Friday, September 02, 2005

KO'd

(posted on the Thyca Support Group)
I just got back from a follow-up ultrasound with my endo. My Tg at my last bloodwork a couple of weeks ago was 1.4, and she wasn't happy about that, so ordered the u/s. I've been noticing more trouble swallowing lately but was hoping it was scar tissue.

Apparently there are a lot of nodes and they are pretty sizeable. I have copies of the u/s films giving measurements for 5 different nodes along the right cervical chain. One was big enough that she decided to do an FNA on the spot.

So she's sending me to MD Anderson Cancer Center in Houston for evaluation and treatment. She said that at 3 months post RAI, there was still too much going on in there. I know that RAI continues to work for 6 months and sometimes even longer, but I didn't argue with her.

---

If anyone has any advice on retrieving rugs that have been pulled out from under you, I'd appreciate it. I was just starting to get into a groove here, getting a good routine going with the kids and arranging things so I could start swimming myself. I'm going to try to hang onto it as long as I can, but if I'm going to TX for God-only-knows-how-long, and having the most horrific surgery imaginable, it's going to be hard to keep it up.

This is so NOT FAIR to my family. Why should they have to put up with this? Why can't we just be normal?

All my (short-term) hopes are now dashed. I'm cycling between fear, sadness, and anger, having just hit the "pissed off" stage while typing that last paragraph. I have no idea how it's all going to work, or what the timing of anything will be. This is not exactly the kind of news you want to hear any time, but it totally sucks being put into the referral loop the day before a long weekend starts. That means literally nothing can happen for the next 3 days.

I can't do a thing until I hear from someone who tells me what I need to do. So I guess I will try not to obsess (ha) and relax while I can. Meanwhile:

AAAUUUUGGGGGHHHHHH!

4 comments:

Papercollector said...

Jo, what horrid news, it sucks. you must be freaked. Do what you can and be positive! Why Housten? --- j

Sheik Yerbootie said...

Hey kiddo, chin up.

Look, you know my approach to these things, but allow me to reinforce it by parable if you will.

Last week, my oldest brought two of her patients up to Dana Farber for a consultation - she's pretty attached to these two for a couple of reasons I won't go into here.

One of these "kids" was ten years old and had lost a leg to cancer. Bright, articulate - wonderful personality. We all took a ride out on Narragansett Bay and had a great time.

As the discussion turned to current events, this young lady said something that just reinforced my own personal belief.

"Anyday I get up and put my foot on the floor is a good one."

She clearly said it to shock me a little and see how I'd react to her statement - I didn't bite of course having been through this kind of thing with kids before.

The point is this. We can either enter into rounds of how come and why - or just get on with things.

If you want to swim, then do it. Don't hold back - get-'r-done. If you want to run a marathon, then train for it. Think Lance Armstrong - perfect example.

This young lady - child really - jsut puts that all into perspective.

You will feel better about it - really.

Of course, you know that you are clearly in my thoughts and have my best wishes.

PS: As an aside, many years ago I had a young engineer who came up with adult onset lukemia. At first, it was tough for him, but for some odd reason, he set a goal to run the Boston Marathon - in the middle of the therapy of all things.

Damned if he didn't do it too. And at his last Doctor appointment, was pronounced to be in complete remission. The only thing they could some up with was the running - combination of elevated body heat (read sweating) and exertion (increased heat rate) combined with the chemotherapy did the trick.

Think Lance Armstrong - seriously.

Tell you what - you set a goal of running the Boston Marathon in two years and I'll join you - we'll make it a contest as to who will actually do it.

Seriously.

Mamasita said...

Joan, when I clicked on the link about your surgery, the only thing I could say was "holy hell!". I'm very sorry that you are having to face this. I KNOW what it is like to have serious illness and have young children and a husband that you want to take care of. Just remember that if you do what you need to do, you'll be ABLE to be there for them. Yes, it sucks...big time. Yes, it seems completely unfair. You have have had numerous medical problems over the years. I'm not a bubbly person by nature and I rarely get all "perky" just to get through an ordeal (which this truly is), but I would have to echo teafran. There is a book my mother read back when she first was diagnosed with breast cancer. It was called, "First you cry." I thought that was appropriate. First we freak out, cry, scream, stomp our feet and then we pull ourselves together, draw up all the strength we can from the soles of our feet upwards and forge ahead into the unknown. You are a very strong woman. You can do this. Try not to go into the "guilts" over the kids. They will be fine if you stay strong. I'm not saying don't share anything with them. (I'm very honest with my kids and they pretty much know all that is going on), but if they see you forging ahead, they will too.

Again, I'm very sorry you are having to go through this. As you know, I've been there when the shoes didn't stop dropping.

charletg said...

Joan - I'm just reading this today and I'm so sorry. No great words of advice here. Just the profound hope that all goes well for you and your family. (((HUG)))