Surviving this week: July 8-14, 2012

I wish we were talking
this kind of softball.

So, I have this idea for a regular post about life as a cancer survivor and this may be the first one. Or it may be the first and last one. I’m flakey like that.

The idea is that I give myself one post a week to give you a quick little overview of how fun and exciting life can be as a survivor! I’ll talk about doctor’s appointments, medication or whatever happens to be on my mind at that moment related to cancer.

This week: softball.

Ok, not really softball, just the feeling of a softball. In my gut. Or maybe in my pelvis. Or my flank. Or my hip. It really depends on the day. When I roll over in my sleep and am awakened by pain 3 or 4 times a night, I can tell you, though, my only thought is “who put the fucking softball in my bed?”

We’ve been looking for the cause of this softball for a few months now. I was thrilled that we seemed to have found an answer when I took a urine test and it tested positive for a urinary tract infection. Hooray! Something simple to solve. One round of antibiotics later and I could no longer feel the softball pain. I had high hopes this madness was over. About three days later, the pain came creeping back.

I called, took another pee test and, sure enough, more bacteria. A new antibiotic this time, with the same results: two or three days in, my pain cleared up, two or three days after the antibiotic ended, my pain crept back.

Third pee test. No bacteria. What? Seriously? You get back in there and look under that microscope, missy. I think you missed something.

I asked for a new pee test. I asked to see the doctor. I saw the doctor, but got no new pee test. Her interpretation of my pain was that it is abdominal. So, I got a pelvic and abdominal CT earlier this month, just before Colleen’s surgery. I got the results back a week or so later: nothing, nada, zip.

Yay! Let’s rejoice that I don’t have cancer anywhere in my abdomen or pelvic area. Boo! Let’s be really annoyed that I’m walking around in pain after an expensive test that I can’t afford and still no answer.

So, this week, I asked to follow up, now that the dust has settled in my life. However, the doctor recommended I first see a GI doctor and get a colonoscopy. I knew this was on the horizon, as she reminded me when I saw her last that I was due for a follow-up in September, so it might be a good idea to go ahead and get that scheduled. I did not know, however, that we are ONLY looking there now.

This …

annoys …

me.

Since the antibiotics worked twice, I felt pretty strongly that we were onto something with the whole UTI thing. When a pee test came back clear, but yet I was still in pain, I would have preferred to do a cheap retest, rather than dismiss it and move on to a new, outrageously expensive test.

Meanwhile, that test showed nothing. I have no colon symptoms, unless non-stop farting for the last six years counts. (Don’t worry: I’ve had a colonoscopy in that time and it was clear. I’m really only getting this because it’s my three-year follow-up. The farting is completely normal.)

And I’m still in mysterious pain. Mysterious pain that wakes me up every night.

Such is life. I’ve been dealing with this pain off and on for about four years. I was quite hopeful we had found the source of it with the gall stones last year. By the time I had recuperated from that surgery, though , (actually, in a mere four weeks), I was in for the lymph node dissection. I hadn’t had time to care that I was still in pain until this spring.

And now I wait. Part of me wonders if another year is going to pass with this messing up my life: keeping me from a regular walking routine, keeping me from sleeping right, keeping me from stuff like sweeping and bending over to pick up things off the floor that most people take for granted.

Of course, there is also the little voice that says, “well, if you are in pain year after year, then it probably isn’t cancer. Congratulations!”

That voice is a total smart-ass.

And a bit about breast cancer in particular

This week sucked in the breast cancer realm. The national organization Y-Me suddenly shuttered its doors Thursday with a message on their website that said, “It is with a sad heart that we must inform you that after 35 years of assuring that no one faces breast cancer alone, we have had to shut our doors and our hotline.”

Here is one report I found on the Chicago-based organization:

Chicago News and Weather | FOX Chicago News

Y-Me operated a 24/7 hotline where people could call for information and support. They were founded in the 1970s (a decade before the Susan G. Komen Foundation) by two survivors. That was in a time when the phrase “breast cancer” wasn’t allowed to be printed in newspapers and people just didn’t speak of it.

From what I have gathered in online venues, they blame the Komen scandal for an extreme drop in fundraising this year. While their spring race had the largest number of participants, funds raised dropped by more than half over the previous year, according to reports I read. (By the time I wrote this post, the Y-Me website had already been taken down, with their annual reports.) It was a “guilt by association” problem, they seemed to say.

Whatever the reason, it’s very sad that such a valuable organization has found it necessary to close. Like so many women, I had called Y-Me myself shortly after my diagnosis to ask questions and be matched up with someone for support. I found their resources – newsletters and emails – to be really valuable.

And if that doesn’t count for a totally sucking week of surviving, several acquaintances died of breast cancer this week, all under the age of 40, all with children — two people I knew and one who made national headlines. Alaina Giordano lost her children a year ago in a custody battle because she had breast cancer. While there is more to the custody story – as there always is with custody stories – the judge in that case specifically cited her breast cancer as a reason to place the children with their father, sending absolute terror through the many mothers I know (myself included!) dealing with a chronic disease. She was finally allowed to have her children for one month, a fact I can hardly type without wanting to throw up, but she died before the month was out.

Sorry for that amount of suck-i-tude, but I think it’s important to keep breast cancer, all cancer and chronic illness real. It blows.

Hey, do me a favor and donate a little to your favorite non-profit organization this week. There are so many who help so many people and they all could use your help. Thank you!

Author: rosie

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2 Comments

  1. Wow! What a horrible judge for punishing a dying woman like that. And what an even more horrible ex-husband. I don’t care how bad the break-up. Forget the hell he put his ex-wife through during the final months of her life, but he also denied his children their only opportunity to spend quality time with their mother.

    I’m mad just thinking about him.

    As for your mystery pain, has your gyn investigated the possibility of Endometriosis? It can cause vague intermittent pains and GI symptoms (depending on which organs the endometriomas target).

    Best of luck to you finding a diagnosis.

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  2. I know – that whole case just made me want to puke. It was sad and terrible and was a bad precedent. Just because someone is sick, doesn’t mean they can’t parent.

    Thanks for your input. I will mention that to the GI doc. I don’t have ovaries, so I don’t know if that would be an issue or not!

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