March 28, 2010

rainy with a chance of baby

While I've been tackling the cancer and IVF procedure with humor and a positive attitude, in the past 8 weeks there have been a few occasions when the general suckiness of it all sets in for a moment.

Today was one of those days.

In the days leading up to the egg harvesting, I do a blood draw every day to check my estradiol levels, along with all the drugs. Every second or third day, there's a transvaginal ultrasound to check the follicle size (imagine them to be like Goldilocks; we don't want them too big or too small, we want them just right).

When the doc inserted the probe, my ovaries appeared on the screen. In that moment, it hit me that I'll never be able to see my baby in there, on that screen. Because my uterus simply won't be there as of April 12th.

My lip began to quiver, and quivering lip begat teary eyes, which began rain pouring down my face. I was sad for what I'm losing, sad for not being able to carry my child, sad for my body's rebellious nature against nature.

After a few moments, I composed myself and headed back to the lobby, where my smiling, handsome husband greeted me with a hug. That made it hurt a little less.

March 27, 2010

spahhhhh day

Today was invigorating, positive, affirming, and mad kindz of special to me, as I spent the day at Glen Ivy Hot Springs Spa in Corona. I wanted to spend a day before my surgery thinking about anything BUT my surgery, you know?

I'm happy to report I laughed my ass off, got pampered, and had so much fun hanging out with 10 of the most wonderful women I know.

I'm lucky to have each of them in my life, and know that with that kind of love around me, not only will my egg retrieval go well, but I'll also kick cancer's ass in 3 weeks!

March 25, 2010

call me dr. feelgood

One of the best parts about the IVF process so far has been the inordinate amount of drugs I need to take. It started off innocently enough. Two pills here, one shot there.

As of this week, though, we're in the big boy leagues. Join me for a song, whydon'tcha?

You can just call me Dr. Feelgood

Casa DeFrias Sing-A-Long Blog
(sung to the tune of "I've been everywhere man") 

I'm on every drug, man, I'm on every drug. There's...

  • Lupron *
  • Menopur *
  • Follistim *
  • Novarel **
  • Doxycycline
  • Baby aspirin
  • Metformin (thanks PCOS)
  • Pre-natal vitamins
Bring it to the chorus one last time! I'm on every drug, man, I'm on every drug.

While many of those listed are oral meds, those three lovely ladies marked with a "*" are extra special: they are delivered via a needle. Oh the joy. To be fair, it's only subcutaneous via the abdomen.

The last "**" one, though, is superdillyspecial: it must be delivered into muscle with a reaaaaaaaaally long needle. I'm SO looking forward to that day!

March 17, 2010

is it like being kinda pregnant?

I spent the last six days in Austin, Texas, attending South by Southwest. There are three tracks (Interactive, Film and Music), and I attended the interactive one for work.

The most impactful panel was a little publicized, intimate panel on the final day called "Twittering Thru Chemo - Survivors Unite" and was moderated by Drew Olanoff and Brian Simpson (the former famous of the #BlameDrewsCancer meme on Twitter).

There was so much love and power in the room, and I felt it kind of wash over me when I got up to share my story, and ask for advice.

"I'm a melanoma survivor, and am currently dealing with the uterine cancer I was diagnosed with 4 weeks ago. We're trying to harvest my eggs via IVF before they take my uterus out on April 12. My question is more of a comment, really: every time I mention I'm a cancer survivor, I feel like a fake. A phony.

Like I only kind of have cancer, since both times we caught it really early so I never had to go through chemo or radiation. So I feel like a fake survivor. Kind of like only being a little pregnant."
Drew and I

Both guys were gracious and understanding, and made me feel better about my situation. Surviving's surviving, no matter how much -- or how little -- you go through, they said.

It was at that point that I began tearing up again. Why? Because I'm so caught up in taking my IVF meds and keeping the schedule for them straight, plus mentally bulking up for the hysterectomy, that I forget the reality of what's going on really means. Wanting to be a mom, and also dealing with the cancer once more.

I've been replaying the panel in my head since yesterday, and as I reflect, I'm thankful to Drew and Brian, who took time out of their busy life to make me feel a little better. :)

---

Afterword, Halle Tecco from the Huffington Post interviewed me for her article on the panel:

"Twitter Therapy: Cancer Patients Tweeting Through Chemo"

For the full list of panel comments, visit the panel hashtag list on Twitter.

March 11, 2010

the $2,529 tweet - qantas makes good

Remember my comments about Qantas a few posts ago?

How we were supposed to vacation in Australia and New Zealand in May, but because of the cancer had to cancel? And how they're all, "Unless you're dead, your refund request is dead to us."

Well it turns out there are people who care at Qantas: we got the refund! All thanks to one tweet by one kind soul who works with me. (And thanks to the hard work by a Qantas person who cares!)

Read the full story.


March 8, 2010

etymology's not lost on me

As a writer, the history of a word or phrase fascinates me. How it's evolved throughout the years and how folks use it captures my attention. So it's no surprise that names interest me as well.

In breaking this blog's protocol, I'm going to share a name with you: the Receptionist. Her name is Theresa. The one who listened to my story originally, told me everything was going to be okay, and made it her mission to help us. She's the one who pushed reaching out to the drug reps, and hounding down the doctors. Our personal egg sherpa, if you will.

Curious, I googled the meaning of her name. I was raised Catholic, stopped practicing years ago, but I still remember my saints. Saint Theresa of Ávila is patron saint of the sick and ill. If my body's good at nothing else, with two different cancers -- plus PCOS -- under my belt, it's got the ill part down.

Seems only fit that the Receptionist, who made our situation hers, shares an etymology with such a saint.

March 6, 2010

an amazingly wonderful day

Yesterday started out like any other Friday, so of course it meant looking forward to the weekly happy hour at work. For most of the morning, I worked on words and user experience stuff for our site, knowing that by lunch I'd have to call Dr. Hope and let her know our decision. (IT Geek and I spent much of Thursday discussing our options.)

At 11 a.m. I got a call from the Local Research University's Reproductive Office. They wanted to let me know they shared our story with the drug reps and the doctors at the office, and, by the way, all of them wanted to donate their services so we could do IVF.

[Insert jaw-droppy moment here.]

The drug reps are donating thousands of dollars of drugs so we can harvest my eggs. The doctors are donating their time. All we need to pay for is the retrieval, tests, and storage. And, by the way again, they even were able to get that price lowered.

But yeah, that. It's still a lot of money, but not the $14k we were originally quoted. So I went back and forth all morning in my mind.

I needed a mental break, so I headed down to lunch. And the more I thought about everyone's generosity, the more I realized how much how many people -- total strangers for the most part -- care and want to make this a reality for us.

So fuck it, it's only money.

We'll make it work. I rode the elevator back upstairs, smiling at the thought of calling IT Geek and telling him we'll make this work, we'll clean out our savings and my 401k and whatever else we need to do.

That's when the floor fell out from under me.

I got a call saying we qualified for a no interest loan. We talked about the payment options for a moment, then I hung up and cried for the next 35 minutes. I couldn't speak, I could barely breathe. Five weeks of build up came out in sobs.

So I'm grateful today. Grateful to the doctors, to the drug reps, and to everyone who's been rooting for us all along.

I called Dr. Hope and gave her the green light to start the process. I also said that since we're able to try for eggs before the hysterectomy, I definitely want to donate one ovary to Dr. Professor (so he can study the PCOS) and one to the Algea Study (so they can study growing the embryo in a more natural environment). She's thrilled, and also got a little teary-eyed. She said this (meaning all the folks donating to us and us wanting to donate right back) is unheard of, and directly linked to us being so positive and willing to share our story.

Now let's harvest some eggs!


My favorite Gary Larson comic ever.
The irony's not lost on me with the
egg harvesting comparison.

March 5, 2010

what a difference a day makes


Updated with Option 4 (see below).

Hope.

As one of my friends tells me all the time: "Always start from hope."

Yesterday we met with two docs over at Local Research University (LRU), and turns out there IS one study we qualify for! But I'm jumping ahead of myself in our story...

Remember the nice receptionist who told me everything was going to be okay? She made good on her promise to help us out. Two days ago I got a call from a doctor who introduced herself as the new reproductive endocrinologist, freshly arrived from Penn (where I had my melanoma-metastasized-to-my-head scare. She knows my doc from there) to set up the new Reproductive Endocrinology Center at LRU. Small world.

She said between the melanoma, the PCOS and now uterine cancer, I'm a very interesting case study. I couldn't agree more! I'm a medical abnormality, study me people! Our options, based on our wonderful meeting yesterday with Dr. Hope and Dr. Professor:
  • Option 1: Harvest my eggs. Since we're about 6 weeks out from surgery, we still have an option of harvesting my eggs. It would mean 2 weeks of taking birth control pills, then 2 weeks of "hey eggs, HAPPEN" pills, then harvest! (Hope at end of post.) Obviously the optimal choice, but the priciest one (see earlier post about $14k price tag).
  • Option 2: Donate my ovaries. This is actually one of the first things I thought of when I was diagnosed. When I got my driver's license, I happily placed the organ donor sticker on my card. It makes me happy to think I can do this option, if nothing else. Plus, given my history, Dr. Professor said he would "love to study" my ovaries. Of course, he said he'd love to give me a baby and my health comes first, but still, my ovaries beckon. I get it; they're whacked.
  • Option 3: Follow the 80/20 rule. There's this brilliant study out of Northwest University where an investigator hypothesized that they could do better than to try grow embryos in a 2D dish. Why not try to mimic the natural state...where it's more like how seaweed flows in water. So that's what the study's about: grow the embryos in synthetic algea/seaweed stuff. If we did this option, they'd get 20% of my ovary tissue for the study, and 80% of it would be mine, stored away next to the Ben & Jerry's in a freezer until the day comes when this study proves itself out. That could be years, and years, and years though.
  • Option 4: Leave the ovaries in. Turns out Dr. Professor and Dr. Man are buddies. The former's going to call the latter and see he's comfortable leaving the ovaries in (since the cancer's in the uterus). If there's no health threat to leaving the ovaries behind, they'll leave them in and try to harvest my eggs after I've healed from the surgery.

They also told us about the wonderful people over at Fertile Hope, "a national, nonprofit organization dedicated to providing reproductive information, support and hope to cancer patients and survivors whose medical treatments present the risk of infertility." With aid from the Lance Armstrong Foundation, they help defray the costs associated with IVF for we cancer-type peeps. Turns out we make a little more than their range.

Last night IT Geek and I talked about the options -- and consulted with Nurse Mom -- and decided to do a mix of Options 2 and 3. One of my ovaries would go to Dr. Professor, who's interest lies in my PCOS and the other one would go to the Seaweed Study.

Except...when Dr. Hope called back today to see what our decision was, she replayed her comments again that IVF is still the best hope for making a baby for us. I began crying, again, because it just wasn't financially feasible. I told her I'd hoped there was a loophole in the financing, a kind of, "Hey, it's shitty you have cancer, so we'll take pity on your soon-to-be-barren soul and help a sister out."


I was made to be a mommy. And a kick-ass one at that.

You don't grow up as Daughter of Nurse Mom to not be a stellar mother. I told her as much, and that it looks like we make a tad more than the range to qualify for the financial aid. Her response?

"This is just crap. You make a little too much, but not enough to cover it yourself. It's shitty -- sorry for the language, but it's just shitty. You deserve to be a mom. I'm going to figure this out for you. Give me until end of day tomorrow."

Dr. Hope. You've got to love her.

March 1, 2010

take me on, take on me

Met with Dr. Nice Lady (DNL) on Friday for my DnC post-op. Like everyone else, she raved about the awesomeness of Dr. Man being my uterus harvester for my hysterectomy. He's the cat's meow all-around, apparently.

One of the reasons we're delaying the surgery until April 12 is so we could have time to explore harvesting my eggs. As BigHMO doesn't cover this type of procedure, DNL gave me the contact info for Local Research University (LRU) who may take me on. (Since I'm a "special case" due to my cancer and the procedure would be a last resort, I may qualify for a study or a pro-bono/reduced rate.)

I called LRU Friday as soon as I left DNL's office, and the receptionist kindly listened to my story. The first words out of her mouth: "You're going to be okay." :) She said she was going to talk to everyone in the office and see what they could do.

Cut to this morning, and I got a call from the LRU folks. Given we're six weeks out from surgery, IVR would be a tight turnaround time. It can be done, but then she told me the cost:

$14,000 a cycle.

Swing...and a miss.

While I was expecting it to be pricey, hearing it out loud caused me to begin crying right there in the middle of the conversation. I explained to her the framing my doctor gave me. She said she's going to reach out to the doctors and see if there are any other studies they know of (or if they'd want to take me on).

Right now, though, it's just a ticking clock for my eggs to the hysterectomy date.