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!!!!!

***

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?!

***

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.

***

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

More Cancer Talk. Less Melodrama.

Feeling better today.

The more I say the words, the less they have control over me.

I have cancer.

Thyroid cancer.

But no thyroid.

Here's what I do know. I have my 'thyroid ablation consultation' with the oncologist on Monday. It will have 45 minutes for him to tell me his 'plan of attack' and for me to ask my questions.

At some point, I will have radioactive iodine treatment, which is administered at the hospital, they keep you there until the radiation reaches a safe level and your bodily fluids when excreted for 'flushed' would not harm the public or loved ones. To prepare for this, I need to go without a thyroid for about 6 weeks. During that time, the thyroid hormone in my body will dissipate and I will become more and more tired and grumpy. The last two weeks of this, I will be on a low iodine diet, which will starve the thyroid cells in my body so when the radioactive iodine is administered, the thirsty cells will soak up all the poisoned iodine. And then they will die.

At some point, I will have blood work and a full body scan to determine where else the cancer may have spread. And that is what scares me the most.

Lots of tears. Lots of weeping. Lots of hugging my boys. I was mostly fine today. Thank you for all of your well wishes. They mean the world to me, from you, the ladies who have supported me through so much already. I'm so lucky to have you.

Please pray the cancer has not spread and that the radioactive iodine will kill whatever remains of my thyroid cells.

I have cancer.

Bits and Pieces

Irony
Last night, while sitting in the Walgreens parking lot with the boys while DH went inside to pick up a prescription, I found myself seated next to another idling vehicle. Inside was what at first appeared to be a large bearded man in a local grocery store uniform. But then, I noticed the pony tail and breasts. It was indeed a bearded lady. She was smoking and talking to the driver in her vehicle, apparently waiting like me.

Waiting patiently for DH, I let my mind wander to how unfortunate it must be, how I would make laser hair removal a big budget priority if I had this affliction, etc. etc. etc. Finally, my mind wandered elsewhere. However, a few minutes later, I looked over, and the driver of the vehicle had leaned forward...\and the driver was PLUCKING HER EYEBROWS. Ironic, huh?

Text Messages
My SIL and I's pregnancies overlapped, so we were always calling and texting each other with our daily food report - confessing how much and what variety of fattening foods we had just consumed. I had the boys two months ago, she had her little girl last Thursday. Earlier this week, we had the following exchange:

A to SIL: We probably shouldn't do this since we're not pregnancy anymore, but I just ate the most delicious and fatty cheeseburger at McD's.

SIL to A: I'm jealous.

A to SIL: I'm fat.

Me
The weight which had dropped off on its own before (was up to about 230 on d-day), has now plateaued and I am hovering around 180 which is to me is still like 50 pounds overweight for my 5'4" frame, but only about 13 pounds heavier than my pre-pregnancy weight (thank you, fertility treatments!). And my body has changed shape. I definitely have a FUPA. So gross! I eat frozen diet entrees for lunch, but eat whatever I want for dinner and don't exercise, and am aghast when the scale stays the same. MUST.CHANGE.SOMETHING.

Twins
The boys had their 2-month appointment last week. Both weigh around 11 pounds. Both are smiling and cooing. Both are sleeping through the night. We are so blessed!

DH
My DH started his new job yesterday. He went ZERO days unemployed, which I think is absolutely amazing, given the economy. He took a cut in pay, but gets a straight 8-5, M-F job so he can have a family and friends. I get to have the marriage I signed up for.

Thyroid
My follow up appointment is next Monday, 6/22. I will get my pathology report then. I still have not crashed. And am still hoping the hormone replacement therapy will help me with the topic discussed under Me.

Thyroid - ectomy

I should probably be asleep, but my mom has me addicted to Farm Town on Facebook, so I had to check on my farm!

So, about my surgery.

The surgeon was late, which is why I was playing Farm Town in pre-op. I don't remember anything about surgery, because I was of course totally out of it. I was texting my boss when I got the sleepy drugs, and my last words to her were 'nighty night' ;-)

Woke up hearing a nurse telling someone on the phone that I had my entire thyroid out. If you remember, it was only supposed to be the right side and 'maybe' the left side if he right had malignant cells.

I never saw the surgeon after the surgery but he told my husband that the nodule was on the left, too, and I would have ended up having it out in 2-3 years anyway, so he chose to do it all at once. So, I don't have to worry about a second surgery tomorrow. However, that means my pathology report is no longer a rush and so I won't know whether or not it was cancer for at least a week.

The other bad news is that because they removed the whole thyroid, I will need to be on hormone replacements for the rest of my life. I am not on anything at this moment, and so am anxious to hear when I will start those meds and how they will be regulated. I guess that getting just the right dose is an artform and if its wrong I'll gain (even more) weight and be tired all the time. My RE recommended a regular endocrinologist for me, so I am hoping to get in to see him, and soon.

I think the surgeon or his resident will be in tomorrow morning, so I can get all my questions answered then, before they release me.

Regarding my recovery, the pain meds made me itchy, so I had some Benadryl which made me sleepy until about 8pm. I had sent my mom and husband home earlier, but when I woke up, I felt fine. I had only had Tylenol for a headache since my surgery, so no real pain meds, which is good. I took a real drug - Percocet - right before DH brought the boys up to say good night, because I thought I might be moving around more with them here. But otherwise, I think I'll be almost 100% tomorrow.

I have about a 4" incision at the base of my throat, only covered with one layer of bandage right now, no big deal. However, there is a 'suture removal kit' taped to the hand rail on my bed. I don't know if that means they'll take sutures out tomorrow, or if this is a take home deal, or what :o So, I'm definitely anxious to hear from a surgeon tomorrow to figure out what all is going on.

Oh, and no drain. Which was like the best news ever. Just the idea of a drain makes me want to barf.

Thanks to everyone for their warm wishes and advice. Keep 'em coming til we get the results back, okay?

p.s. Typical husband - DH got lazy in my absence and chose sleep over organization, so he sent the boys to daycare this morning in the SAME CLOTHES they worse yesterday. So embarrassing!

The New Me

It seems like I can never find the time to post anything these days. And by the time I do get around to thinking about it, well, by then, I've forgotten all the things I thought I wanted to say. So although I need to return a bunch of emails, I'm going to post tonight.

Earlier tonight, I found it poignant that my life is nothing like it used to be, and yet its completely the same. I have the same job, same friends, same house, same car. But I have two more people to love, and they bring us absolute joy with every breath. Absolute. And so I'm nothing like that person I used to be, but yet I feel the same. I'm still getting used to the idea of my identity changing to include 'mom.' So weird.

Another interesting thought I had earlier, although probably not exactly p.c. is that one of the greatest gifts a man can give his wife (once they have kids) is a peaceful bowel movement. Yes, I know its gross, but seriously, being able to go to the bathroom without having to jump up to take care of crying baby or not stressing while finishing because there is a baby crying, well, that is just heaven!

I got my period yesterday which really blows. Although I am pleased that my body works, and I know many women out there are counting their cycle days go higher and higher and wondering if theirs will ever show, I still wanted to go a bit longer cramp-free. But low and behold that all too familiar feeling crept up on me, and I knew instantly what it was.

I had my pre-op appointment for my thyroid surgery today, which was total crap. Why couldn't I have had my temperature and blood pressure taken the day of my surgery? What a waste of time?! I will have my right hemisphere removed on 6/11 and if its cancerous or questionable, the other side removed on 6/12. My mother is coming to stay with DH and help him take care of the boys while I'm in the hospital (1-2 nights); and will stay until I don't need her anymore. I'm hoping to go back to work the following Monday, although I hear that is crazy talk and I should plan on two weeks. Seriously?! Two freaking weeks?! NO WAY! I'm sorry, but I was only allowed to work half days from Jan 4 - April 9, and then had 6 weeks stuck in this house. I will fight tooth and nail to go back to work as soon as possible. Hopefully, my body is a willing participant!

Next week is kind of a big week, I guess, because I'm having a mole removed on my stomach on Monday. A scary looking mole that just became uglier after my stomach grew and contracted. The boys have their 2-month appointment on Wednesday, and then the thyroid thing which will pretty much kill next weekend, huh?

Last bit of news, I'm 'trying' to diet, but am having a hard time being motivated. You know how the first day of your period you are bloated, so even if you had lost weight the scale wouldn't show it. Plus, the first day of your period you could eat a house of chocolate. Well, that's me. I can't seem to get away from 180. There. I said it. I'm 5'4" and I weight 180. But I weighed about 167 (yes, about an exact number, ha!) when I got pregnant, so I'd like to at least get to that, which is still about 40 pounds overweight. I started when I went back to work last week and still weigh today what I did back then. I think I might need to step up the plan. But....probably after I recover from surgery. Yeah, probably after that.