Minor Freak Out

First, the good news. The PA at the oncologist's office called me yesterday afternoon, and shared that my TSH was already at 42 (needs to be above 30, but hopefully 50 by treatment day; normal value is between 2 and 4). So, it means my surgeon did an EXCELLENT job removing my thryoid. And, it means that we got to schedule my treatment, which we did for July 13th. All good news. The only downside being that I needed to start my low iodine diet immediately.

I knew this was a possibility, and so had planned ahead by eating Taco Bell for dinner the night before, and a chocolate shake over my lunch break. I had even kind of read through the low-iodine cookbook during my training hour (not when I should be training, but when I facilitate online training, kind of like a homeroom monitor). So, I wasn't freaking out but was definitely anxious to get to the grocery store and get something I could eat for dinner.

Also at lunch, I had kind of started reading labels and looking for some no-salt-added foods. All I could find was no salt peanut butter. But even then, I had to find the no salt PB that didn't contain any soy contaminents from the process, because soy contains iodine, too. And since the diet is the one thing I can control right now, and because it has such a great impact on whether or not these I-131 is effective, I am trying to give it my all.

Even though I thought I had a good jump start, I knew I wasn't as prepared as I would like to be. I didn't have a grocery list all ready to go. And DH's aunt was coming over after work to get 'instructions' for caring for the boys since our regular daycare provider has vacation next week.

SIDENOTE: I will always say that our daycare provider is underpaid. Even with two paid weeks of vacation a year, which means that I have to pay her for a week of nothing, and someone else to actually watch the boys. She is still totally underpaid. So, even though the money thing stresses me out, she deserves the break and I want her to take it. Although, it would be nice if family would do this for free ;-)

Anyway, DH wanted to get a haircut after work, which was fine. I texted him that the diet would be starting and I would be anxious to get to the store when he got home. But to please go ahead and get his haircut because I wouldn't be able to leave until his aunt got all of her instructions anyway.

So, he gets home, I still have no grocery list. And he is jabbering on about how I should get extra batteries for the baby swing, look at his new shoes, what can he eat for dinner since I'll be gone. I freaked, but held it in while I was there. I didn't want to blow up at him. But SERIOUSLY?! I can't eat anything in this house, I'm starving, and stressed about figuring out not just what I can eat for dinner tonight, but for breakfast, lunch, and dinner tomorrow and the next day. Oh, and did I mention that we're leaving for a road trip and I can't eat at any restaurant at all, so I will need to pack food for the trip, but not just snacks, but actual meals! But I didn't say any of this, except about the batteries. But he still didn't take the hint as I'm laboring at the table frantically writing down food I want to buy. He's just going on and on about the rest of it. So, I finally left.

While at the grocery store, I realize the diet is totally going to blow our grocery budget for the month. But I try not to focus on that. We have plenty in savings we can use. I'm just stingy. While I'm shopping, I'm on the phone returning more concerned friends and family. I secure one volunteer for him to come help him with the kids one night while I'm radioactive. But by the last few aisles, I'm getting a little panicky because I still haven't really found anything that's a 'meal' or anything that would really travel well. So, I'm imagining what I'm going to eat Thursday night while we're in the car on our way to Iowa. So, I start tearing up at the grocery store. I hold it together. I mean, I'm teary but I'm not actually weeping and the tears stay in my eyes, but I just so badly wanted to sit right down and cry. I *so* want to do a good job of eating right these next two weeks, and I don't want some 'hidden' iodine to get in my system because I was rushing or didn't read the label. I already think that will happen just because it can be anywhere - even in my makeup. How do I know whether or not MAC uses red dye #3?

What set me off was the chicken. Even fresh chicken can be enhanced with chicken broth. And commercial chicken broth contains salt. No telling whether or not its iodized or not, so best not to risk it. So, I searched and searched and searched finally finding some organic chicken breasts that did not say 'broth' anywhere on any label that I could find. They might still have it, but it was the best I could do. But I was still worried about it, and doubting myself and freaking out a little in the meat department. So, I called my SIL who is always supportive. Whined to her, sniffled to her, and mostly just made fun of my real sister who would be packing organic food and sugar snap peas on any given day, but for me, it would be just whatever they had at the convenience store. And I felt better after talking to her, that I could do this, and even if I have to pack a cooler of organic, no-salt-added food, I would be fine. And then I bought some Tylenol PM because I knew there was no way I would sleep last night without it.

Got home, and truthfully, kind of ripped my husband for being so insensitive yet again. He is a wonderful husband, great father, and my best friend. I don't expect him to read my mind, but I asked him to re-read my text message from earlier in the day and explain what I *should* have said to help him understand my mental state since he obviously didn't appreciate the terms "anxious" and "nothing to eat". I'm still kind of pissed. I mean, he skips my diagnosis day. He talks about stupid, insignificant things when its obvious that I'm stressing. And I guess I think he's just being really insensitive, even though I've told him my needs. I don't just pretend like everything's okay, I send him messages or I tell him that I'm freaking out. Meanwhile, he's on the internet looking at cars. So, I asked him to grill up my effin 'organic' chicken while I focused on preparing low-iodine sauces like ketchup, bbq sauce, and oriental sauce. I liked the smell of the ketchup and oriental sauce. But the BBQ sauce, I'm pretty sure that's going in the trash. Anyway, the chicken will be a godsend. I have 8 servings all grilled up, and chicken I can eat cold out of a cooler on the road, as compared to other meats. But I can only have 6 ounces of meat a day, so can't solely rely on that.

Anyway, I finally sat down to dinner at 9:30 last night (normally prefer to eat around 6). I had a salad with a little less than 3 oz. grilled chicken. And then some no-salt peanut butter and jelly spread on some kosher Matzos crackers. Elana has reminded me this will bind me up, so I have written myself a reminder to get out the colace and senna from my c-section. I actually couldn't finish the cracker sandwich, because it was so filling. So, the night ended up on a high note - I could get full on this diet! But all of my organization is going to be required to make this work.

Tonight, I will be making up some more low-iodine recipes for the trip, and packing up our stuff. Our goal is to have the car packed tonight, so we can just jump in and drive off tomorrow after work. It's a 6-hour drive to my brother's in Iowa, so it will be late when we get there.

This morning, I'm enjoying a fruit smoothie for starters, and will follow this up with some oatmeal with cinnamon/sugar/apple. If I'm still hungry, I've packed my kosher crackers. I think I may live on those for the next two weeks! And I also brought some carrots to snack on, as well. I will need to go home at lunch to prepare some sort of salad with my chicken. But I also wanted to go get the scar treatment from my dermatologist's office so I can start working on my 'frankenstein' scar on my neck.

I promise my posts aren't going to stay this long. I just needed to vent about my night. I am going to accept my emotions and feel them. But I also need to function, need to be organized enough to be able to eat during this time. And so, it would not have been helpful to collapse at the store last night. Would also be helpful if DH would take his head out of his ass and perhaps be a bit more attentive so I don't have to reach freak out level. It would be nice if he was attentive and sensitive and supportive, instead of dumb-dee-dumb-dee-dumb which only raises my level of anxiety.

Oncology 101

Somewhere in the middle of the cancer diagnosis, I missed announcing my 200th post. So, a little belated congratulations to me.

It is 12:03pm. My DH is sleeping. My boys are sleeping. I cannot. My mind is racing.

We met the oncologist and his staff today. I'll try to think of everything we learned that you might want to know.

My tumor was 'medium' sized. It was 3.5cm. The oncologist said if it was 1, he'd say small and 6, he'd say large. But even though it was only 'medium' he still kept saying he wanted to test things because of its size, and because it was invasive. So, in the next few weeks he'd like me to see an endocrinologist for an ultrasound study of the neck - to study the lymph nodes; and maybe get a chest x-ray - apparently to check my lungs. Also, becuase of the size, he is more concerned about recurrence with me. That definitely got my attention, so I am glad I will have an endocrinologist monitoring my thyroid function and adjusting my meds. A normal person should have TSH of 2-4. After my treatment, I will need to keep mine at .2 to .4. So instead of being able to accept a phone call that my TSH is 'normal' for life, I will need to ask what the number was so I know that its normal for me. Also, every year I will need to have a thyroglobulin test of less than .5 - if its higher, then I'll know that I have thyroid cells growing somewhere in my body and its time to have another treatment.

They took my blood today to test my TSH. If it is high enough, they will schedule my I-131 (radioactive iodine) treatment for the week of July 13th and I will begin the sucky low iodine diet tomorrow. That will suck for me, because this weekend is the 4th of July when DH and I traverse to MN for our annual celebration with my friends from college. And I will miss all the great food at my friends' parents' homes. But, as DH pointed out so thoughtfully as he was perusing the low iodine cookbook today - beer IS an approved food during this time, so all is not lost. But still sucky.

The worst thing we learned today is that after I come home from my 1-2 night visit in the hospital, that I will have to be >6 feet away from all people, including my babies for about 8 days. So, we have to figure out what we're going to do about that. I'm thinking maybe volunteers to help DH in the evenings from like 6-9. And I'm thinking I will 'live' in the basement during this time. My boss will let me know when she gets back from vacation next week if she wants me to work from home those days, or if she thinks it will be okay for me to work in my office. It's a large enough office, but people can be weird about these things, so I'm letting her make call. She didn't like my first option - which was take the time off without pay (since I'm out of sick or vacation leave until October). That was very kind of her to share up front. And takes some of the stress off.

I can't imagine how hard it will be for me to be lying in my basement while friends and family hang out with my husband upstairs, holding my babies and caring for them while I'm perfectly capable yet poisonous to them. I would really rather not be here, I think, but then again, at least this way I could look at them from across the room or hear my husband's voice. I expect a lot of tears leading up to this, and during those days. Probably need to stock up on Kleenex. I feel bad for DH who got a clunker of a wife. Fool should have bought the extended warranty. Even though I know I didn't ask for cancer and this can't be helped, I will definitely feel like I need to make this up to him somehow. And that's just the 8 days. That doesn't count any days/nights I can't contribute because I'm so freaking tired from the hypothyroidism. Poor DH!

Ok, new topic. This is depressing me.

The oncologist said that I have had great medical care so far, and was familiar with both my OB and surgeon. He said I could have my treatment sooner, because although no surgeon in the world could get 100% of the cells, with my surgeon, there would be very little thyroid left in my body.

So, the goal for now is to get my TSH level high. Normal is 2-4. I need to be above 30 - preferable at 50. Two weeks before that anticipated date, I will start the low iodine diet. 5 days prior I will take lithium, which helps 'glue' the I-131 on my thyroid, and some salivary drug that helps my salivary glands to produce extra saliva to flush them so the I-131 does not stick there. If it did, I could swell up and perhaps suffer permanent dry mouth, and some other negative side effects. The other things I will do to prevent damage there is suck on lemon drops while I'm in the hospital to stimulate the salivary glands and drink water like nobody's business.

Side effects of the lithium include nausea and diarrhea, so I have some nausea medication prescribed as well.

The good news of these prescriptions is I have a coupon for Target for $20 if I fill a prescription there between now and July something. So, I will be buying myself some formula while I'm there ;0 Always the cheapskate!

8 days after the I-131, I will have a full body scan which will tell us if it has spread, and if so, where. And that will be good to know.

Let's see. What else? I think that's about it. Final thought is just that I was so concerned with the appointment for myself, I never thought about sitting in a waiting room with other cancer patients. All of them were older. All of the women were losing their hair and so were wearing scarves or hats, but you could see they were bald. It was sad to think I'm one of them. And yet I feel like a phony. Like I have some 'fake' cancer that isn't real. I will gladly take this 'fake' cancer. I will be delighted to get off easy. But at the same time, I am searching for the right level of concern. Should I ratchet it up and be prepared for the worst? Should I calm it down and stop dropping the 'c' word all the time. Oh this? It's just a little thyroid issue. It's nothing. Really. Struggling with that. And the weepiness that comes and goes.

A colleague who had a cancerous kidney removed 7 years ago stopped by my office today, because my boss had shared the news with him. He teared up for me. Which made me tear up then and does the same now. It's all very humbling. This outpouring of love and concern. I can't even return all the calls in one day, because I want to think of something other than cancer, and some people, well, I'm just not ready to talk. Like my grandfather. And my sister. But I returned a lot of calls today, and I'll get to more tomorrow. And lastly, it kind of pisses me off. Because I feel like I suffered more with our infertility and nobody showed me this much support during that. I understand IF isn't life threatening. But it certainly was all consuming. And threatened the life I wanted and saw for myself. I'll get over it. But I wish I could have had this much support a year ago.

Mother F!

Are you f'ing kidding me? I just lost my entire post. And it was brilliant! B.R.I.L.L.I.A.N.T. I tell you! I guess it gives me an opportunity to use my new favorite phrase - MOTHER F!!!!!

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Thank you, whoever posted our bad news on the LFCA. I've only ever been listed one other time - when I got my BFP - so thank you. I really appreciate all the support. You're the best!

Last night, my DH was gone overnight for a work trip for his new job. The boys were mostly good for me. It was a big accomplishment - my first time alone overnight with twins; but also my first night alone in this house E.V.E.R. We've been here 6 1/2 years! Yes, I did lock the door between the garage and house. And yes, I did hide the biggest knife in the house in my nightstand. But otherwise, all was well.

The boys both slept through the night, waking at 5:30am for a bottle - Will's 3rd night in a row sleeping through the night! Jack's umpteenth. Will went right back to sleep. Jack went back to bed, but let me eavesdrop on his coo's and ahh's for the next 90 minutes. How lucky am I?!

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My friend J was diagnosed with thyroid cancer last year on 6/16/08, and raised $3900 for the Race for the Cure on 6/20/09 which was one year and 4 days later for her. I was diagnosed with thyroid cancer just two days later. She is fully okay now. I need her to help me through this, and I need to remind myself of her story until mine is resolved.

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I really wish I could remember what else I had to tell you all, but it escapes me now. I guess I'll just give you a few new pics. I have SO much to live for!

Little Will - nap time

Big Jack aka The Dude