Tuesday, March 25, 2014

Does it ever end?

I'm coming up on a few milestones in the next couple of months. On April 1st, I celebrate seventeen years of being a mom. OnJune 4th, twenty years of being a wife. And on July 14, four years of being a breast cancer survivor. The further out I get from my diagnosis, the LESS nervous I should be about recurrence, right? Wrong. I have a check up next week (on Number One Son's birthday poor planning on my part) and the closer it gets, the more on edge I am. It's enough to make me think it's time to start seeing the head shrinker again. So if I ever cross your mind, say a little prayer for my family having to put up with my crazy. And that I have a boring, uneventful visit with my doctors. And while you're at it, pray for all those whose cancer has come back. It's a club I don't want to join.

Wednesday, September 25, 2013

Curse you, lady parts

Not sure what's up with me...two blog posts in one day. I gotta rant for a little while though.

All my life, it seems, my lady parts have been giving me grief. I was diagnosed with endometriosis when I was 24, just shy of NumberOneSon's first birthday. As a matter of fact, I had surgery and then had his birthday party the following weekend. What can I say, you have a lot more energy when you're in your 20s.

Just six weeks after my surgery, the pain came back. A month later we moved to Louisiana so I got to try to find another doctor. The first one I saw was a quack. I thought maybe I could just muddle through for awhile. But no, I needed a doctor. The second one was pretty good and we managed for several years.

After I graduated from nursing school and got a job, I got new health insurance and had to find a new doctor. I asked around and Dr. B came highly recommended. I continued to muddle through but eventually the pain just got to be too much and I had surgery again. This time I had real relief. And apparently real fertility too, because I was pregnant with Ms. Thang three months later. In spite of the Pill.

And then 16 days short of two years later, BabyBoy came along. Also in spite of the Pill.

**Boys and girls, do not trust just one form of birth control if you really don't want to have a kid.**

Don't get me wrong...I was excited to have my babies, we were just surprised, that's all. If I had waited till I thought I was ready, well, I'd probably still be waiting.

My lady parts had gone from giving me pain to working a little too good.

All that pregnancy and breastfeeding helped keep the endometriosis at bay for awhile. But when BabyBoy was about three, I started to have some pain here and there. It was livable but in the back of my mind I knew at some point I'd probably have to have another surgery.

In 2010 I got my upper lady parts squished and found out I had breast cancer. I had the surgeries and chemo, took a shot and pill to suppress estrogen since it was an estrogen receptor positive cancer (the most common, least aggressive and most treatable kind). The added bonus was that it cured my endometriosis.

Unfortunately, the miracle shot and pill have given me old lady bones. In an effort to not break a hip, my doctor changed my pill from an aromatase inhibitor to a SERM (selective estrogen receptor modulator). Apparently SERMs are anti-estrogen in breast tissue but pro-estrogen in the uterus. I'm still trying to figure out how that works.

Anyway, the pro-estrogen causes the lining of the uterus to grow and since endometriosis is simply uterine tissue growing outside the uterus, that's growing too. So now I have severe intermittent pain. I went to the GYN NP today and I go back to see the OB-GYN in two weeks.

There are a few treatment options...progesterone to counter the estrogen. Going back on the aromatase inhibitor. Stopping the SERM and just taking the shot. Surgery to clean out the endometriosis. A hysterectomy.

So now I've gotta do MORE research and try to figure out what's best. As if I don't have enough things to keep me busy.

So curse you, lady parts. You're nothing but trouble.

RDG

Retrospection...and change

Fall is a stressful time for me. I think it is for most people too, because as a child it represented going back to school and giving up the freedom of summer. Even as adults, there's just something about the cooler mornings and shorter days that bring about feelings of melancholy, especially when you start thinking about scraping car windows and shoveling snow (Missouri winters) or seemingly endless rain (Louisiana winters).

For me, though, fall represents one of the most difficult times of my life. It was when I was deep in the throes of cancer. Technically I had surgery in late summer, but chemo dominated the fall. So for me, fall is cancer weather. Driving three and a half hours to St. Louis, waiting. Getting my blood drawn, waiting. Seeing the doctor, waiting. Checking in for chemo, waiting. Going back to the chemo area, waiting. Starting the IV and hanging the IV fluids, waiting. Hanging the first bag of poison, then the second, then waiting to make sure I didn't have a weird reaction. And then finally, escape. Two of my chemo days I drove up the day before and stayed in a hotel and then drove back after chemo. One day we did it all in one day (the longest day EVER!!) and one day we drove up on chemo day and then stayed the night in a hotel and came back the next day. That trip was the most fun because it involved a lot of eating and shopping.

I had breakfast with my friend BeBe the other day and of course, as girls do, we talked about all sorts of things. She reminded me of some things I'd forgotten about that happened while I was sick and while I was recovering. I mentioned that I'd come across a notebook where I'd written down possible blog topics. Sadly, most of the topics are things that I don't remember the stories that go with them.

So if I ever ranted to you about something that happened during that time but you didn't see it mentioned in the blog, kindly drop me a note and refresh my memory. I'd like to fill in the blanks of the story. I'm tossing around the possibility of making an eBook out of it. Plus, I'd just like to know what happened! After all, it happened to me!

I spent some time the other day rereading my blog. I didn't go all the way back to the beginning (at some point I will) but rereading words I'd written a year ago, two years ago, three years ago, all I can say is, wow. Some of it was funny, a little of it was deep, most of it was crap.

And some of it was hurtful.

If my friend was going through cancer treatment and I read her blog and saw that she'd written something that I thought was about me and it was less than flattering, my feelings would definitely be hurt. I hope I'd wait till she was feeling better to say something. I'd hope that I'd understand that her negative feelings toward me were her point of view at that time, in the light of what she was going through. That maybe she was lashing out in anger, that a wealth of things seemed wrong but she only focused on a few. The easy ones. The low hanging fruit so to speak.

So...if you ever read my blog and said WTH? Did she really just say that? Was she talking about me? Just know that I was coming from a place of INSANITY. Cancer will do that to you. The unknown of whether you will live or die, whether you'll be sick or cured, whether the cancer will be eradicated or it will come back will absolutely make you crazy. And the crazy part about it is, you may not even KNOW you're crazy!!

Factor in a dose of cyclothymic (mild bipolar) disorder with the false anonymity of the Internet and it's a recipe for disaster. It's seriously a wonder that my friends and family are even speaking to me.

But they are. They showed me grace by forgiving me.

As I was rereading, there were parts that I cringed at. Ugh, I really said that? Parts that I'd like to take down, parts that were poorly written or used more salty language than I'd like to admit that I've used (and sometimes, in spite of my best efforts, still use). Parts that were hurtful, complaining because things weren't going my way. Whining. But it's what I went through. And if someone who's going through cancer reads it, they need to see the whole thing. Not just the nice parts. The ugly parts. The ugliness deep down in my soul. Inspirational stuff is nice, but what kind of person do you feel like if every cancer blog you read is all nice and all you have are black thoughts? I was angry. About losing my job, about getting cancer, about having to have multiple surgeries and go through chemo and take these awful drugs that put me into menopause. I was angry about hot flashes and not feeling attractive and not being able to go anywhere because my white count was too low or I just didn't feel like it. I was angry that I'd gained weight, my clothes didn't fit, my hair was coming back in and it looked awful.

In retrospect, I could have handled a host of things differently over the past three years. But, I didn't. And what's in my blog is what happened, at least from my point of view. I wish it wasn't my story. I wish my story was all happiness and inspiration.

If you read Little Women...I wish I could have been Beth. But most of the time I was Jo or Amy.

Alright, enough retrospection. It's time for a little change.

I'm going to go back through my blog and remove the posts that have nothing to do with cancer. I'll be moving these to a new blog that I'm calling The Secret Life of a PTA Mom (I'm sure there will be some disappointed pervy web surfers that discover it's not a porn site).

I'll still blog occasionally here about cancer, a subject that I hate and wish would go away. But the reality is that at this point cancer is no longer consuming my life and that's a good thing.

RDG

Friday, September 6, 2013

Absence makes the heart grow fonder...

I didn't realize it had been so long since I last posted to my blog. Over a year. Wow. Well, I guess I've been pretty busy and things have been getting back to normal so I really haven't had much to say. Until now.

I went to the doctor this past Tuesday and got some unexpected news. I'm three years out from my mastectomy and I still have a little over two years to go taking hormone/endocrine therapy. Since I had an estrogen-receptor positive tumor, the recommendation is to take something to block estrogen for five years post chemotherapy. When I went to the oncologist to set up the chemo, she suggested I enroll in a clinical trial comparing an aromatase inhibitor (exemestane) to tamoxifen, the traditional treatment. I was randomized to the test group. Because I've not entered menopause yet, I've also been taking a shot that completely blocks my ovaries from producing estrogen. Exemestane blocks the estrogen produced by other parts of your body (who knew that estrogen came from anywhere else?). So I guess you could say I'm in a chemically induced menopause.

Because I'm menopausal, I am more likely to have decreased bone density. They did a bone density scan about 2.5 years ago and it didn't look bad for my age. However, I had another one Tuesday and I now have osteopenia, which is mild bone loss. In 2.5 years I've lost 8% of my bone density. That doesn't sound like much but apparently it's pretty bad. My oncology NP wanted me to go over to the chemo area and get an IV of Reclast (same type of drugs that Sally Field and Blythe Danner advertise on TV). I've heard some bad things about bisphosphonates so I was leery and since my bone density didn't decrease overnight, I decided to come home and do a little research.

Come to find out, my menopause formula vitamins only have 25% of the RDA for calcium. You'd think a vitamin made for women who are at risk for bone loss would have enough calcium in it!! As I look back over the course of the last couple of years, I realized that after I cut soda out of my diet and started eating healthier, I don't have nearly as much heartburn so I rarely take Tums anymore. I used to take 2-4 of them a day, in addition to taking Pepcid.

So trying to be healthy has made me...less healthy.

Good grief.

Oh, well, at least we caught it. After doing a little more research, I found that tamoxifen can actually improve bone density. It's a drug that's in the same class as Evista, which treat osteoporosis!! So if I'd been randomized to the control group of the study, or opted not to do the study, I likely wouldn't have osteopenia right now.

So trying to help others has actually...hurt me.

Seriously?

It is what it is. I can't change what's happened to me over the past three years but I can make changes for the future. My oncology NP called me this morning and she's going to call in a prescription for tamoxifen. I'm still going to take the sweet monthly menopause shot. I'm also taking calcium supplements and *gasp* walking and lifting weights to hopefully improve my bone density. We'll do another bone scan in a year to see if it's better, the same or worse. Better would be best, but even the same is acceptable since bone density does not change quickly.

After a few days to mull this over, I'm over my initial anger and fear. I'm super stoked that I've gotten a clean bill of health once again as far as the cancer goes. I'm glad that my complication is something that can be treated with diet and exercise and a medication change rather than adding another medication. I'm glad that in all my clumsiness I haven't broken any bones.

It's all good.

Thursday, April 19, 2012

In the blink of an eye...

I wish I was like my friend Bungalow Bill and had something or multiple somethings to say every day. I have lots of opinions, it's true, but I also have the attention span of an elderly gnat so if I'm not where I can blog RIGHTNOW those thoughts are just going to drift on back to the dark corners of my brain.

Which is probably where most of them belong...

Anyhoo, I'm here, I have time and I have something on my mind. As soon as I grab a cup of coffee.

Alrighty, that's better. I was driving back from dropping the kids off at school and thinking about the significance of this date. For me it's fresh and still painful and probably always will be. Four years ago today my brother (in-law) passed away from recurrence of a cancer that's usually a childhood cancer. He was diagnosed when he was 28 or 29 and we lost him just after his 37th birthday. For weeks we weren't sure what was wrong with him and for months we were so afraid we were going to lose him. And then he had surgery and radiation and got back on his feet. The cancer couldn't be completely eradicated due to its location but the doctors watched him closely, doing tests frequently and watching those tumors.

We settled back into "normal" life, whatever that is. DH and I moved back from Louisiana. We had two more kids, my brother (in-law) and sister (in-law) had another kid. Our older kids were approaching their teen years. We went to soccer games and baseball games, had BBQs and birthday parties. And then the cancer came back.

For months he fought it. He had two more surgeries and multiple cyber knife treatments and chemo. And we hit a holding pattern. Things didn't get better but they didn't get worse either. But finally, it hit the point where there was nothing more that could be done. We fought against it. My sister (in-law) worked herself to death trying to keep the family going and take care of her beloved.

In spite of the fact we were only an hour away, DH and I weren't involved nearly enough. I was working two jobs and we were always just so busy and so tired. I don't know if I can ever forgive myself for not being there more. I just hope my brother (in-law), wherever he is, knew that we loved him dearly. Because we did.

He had the most infectious laugh. He was so good at basketball. Everyone who knew him thought he was a great guy. Because he was a great guy. He would get down on the floor and wrestle with the kids. I hate it that my little ones didn't get to know him like Number One Son did. I smile whenever I think of him and when I see kids playing sports or someone drive by in a Jeep, he pops in my head. After we moved back, he and I talked on the phone almost weekly. We used to laugh about the fact that we were married to a brother and sister and talked to each other more than they did.

It breaks my heart that he's not around to guide his kids, to coach and cheer them on at soccer and basketball games. I know he would be proud of what they are becoming.

For many April 19 is burned in memory from Waco in 1993 and Oklahoma City in 1995. American History buffs remember April 19, 1775 as the beginning of the American Revolution, with the "shot heard round the world."

But for our family, it's the day we lost our brother, son, friend, father and husband. We will never forget.

Wednesday, January 25, 2012

More pinkwashing

Pinkwasher: (pink’-wah-sher) noun. A company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease.

Now, I don't know if EZ Disposal is technically a pinkwasher by the above definition, but I do know they are making some money off breast cancer. I've driven through Lebanon, MO, four times in the past two and a half weeks and I noticed pink dumpsters. Not the big ones like you see at a business but the rolling ones like I have NOS haul to the curb weekly to see if the city will privilege me by picking up my garbage. Yep, pretty pink rolly trash cans. This morning as I drove through I noticed one with a big sign on it that said "Kick breast cancer to the curb." I like that...catchy! Because the speed limit was low and traffic was slow, I had time to get the number off the sign and call them to ask about the pretty in pink dumpsters.

I was appalled by what the friendly lady who answered told me.

You pay an extra $5 a month to get your pink cart. The first month, they donate $5 to the American Cancer Society. Every month, they donate $1 to Curry Cancer Center. Yep, that's right. You pay an extra $60 a year and they donate $17 to defeat cancer.

OMG are you freaking kidding me???????????

Please, please, please, if you want to do something to help fight cancer, quit buying this crap! Write out a check to Breast Cancer Foundation of the Ozarks (if you're in the SWMO area) or Breast Cancer Action. Or just give the money to someone who has cancer. If you don't know anyone, ask around. I guarantee everyone you know knows someone with cancer.

If we keep buying into pinkwashing and other cause marketing, businesses will keep doing it.

Saturday, December 31, 2011

Year in review and the future

Since I did a review of my year last year, and it's the last day of 2011, I thought I'd look back and muse over the events of the past 365 days. If you had told me last year on my birthday I would be schmoozing with politicians and would-be politicians (and even considering being one myself), I would have fallen out of my chair laughing. But here I am, helping organize a property rights group, going to city and county meetings, going to the school board meetings even when I don't have to, and helping organize a chili supper fundraiser and the county Republican caucus.

Wow. Didn't see that one coming. It makes sense though. I have a lot of time on my hands and a lot of opinions about how things should be going. And if I thought they were headed in the right direction, I would be spending more time reading People and Facebooking and less time trying to save the world, starting with Ozark and Christian County.

I've gotten more active in PTA and I'm using what I've learned there to help with the other organizations with which I've become involved. And sadly, whether it's a non-profit, a political party, a job, church, whatever, it's all politics. It's all about how you say it and how you make people feel. The message, no matter how good or how right, can get lost if the messenger can't convey it without offense and can't convince others to come over to his or her side.

I've started going to church again and I've found a true church "home." I never really understood what people meant by that until I started going to Southside Church of Christ. I'd gone to churches out of expectation, because friends went there, because I wanted to be in an awesome choir, out of convenience, but I've never been anywhere where I thought "this is where I'm meant to be." What an incredible feeling. I'm reading and studying my Bible more. I always prayed a lot but now I think maybe I'm praying even more. And I have so much to be thankful for.

I've taken up cooking and baking for recreation and we don't really eat out very much anymore. I've found that I kind of have a knack for recipe modification and I've even made up some of my own recipes. It's certainly gratifying to have people compliment your cooking and baking. It's also galling to go out to eat and spend a ton of money for what I can make at home for a fraction of the cost. Now I understand why my parents were never much on eating out.

I've been reading about and become disillusioned with the current state of cancer research and treatment. I'm no conspiracy theorist but something tells me the cause may be more widespread and the cure may be simpler than you'd think. Sadly, the research dollars go toward expensive drugs and medical procedures rather than looking at lifestyle changes which do nothing to make money for pharmaceutical and healthcare companies.

I can't believe how fast the years are going by the older I get. I remember my parents telling me time flies...now I believe it. My kids are getting so big, in just a few years Number One Son will be out of the house and Ms. Thang and BabyBoy will be in upper elementary, then junior high and high school and they'll be gone too.

Finally, I think I've nailed down some future plans. I've decided to go back to school and become a nurse practitioner and I hope someday to open a free/sliding scale clinic to serve rural southwest Missouri. It's a huge undertaking...but I feel like it's where I've been heading all along. It's what all my experiences, as a nurse and a cancer patient, having been unemployed and uninsured, have been taking me. And eventually DH and I plan to move out to the country and learn how to live "off the grid" as much as possible.

Every year there is so much change and a lot of it is stuff I'm not expecting. It makes me wonder what to expect in 2012 and what I'll be talking about a year from now. In any case, it's time to get moving and see what the day brings.

Happy New Year!!