headaches – beatingcowdens

We are two for two this week.

Monday the orthodontist referred us back to the dentist. The OVERGROWTH on Meghan’s gum may warrant an evaluation, and possible oral surgery. But first – to the dentist Thursday.

Tonight, an annual eye doctor exam. Admittedly we are 3 months late. There was the hurricane, and then Grandma fell, and then the car accident, and then… it was January 29th.

I knew her eyes were worse. She told me she couldn’t see the charts in the room. Her teachers asked when she would have another eye evaluation.

She had gone since kindergarten without a new prescription.

The onset of headaches, correlated with the decline in vision over the last three months makes me uptight.

She read 20/50 and 20/70 WITH her glasses on. I almost threw up.

Cowden’s syndrome and its tumor growth, and general overgrowth potential. can lead to the wildest imagination.

But, my husband’s sisters, Meghan’s paternal aunts, have terrible eyes. So maybe…

Then they took the picture of her eyes, and compared them to the visit of October 2011.

“Well, maybe my machine is just darker today,” says the doctor. “But there is some shading on the right eye I think you should have looked at. It’s probably nothing, but…”

Famous words. They usually lead to a Cowden’s Syndrome mess.

Not much literature on the retina and Cowden’s, but then again, there aren’t too many of us – relatively speaking.

Who am I to guess. I am closing in on 40 and just now considering my first pair of reading glasses – right on time.

I keep saying that I will call at work. Then I spend the day doing my best to put out out small fires.

And all of a sudden its time to go. Off to another appointment.

Tomorrow I will call the “retinologist.” Who knew? Thursday we will see the dentist.

Two glasses of wine tonight, and I feel like I have been beat. What a day. Early to bed – no doubt.

“It’s probably nothing, but….”

Just in case I should rest up.

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.