturally. Fight the need to fill up every bit of silence. Just being a good friend and making the effort to be there is enough.
If you can’t think of anything to talk about, feel free to simply say, I love you, I care and I am here for you if you need me. Those few simple words will mean more to the person then you will ever know, and will definitely be better then making up chatter.

8. Help the Helper. Besides being the patient, there is nothing harder then being the primary caregiver. Most times these are the people that are right there with the patient, often both day and night. The caregiver has the daunting task of trying to juggle the life outside and the life with the person who is sick. Usually they are going on little or no sleep and are filled with worry and concern for the one they love, while trying to show a strong face. Ask if you can help them in any way also. Offer to baby-sit kids, even for a ½ hour, make dinner, or offer to order in, ask if they want you to go get a rental movie or if you can sit and talk with the patient while they shower or make phone calls, etc.

9. Prepare for when they come home. Depending on how long the patient is in the hospital, or depending how long the person has been sick, it might be hard to get back into the swing of a normal daily routine. Offer to help with laundry or help clean or dust so they come home to a less stale smelling place. Help clean out the fridge, or maybe help re-stock it before they get home. Open the windows and let some fresh air in. If they need help now to do things, offer to drive them to the store or doctor’s appointments. It is the little things that go a long way to make the patient feel back at home.

10. Do not forget about them the second they get better. Being sick gives you many different types of attention, whether you like it or not and the fact is that it can be very lonely when it all goes away. I have heard from many patients that the worst thing about being sick is when they started to feel better! That is when they were alone with no one offering to help or to lift their spirits. Still make visits, send cards or offer to help for the next few weeks during this transitional time. They might not need the same things, and it might not feel as “urgent” but still visit. They need to feel loved now too. They need the strength to continue to feel better.

Do Something! All the tips listed above are to help you, but they are not “rules”. Do what your heart tells you to do. Do what you feel is best. It is never too late and no gesture is ever too small. If it is from you then it is just right. Do not let your fear, anxiety or busy schedule stop you from being there for someone who could really use it, and will appreciate it

The worst thing you can do for someone who is sick is nothing.
© 2005 by Christine Miserandino Butyoudontlooksick.com

Irritated....

Okay, so I blogged about this on my random blog, but I wanted to get some thoughts from some of you, too....

I went to the lab to get some blood drawn today. I have to do this on a regular basis, and the girls in the lab (as well as the ladies in the pharmacy) know my face these days. So, at the advice of many people, and because I don't see my drs as often as I get bloodwork done, I put on the lab slip to send a copy of the results to me as well as the dr. Well, evidently if the dr doesn't order that I'm supposed to recieve a copy, then the lab can't forward me a copy. So instead, I have to go to my dr's office and request copies, which they take 2-10 business days to gather together, then I have to go BACK to the office, sign a second release form (third, actually, if you count the one that I signed when I filled out my new patient paperwork.....) and pay them $1/page for my results. now how does this make sense? Can someone answer this for me, or shed some light on the situation? I was so very nice to the lady at the lab about it, too, letting her know that I have anumber of drs, none of whom communicate with one another, which means that I have to take labs from the others to each of them so they have a whole-health picture. Still, though, nothing. She just insisted that this was company policy.

The lab is LabCorp, by the way, so if anyone's a LC employee and knows about this, that would be great!

"I wish I felt normal"

I hear this from other people all the time. People who are talking about the fact that they've had a cold for a month, or a period that has lasted too long. And, honestly, I don't doubt that they really do wish they felt normal. I have to say, though, that it makes me feel shitty to hear and read. I mean, seriously, I wish I felt normal, too. And a cold would feel normal to me at this point. I had another friend say that hearing about a mutual friend's baby bothered her because she lost a baby that was due the same day. I get that. Beyond the 4 miscarriages I had, I get that. That's how I feel when I read about someone being sick, and then they're better because it was just a cold or the flu. I wish that I could wake up one day and feel better and not have to worry about it again. At this point, though, I have no idea if I'm getting sick or just having a standard crappy day.

And really, this isn't knocking anyone who has said any of those things. It's just something that has been gnawing at me for a while now, and I just needed to vent about it.

Retribution? Revenge?

Okay, so yesterday I was having a few friends over for St. Patrick's Day dinner - it was my chance to make copious amounts of corned beef, cabbage, potatoes, carrots, and to try my hand at Irish Soda Bread. So I spent Friday and Saturday cleaning and taking care of the kids, then yesterday I also made the bread, peeled and chopped the root veggies and made leprechaun cakes (nothing special - yellow cupcakes I dyed green with green frosting on top...). I got everything ready, and it all worked out well. I'm paying for it today, though. I woke up this morning, and it took a while to get out of the bed. My entire body is sooo sore. Like Tracie so aptly put it, and she's right, imagine you have the flu - the honest to God, body aches make you wish you were dead flu. Then multiply that by a million. Yeah. That's how I feel today. Seriously, my collarbone is sore. My toes are sore. My hips are sore. It sucks. But it was worth it - everyone had a good time, and enjoyed the food.

I'm still learning my limitations with this. I'm still figuring out that I can't do everything I used to. It stinks, too, because I'm too young to suddenly be limited.

What not to say to a Thyca patient....

Now, I know I can't speak for EVERY thyca patient out there, but I think this sentiment is true with around 90% of thyca patients. There are things that we hear on a regular basis that, while said in complete good faith, just makes us cringe. I'm going to attempt to outline some of them here, and why they're offensive.

• "Oh, well that's the best cancer to have" and "If I had to pick a cancer, thyroid cancer is the one I'd pick!" Okay, see there are a couple of problems with those comments. The first is no one, and I mean no one, would choose to have any sort of cancer. Well, no one that isn't certifiable. Cancer, regardless of the type, is hell on the body and, probably more importantly, the mind. Also, I don't know who the jerk who decided that thyca is the "best" cancer to have is, but he's wrong. How is it better to have an organ and several lymph nodes (best case) removed, then have to swallow toxic waste? Then have to wait 6-9 months to even find out if the toxic waste even did it's job.
• "At least your treatment doesn't make you sick like chemo does." Well, see, it does. Seriously, lots of people throw up soon after administration, and when you're radioactive, even if you're in the hospital, you still have to clean up your own puke. Lovely, huh? Then, to keep your salivary glands from being completely obliterated, you suck on the most sour candies you can find for at least 24 hours. Constantly. Completely took all the skin off of the inside of my mouth, and all the enamel off of my teeth. Then there's the nausea that keeps on and on, the exhaustion, the extreme cold intolerance because you had to go completely without thyroid hormone for a few weeks, the hair loss, dry skin, the list goes on. THen it takes months to get back to normal so that you aren't feeling the effects still. By the time you get back to normal, it's time to have your 6-9 month scan, so you start a good bit of it over again. So, for the record, RAI SUCKS!!!
• "You're done with the surgery and the treatment. That means you're done, right?" Um, no, sunshine, it does not. Like I said above, you go through the surgery and treatment, only to have to wait 6-9 months to find out if it worked, or if you have to go through allllllll of it again. Yeah. Fun. And another thing - there's a great risk of recurrence, and the treatment has a tendency to increase (greatly) the risk of oh, four or five other cancers.

I know there are more, but I have 2 extra kids here for a total of 4, and it's the last day of spring break, so I'm about ready to crack.

• 
  

Thinking

So I was thinking today. Thinking about the future and the past, and about people's reactions to certain situations.

One thing that struck me as I was thinking was people's perceptions of someone with cancer. You can tell those whose lives have never been directly affected by their responses to such simple and minute situations. You can also tell the people who have extreme discomfort when asked to act normally around someone with cancer.

I was thinking back to the diagnosis and treatment, and how various people interacted with me when they found out. One thing that struck me was that someone who was supposed to be such a close friend almost completely ignored the situation. She would rarely call, and if she did, it was to discuss herself. She sent flowers, as if I were dead. Now, I know that this is just her way of dealing with things, and that my illness was, and is, uncomfortable for her, but when you're supposed to be someone's oldest friend, you step out of your comfort. You put their needs ahead of your own, even if just for a bit. You don't send flowers and then disappear until, in your mind, the threat has passed, then attempt to reconnect as if the illness never existed. Yet she did. And now I can no longer look at her as a close friend. In my utmost time of need, she desserted me.

Then again, at the same time, people I had only known a short time rallied around me. They showed me the love and kindness that I never expected. While some in my circle abandoned me or acted as if they could "catch" my cancer by touching, hugging or being around me, others came and made sure I had someone to talk to, to interact with. People I had known only months would come running if I just needed someone to give me a hug and a sympathetic ear when I wsa completely freaking out.

One dear friend, another new friend, even went so far as to come to the hotel when I was in quarrantine. We then went out to dinner, where we actually split an entree, and followed that up with a dessert of yarn shopping! She gave me something that I needed desperately then - human interaction without fear.

Other friends banded together and created an heirloom for me - a comfortghan to wrap myself up in when I was shivering with cold and fear; hats to put on my head to cover the bald spots, protect me from sun and help preserve my precious supply of body heat; books, yarn, crochet hooks and the ability to crochet so that I had something to do when I was fidgety, alone, unable to sleep, or spending many hours waiting in labs, hospitals and doctor's offices. Other friends and family members sent cards, letters, carepackages. The neighbors got things together for me to take into quarantine to help abate my boredom, then arranged to help with the housework and cooking.

It's amazing. I lost a friend in all of this, but I guess, when it comes down to it, I really didn't. I saw a toxic relationship for what it was, and saw the love I was, and am, surrounded with. Amazing how these things happen, huh?

Better Day Today

So today's a bit better.... the house is a mess and I don't feel like cleaning it, but that has less to do with my health and more to do with just not feeling like cleaning. :D

I was perusing the web, looking for a crochet journal that would have space for pics of projects, patterns, yarn swatches, etc. when I came across a really great site. I think I found a shirt that I'm going to have to get! Now, normally I wouldn't pay $20 for a tank top, but I really like that, and the proceeds go to the ACS. Not that that part matters as much, but hey, if I'm going to spend money, it might as well go to the organization that has given me so much support without asking for anything in return, right?

Steroids, NSAIDS and DMARDS, Oh My!

Yeah, so, if you're not familiar with the title, I'm referring to the Prednisone, Mobic and Plaquenil that I am taking to control my rheumatoid arthritis. And if you missed the whole RA debacle, I'm 28 and have debilitating arthritis throughout my entire body triggered by the Thyca treatments.

So now that we're all up to speed, let's talk about what's going on.

I have found that, lately, I cannot control the RA without the prednisone. I thought that prednisone was supposed to be a short term fix, not something that I have to take to function on a semi normal level. And until about month ago, that's exactly how it was. But since I got the call that my grandfather only had 72 hours left (he lasted a whole 5 weeks more!!!). Now, most people wouldn't see a problem with this, but for me, prednisone causes mental issues damn near psychosis. Seriously, when we went to CT for my Grandfather's funeral, Hans went down to the front desk at the hotel for something (I forget what) and was gone less than 5 minutes. Yet, in that time, I was somehow convinced that he was cheating on my with the girl at the front desk. A week before that, we went out to a club. I made a comment about wanting to look like someone there, he agreed, and I absolutely freaked out, screaming at him for the next 45 minutes!!

So the question is, what do I do? I don't go back to the rheumie for another month. Ugh. I love being me.

Overanalyzing

I'm about to go take my shower to get ready for my breast scan. I'm sitting here honestly worrying about what I should wear. Really, does it make a damned bit of difference? Does the sonographer care? I'm going to go in and have to put on a paper shirt most likely anyway. Shouldn't make a damned bit of difference what I wear.
But it does. It makes a huge difference to me. In my mind, I have to dress well any time I go to the doctor. For some reason it makes me feel like, if I'm well dressed and look healthy, then maybe I'll be healthy, maybe I won't get bad news. Maybe the doctor will show me more respect because I care about myself. Maybe only people who go to the dr dressed like bums get bad news.

I don't know. One of my many neuroses, I guess. Still, I'm worrying about what to wear to a breast scan.

Joy of joys....

So today I went to my PCP for my annual well woman exam. She was highly impressed by how well I know my own body, but she and I are both mildly concerned about my ever shortening cycles. I'm a very regular 28-day cycle kind of girl, yet, I seem to be losing 4 days every month for the last couple of months.... As it stands right now, nothing to worry about. But if this should continue, I'll have to get an appt. to an actual GYN. Not my idea of fun right now, considering I just yesterday was told that I don't have to go back to the rheumie until April 11, and I shouldn't have to go back to the endo until sometime towards the end of April to set up my scan protocal. I was really, really looking forward to being able to deal with just the shrink visits for the next couple of months. Is it really too much to ask that I be able to go 2 months without 4 different appts??

She's also sending me for a breast ultrasound. I have fibrocystic, dense breasts (sounds real attractive, huh?), so it's difficult to tell if a lump is normal or if it's something scarier. Because I already have cancer, she decided that it would be a good idea for me to go ahead and get it checked out, just to make sure. I appreciate that. She also recommended an ultrasound as opposed to a mammogram because, evidently, my breasts aren't saggy enough (YAY!) that they would handle a mammogram well.... something to do with needing to be saggy if you're this dense. I don't understand it, and I don't need to - ultrasound is muc easier than a boobie-smash session, am I right?? Still, just one more thing for me to worry about, at least a little. It's hard to keep my mind from going in that dark direction when it comes to cancer risks anymore....

Still apprehensive about that whole path report thing..... I sent it to a friend whose DH is a cancer researcher at MD Anderson Houston, but haven't heard back from him yet..... I just want to know the facts, without any beating around the bush. It would be nice, too, if I could get some straight answers out of the endo. I've been contemplating switching endos for the last couple of months after the horrific experience with his nurse being a complete bitch to me when I was feeling so horribly, but I haven't been able to find any that have any sense when it comes to matters of the thyroid. Note to medical students, specifically endocrinology students - we need more thyroid-specific endos who are willing to keep up with the latest ressearch! I live in a metropolitan area that supposedly boasts some incredible cancer research (we have an MD Anderson, too), and yet I could only find 1 endo practice that has a clue as to what they're doing when it comes to thyroid cancer.... How ridiculous is that?

And let's not even talk about the fact that I can't go to MD Anderson here becuase, for whatever insane reason, they're not on my insurance!! How ridiculous is that? I live 15 minutes from one of the country's premier cancer centers, and I can't utilize it because BCBS doesn' have a relationship with them. I hate insurance, and I hate getting screwed over because I'm not filthy rich OR dirt poor.....


Ahh, but that's fodder for a whole different rant......

What am I doing?

Okay, so yet again I have been concentrating on what is wrong with my life, ignoring what is right. It has caused me to crawl into a hole that I've been unwilling, for whatever reason, to crawl out of. As I was sitting yesterday talking to a friend, though, I realized that about half of my stress is of my own making - my lack of self esteem and my abundance of self pity. I have to look at the bright side, though, the good parts, or else I'll never be able to get any happier, which means I won't get any healthier.

So, here, today, I'm going to list the things that I should be, and am, grateful for. The things that make it worth waking up every morning.

1. Finally, after 6 months, I am feeling like a normal human being, thanks to my rheumatologist. The extreme exhaustion is completely gone, and the joint weakness and swelling are beginning to abate. Even those around me have noticed that I'm looking more like the old me.

2. My scar has healed fantastically. Even the best of surgeons tell you that at 6 months out, the scar should still be raised and red. Mine is completely flat and barely pink. No one can see it, except me, and sometimes I now forget it's there.

3. I still have my hair. Granted, it's thinner than it once was, and still falling out, but I was blessed with nails and hair that grow at an insane rate, so I'm not dealing with more extreme loss. And it's a good bit longer than it was after surgery (when I did have bald spots) - all the way to where my neck and back meet.

4. My husband is still with me, even though I have been cycling through periods of anger, jealousy and sadness that would probably chase anyone else away.

5. I am surrounded by friends locally who love and support me in any way they can - without these people, I don't know how I would have made it through the last 6 months, or how I'd make it through the next 5.

6. I have healthy, beautiful children that are, for the most part, very well behaved. They give me a reason to live.

I'm sure there's more, but I need to go clean for a bit. Now that I finally feel human, it's time to put my house back into order!

Being Me

Okay, not really feeling sorry for myself today, but kind of frustrated.... I was putting all of my pills into my weekly pill minder and it hit me again just how much I have to take daily, and that on many days I have to take more. Not only that, but it doesn't look like this is going to change unless someone finds a way to combine non-interacting medications into a single pill.....
I'm 28. I haven't even broken through the ceiling of 30 yet. Regardless of that fact, I take at least 8 pills a day, 9 on Sundays, and many days I have to add 1-3 more. It's insane. I hate cancer! I was fine before they found and began treating the cancer, you know? I was on 2 pills a day. I could handle that. I took them both in the morning and went about life blissfully unaware. Now I have to pop out the pill minder for the day and take it with me if I'm going to be gone for more than a few hours so I don't screw up my dosage spacing. I take more medication than my Grandfather who is in the last week of his life with lung cancer!!!

Frustration

You know, I hate our medical system sometimes....

I have my path report and have been trying to make sense of it for a couple of months now. Yet, it seems that I can't get anyone to explain what it says, or how it impacts me.....

Like, there's the fact that the cancer invaded a parathyroid gland. I can find info on all sorts of mets to all sorts of places, but to the parathyroid is so rare all I can find is info on how it's so rare and doesn't usually happen.... That's all well and good and everything, but it doesn't tell me squat. I'm in that rarity,, but that's no news to me either.... just tell me what the hell it means for me!!!

And the real kicker is that the drs, when I ask them what this, that or the other means, tell me that it's not important for me to know..... YES IT IS!!! It's my body! I want to know what's going on with it! Would it kill you to take 5 minutes to explain what's wrong with me??

Flying

I'm preparing to take a somewhat spur of the moment trip to CT sometime in the next month - my grandfather has end stage small cell lung cancer and has very little time left - and am wondering what this is going to mean for me. I'm in the middle of a flair. Granted, I'm controlling it with medications, and I should be able to start my plaquenil this Friday, but still. Flying has always made me swell up a good bit, so with already being swollen, I wonder how much worse it's going to be. beyond that, I'm wondering what, if anything, I can do to combat it getting worse. Do I just drink loads more water? Do I get the doc to prescribe a heavier course of prednisone? I just don't know.

Beyond this, there's the fact that I'm sitting here with knots in my stomach after that last endo visit, and I hate that I'm letting this get to me. It's nothing new, nothing I didn't expect, but still. It bothers me. Then there's the fact that I'm going to cancel this weeks shrink appointment. Again. I hate to, especially since I probably need it more now than ever, but Hans is leaving that day, so there's no way he can watch the kids. Besides, money's really tight right now, and about to get even tighter with this trip to CT. Trips are never cheap, but when they have to be taken on the fly (pun completely intended), they tend to cost exponentially more. For just two of us to go for three days, it's going to cost more than our monthly rent. Disgusting, if you ask me. Nothing I can do, though.

My Daddy's going to the endocrinologist this week, too. Evidently his thyroid's enlarged. He's also just found out he's hypo. Some days it feels like it's just never going to end. I just pray that he is fine and it's just a benign enlargement. There's been way too much cancer in this family.

News from the front.....

I went to the Endo on Friday for my 3 month check up. We were talking about the next scan, which will be the first diagnostic scan for the cancer, and he was making comments about when I have my next treatment (RAI), not if I have to have another treatment. So, it looks like I'll be taking more kryptonite in about 5 months. Not looking forward to that, but, if I can time it right, the kids could be out of town for it (they spend summers with my parents) and I won't have to worry about them - I would be able to stay home for my iso.......

Feeling better!

I can't believe it! I really didn't think that this day would come, at least not this soon! Evidently, though, it's been the cancer triggered rheumatoid arthritis making me feel so shitty lately! One week on the anti-inflammatories and 3 days on the steroids and I feel like a new woman. It was weird, though, because I didn't even realize at first how good I felt, Christmas night, though, I was lying in bed and realized that it has been three days since I had felt exhausted, since I had had a hard time making it past noon. 3 days!!!! It's been months since I've gone three days without feeling like death warmed over!

Still, with the relief comes trepidation. Now there's something else going on, another illness to contend with for the rest of my life, another medication regimen to take on and another set of complications piled on the previous sets. I worry about what's going to happen to me physically, how I'm going to continue to cope with this emotionally. I have barely started dealing with the cancer, and to add another lifelong illness, well, it's just not easy. THen I worry about Hans and our relationship. He didn't sign on for this. I was healthy when he met me. He didn't get involved with someone with cancer and autoimmune disorders and God knows what else, someone who's going to need specialist medical care for the rest of her life. Someone whose body has now betrayed them more often than not.

But those feelings are why I'm going to a psychologist, aren't they?

correction....

I stated in a previous post that my TSH was .01. Either I misheard the nurse, or she misread the number. I got a copy from the rheumatologist today and my TSH was .1 - the perfect level for ThyCa supression therapy.....

Mixed Emotions.....

I went to the rheumatologist today. I wasn't scheduled to go until January 24, but they had a cancellation and called me. I think it's one of the first times that's ever happened!

So, I went, and I think I like the guy. He reminds me so much of Eugene Levy that it was all I could do not to laugh or ask him about the warm apple pie! Still, I liked him. He was dry, but he cut to the chase and didn't beat around the bush. I really like that in a doctor.

Here's the good part, the part I'm mixed on - he said that he is almost 100% positive that I have rheumatoid arthritis, based on his examination and my answers to various questions. I have obvious joint inflamation in all the "right" places for RA, I've had autoimmune issues in the past, and I had a very systemically traumatic surgery that seems to have precipitated the onset of the condition. He started me on Mobic and gave me a script for prednisone in case the mobic isn't working in two weeks (he'll be out of the office for 2 weeks following Christmas). I go in tomorrow for blood work just to cinch the deal. There's a part of me that's so glad to have the diagnosis - at least I know it isn't all in my head and that I'm not a hypochondriac - but then there's the part of me that is so depressed by the thought of adding yet another item to the laundry list of Things Wrong With Kerry and 2 more medications to the pharmacy living on my kitchen counter. Still, it's a good thing to have something to make the pain better - this morning I had to have Aliceon take the top off my deodorant for me, and that's pretty sad....

Another day, another psychological evaluation....

Well, kinda. Today was my second visit with the new psychologist, and I must say that I really like her. She understands more what it is to be me than anyone else on the outside ever has. I realize that that's because she was an oncology nurse for so long, but still. She understands more than just the cancer issues. She understands my back story, and the fact that having cancer is just adding insult to the injury of my past. She's good, too - she gave me tools and tips, and actually listens to me. I'm sure Hans thinks that I go in, bitch about him, and have her agree with all of it. That's just not the case, though, and I'd like to think that she's helping me to understand him, and that he's trying to understand me, but that we're totally different people with totally different coping mechanisms.

So another day has gone by. I still feel pretty bad, but I have hope - the GP I saw a couple of weeks ago switched my anti-depressant from Zoloft to Wellbutrin, as per the psychologist, and she prescribed Imitrex for my migraines. She has also referred me to a rheumatologist, whom I'll be seeing tomorrow, and a sleep lab, where I'll be going for a sleep study on January 3rd. I guess that, all in all, it's all going well. I'm a little bummed that none of either of our families is going to be joining us for Christmas this year, but thats life, right?

Technorati Profile

Am I Crazy?

Well, stupid question - of course I am! But what I'm wondering about is a little more specific than the fact that I'm going nuts....

My TSH came back as .01, which is, supposedly, perfect level for supression therapy (necessary to help retard the growth and spread of cancer in ThyCan patients). Now, I realize that that level also qualifies me as moderately hyperthyroid at the very least. My Endo's nurse, who has recently become cold and highly unsupportive (guess she's another that equates being done with 1 treatment as being "all better," regardless of the fact that, until the diagnostic scan in a few months, we won't even know if the RAI worked, musch less if the cancer is completely gone. And even if it is gone, there's no guarantee it will stay gone. Moving on....) was insistent that my symptoms were not thyroid related because there's no way I'm hypOthyroid. However, and I couldn't get any more info from her at that time and (how sad is this?) don't dare call her again to ask, I can't help but wonder if maybe I'm just experiencing some pretty severe hypERthyroid symptoms. Or amybe my body isn't metabolizing the synthetic T4, so I'm not getting the T3 I need. I don't know, so I put this to any of you that might know..... The Endo's nurse just thinks I should go to the GP and leave her alone, that there must be something else wrong with me, that this can't be at all related to the ThyCa. So give me some feedback, if you would please.

Here are the symptoms, which grow continuously worse and were not present prior to RAI:

• Exhaustion
• Increased blood pressure (normal was ALWAYS 116/60 +/- 2pts, now is almost always 141+/91+)
• Extreme (almost debilitating) joint pain 3-4 days a week
• Painfully dry skin (live in Fl, so not typical "winter dryness")
• Mood swings
• Rapid pulse
• Breathlessness
• Weight Gain
• Worsening vision
• Paranoia
• Lack of libido
• Short term memory lapses
• "brain fog"
• Confusion
• Limited rangoe of joint motion
• Hairloss
• Acne flares
  

I'm sure there are more, but that's off the top of my head..... Thoughts?

In hiding....

I could say that I haven't blogged here in two weeks for the same reason I haven't blogged Yarn Addiction for two weeks, but that would be lying. I mean, yes, I told the truth on YA about how busy and all, but honestly, even if I had the time and energy, I don't know that I would have blogged here before now anyway.

The truth is, I have been so angry, drained and confused that I haven't wanted to put any of it into words. I was treated horribly by the nurse at my endocrinologist's office, told by the lady that runs th cancer support group that I can't attend because I don't see an oncologist, started seeing a new psychologist (good thing here....) and was told by my nurse that my feeling so bad is just stress and that there's nothing wrong with me. Talk about pissed off. Then Hans, when I tried talking to him about how I feel (as per my therapists) told me that my being afraid and worried was just the hypochondriac in my talking (FYI - not a hypochondriac....)

So yeah, been a rough few weeks.....

Vampires and Head Shrinkers

Monday was shrink day. I'm really sad that next week is my last week with this particular therapist - I really feel comfortable with her. Oh well, though - maybe she'll have her own practice soon.....
We talked a lot about what makes me angry, and why I'm angry and how I react to it. We got to the root of it as I'm just plain overwhelmed by it all. That and the fact that, even though I'm not fine, anytime anyone asks how I'm doing, that's my stock reply. Then I walk off pissed because no one gets that I'm not ok. So, we did some roleplaying with me being one of my staunchest "so glad that nasty cancer's all gone" family members, adn she really gave me some ways of validating my feelings to myself. The reason, I admitted to her, that I always say I'm fine is that I hate feeling like I'm complaining. She pointed out, though, that it's not complaining. Complaining is not saying, "you know, thanks for your words. I'm really still not feeling up to snuff, and am pretty exhausted, but we're getting through it all."

We also talked about how alone I feel. How the fact that the one person that I should feel the most support from, I really don't feel it. I know that he's doing all he can in his own way, but, honestly, I need more, and I don't know how to tell him without sounding like a whiney little baby.

So things on the head shrinking front are really going well.....


In other news, I finally went and got my blood drawn. I hate going to Quest here. No joke, there were only 3 other people waiting when I got there, there were 5 techs, and yet I STILL had to wait 45 minutes!! I got 5 inches crocheted on a scarf while I was waiting! But, it's done. For this month, anyway. Now I just have to wait till next week to get my test results. I'm desperately hoping that they show that my TSH is high so we can do something about it. If I have to keep feeling this crappy much longer, I just don't know what I'm going to do......

Yeah, I'm an idiot....

So I was supposed to go get my blood work done a few weeks ago but haven't because of this, that and the other. The kids were sick, I was sick, blah blah blah. Well, I have had increasingly worsening exhaustion and joint pain for the last few weeks, but it all came to a head yesterday. I am so sore, especially in my wrists, shoulders and hips, that I can scarcely stand it. I mean, we're talking severe, radiating pain. I'm not sure what the reason is, but I think, combined with the other stuff, that it's probably hypothyroidism again. Which, in a way, is a good thing, because it means we can up my lvoxyl, and I should start feeling better before long. However, if it's not underactive, but overactive, then I'm pretty much screwed..... It's not helping matters any that it's unseasonably cold here in FL right now, either - 50 right now, nearly 30 degrees below normal, It makes the joint pain worse, and also makes my scar-area hurt. WEird how the weather can affect these things, huh?
Still, the cold is helping me get into the holiday spirit, that's for sure! Now if only we could find a tree that I like at a price that Hans could live with, we'd be in business....

Trudging On....

Still feeling pretty shitty - energy level is just shot to hell - but I have things that I have got to get done before Thanksgiving, so I'm trudging along, doing as much as I can....I got the pantry organized this morning - something I've been needing to do for a couple of months now:





Now I need to finish folding and putting away Mt. Washmore so that I can make the bed in the guest room. I'm going to try to get that done in the next hour before Aliceon gets off the bus, but no promises. The only reason I'm sitting now is that I absolutely have to rest.

This is getting old. I'm so damned tired of being sick and tired all the time. I think Hans has finally realized that I don't like being like this, and that it's real and it pisses me off..... I want me house to be spotless - I had gotten used to it being that way, to having a system that only took a small amount of time each day to maintain. Yet, for some reason, I just cannot do it now. I don't know if it's physical, psychological or both, I just know I can't do it all myself right now. THe only problem is, I'm too stubborn to ask anyone to help me, and if they offer, I'm too damned proud to accept. Stupid, I know. I'm also so much of a perfectionist that, if I can't do something exactly right right then, I just don't do it. I know, also stupid. I'm working on it, really I am......

Hmmm.....

Today was my first counselling session. Not sure exactly how it went because I'm not sure how it's supposed to go. We talked, and she validated my feelings of fear and frustration, which made me feel good..... I told her that the thing I really want to work on (she told me to choose one thing since we only have 2 more sessions before the winter break) was my anger issues - I seem to get explosively angry at the least little thing. I've always had a temper, but had learned to control myself, for the most part. Now, though, with everything else, I just blow up for no reason at all. So, for the next 3 weeks, I'm supposed to journal when I get angry - what triggered my anger, what I was really angry about and how I reacted, as well as how I could have better reacted (the last part I added in myself). I'm also supposed to close my eyes and take three deep breaths when I start feeling out of control, and take 3 minutes twice a day to go in a room by myself and center myself or meditate. So, for the next week I'll attempt these things and see if they help any.



In other news, I feel like crap. I'm not sure if I need a medication adjustment or what, but I feel so out of whack it's not funny. I'm exhausted, but I can't sleep. My heart's racing, but walking across the house winds me. My skin is so dry I have to constantly apply lotion, yet my face is breaking out like I'm 12 again. It's frustrating!!! I'm going to go tomorrow and get my bloodwork done so my thyroid levels can be checked, though, so maybe we can soon get to the bottom of all this....


Well, time to go clean the wreck I call a house. Where are those magic fairies now that I really need them?

Shrinking 3 - Falling into place

So I finally found my insurance card today and called about the psychologist that I really wanted to see. THey'll cover her, and I will be responsible for either $30 per visit in copay, or 30% of the allowable coverage. So, all in all, that doesn't sound too bad. Does it? either way, should be less than $50 per session, and if it allows me to deal with everything going on in my life right now, it's worth it, isn't it?

It seems like all sorts of things with this cancer just sort of work themelves out. Things have fallen into place all around me to make things slightly easier. I'm not one to believe in coincidence - I firmly believe that everything that happens happens for a specific reason. This seems to just be another case of the same :D The psychologist just called me back, and I have an appointment to see her on November 28th. I think this is all going to work out.

Hiding Out

I feel like I'm hiding out right now. Not literally, as I am still having contact with people on a near daily basis. However, after letting my guard down and telling a couple of people what was going on, I'm now back inside myself. I had my moment of vulnerability, and I guess it's gone now. I actually feel ashamed and embarassed that I told two very close friends how I'm truly feeling right now. Maybe it's that old Catholic Guilt rearing its ugly head again, or maybe it's just the fact that I'm a very introverted indivdual, regardless of what kind of front a put up. I'm a strange one, let me tell you. I'm very, very shy and unsure of myself, yet most people who know me have a hard time believing it. I'm a very good actress, adept at keeping my neuroses under wraps. Where I run into a problem, though, is when I run out of internal space to chink all the things I'm dealing with. Then, suddenly, I expplode with little to no warning, lashing out at whomever happens to be nearest. Unfortunately, that whomever usually ends up being Hans. It's a wonder he's still even with me.

Today is another day....

Okay, so maybe the last few days have been as much a result of hormones as anything. I don't really think that's the case, but it's nice to have a scapegoat occasionally, right?

See, here's the thing - I think that, since the diagnosis in July, I have tried to be so stoic and strong so that no one knew how scared I was. It started off being because of the kids - I didn't want them worried that Mommy was going to die because of the big bad Cancer. But then everyone else saw what I put on for the kids, and no one saw the scared little girl inside me. So I have been hiding inside this brick tower for nigh on 4 months now, and the cracks are starting to show. Actually, the walls are just crumbling. The problem with that, though, is that since I was so stable-seeming before, no one knows how to react to the volatility now, including myself. I can't hide my fear from myself anymore, and that scares the shit out of me. Add to that the fact that the kid gloves everyone else was treating me with have come off, so now I have to deal with the rest of my regular life, too. I didn't have to deal with that before because everyone else had stepped in so I wouldn't be bothered by it. But now that I appear to be better (not really, just another act, but that's another blog, too....), my regular responsibilities are back in full swing and no one seems to get that I'm not back to normal yet.

So now I'm Mommy, ThyCa patient, maid, wife, therapist, chauffeur, chef and everything else. All the things that were a juggling act before the cancer, and then cancer added to it. And I can't change any of it. There's nothing I can be doing right now in relationship to my treatment. I just have to sit here and wait. There's nothing I can do about anything that's going on with Al or with Heather, either. Those are wait and see situations, too. I don't have the energy to be the wife, mother and housekeeper I really want to be, but it kills me to let anyone know that. I need help, but true to form, can't ask for it. And even if it's offered, I have no clue how to accept. I had a close friend that offered to come clean my house while I was in quarantine, and don't you know that I made sure it was clean before she came so she wouldn't have anything to do? Because God forbid someone come into my house and it's a mess. Only, now, for the past month or so, it has been a walking disaster, and I just cannot keep up with it.

I don't know. Just thinking out loud, I guess....

Shrinking 2

SO I got a call today from the UCF counselling center, and I start therapy with one of their PhD level students next Monday. There's another therapist I would like to get in with - a dr, actually, but she's not on my insurance. I'm in negotiations with the insurance company right now, though, to get her covered, because she is the ONLY cancer specific psychiatrist in the central FL area. She's also an oncology nurse, so she's got a lot of experience dealing with cancer patients, something I haven't been able to find with any other therapists.

So I guess we'll see where we go from here.......

Shrinking

So I think I need to find a shrink. I just can't cope, and it's tearing me, and my family, apart. I have even less patience then I did before, and when I lose it, I end up crying. Of course, I sob for no reason lately, too, other than the fact that I'm scared. Last night I threw a fit and threw a crochet hook at Hans for what amounts to nothing. I looked like a total psycho, and, honestly, I felt like one. I am completely sick and tired of not having control of my emotions and feeling like I'm left alone to cope with everything........ So, I am off today in search of a shrink who deals with cancer patients.

FrankenKerry

Just thought I would post a couple of pics from last night......

Sunday

So Sunday is usually a lazy day - a day to spend time together as a family, doing whatever it is that families enjoy doing or need to accomplish as a unit. THis particular Sunday, though, Hans is working. That's okay, though - it's giving the girls and I a chance to clean some, put up our Halloween decorations and bake some special Halloween cookies. Also on the docket for today is figuring out my costume for Tuesday night.

See, I always dress up for Halloween. Even if all I do is sit at the front door handing out candy, I dress up. Usually it's my old standby as a witch, but I decided that, this year, Frankenstein's Monster would be the way to go, given my accquisition of a lovely thyroidectomy scar just a short while ago:Now, granted, the scar isn't nearly as bd as I had expected it to be. In fact, it's really not very noticeable these days:


This amazes me because, when I was researching my surgery before it took place, I googled some images to prepare myself for the upcoming disfiguration and kept coming across images that were much larger and more obvious. Part of my scar being so subtle is the wonderful surgeon I used, and part because of the kelo-cote that I put on daily. Seriously, the surgeon is so impressed with the kelo-cote that he asked me about it, and is now recommending it.

Still, I'm going to do Frankenstein. It'll mean a little more makeup work, but this is one of the things that has gotten me through all this - the humor in the situation. So off I go now to try and put my Frankenstein costume together! Too bad the RAI didn't leave me glowing :D

Theme Songs

Through out this process I have clung to a few things: My comfortghan, lovingly made for me by the Tampa Bay crochet group, the hats that Brandee and Tracie made me to cover my bald spots, my Hugh Jass diamond from Eli and music. There's more - thoughts, prayers, cards, friendships, etc, but these are the tangibles, the things that I wrap myself in, literally and figuratively throughout the scary parts of all this.... 2 of the songs I have clung to have had Superman as their premise. Not sure if this is solely because of the strength I see in Superman, yet the weakness in Clark Kent, which makes me feel like I could have that strength too, or if it's the fact that, while on vacation just before the diagnosis, Hans and I went to see Superman. It reminds me of the last really fun, good time we were able to have before our life turned upside down......
Right now, Five for Fighting's Superman ballad is really resounding with me:

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird...i’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me

Up, up and away...away from me
It’s all right...you can all sleep sound tonight
I’m not crazy...or anything...

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me
Inside of me
Inside me
Yeah, inside me
Inside of me

I’m only a man
In a funny red sheet
I’m only a man
Looking for a dream

I’m only a man
In a funny red sheet
And it’s not easy, hmmm, hmmm, hmmm...

Its not easy to be me

These lyrics really go a long way to sum up the way I feel.......

Rested.....

So one of the side effects of all this thyroid cancer stuff has been insomnia. However, after 2 weeks of insomnia, last night I went to bed at 7:30 and didn't get up until nearly 8 this morning, minus about 45 minutes at around 10 when Hans and I were up with Heather, getting her to take another dose of tylenol for her fever. I woke up this morning with a much better grasp of reality, let me tell you.

Still, I stand by the things that I have said and thought the last few days. The difference between them and now is that I'm not as overwhelmed as I have been. I'm a little better equipped to cope today, I think, than I have been the rest of the week.

This isn't easy. It isn't supposed to be, though. Easy is walking through a field of daisies or eating ice cream in a park. Life, by it's very nature, isn't easy, and it shouldn't be. We only truly learn from things that we have difficulty with in some way.

Survivor

I have a banner that I use that says : Thyroid Cancer Survivor. When people see this, they assume that means that I have "beat" my cancer, and that I am past it all, that there is nothing left for me to do. That's not at all what it means.

Survivor is defined as:
"a person who continues to function or prosper in spite of opposition, hardship, or setbacks."

And then there's the definition of "survive:"
" 1. To remain alive or in existence.
2. To carry on despite hardships or trauma; persevere: families that were surviving in tents after the flood.
3. To remain functional or usable: I dropped the radio, but it survived."

That's how I see myself - someone who continues to function in spite of opposition, hardship or setbacks. Remaining alive an in existence. Not beating anything. Just dealing with the hand I've been given, trying to be as positive and optimistic as I can.

I told a friend just this morning how hard this is for me. That, for some reason, this embarrasses me more than being molested, raped, abused, having miscarriages. I have no idea why, but it does..... maybe because I knew I could get through all the rest of those things, but I have no guarantee that this won't kill me, and that scares the shit out of me......

I'm having a really hard time dealing with all of this. I didn't think it would be this hard, honestly. I have zoloft and xanax to take to help me cope, but I have stopped taking the xanax for fear of becoming addicted, and even with the double of the zoloft dosage, things are piling on me and making me crazy. I have no control over my emotions. I don't sleep at night because my brain is going a million miles a second. I have no patience with my kids right now, and that's hard on me, too......

I don't know - it's all so much, and I feel like there's nowhere to turn.....

Alone?

I'm going to veer away from yarn for just a moment here to get some thoughts in order that have been rattling away in my brain for a while. Some things that bother me and make me a little more than insane.

I have thyroid cancer. That has been established already, it's common knowledge and not something I hide at all, even if I do attempt to hide my scar and thinning hair. And when I was diagnosed and going through surgery and radiation, the whole of my network of friends was GREAT! I mean, there for me 100%, anything I needed, anything I could think of. Now, though, it's like it never happened. In most people's minds, I had cancer. For them, I'm through it. Because my treatment isn't stretched out over dozens of little doses over the course of a few months, but rather one huge, scary, toxic dose every 6-9 months until the cancer is gone, I'm not seen as having cancer in the conventional sense of the word. And I haven't lost all my hair - only some. There's nothing glaringly obvious about my condition - even my scar is pretty subtle. My fear, though, and my anger, they aren't the least bit subtle. The fact that I won't know until sometime next spring whether the treatment I went through at the end of August actually worked is sheer torture. The sitting and doing nothing proactive for the 6-9 months between the treatment and the diagnostic scan is horrible. And then hearing from everyone and their brother, "Oh, if you have to choose a cancer to have, this one is the best!" throws me into a near murderous range. Seriously! Have you THOUGHT about what you just said? If you had to CHOOSE a CANCER???? Who the HELL chooses to have any cancer?? And how, praytell, is this one the best to have? I mean, think about it. For this cancer, first of all, it goes undiagnosed for ages. Then, the treatment is to remove an organ from the body and any other parts that are cancerous, then, when that's healing, your body is in turmoil because it has no metabolism. As soon as you hit rock bottom metabolism wise, you go on an uber-restrictive diet in preparation to take a dose of radioactive waste. Seriously. They lock you in a room covered in cellophane and no one, not even nurses, will hardly come in. There are lead walls around you. There's a sign on your door that says you're radioactive and only authorized personnel may enter. I honestly felt like a character in some weird sci fi, and not in a good way. And then the skin started peeling off the inside of my mouth. My taste buds are shot, and I cannot taste salt to save my life. I'm on medications out the wazoo to keep the ol' internal thermostat remotely operational, and I'm depressed, irritable and have developed high blood pressure. And yet people feel inclined to tell me that THIS is somehow better than having a spot cut off of my skin. Oh, and let us not forget the long term side effects of I-131 (the radiation I received) in thyroid cancer patients - Hodgkins disease, Non-Hodgkins Lymphoma, Leukemia and breast cancer. Yeah. best cancer to have my ass!

Bottom line - I may look better, I may feel better, and it may not be the only thing on my mind these days, but I do still have cancer. I am terrified. I'm fragile. I spend so many days crying still, and yet no one seems to notice.

My Reasons

I decided to start a new blog about my thyroid cancer so as not to bog down my crochet blog. I mean, really, who wants to read aobut the downers and rants that are my cancer life when they're there to see what my latest project is? So Here it is. Yeah, the title sounds so very strong, but like so much of my coping with this damned thing, it's a facade.