Friday, June 8, 2012

Ripples & How I found out about this whole thing

When I'm sitting down to write, I see what I want to say in imagery, oftentimes. The image I see when I think about my journey with cancer is of a water dropping into a pool and the resulting ripples. Here's a handy map of where I think I am, currently.

The way I see this processing thing visually is like this. The most energy is spent just absorbing the impact of the asteroid of the bad news that you get. Then there is this deep withdrawal of energy as you go inside (yourself, your family unit, your community, whatever) to sort out what the hell this new force means.

Time passes, the energy dissipates but in the mean time, there are ups and downs- good days, bad days.

Obviously it's more complex than this but this is the visual that's working for me right now. I feel like I'm on the upward slope of the deep concussion that this has created in my field. I am going to have dark days and thankfully, I'll have a lot more light ones.

I keep thinking about the post I wrote yesterday about how I'm taking care of myself. I'm glad I wrote it, it holds me accountable - and on the other side, I feel just a little embarrassed because I do know better, I know how silly it is - and I can just keep choosing better at every opportunity and not feeling guilty when I choose to indulge. I can choose not to eat anger and bitterness.

So one of the questions that I keep getting is "How did you find know something was wrong?"

Every time I am asked this question, I hear the deeper question of, "Have I experienced what she did? Should I be worried?" They compare what I tell them with what they have personally experienced and when it doesn't line up, there is a sense of relief.

So here's the poop.

I have been pretty good about getting physicals every few years all of my adult life. I have health insurance, I might as well use it, I figure. At every physical I can remember, I've been told I have an enlarged thyroid gland. We'd do blood tests to make sure my blood thyroid levels were where they should be (they always were) and then we never worried further about it.

I had a physical in January of this year and again we did the tests and all was fine. In February, I noticed that I could feel something just pressing at the base of my esophagus (gently press your finger against your throat, not enough to cause you pain or discomfort but just enough that you feel it on your windpipe - that's what I felt). I knew it was probably my thyroid and I didn't think a lot about it, I just made an appointment and expected to have an ultrasound and be done with it.

February 17th I had the ultrasound and while I didn't get to see the ultrasound (your head is tipped back so your throat is well exposed), I did catch the last snapshot which was this.

So if you're looking at it, the round thing in the center is my windpipe. The tumor is on the left side of the imaging but it's actually on MY right side.

The report on the 'cyst' at the time said:

There is a hypoechoic mass medially in the mid right lobe at the junction with the isthmus it demonstrates increased through transmission compatible with as colloid cyst. And measures 1.3 x 0.6 x 1.1 cm in size. 
There is no other thyroid nodule.

Basically what it says is that it there's a mass that looks like a colloid cyst and no other visible nodules. So, yay! It's probably a cyst, a normal thing that happens to thyroids everywhere and I don't have to worry too much... but we should do a fine needle aspiration biopsy to be sure (FNA). Aw hell.

Somewhere in the midst of all this, I developed an infection in a lymph node up under my right jaw. I had never heard of lymph nodes getting infected (I know they help with infections, but I didn't realize they GOT infected) so of course I google it and find out that it can be a response to cancer being nearby. This worried me a little but I think I did a good job of staying grounded and not freaking out too much at this time. The infection was cleared up with antibiotics but the node continued to bother me, feeling like it was getting pulled or just generally uncomfortable. Not tender to the touch, but like something was awry. 

I started having to think about whether I had cancer. I got really scared and had intense writings and processing and went into the inner world of trying on, "What if I have terminal cancer?" What would it mean, how would I tell my kids?

It was so good for me to do that because after a few days of that, I moved forward knowing that I would just do what needed to be done, no matter what the answers were. I set those fears aside, and focused on the biopsy.

I was pretty scared of the biopsy because I'd read that it was very painful and painful for days afterward. Getting the biopsy was relatively quick and easy, and uncomfortable but not terribly painful and afterward was pretty much fine, too. The people who took care of me were stellar so we got the info and then we waited for the result. I was not worried about the results, I just wanted to get them so I could go on with my life.

Three days later, my results said:

Sparsely cellular aspirate comprised of follicular cells with architectural atypia. Colloid is scant to absent. A repeat aspirate after
an appropriate interval of observation may be helpful if clinically indicated.

This basically says that it's not benign, but not malignant - it's a status of result that can become malignant in 5-15% of the time. There were no colloid cells so we couldn't call it a nice benign colloid cyst anymore- now it was something just a little more nefarious. Not cancer, but.. not NOT cancer, either. The next thing to do was to just wait three months and have a repeat and hopefully there would be no change. If there was no change, I'd probably have another FNA six months later (it felt like we were waiting for cancer to show up). 

In the meantime my lymph node was bothering me a lot and even waking me up out of a dead sleep sometimes, so I emailed my doctor to let her know. She decided to bump up the biopsy so I went in on May 18. The biopsy sucked but I had decided that unless it was cancer, I would just keep having biopsies until I needed something else, because I didn't want to have a surgery just to avoid the biopsies.

Then on Wednesday May 23rd I called to get my results. Previously I'd never had any trouble getting results over the phone. This time, the nurse said, "I will have to have a doctor call you back." 

Here is the actual result:


And that should bring you up to speed to the blog.

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