Monday, June 29, 2009

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.

3 comments:

G$ said...

This isn't a fake cancer and it certainly doesn't mean you are getting off easily. Don't feel guilty over that because, like in IF, comparing whether your suffering is worthy just sucks. This is taking over your mind, your life right now and you need all the strength you can muster to get past this. Don't let guilt. Or try not to, at least not for the worthy part.

Sounds like you have a good set of care providers. And
And
And

You can have beer this weekend. Really, what else could you possibly want?? :)

You are in my thoughts. I will drink some beer in spirit with you this weekend. You will beat this, your struggles with IF have made you resilient and strong.

xoxoxo

Jess to the Lo said...

"If you hold back on the emotions--if you don't allow yourself to go all the way through them--you can never get to being detached, you're too busy being afraid." (p.104) (Tuesdays with Morrie)

Reading your post, I thought of this book, not Morrie's story of him leaving this life, but of Morrie's passion for life. He explains at one point that when you have an emotion, being sad or whatnot, you need to take that moment and truly feel that emotion. Once you have truly felt that moment one can move on.

It's ok to be sad. It's ok to feel depressed. It's ok to go out and buy stock in kleenex.

Even though IF and Cancer are different they are both life changing.

I am glad that you are getting a lot of support during this, and I regret to hear you did not receive the same support through IF.

I know that for me, I will be here as your blog buddy every post you make. You and your family are in our prayers. I am glad to hear you have such great Doctors right now. You can do this, I have no doubt!

Elana Kahn said...

Good luck with the matza...it's not fun to eat and will stop up "the works", so ask the doctor for something to keep you regular. :-) I'll be thinking of you too and giving you good low-iodine vibes.