A Little Hike Down Memory Lane

In honor of Breast Cancer Awareness Month (and you know how I feel about awareness without action), I thought I'd pull this old post from another (now neglected) blog out of the pile. Funny how I reference the Inca Trail thing. It really was my benchmark. For the longest time. I thought nothing I would ever do would be harder. Oh to be young....

This post takes me back. Way. Back. But I still remember the overwhelming emotions I felt on this trail when this moment occurred. I was thinking about this when my pal A. had to crawl out of bed to meet her Race for the Cure team after a late, late night out with me (sorry A., but I still blame you), and when my boss told me about her own experience with her daughter at the Race and how inspired they both felt. I knew what she meant. It truly can be a pretty overwhelming experience to be surrounded by women (and men!) who have overcome some pretty tough stuff and found themselves on the other side. Not the same, but ok.

Kind of like...

Ok, without further ado, here's some old shit. And more pics! OMG she's an exhibitionist now.

Cottonwood to Indian Gardens, Grand Canyon

I am a cancer survivor. I know that at least one out of ten Americans can (fortunately or unfortunately depending on how you look at it) can say the same thing. I don’t think I am anything special. I don’t necessarily feel good when people say that I “beat” or “conquered” the disease because to me that implies that all of my friends who didn’t somehow fell short, or maybe didn’t fight as hard as they could. I know that’s not the case.

Having cancer has shaped who I am. It is a part of my identity. But it is not My Identity. There are people that have known me for years that had (have?) no idea that I was once really sick. It’s not that I avoided the issue. I just never thought to mention it.

There are times when I am reminded, sometimes gently, sometimes like a punch to the gut, that being in remission from cancer does make you different. One of those times was climbing the Inca Trail to Macchu Picchu where oxygen is already scarce because of the high altitude. Scar tissue over my lungs and diminished lung capacity, two leftovers from cancer days, combined with the physical exertion to make me feel like I was going to die. Seriously die. Thank God for my patient husband who climbed ¼ mile back down the trail to retrieve the blubbering, shuffling mess that I let myself become.

That entire day I was feeling sorry for myself, constantly reminding myself that I had serious disadvantages over the rest of the people on the trail. That may or may not have been true. I used my cancer as a crutch and clearly it wasn’t a very good one because it didn’t get me very far. M’s perfect walking stick ™ would have worked much better.

That was four years ago. I am much stronger, physically and mentally now. I know that there is probably nothing I will do that will be more physically challenging than the Inca Trail. It is my benchmark. As in, “Is this as hard as the Inca Trail? No? Then keep moving!” That’s my toughy inner voice, which shares space with my not-so-tough inner voice and the virtual jukebox in my head when I hike.

My not-so-tough voice was getting ready to note her objections to the switchbacks that steadily lead the way up to Indian Gardens, our next camp, when I had to step aside and make way for a mule train that was coming down the trail. I glanced up from my boot-gazing stance to say hello and found myself looking at at least twenty women wearing Race for the Cure t-shirts astride the mules. Some had short spiky hair. Are you a survivor?? I couldn’t help wondering. Are you a survivor? My heart started racing. Because I am a survivor, too! Hey! I’m a survivor!! I was so excited I think I was trembling. I kept smiling and trying to speak but I couldn’t. The words were caught in my throat. I am a survivor, too!!!

The mule train passed, probably wondering what the heck was wrong with this teary mute on the side of the trail, and I continued on my way. As usual, M. was distances ahead of me. I was alone with my thoughts, which were no longer mundane. I felt alive, elated, proud of myself, proud of those women. I felt grateful. I felt thankful. My steps had new purpose. I am hiking the Grand Canyon. I can hike the Grand Canyon. I am a survivor! Darn it if that darn Destiny’s Child song wasn’t stuck on continuous loop on Gabby’s virtual jukebox.

I made it to camp in record time. I don’t think I stopped once. M was shocked and amazed. He had barely put down his pack and filled his water bottle when I turned the corner. I didn’t need him to come to my rescue this time. I did it on my own. My cancer wasn’t my crutch; it was my motivation and my reason. I don’t think I am anything special for being a cancer survivor, but boy do I feel lucky.

To My Cancer Peeps

If you happened upon this blog because you are a childhood/young adult cancer survivor and

• you are between 17 and 35 years old and
• are done with active treatment and
• are currently living in the U.S.

Might I suggest checking out the The SAMFund's website? Part 1 of their Grant and Scholarship application is available and will be until Monday, July 12th at 5 pm EST.

The grants and scholarships are for post-treatment, "real life" needs such as rent and other living expenses, tuition and loans, car and health insurance premiums, residual medical bills and prescription co-pays. And yes, there are even some funds available to put towards fertility options/procedures.

I know this because I was one of their grant recipients in 2007. Here's just a little peak at the essay part of my submission.

If you are NOT a childhood cancer survivor, I bet you know someone who is. Pass this along.

And....if you are so inclined, perhaps consider making a donation to this amazing organization? Sometimes people are so focused on curing the disease, there's little thought left to actually surviving it. The SAMFund was started by young adult cancer survivors. They get it. And they can help you get back on your feet and focus on living, not just surviving. Seriously cancer peeps, go check it out.

On Awareness

I've been thinking a lot about "awareness" lately.

Maybe its because there is a sea of pink all around me. Pink ribbons. Pink sneakers on football players. Pink baseballs bats (phallic, no?). It seems that everything and anything that can be mutated into something pink, is. All in honor of what? Breast cancer "awareness"? And this is where the sour taste comes up in my mouth and makes me make that face. You know, the one with the eye rolling and the "oh really" and the "give me a fucking break."

Not because I discount the hundreds of thousands of women (and men!) who have had to contend with this particular brand of cancer. Or the pain they have suffered. Or the disruption of their lives that continues well into remission that can be blamed squarely on the disease.

As a cancer survivor and someone rendered infertile because of it, I get it. I so get it. Cancer sucks. Of this I am aware.

But what's WRONG with that first sentence of the previous paragraph? WHY are there hundreds of thousands of people who have to deal with this? WHY is it enough that we are aware of the situation? Because if breast cancer is predicted to take down, what is the stat now, one out of every eight of our sisters, is there anyone out there un-aware of the dangers? Yes, I know, don't smoke, don't drink too much, be good little girls, but guess what, breast cancer strikes goody two shoeses, too. Is anyone, anyone questioning other root cause(s) here? Or is it enough to blow pink balloons out of our asses?

I used to think I was the only one that made that RUFKM face with the pink. But then I ran across this amazing article by Barbara Ehrenreich in an old Harper's magazine. And yes I know its long and I'm usually not one for multiple pages, but I remember reading this for the first time years ago and shouting, YES! Fucking right on! Shaking my fists in balls of rage and wanting to go set something on fire.

Warning: she doesn't mince words. And if the following statement pisses you off, you should probably skip the link:

In the harshest judgment, the breast-cancer cult serves as an accomplice in global poisoning-normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.

But seriously, I am getting worked the fuck up reading it again right now. No, listen, I changed my mind, you NEED to go read this. And then tell me if you find any similarities to other situations you are dealing with right now at this moment in your lives.

To the extent that current methods of detection and treatment fail or fall short, America's breast-cancer cult can be judged as an outbreak of mass delusion, celebrating survivorhood by downplaying mortality and promoting obedience to medical protocols known to have limited efficacy. And although we may imagine ourselves to be well past the era of patriarchal medicine, obedience is the message behind the infantilizing theme in breast-cancer culture, as represented by the teddy bears, the crayons, and the prevailing pinkness. You are encouraged to regress to a little-girl state, to suspend critical judgment, and to accept whatever measures the doctors, as parent surrogates, choose to impose.

And yes I know I should be thankful to be alive. And yes, I have been told to believe that chemotherapy and radiation were my saviors. And sure, I saw the tumor shrink on the fancy X-ray machine.

But here's the thing, kids: I never felt bad before my cancer was diagnosed. I never suffered until my treatments began. And when I look down at the 10-inch scar running in a crooked line down my belly (thank you, med student who was allowed into surgery) more than just a little part of me wonders if anyone really knew what the fuck they were doing. And that wonder is intensified every time an ultrasound picks up those little surgical clips where my ovaries should be and the current med student goes, oh hmmm, that's interesting...

Ok. Now I realize this post has drifted to a place that probably makes some folks uncomfortable. I'm sorry. That really wasn't my point. Well, actually, it is. What I had started to write about was the question that I always have in my mind, "where is the line between "Awareness" and simply "being an asshole?"

This is something I've been thinking about and trying to vocalize ever since I googled my own name the other day and found (yet another) blog post by Cheryl Miller quoting me. (funny how a few phone conversations with a couple of us has given here quite a bit of material, no? Infertility! It's a gift that keeps giving!) Here's a passage:

This conflict between privacy and exposure was something that fascinated me while interviewing the bloggers. When I first went in, I was a little skeptical about all the talk of raising awareness from these (mostly) anonymous bloggers. Many hadn't even told their families or friends. If you can’t even talk openly with the people closest to you, I thought, how are you going to educate the public at large?

After talking with bloggers, I changed my mind. For one thing, my interviews made clear how difficult it is to be "out" 24/7 about your infertility. Who — and what — to tell is a question the infertile have to struggle with on a daily basis. Do you use every awkward exchange as a “teachable moment,” an opportunity to educate others about the 6.1 million people struggling with infertility? And who is appropriate to "educate": relatives you see once a year, co-workers, neighbors, total strangers who just happened to ask an innocent, but painful, question? During an interview, [m.] told me about how she was teased by co-workers who were unaware of her infertility. “Do you go into the whole story right there in the break room?” she asked me. “Or do you just let it slide?”

Like most of the time when you read about yourself in print, its like, yes, sort of, but not really. Here's what really went down: break room yes. Three younger co-workers, yes. Teasing, not really. More like gentle ribbing of me and my no-nonsense at work persona and how I would be with kids. This was pre-pregnancy, pre any knowledge whatsoever that we were trying.

And you tell me, would you feel a need to stop the copy machine, turn around, dramatic pause, and proceed to make every single one of those young women, some of whom you supervise, feel like utter and absolute shit because the fact of the matter is you want more than anything the situation they think would be hilarious to see you in? Do you ruin their lunches? Do you become that person that can't take a joke and what's more, is the break room really the place you want to talk about missing ovaries and the anguish they cause you?

At that point, I chose no. But that doesn't me I always do.

Back to cancer. Back in my cancer days, me and my cancer buddies would go to this free summer camp up in the mountains. It was a blast. One day out of the week was "media day." It was the one day that local press, papers, TV stations were allowed to come bug us and get their feel good human interest, you know, "Awareness" stories.

And dudes, we ran with it. We'd place bets to see which one of us could make the pretty anchor lady cry first. We'd see how graphic we'd need to be before the camera man squirmed and looked away. And no, we were not above removing prosthetics, tricks with stumps, making broviac-hickman ports squirt, showing scars, some fresh, and pulling out hair and taking off wigs right there on camera.

Now you tell me. Was that awareness, or were we just being assholes?

These days, I see that I am not the only kukd chick that struggles with this sometimes fine line. Monica over at Knocked Up Knocked Down talks about it a little in her most recent post:

a buddy at work whose wife is 12 weeks pregnant e-mailed to see if Kev and I had talked about baby names yet. I could've just said "no" like a normal, sober, clear-minded human being. But I just had to gussy up my reply with more dramatic than that, something like this:

"No, we haven't started thinking about names, since this is our fourth pregnancy. There's a 50% chance this won't work out anyway since it's a boy, so we're just keeping our fingers crossed and hoping a living baby will come out of it. Then we'll name him."

Immediately after hitting "send," I felt bad. I wished I could have taken it back. It was like this old-me coming through all of a sudden, the gloom-n-doom me who was high on pain for a year-and-a-half, dredging it up and wearing it boldly, daring anyone to challenge it.

Why couldn't I give this guy just a simple, friendly response without bringing up that whole bitter truth? Why not just let him have his innocent and happy little e-mail exchange with a fellow expecting parent? What was I hoping for - some kind of sympathetic response? I felt like one of those people I've always been afraid to become: putting it out there all the time - I'M A DEAD-BABY MOMMA AND DON'T YOU FORGET IT! - to the point where the world grows tired of the subject, and, even worse, to the point where I'm really just clinging to this pain-crutch as an excuse to not engage in normal discourse with another human.

And like most times when I read Monica, I sit there an think, yes. Damn. I do this too. Not always. At least I try. But then I remembered an exchange on FB that just happened. Recently I took a leap and invited several of my work colleages on to my FB page. And I got this response from one of my friend requests:

i'll confirm you, but please know that i am an almost 45 year old gay jewish man. my posts are not always g-rated. i wanted you to know that from the start. i always give folks that info so that they know.

Not one to be outdone, what do I do? Do I say, hey, no problem! Thanks for the heads up. I'm sorry that some of our colleagues aren't as open minded as they claim? Oh ho no! Here's me:

don't sweat it. I am a 35 yr old married atheist with two dead babies. I don't think I would qualify for a G-rating either.

So, hmm. Awareness? Asshole? I honestly still haven't decided.

and here's more full disclosure: after this long and exhausting rant on awareness (what you get when I don't post for a while), some of you may recall that that really cool thing that M and I did several years back was supposedly all for Childhood Cancer Awareness. Ironic? Hypocritical? No dudes, simply a fall back. The original intent was to get a boatload of actual cash for cancer research and one local charity, but that fell through when our primary sponsor became a publicly traded company right before we set off (thus complicating and eventually nullifying the really cool plan that we had for fundraising).

So maybe that's another piece of my anti-awareness-ness. Maybe I just see it as a fallback plan, and not a plan in itself.

Feeling Just a Little "Off"

Yesterday, I was walking to a meeting downtown and I walked right past the building I needed to be in. Overshot it by a few blocks before I realized that I had. Thus making me late for my first meeting on the day. One of those everyone turns-around-and-stares-at-you kind of late.

I should probably note it was the fucking state capitol building that I missed.

Once at said meeting, I ran into a colleague who asked me really quizzically, when are you due? I kept thinking she said what do you "do" and I was so surprised because I thought for sure that information was old news. No, she said when are you due. Because women never forget, do they, when you share good news. So I explained and she sighed. And we hugged. And that just about threw the rest of my day off. Never mind I had to head straight to another meeting and give a pretty detailed presentation to my Board of Directors. That went ok. At least that what my co-worker (and friend) told me. I was on auto-pilot. I really couldn't tell you. I hope someone took notes on what I'm supposed to do.

It's the weekend of my cancer remission anniversary, and these last few years, this seems to evoke more of a melancholy than a joy. 21 years cancer-free. Tomorrow. Woo. Now if only they wouldn't have fucked with my ovaries. I bet they would have been just fine where they were.

I had this sick, sick thought the other night, post-sex, post hearing chicklet's amazing news...I was thinking, oh my gosh, maybe, just maybe. You know where I'm going with this....and then I remembered that I could actually see the surgical clips where my ovaries should be on my last HSG.

Surgical clips don't ovulate, no matter how much estrogen you feed them.

To combat this funk, I just signed up to be part of study I learned (thank you, FertileHope) my very own clinic is doing on the effects of cancer treatments on female fertility (short answer: it seriously fucks with it). I told them they could mine my medical records for any and all info they thought could be helpful. Just have at it. They said word. Sent consent forms, asked me to schedule an appt to talk.

This weekend also marks two years since our first visit to that fertility clinic. I have to laugh. We tried to play it off so cool. Oh, we're just checking out our options. If it looks promising, we'll see what can be done, if not.... If not what? We're funny. We crack me up.

This weekend also marks the five year anniversary of this really cool thing we did once upon a time. Sure, I'll link out. Anonymity be damned.

It's also M's sister and M's grandmother's birthday weekend.

M and I have reservations to go to this fabulous restaurant tomorrow night to celebrate (with the help of an Xmas gift cert from M's sis). But I would like to get into a better frame of mind before then. It's far later on a Friday morning than I would like to admit right now. Not only am I not at work, I am not even bathed. Fell back asleep after M left for work after an almost 100% sleepless night and only woke when my acupuncturist called to see if I was ok. Completely forgot I had an appointment this morning. Shit.

So, I'm take the day off work, hopping in the shower, calling my acupuncturist back, opening some windows and trying to take some deep breaths. Today, I am alive and for that, I should be thankful. I'll get there. I will.

Ahh, Good Point

A very, very smart pal of mine just emailed me and wondered if I had ever had a bone density scan.

The answer is no but it is something that I had been thinking about as probably a good thing to do for a while now. Since my menstrual cycle and ovary function disappeared with my chemo and radiation at age 13 never to return without the coaxing of birth control pills (the cycle, not the function), and since there were huge stretches of time that I went without those pills (you know, just to see what would happen), I have been more or less pre-menopausal for well over a decade. Scratch that. Two? Christ I'm old.

So, that can't be good for bones. And my very smart pal was wondering if weak bone density contributed to my fracture. Hmm. A very good question. One that I'll ask my new orthopedic specialist tomorrow.

As soon as I get home from my super fun night tonight. I promise I will only dance on my good leg.

Me and My Areolas

[NOTE: This post could turn out to be a bit more graphic than most here. If that's not your thing, might I recommend closing your browser and stopping by later this week?]

I know that some women love being pregnant. I know that others are absolutely horrified by what becomes of their bodies as other bodies grow inside of them. Can I just say that I am absolutely fascinated by all of it?

Not that I look at my dark, DARK areolas that seem to be infesting my entire chest and go, "oh man, that's hot." But I think there is something about witnessing the changes that occurred to my body through cancer and chemo and radiation and then (thankfully) watching my body recuperate and, for the most part, recover, that gives me a little bit of appreciative distance to these current events. Dark areolas are not nearly as traumatic as unintentionally pulling out clumps of hair.

More observations:

For the first time in my life, my belly is a source of pride and wonder and not the "weakest link" of my physique. Gone are the days of clever wardrobe disguise and dressing so that eyes barely notice my midriff. Gone! Now, I will happily lift my shirt to any passerby. No, really.

Gone are the days when, "hey, you look like you've put on some weight," is worthy of a punch. I am still a little (just a little) concerned about the lack of my gut (shouldn't it be bigger by now?) so these words now get a heartfelt thank you.

I have no fear of stretch marks. I already have a ton from losing weight too quickly in the days of C. The addition of any more would be seen as things finally coming around full circle.

I should probably tone down my, "hey, have you seen my boobs lately? They're huge!" remarks. It seems that this causes some folks to blush and perhaps not everyone is as enamored with my new body shape as I am. (but they should be). I've noticed that the growth of my midriff and boobs finally put the rest of me into proportion. I rarely notice the flab on my upper arms that no amount of push ups took off or the fact that my butt is so, so flat. I have never been too obsessed with body image, but I can honestly say, for the first time ever, I love my body.


[week 21]

Milestones Galore

Two days ago marked 20 years cancer free for me, and I wrote about it a little bit here.

But what isn't apparent in that pretty upbeat post was the deep, deep sadness that consumed me for the entire day. It started creeping up on me as I was writing the post, then just kind of got worse and worse until hubby found me in my office a weepy mess. What the f%^& is wrong with me?? I asked that question, he didn't. I didn't think I had an answer. I just assumed it was a typical malaise that we all encounter every now and again. I was surprised by the words that came out.

20 years later and what do I have to show for it? What have I done with the life that was given to me? How have I helped anyone else besides myself? Who have I lived for beyond me? My life could have ended 20 years ago but it didn't. How have I shown my gratitude?

That was part of it. The other part of was based much more soundly in self-pity. 20 years later and I still have a drawer full of meds I can't afford. What's changed?? 20 years later and I am trying to undo what's been done to pieces of me that were never diseased in the first place.

But hang on a second. That's awfully presumptuous of me. What makes me think that hubby and I would have zero problems conceiving if cancer weren't in the picture? What makes me so sure that we wouldn't be in the same boat as so many of our real and blogging friends - testing, trying, testing again, trying to figure out why what should be so easy sometimes isn't? Cancer is an easy, easy (and deserving) scapegoat for us. But it has saved us from the months and months of diagnostic hells that so many of you go through - Do not pass Go, go directly to Egg Donor Program. We didn't have the unknowns, the unexplained, the maybe this, maybe that diagnoses that I know would have driven me crazy. So, I'm thinking for that I should be thankful.

Yesterday marked the one year anniversary of our first consultation with the RE. One year. That's a long time, but then again, it isn't. One year later and what do we have to show for it? Well, we now have our families and most of our friends fully invested in (and thankfully supportive of) our desire to have a family. It's no longer a secret, something whispered wistfully between us. I have this blog and this one which have turned into vehicles for empowerment, advocacy, and most importantly, have put me in touch with some kick *ss amazing, phenomenal women.

I have two little embryos that I hope are growing inside me as I type. Tune in Thursday for the first Beta.

And for that, I am thankful.

Creme de la Creme

Wow! Wow! Wow! Welcome to you lovely ladies who have wandered over from the Creme de la Creme and thank you for your awesome comments. I am going to set aside a good chunk of tomorrow evening to read through more of the great posts that Melissa has compiled here. Have I mentioned that I love Stirrup Queens and Sperm Palace Jesters? D*mn. What a great site.

If you liked hearing about Fertile Hope, please let me share some other links with you:

The Surviving and Moving Forward (SAMFund) offers grants and scholarships to young adult survivors. I have the SAMFund to thank for $2500 that will go towards our donor egg IVF (which, by the way, is just around the corner). The application process is a little long and detailed (be prepared to dig up your old tax returns) but worth it.

The International Council on Infertility Information Dissemination, Inc (INCID) offers scholarships to those considering IVF but in financial need. I haven't applied for this so I am not sure how extensive this application is, but hey, might as well try, right?

In just a day, I'll be heading to my clinic for an ultrasound and some blood work. If all goes well, retrieval and transfer are just a week away. When I reminded hubby that his next trip to the spankatorium was just days away, he started to panic just a little. Oh how different things are now that he'll be the one that has to do the shooting (as it were).

Things are starting to feel a little real.

Oh If Only.....

Good lordessa, if only it were this easy.

I was totally fine with this post full of helpful tips on how to get pregnant (#1 stop birth control) until the last "helpful tip" which reads like this:

5.) Pray, Pray, Pray. Don’t listen to doctors when they tell you that you’re not able to conceive. God is the only person who can determine that. God will give you a baby when he thinks you’re ready for one. He is there to give you all the support you need. Have faith in him and when your time comes you will be blessed with a beautiful baby.

I know that we are all of different faiths and inclinations and I am truly not trying to offend....

But reading that brought my blood to a boil. Because only good and faithful people have babies, right? The world is filled with good and faithful babies who turn into good and faithful leaders and that's why the world is so great, right? And only bad people die from cancer or other diseases or, gasp, can't naturally conceive. It's all about deserving.

Pregnant = blessed. Infertile = cursed and unworthy of a christian god's love, unless of course its in a pitying, charitable way.

Sigh.

We get up bright and early tomorrow a.m. to find out whether or not we are deserving of continuing this cycle. And um, I am probably going to listen to what the doctor tells me.

Wish Me Luck

I just completed my application for the Surviving and Moving Forward (SAMFund) Grant. Wish me luck!

Of course, there are essays involved. Here is one of mine:

Tell us about yourself and your experience with cancer. What is unique about your particular experience? If you are a childhood cancer survivor, what do you remember about your experience and how has it affected your life?

I am a long-term childhood cancer survivor and I remember everything.

I found a lump under my left armpit as I was just turning twelve. After a traumatic attempt at aspiration and an eventually surgical biopsy, my mother received the call just as I was leaving for the beach for a long Memorial Day weekend. She was told by phone that “your daughter has cancer.” And that’s how it all began.

As soon as I returned from the beach, the tests began and before I knew it I was in the hospital for a full abdominal biopsy and spleen removal that left me with the ugliest scar a med student ever sewed. (It’s ok. The surgeon admitted he didn’t do it.) It was the end of my seventh grade school year. I wrote a letter to tell my friends at school and days later, there was a huge card that everyone signed in my hospital room. A lot of my friends came to visit; a lot didn’t. I had planned to skip eighth grade and go straight to high school, but this changed all of that. There was no point in attempting to begin a new experience when there were things that needed to be finished first.

Hodgkin’s. Third Stage. We had a choice of two treatments: a heavy dose of chemo (MOPP) or a combination of chemo (ABVD) and radiation. We chose the latter, because we were told should the cancer ever reappear, we could attempt the stronger chemo. There was no “fall back” if we tried MOPP and it didn’t work.

I spent most of the summer getting chemotherapy and I was so proud that my hair didn’t fall out immediately. When I look at pictures now, I look ridiculous. But at the time, my comb-over was my strength. My mom was a hairdresser and we tried every conditioner, salve, concoction, she could find. I got a wig but I never could pull it off (meaning, keep it on), I was so self-conscious about it. About eight months later, we were told the chemo was over. I could take a break, and then radiation treatments would begin. They seemed so much easier at first. You mean I just lay here? No needles? No burn? But I was way too cocky and soon had to quit trying to go back to school after the morning sessions were over.

I got the official “remission” stamp on March 21, 1988 – a date my whole family still celebrates. 19 years cancer free – that’s me.

As a teenager with cancer, I had the opportunity to act as a representative for my pediatric oncology clinic as well as several local charities that helped my family in our time of need or funded cancer research. On numerous occasions, I appeared on telethons; spoke with potential benefactors; met with students raising money at marathons. All I did was tell my story and why what they were doing mattered. I loved it. (I loved it even more when my hair grew back.) From those experiences, I realized that the most effective communication is true and spoken from the heart and there should be no fear or nervousness if you believe in your subject matter. I can’t help but think that these lessons led me to my current position as the Communications Director for a statewide nonprofit association.

What is unique about my particular experience is that I survived at a time when freezing eggs from a young girl before she underwent treatments was seen as total folly. I distinctly remember my mom asking my doctors because she had heard it could be done. No, no, they said. It’s untested. Inconclusive. Invasive. And very expensive.

They weren’t lying. In 1988, who was thinking of freezing eggs, transplanting embryos, preserving something before it was lost? No. The best they could do was move my ovaries behind my uterus during that abdominal biopsy to shield them from the radiation I would receive to my pelvis.

It seemed like a good idea at the time.

What makes my situation unique is that the price of my survivorship is infertility. Although I menstruated before that fateful Memorial Day weekend, I never would on my own again. After a full year of not regaining my menses, doctors did ultrasounds and tests to go in search of those lost ovaries. They found one – “shriveled like a raisin.” The other – M.I.A. Or, inaction, I should say. If I want to have a family, there is no other option besides egg donation or adoption.

Having cancer has had innumerable affects on my life. Some have been positive (greater self-awareness, confidence, a joy of living bordering on intolerance to anyone not making the most of life); others not so nice (strained relations with my younger brother which are only now healing, debt for my family, and, of course, infertility). My entire adult life I have been resigned to the idea that I would never have children with the man I love. But within the last year, I found Fertile Hope, we found a Fertility Clinic that we like and trust and we found an egg donor that we want to help us have the child we always wanted. And that brings us here….

Are you Sure?

It is so funny how pieces of life randomly collide. I got a call from my old social worker yesterday morning (old as in, was my social worker 20 years ago when I had cancer). He had seen my testimony on TV and couldn't stop talking about it! Not only that, but he shared it with my pediatric oncologist and all of my old nurses, one of whom is apparently in charge of the statewide association for pediatric oncology nurses. Besides all of this being very sweet and surprising and flattering, he extended an invitation to come speak to the nurses association - about my current line of work and also about survivor issues.

Are you sure? I said. Because I have a lot to say.

This same social worker couldn't remember that the last time we talked was back in March when we were looking for recommendations for egg donation programs. In fact, he sounded surprised and pretty fascinated when I gave him a quick update of where we were in the process. I am sure it was probably too much information for him, but hey, I wanted to give him a preview of my talk with the ladies.

So, a completely unrelated incident that just happened to be televised has just opened the door for me to work with pediatric oncology nurses to help them try to understand some pretty serious issues facing childhood cancer survivors - infertility being #1 on the list. I am pretty stoked about that.

Re: dinners, I will be hosting one tonight at our house. It's my dad's birthday and my parents are in town after a brief stint at the hospital for dad. Pneumonia. Perhaps I haven't mentioned but my parents' health is not great. Dad's lungs are absolutely shot after 4 decades of chain smoking. Frankly, I was shocked that he made it through all of this moving business without ending up in the hospital. This bout struck while he was in Delaware, moving some stuff into storage down there and relaxing for a few days in their temporary home. My last call to him interrupted him flirting with the nurses at his favorite clinic. Reason #33 for them to move to Delaware. Apparently, the hospital food isn't too shabby in this clinic either. Anyways, his birthday gives us a nice reason to get together while they're in town. And I prefer to control the menu. My place it is.

Lastly, got a random call from a doctor from our clinic last night. One that we hadn't worked with before. Apparently, she is part of the "committee" that met yesterday to discuss our decision to move forward with our donor after a failed stimulation attempt. She wanted to hear again our reasons for doing so, so I gave her the run down - the same one you've read here. Perhaps I came across as defensive, but I wanted her to be clear that we were clear. We understood the risks and appreciated their desire to be sure that we were sure. I asked her if the committee had reservations or if they as medical professionals had information or knowledge that we didn't. Basically, I asked, did they see this as a fool's errand?

She said emphatically not and the committee was surprised that the previous cycle hadn't worked since the donor is otherwise healthy and the mother of two healthy children. After we talked, she said she was glad we had the conversation and that they had worked out a new protocol for our donor, one that would let them (and us) know almost immediately whether a stimulation would be successful or not. I am expecting a call from Nurse this afternoon to review the new protocol and schedule, which, of course, I will post as soon as I know.

Hey, but what about...

My friend sent me this article the other day on long-term childhood cancer survivors. Not bad, but other than a fleeting mention on page 2, it is missing one critical piece. The "probably sterile" one on page 10.

I'm not angry. I'm not bitter. I am just hopeful that as the circle of survivors grows and becomes a powerful demographic and social voice, those of us with the fortune to survive and the misfortune to do so before freezing eggs was even a possibility will be more than a footnote or one sentence in an eight page article.

Say What?

In one part of my life (the one that pays the bills) my days are filled with acronyms.

I work in the field of mental retardation (some prefer to say intellectual or developmental disabilities) and more recently, autism. In my notes and scribbles, these words usually shrink to MR/DD and ASD.

Add to that ICF/MR, ISP, IPP, SIS+, CH, SD, SC, 4300s, 6500s, CMS, HHS, 2380s, DPW, ODP.... the list of nonsensical letter combined to somehow make sense to somebody is unending.

Say what?

That's what self-advocates (people with disabilities who represent themselves and their community at policy workgroups and committees) have started to say. "You're not speaking my language." They say. "You are creating a dialect that purposefully excludes me and that's not fair."

"Nothing about me without me." They demand.

That's fair. And to be honest, I don't think my brain can retain any more anyway.

That is why I sometimes have trouble reading other blogs, particularly those surrounding issues of infertility and parenthood. I don't know the language. I don't know the code. I think it took me a few days to figure out what IVF meant. Oh yeah. Duh. I get it now.

I'm a newbie to all of this. I have never NOT known that I am infertile. It was stated matter-of-factly before my boobs even finished growing. Sure, I had moments of hope and delusions that maybe if i just stop taking my pills, my period would magically arrive and my body will have healed itself back to normalcy, but for the most part, this whole possibility of pregnancy is a very, very new thing to me.

I am fairly certain that my cycle will be in sync with a lot of other cool female bloggers out there. But I haven't responded to some queries, because I'm not sure. Coincidentally, my cycle also corresponds with yet another life changing event - my parents selling their house and moving to another state. It would be exciting and happy if it weren't for financial reasons. We can talk about that saga later.

I'll be posting my schedule later today.

SAMFund

Surviving And Moving Forward: The SAMFund for Young Adult Survivors of Cancer has recently opened their 2007-2008 grant and scholarship application process. The grants and scholarships are for post-treatment, "real life" needs such as rent and other living expenses, tuition and loans, car and health insurance premiums, residual medical bills and prescription co-pays. The organization will provide up to $5,000 for fertility options/procedures. Applicants must be between 17 and 35, finished with treatment, and residents of the United States.

For more information and to download the application, please visit The SAMFund website.

Best believe I am applying.

Needles and Pins

It arrived today. Just like they said it would.

A big box of meds. And needles. Lots of needles.

Oy.

Have I mentioned my unhealthy fear of needles? Have we talked about that? I know poor hubby is sick of hearing about it.

I cried at our training yesterday afternoon. Not because anyone was doing anything cruel or unusual to me, I was just wigging out at the prospect of daily injections for the next four months. four months! And that's if everything goes well.

What's the problem? You're wondering. It's just a little prick and then it's done. And think of the potentially wonderful result!

Yes, yes. You are 100% correct. But that doesn't change the fact that the times in my life when I have been in the most pain, in the worst way, can all be attributed to needles. Blown veins. Bone marrow aspirations. Chemo sessions gone bad. Multiple attempts to insert IVs only to hit nerves and then watch as they try again. All of this shit that I have managed not to even think about over the last 20 years comes flooding back at the sight of those fucking bags of needles.

I know my girl Rae knows what I'm talking about.

My pal S, who somehow always says the right things to soothe me and get me thinking straight, said this to me a while back during one of my first needle freak outs: She reminded me that all of those other times were imposed upon me. I had no choice. It was someone else inflicting their cures and treatments on me.

This time, it's all me. It is my choice. My decision. And that in itself should be empowering.

It is. Kind of.

We invited our pal H to dinner last night. Ok, we called her up and forced her to meet us downtown so we could ask her a huge favor. H, you see, just graduated nursing school, is getting ready to pass her boards and is almost a fully qualified nurse. She also lives across the street from us. Both hubby and I knew we would feel better if she were willing and able to walk us through our first couple of big shots (not the Lupron. Don't think all of this is over the Lupron. Its the big "P" that has me shaking.)

This also meant that we had to expand our little circle of folks in the know. Which we feel a little better about now that things are actually happening. Out of the theoretical, into the logistical.

She was completed unsurprised when we told her we were trying to have a maybe baby (which surprised me). She was honored and thrilled at the idea of being asked to shoot me in the ass. She loves this kind of stuff. She, like S, did a lot to allay my fears. I can tell she and hubby are already planning a progesterone poking regiment.

We are also planning to spend some time together this weekend celebrating the great things that are happening in our lives. New career for H. New love interest for our mutual pal C. And possibly, maybe, you know what for us. Good times, man. Good times.

fertileHope

Yesterday was National Cancer Survivors Day. This year marks the 20th anniversary of this celebration of survivorship.

Survivorship rates are increasing every year. And that's fantastic. I'm proud to say that I am one of the first generations of adult survivors of childhood cancer. What's not so great is that those of us who were on the cusp of new and different (and admittedly, successful) treatment techniques are now growing up and dealing with all the other effects of injecting toxic chemicals (aka chemotherapy) into our bodies while at the same time willfully exposing ourselves to radioactive materials.

That sounds about as modern as leeches if you ask me.

Most of the times, our doctors knew that treatments would render us sterile. In the case of Stage III Hodgkin's, even the clinical guide from the American Cancer Society admits, Girls receiving such therapy will not be able to bear children; boys will probably be sterile. However, as the potential for cure is quite real, this therapeutic regimen can be recommended for children over 10-12 years of age, provided the probability of sterility is accepted.

Provided the probability of sterility is accepted.

Who asked me?

At a young adult survivors retreat held a few years ago, I was reunited with several people who had received treatments with me. Leukemia, Hodgkin's, brain tumors, bone cancers, all of us, we had seen each other puke, cry, wince, and finally celebrate when x-rays and scans finally started coming back with some good results. Now, there we were, circled around the free buffet commiserating like old war veterans.

Many of us now had significant others. Most of them came with us to the retreat. There was one theme that day that found its way into every seminar, every discussion group, and I don't think it was one the organizers were really that prepared to discuss: How can I cope with (my partner) never being able to have kids?

In one of the sessions, one of my former nurse practicioners asked us point blank, are you angry with us? Do you blame your doctors?

What can you say?

I said what I was truly feeling at that time, which was, how can I be? You saved my life.

Hubby reported that the sessions for spouses were a little more brutal, with lots of tears and angst and anger and frustration. Some had known their partners through treatments, others, like hubby, had met long after the needles and scans and surgeries were through. Hard to say which set bore the brunt of infertility harder. Those who had watched their lover suffer and now must see them suffer again or those who knew cancer only as an abstract, something in their partner's past, like an old boyfriend who had left permanent scars. Either way, they were now living with the baggage (or lack of, so to speak).

At that time, honestly, hubby and I had already resigned ourselves to life sans baby and found most of the day pretty draining and overwrought. I had convinced myself, as I had when I fully understood the implications of my no longer getting a period, that I really didn't want a baby anyway. I wasn't cut out to be a breeder. Who needs kids anyway.

Things change.

After a series of events, long talks, lots of tears, and some serious soul searching, we decided to pursue (again) the idea of egg donation. You see, we had tried this a few years ago but we were dissuaded after a consultation with a doctor/fertility specialist who we have now decided must have been clinically depressed. Not only was he completely opposed to the concept of anonymous donors ("ethically questionable," he said, "an uncomfortable market," he said), he asked us if we thought "the world had enough babies in it anyway." I am dead serious. We left his office slightly stunned and certainly rid of any thought that we might someday be parents.

I began, like most of my fellow bloggers, looking around online for some leads. Search after search pulled up articles and exposes about the growing price of "designer" or Ivy League eggs, reports on the lengths desperate couples would go, the money they would spend, for the promise of possible conception, or even worse, blogs from people who felt victimized or hoodwinked by their programs or clinics.

This was not at all what I was looking for. Not what I hoped to hear.

There MUST be someplace reputable out there, I thought. I KNOW I am not the only person in this situation. I cannot be the only woman who had cancer as a kid and now wants a kid of her own.

Click. That's the light bulb finally going off in my head.

I revised my searches, I started where I should have started in the first place. I called my pediatric oncologist and my old child life specialist (aka social worker). I dug up my materials from the survivors retreat and started calling the nurses and specialists listed on them. I found fertileHope.

fertileHope is a nonprofit organization dedicated to helping cancer patients faced with infertility. Their primary mission is education and assisting those about to undergo treatment plan for the future. But they also have a great Cancer and Fertility Resource Guide, which lists all of the fertility specialists in your area who are familiar with the issues surrounding cancer survivorship. This is where I found my clinic.

Hope, at last.

Happy Survivors Day.

Can't Hold Back

I know Mother’s Day is still two days away but I’m no good at waiting.

Congratulations to a fellow cancer survivor and traveler on this egg donor adventure, Rae!

Let me shout another Happy Mother’s Day loud enough so another childhood cancer survivor H can hear it all the way across the ocean. 14 weeks and counting!

Rae found Maybe Baby shortly after my first post. I am so glad she did. Through her blog, I found Mi Historia, the story of a fellow “wanna be earth mother” which leaves me crying and laughing and believe it or not, longing for London. I love these blogs. I love these women. I love that there really is hope for a full and fertile life after cancer.

Happy (early) Mother’s Day to all the hopeful maybe mommas.

What's Next?

I find this whole egg donor process absolutely amazing. What’s even better is that the few people that I have confided in about our little adventure feel the same way. I received a couple of sweet emails this week asking me, so, um, what’s happening in maybe baby land? reminding me to share a little more with you.

The answer right now is not much. In twelve days I go for a hysterosalpingogram, HSG for short. My gynecologist will meet me at the local hospital, inject dye through a long needle into my uterus and then take a series of X-rays to see if there is anything that would prevent a fertilized egg from finding a nice, cozy home there.

I’ve been told that there will be some cramping and bleeding and my gyn strongly suggested I start the day with some breakfast and a substantial dose of Advil. Swell. I am sure that I will be in the best of spirits as I sit through a three-day long Board of Directors strategic planning retreat which begins just a few hours after my procedure.

On the other side of things, our donor is going through the rest of her screening process. More tests, more appointments. After our frustrating visit to the genetic counselor I felt incredibly bad knowing our donor would have to sit through the same thing. Sorry donor.

**

You know, 19 years ago, after I had finished my chemo and radiation and it was pretty obvious that both had made me infertile, my doctor would tell me things like, They told my mother she couldn’t have children after her appendectomy and she popped out three of us! and, With all the advances in science and medicine, you really don’t know what options will be available to you by the time you want to have children.

The first statement I believe was more of a warning against unprotected sex because I would hear it well into my twenties. The second I think was meant to console my parents more than me because frankly what 13 year old gives a crap about having babies?

19 years later, whodathunk my kind doctor was right?

Who knew?

Wow. Who knew that I was not immune to Rubella, aka German Measles? So I am off to my doctor for a quick MMR vaccination on Monday.

I probably would have been immune to this fact for the rest of my life, or at least until I got them. But since congenital rubella syndrome is no joke, we'll just get this sorted out quick fast in a hurry, shall we?

This probably justifies every poke, prod, test and squirt that hubby, donor and I are subject to over the next few months. Women are warned not to get pregnant until at least four weeks after receiving the vaccine. So finding this so early in the process means it shouldn't delay anything later on.

Oh darn you missing spleen.

Don't it always seem to go,
that you don't know what you got 'til it's gone....