Saturday, July 25, 2009

Saturday Afternoon Post

I was supposed to get my scan results by phone on Wednesday or Thursday. Thursday came and went with no call. And Friday morning I was busy, so I finally left a message for them on Friday and got my call back yesterday afternoon. And the results were good. Apparently, it was a normal result for someone with thyroid cancer contained in the thyroid area. So, yay for me!!!! Yay for my husband, and for my boys!

Still won't know for sure whether or not last week's treatment worked until my follow up scan in April. And still need to get my thyroid hormone replacement regulated to 1) prevent recurrence and 2) hopefully stop the massive weight gain. But in the meantime, we are elated that it probably did not spread!

So, this is how my cancer story will hopefully go: Um, yeah, well, I had cancer for a few weeks back in '09 but it wasn't really my thing, so I gave it up.

Am home alone with the boys this rainy Saturday afternoon. DH is out doing some favor for his old business partner. And test driving a new vehicle. I hope he gets home soon, just because we kind of haven't had any time together, even though he works better hours now, it seems like we spend every waking hour caring for our boys or catching up on housework. And I kinda miss having quality time with my husband.

I just cried my way through the 16 & Pregnant episode where the girl gives her baby up for adoption. It was so emotional putting myself in both the bio parent and the adoptive parents position through the entire episode. I feel so blessed to have my boys and to have had them at the exact point in my life when we did. I know a lot of people hate that show, but just like the Real Housewives and other top notch reality shows, I can't give it up ;-)

I still can't taste food all the time. I thought I could taste sweets, but not all sweets, I guess. I baked some cookies this morning, and they taste like metal to me. Lovely.

I have been considering the need to downsize my car payment so have been looking at used cars online for the past few weeks. I'd like to cut that payment in half, but I still love my car that I bought last summer, and I'm not sure I'm ready to let it go. But after diapers, formula, and wipes, there's just not a lot leftover in the old grocery budget each week, and so I would like to find some place to cut back. But I love cable. And cable internet. And my car. And our house is cheaper than rent anywhere would be, and more spacious for all of us. And for some reason, I can't convince myself to eat PB&J morning, noon and night. Loser. ;-)

I think its a pretty strong indication that we can't afford to even THINK about more children yet considering my reaction to the cryobank's puny little bill for keeping our totsicles frozen this next year.

In real life baby news, my oldest (that would be Jack, by 2 minutes) thinks he wants to roll over, but mostly he just scoots himself around in a circle. He arches his back, stomps his left foot and rolls to the right, but somehow it just rotates him around. It's so fun to watch. Will is mostly content staring at things while kicking, but I'm sure he'll be up to similar antics soon enough.

Wednesday, July 22, 2009

Three Things

I had my scan yesterday. Three significant things about that.

1 - I.GOT.THE.ALL.CLEAR.TO.HOLD.MY.BABIES.LAST.NIGHT. Wahooooooooooooooooo! Will decided to celebrate by being up for about two hours in the night, hanging out with mommy in the rocking chair and couch. Precious time for me, even if it was in the wee hours of the morning. Totally worth it!

2 - I had my scan at the same hospital where I had my c-section, thyroid-ectomy, and radiation. But I had never been to the nuclear medicine area before. Um...what is the deal with leaving people basically immobile on a totally thin table with whatever type of imaging hardware that is two inches from their face while random people stroll up and down the hallway and into the adjoining bathroom?

The scan tech had me potty before my scan, and as I closed the bathroom door to the adjoining room I saw what I thought was a mannequin on the table in the next room. But realized on my way out after the scan that EVERY.SINGLE.ROOM had a person, just lying there in the dark with the door wide open. It was eery and somehow wrong that the doors weren't closed. Not that you're scanned naked or even in a hospital gown. But still.

3 - I can expect my scan results via phone today or tomorrow. And that, to me, is basically a time bomb. I know that if this has spread, that the treatment I had last week is basically the treatment for anywhere else it might be. I get that. But finding out its in my lungs or breasts or brain...well, that's going to be an emotional thing to hear. Yet, here I sit with my cell phone on vibrate, constantly by my side, waiting for that bomb to go off...or not.

Monday, July 20, 2009

Radioactive Girl Update

So, I have officially lost my sense of taste. It's a common side effect of radiation treatment. It could last days, months, or forever. No way to tell at this point. In its place, I have a slight metallic taste in my mouth. And my tongue is kind of numb. At least I had a few good days of taste after the iodine diet...oh and I'm still gaining weight. Mother F.

I went back to the office today, which was a joy! I was way more productive there than in the basement. And I'm sure being around people helped my emotional well being, as well.

I have my body scan tomorrow. Won't have the results until Wednesday or Thursday. Praying that the cancer is isolated to the neck area and has not spread anywhere else.

My husband has both boys on the couch. I type this from a folding camp chair in the dining room (MUCH more comfy than the dining room chairs!)

Last night, I laid on the couch with my lead apron doubled over by my neck with the boys on the other couch across the room. Well outside of the six foot range, but I still wanted the lead between them and my neck. It is hard to describe the emotional reality of constantly maintaining a 6 foot radius between you and any other human. THIS is why people get crazy obsessive compulsive disorders and hypochondria. I'm not choosing that, but I can see how you get there from here.

Friday, July 17, 2009

Viral Infection

So, I somehow picked up the flu this week. Was shocked to find myself vomiting at 3:30am. So, I called my PCP and was able to get in this morning. Fortunately, he has been cc'd on all of my treatments lately so he knew everything about the twins, the thyroid-ectomy, and my radiation therapy. I found that very reassuring. Especially since I'm not normally sick and hadn't seen him since....well....probably back when my husband was first diagnosed with his varicocele. So, 2 or 3 years.

It was nice to see him, and his nurse. He diagnosed me with a viral infection (common flu). Treating with 36 ounces Gatorade, a prescription to combat the trots, and ... unfortunately ... back to bland foods. The RX is working already, which is wonderful. And I've kept down all my food plus the Gatorade. So, life is good.

It turns out good that I could see him, so we could discuss how he will manage my thyroid replacement until I see the endocrinologist in October. We worked out a plan for labs on the weekend, and appointment with him on Tuesday evening which should help me avoid missing too much work.

Did I mention that he's totally hot? And the first thing he said when he came in the exam room was he liked my hair? Yes, cursed with another great hair day during isolation. I got bored and straightened it yesterday. At least SOMEBODY got to see it.

I also got a TSH test, which will be my measurement of how my thyroid is being suppressed and replaced now for life. I need it to be .1 to .2 and after two days on the hormone, it is still at a 70. Which may explain why I'm still gaining weight even though everything I eat goes straight through or comes back up.

I had been feeling guilty about how little work is actually being accomplished in this house this week. My focus is improving, but I am still not as productive as I would like to be. But I remembered how much I worked during maternity leave. Probably 1-2 hours every day. So, given 6 weeks of leave, at 10 hours a week, then I probably had accrued about 60 hours of comp time anyway. Being back in the office next week will definitely get me back on track. At least I hope.
Yesterday was a really weepy day. I am blaming the thyroid hormone. After DH left with the boys for daycare yesterday, I was struck by this image of him raising them without me. Just typing it makes me tear up again. Anyway, I was hyperventilating, all out bawling in the shower with fear. I'm strong. And most days I'm rational. But when I open myself up to the emotional reality of a cancer diagnosis, I'm scared. I don't want to die.

Tuesday, July 14, 2009

Radiated Tears

With all the entertaining photos during my stay at the hospital, I never got around to the truly deep and meaningful thing that happened to me there.

The night before my radiation therapy, I prayed to God to be with me on Monday since I would have to go through everything alone. Mentally preparing for the 'idea' of driving myself to the hospital and not having any visitors there was just bizarre. Thankfully, I'm an independent person, but I was still a little unsure of doing this all by myself.

God answered that prayer in the form of JL.

JL is a member of our church. She is a GLBT mother of 4 - two adopted special needs children and two bio children. The second bio child she had through insemination. (IF issues like us) She is a foster mother. (like us) I had been wanting to meet her for months to pick her brain, but could never get to it (they sit on the opposite side during worship and would always be gone before I could get over there). Anyway, about the second or third Sunday we brought our twins to worship, she came over to meet them. And she and I talked for about an hour that day about her foster care experience, her kids, her story. I knew she was a nurse, but she normally works in ICU.

Yesterday, she walked into my room, not really recognizing me, until I say, "Hey, I think you go to my church." And she screams out, "What are you doing????" And then caught herself, "I mean, obviously you have thyroid cancer, but where are your boys? How did this happen?"

So, we have this woman who I respect and admire, and who I totally connected with after the birth of my sons. But it gets even better. She had thyroid cancer two years ago and has already had the treatment!

She spent about 30 minutes with me, talking to me, and telling me her story. We compared new pictures of her kids and the 3-month pics of our boys. And I'm tearing up just recounting it now, because I know in my heart that JL was God with me that day. I wasn't alone. He sent her to comfort me. It was and is amazing how he answered my prayer.

God is good.


Last night, I was the recipient of a text-a-thon from a bunch of my drinking buddies at work known as the Deuce-one-Deuce. I'm the only female, which makes it especially enjoyable for me. Right around 8pm, I started receiving texts and phone calls from these guys who were students in a Management Development course I teach. There were my second class, or the 2nd graders as they call themselves.

My favorite one was from one of their wives, "Please call me if there is anything I can do. Anything. Errands. Cooking. Cleaning. Glenn is grounded from Sam's Club so I'm sure he'd be happy to get you anything from there."


And then today, I walk out to the mailbox to find a care package from my friend J.

J. was one of my rooommates in college. We weren't really friends, we just got along well enough to share a room. We both worked. I was a waitress. She delivered pizza. We had no friends in common. We did not socialize. But we chose each other, year after year. It just worked.

When we were juniors, J. became pregnant. The father and her had been dating, but he kind of flipped out on her and wasn't really supportive. So, I went to childbirth classes with her. And sometime that summer, she went on bed rest to prevent pre-term labor, so childbirth classes ended. I remember joking that the childbirth people thought we were 'together' and I remember she layed on this inversion table with her head below her heart for awhile in that hospital. She didn't have a lot of money, so up until this point, she hadn't had a lot of pre-natal care. A few weeks later, she picks up on something the nurses are saying and figures out she is having twins. I shit you not, she had no idea there were two in there! And she gave birth to her twin boys less than a week later! And I got to babysit them both on Valentine's for her, when they were about 5 months old. Which may be why the thought of my own twin sons was not so overwhelming. I've always lovingly referred to them as my Valentine's dates.

We graduated from college in 1999. Since that time, she married the twins' father and they have a daughter now. They live in WI. We live in KS. I was in their wedding. She came to our wedding. But those are the only two times I've seen her in 10 years. We talk on the phone maybe once a year, and rarely email. But oddly enough, she was planning to bring the kids here for a visit this weekend. Until I called her about the cancer and radiation. Now, its just her coming to visit, to help DH with the boys all weekend. A perfect helper - someone with experience with twins.

What are the odds?

All those years ago, I wasn't a very good friend to J. At least I never felt like I was. I was a pretty big partier, and she never touched a drop. But she remembered some handheld Solitaire game I bought her for the hospital and wanted to repay the favor. So, today in the mail, I found this care package. Magazines. Lemon Drops. And photo frames to take with me to isolation. One day too late for the hospital. But just in time for my basement quarantine.

I was so touched, and so moved, that not only is she coming to my home all the way from Wisconsin, but she sent me such thoughtful items. All with little sticky notes on them. I am humbled by her consideration and care. Really. What could I have ever done to deserve all this?


If I don't stop crying these radiated tears pretty soon, this place is going to be an EPA superfund site.

Radioactive Girl Goes Home

I am home, which is mostly important to me, because it means I can eat whatever I want. And ... all the remotes go up AND down ;-)

I am sequestered in the basement. It's difficult not to touch anything when I venture upstairs for ice. There are dirty bottles on the counter that I want to put in the dishwasher. A pacifier on the table that should go in the binky box. Etc. Etc. Etc. I just want to straighten things like I would under normal circumstances.

I've had my lunch and some soda and I'm feeling better already. Still not ready to focus on work, but I definitely feel better. Have somehow become sucked into a 7th Heaven marathon.

Oh, and here's what's left of my lunch. (Last picture, I promise!!!!!)

I'm Movin Out!

Have you ever heard Anthony's Song? The meaning doesn't really apply to me, but the refrain, oh the refrain....IIIIIIIIIIIIIIIIIIIIIIIIIIIIII'm movin out!

The geiger count has been read and apparently the 20 gallons of water I drank yesterday worked and I have effective flushed my system of enough radiation to go home any minute now. Woo Hoo!

I have a few things to get off my mind before we move on to the pictures.

1 - I drank enough water in the last 24 hours to make even the idea of water cause nausea. Not that I would throw up, but just the idea of taking one more sip made my stomach roll. Not fun.

2 - I hate hospital remotes that make you flip through every station, where you can't punch in a number or at least go 'down'. I scrolled through the medical crap so many times last night, you know, the educational channels offered by the hospital? Well, one theme that I kept noticing was breastfeeding. Which always makes me kind of wish I had tried longer or more to nurse our boys longer than the whopping 3 weeks I survived. But I keep reminding myself that if I had, I would have had to give it up now anyway, which would have been just one more added stressor on the diet, the hospital stay, the remoteness and perhaps made this harder for them and DH as they would have been so accustomed to me! So, anyway, that's that.

The warning posters on my door. I'm not exaggerating when I say that the nurses and food service people would open my door, stand in the hallway, and ask me questions. I'm afraid had I gotten up out of bed and walked toward the door, they would have backed even further away.

Last night's dinner - one piece of plain chicken, one baked potato with no skin, lime jello. I don't think I can ever stomach a baked potato again. The texture, the flavor, all of it! Gag.Gag.Gag.

Breakfast this morning. Another gagger - plain oatmeal that I churched up with some banana slices and sugar packets. I didn't finish it. Couldn't. I was getting nauseas from all the mushy blandness. I'd rather go hungry!

Monday, July 13, 2009

I-131 is not a Freeway

Greetings from Radiation Therapy!

I am stuck in the hospital, feeling just fine, for the next day or so.

To pass the time, I've brought work, my laptop, the second book in the Twilight series, my cell phone, two letters to write, and my camera!!!!!

So, for my first blog in radiation, I thought I would send pictures of my hospital room. It's oh so...private ;-) Mysteriously, no one gets to room with radioactive girl.

There is a paper trail from my bed, to the toilet, and lots of paper in there. My urine will be radioactive, so they try to minimize the contamination in the room. I've also been instructed to 'flush twice' after each trip to empty my bladder. I'm also supposed to flush any food I don't finish.

This big trash can is ALL MINE! I will use it to dispose of my plates, cups, utensils and any food I can't flush. Notice more of the paper trail on the floor.

I snuck this photo of the cannister the pill came in when the oncologist wasn't looking! It looked scary and menacing and they kept talking about "half life" this and "gamma ray" that. I don't think they saw me take this shot, but if they did, then I guess they'll know what a freak I truly am. The pill was inside in its own glass case. It was blue.

Only in isolation could I have such a fabulous hair day. Had to snap a pic as evidence! Sorry, its blurry. I'm kind of dizzy most of the time thanks to the whole no thyroid hormone thing.

Unfortunately, the low iodine diet continues until I'm released from the hospital. This is a plain hamburger patty, and a baked potato with no skin. I also got a plain lettuce salad with no dressing, which I promptly flushed. And some fresh fruit, which forced me to pick around the melon to get to the two slivers of strawberry and 4 grapes. It was a bland, boring meal, but reasssuring that the food I've been eating at home has been right on track. I may have to move to Idaho if I eat many more potatoes!

More News Later,

Tuesday, July 7, 2009

The Potato Metaphor

Tonight, I was preparing a salt-free pot roast. Unexpectedly, when I cut into one of the potatoes, I found a huge black rotten spot in the shape of a star. That darn potato was rotten at the core.

Somehow, this reminded me of me. Not that I'm rotten. Naughty sometimes, maybe. But not rotten. But I do have a black mark inside me, a cancer that you can't see from the outside. And that caught me off guard when they cut into me.

I'm sure that's how many women suffering through IF feel, too. Like there is this hidden black space in their uterus, ovaries, cervix, etc. etc. etc. I never felt that way, since we have MF. But I thought the potato was a bit too meaningful today. F that potato symbolically reminding me that there is this cancer within me.

Wednesday, July 1, 2009

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.