Sometimes ya just gotta blog it out.

Well, first of all – still in menopause. Hormones still whack. But a dubious psychic told me Saturday night that I’d have twins in 2 1/2 years. So, you know. Stay tuned for that.

I was scrolling through Facebook today when I came across this outstanding article: A Woman in China Tried to Cure Her Cancer by Swallowing Maggots Oh yeah she did! Because “someone told her” it would work. I read the article, while trying to stop my eyes from rolling out of my head, but here’s the thing – although I’m sure most Americans are like, OH MY GOD THAT IS NASTY WHAT THE HELL WAS SHE THINKING, it is no worse than some of the other wacky, stupid sh*t people have suggested I try to deal with my cancer. Like this bananas “cure.”  Or of course let’s not forget the “doctor” who “blew the whistle on chemotherapy.”

In a twist of fate, mere hours after I read about ol’ Maggot Snacker and mused on all the cancer misinformation there is out there, I saw a post about thermography being the new “gold standard” in breast cancer diagnosis, better than mammograms. I was immediately intrigued, in spite of the web address (Dr. Jockers? Uhhh…) A brief Google search turned up an article by the FDA regarding the fact that thermograms should NOT be used in place of mammograms and an NIH study that indicated they are less effective than mammograms but can be used as adjunctive diagnosis tools. Bummer. Nobody hates a mammogram more than this large knockered lady, believe, but I’d rather have a million mammograms than cancer again. I posted these links to my friends post, and her very kind reply was one I have come to expect, much as I loathe it: that the FDA is not looking out for us, they are following the money, that they have a hidden agenda (I guess they prefer squashing boobs to heat scanning them?), that ethical healthcare practitioners are few and far between, and that in other countries with better healthcare systems than ours, thermography is treated as equal to mammography. I asked how she explained the NIH study, and a friend of hers chimed in with a quote about how studies now are unreliable because they are done only to support (you guessed it) the FDA/the government. I also asked which countries specifically believe thermography is equivalent to mammography but she has not seen my question/not replied yet.

Guys, I don’t trust the government any more than the next guy. I think our healthcare system is jacked. I hate that so many things follow money, and I have a HUGE problem with Big Pharma. But at the same time, there are things that don’t make sense to me. If thermography is so great, why wouldn’t the FDA/other healthcare agencies be investing in that and jacking up the prices? Why wouldn’t insurance be covering it (it doesn’t) at a premium, like they do with everything else? Are we really to believe the government wants us not just sick, but dying of cancer?? That they like the additional (small but real) risk of cancer presented by the X-ray technology in mammograms? I just – I can’t buy into that. I don’t think my oncologist likes me sick. I don’t think my amazing, kind-hearted brother-in-law is becoming a doctor for the express purpose of making money by deliberately keeping people unhealthy. And I have to wonder if the people who believe these things actually personally know any doctors. (And I don’t mean Dr. Jockers – whose house, incidentally, you can apparently get a tour of on YouTube. Cool!)

Whenever people post about or message me with junk science – and make no mistake, this is junk science – with regard to cancer, it both personally offends and outrages me. The spread of this misinformation is so pervasive and SO DAMNED DANGEROUS that I just don’t know what to do or say about it. I pray none of the women in my life are diagnosed with breast cancer in their lifetimes, even as I know that is an impossible wish. I celebrate when there are REAL SCIENTIFIC BREAKTHROUGHS – like the one detailed here by CNN, wherein the big, bad, malicious FDA has approved the first immunotherapy treatment for breast cancer. (I do not know how they will continue to thrive as an organization without all that chemotherapy money, but I guess time will tell.)

I guess my plea is this: Please just research. Ask questions. Ask not just Facebook and Dr. Google, but real doctors, real nurses, friends, colleagues, and survivors. Ask everything and assume nothing. Advocate for yourself, always. Stay on top of your screenings. And don’t spread cancer diagnosis or treatment news or rumors as gospel unless you know they are corroborated and vetted and safe. Because someone is looking at you as an an intelligent advisor – maybe even as an expert – and you don’t want to be the reason they make a decision that could result in their death.

Unless you’re the FDA. Then I guess you want death and discomfort for all.

One Year Later – Cancerversary Post

September 11th was my one-year cancerversary. (pause for applause)

I don’t really know how I feel. And I don’t even know what I’ve covered before and I don’t feel like going back and looking so I’m just going to start fresh here. Some of the things I say might be repeats – just take it that I still feel the same, as opposed to me repeating myself.

Well, first, I had my first post-treatment mammogram yesterday. When I had my pre-treatment mammogram, it was nbd. I mean it wasn’t something I’d choose to do, it didn’t feel good, but it wasn’t awful.

Yesterday was awful.

I don’t know why and I haven’t yet googled it, but the mammo on my right breast (RB, or Ruby as she came to be known) was excruciating. It didn’t help that it had to be done at three different angles and then twice more with a magnifying lens. If you haven’t had a mammo, you probably only have a vague idea about what it entails. Essentially she took a shot of each breast with me sitting and facing the machine, one boob at a time smashed between a plastic tray and a metal tray, which are pressed together by a machine and then given a final hand crank. I then stood for all of the remaining shots, which also involved smashing. By the final shot, which was the very most painful, I started feeling nauseated. As soon as the shot was over I sat down and put my head between my legs so I didn’t pass out. Then I got all whiny and emotional and why me for a second and started to cry before I glanced at the People magazine I had been reading on the counter, which was open to a blurb about how the remains of an 11-year-old kid who’d been abducted at gun point 27 years ago had finally been found. And suddenly I realized breast cancer is honestly far from the worst thing that could happen to me.

Something I know I haven’t touched on before now is that my period came back that one time, but hasn’t returned since. The hot flashes came back with a vengeance and I definitely experienced some real sadness, verging on depression, as a result of the way my body has been affected. It’s hard because the symptoms I continue to experience aren’t from cancer, but from chemotherapy and/or radiation – I had no symptoms from cancer. So there are times when I think, maybe it would have been better if I hadn’t found it. Maybe I should have just let nature take its course and allowed the cancer to do what it was going to do. Of course that’s absurd, but sometimes the physical remnants of the treatment make me a little absurd.

I do wish they had prepared me better for what to expect after, but I suppose that would probably drastically reduce the number of people who would be willing to go through treatment, thus drastically reducing survivorship. My last chemo was March 30, so my 6-months out date will be September 30th – but if you’re really counting when that chemo was totally finished, probably more like mid-October. Six months is significant because the general consensus is that all chemo-related symptoms should resolve between six months and a year post chemo.

Symptoms I continue to struggle with include sore hips, knees, and back, stiffness after sitting, swollen, painful hands and trigger finger in the morning, hot flashes and loss of fertility, digestive issues (enough said), and of course the aforementioned tender right breast. I also have soreness and scar tissue buildup at my port incision site and also along where the catheter was so that when I stretch my head back it looks like the catheter is actually still in my neck.

All these things may sound trivial on their own, but when combined, they have presented a difficult hurdle for me. I was very strong and (I thought) healthy prior to my diagnosis and treatment, so to go from a mom who could do everything with her kids to a mom who struggles to go from sitting to standing has been a real blow. And funny enough, HAHA, I left loss of mental acuity and ability to plan and organize out in the paragraph above because I thought that was finally resolving, but AS I AM TYPING THIS my therapist just called because I was supposed to be at her office at 2 and it’s now quarter past – I completely forgot. So yeah, safe to say my brain is still being affected.

This has been an incredibly whiny post and for that I apologize. I guess the crux of what I am getting at is this: yeah, it’s over, but it’s not OVER. I have hair and eyelashes again, my mammogram was clear, I’m six months out of chemo, but I’m still affected every day, both physically and mentally. So I guess – just don’t expect rainbows and unending gratitude from breast cancer survivors. Getting the cancer out, getting through treatment, that’s a battle. But I’m still fighting the war, and I think in some ways I will be for the rest of my life. Just because cancer didn’t kill me (yet) doesn’t mean everything is back to normal. This is a longer road than I anticipated.

But I’m walking it, and I’m grateful to be doing so with so many people who love and support me.

Out, out damn spots

So I emailed my doctor this morning, because I want the damned cancer out.

They KNOW I have two small spots of high-grade – that’s dangerous, fast growing – cancer in my right breast. Based on the tests they have done – mammogram, ultrasound, and biopsy – they THINK there is no other cancer in my breasts and that the cancer has not yet spread to the lymph nodes. And finally, only 1 in 500 women tests positive for the BRCA gene, and since neither of my grandmothers, my mother, nor any of my aunts have had breast cancer, AND my 23andme results came back negative for the three BRCA mutations they test for, I feel fairly certain mine will come back negative as well. With all these things in mind, how much sense does it make to keep waiting? It’s fast growing but not in the lymph nodes yet – how long will it take to get there? What if it only takes a month? So then I have to do chemo because rather than act quickly we chose to bide our time and see what the stupid test results said? The only test result that truly matters already came back and it said HI YOU HAVE BREAST CANCER.

My doctor replied and said he’ll call me today to discuss options. We’re going out of town this weekend and I am hoping he presents me with the “You can have the lumpectomy on Monday after you return” option.

A rolling stone gathers no moss and all that. Will update when I know more.