Friday, August 31, 2007

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….

Thursday, August 30, 2007

Do You Have That in Blue?

Our donor seems to be responding to the new protocol, showing an estradiol level of 119 - right on target (between 100 and 200 is the norm). This time last cycle, she was showing a level lower than her baseline of 37. This time last cycle was when flags started to turn red and eyebrows started to raise. Things seem to be different this time.

If my post seems overly calm, its because I can't let myself think this is going to work just yet. Just in case it doesn't. Talk to me tomorrow after her first ultrasound. If there are more than just a few follicles then I just my let my joy get the best of me.

You know, drowned girl had an omen before her successful (and then some) transfer. Perhaps this is mine?

What If

Sometime this morning, in the midst of meetings or perhaps this afternoon while I am frantically on the phone trying to pull a piece of print together for tomorrow's deadline, my cell phone will ring, I will look at the screen and see Nurse's name. I'll discreetly find a quiet place to take the call. And then I will find out whether or not to cancel the ultrasound and blood draw I have scheduled for Tuesday.

My donor comes in for a blood test today to see if this round of stimulation is working. Recall that this is our second attempt with a donor who failed to respond to the first round of stim drugs. We are trying a totally different protocol this time around in the hopes that last time was just a fluke.

I understand the odds. I also know that we are not ready to march into the clinic and say "just give us someone, anyone, fertile." Not yet. That feels like sleeping with the first person you see after breaking up from a long relationship. And we all know how well that works out.

Our donor is anonymous, but so similar to hubby and me in so many ways, it is hard to think of trying with anyone other than her. So I am not going to think about it until I have to. Which I hope I won't.

Even if today's news is not what we want to hear, the "what if" will be laid to rest. And that's important to me.

Here's to hoping.

Monday, August 27, 2007

And We're Off...

Our donor's baseline is today. She was right on time. Stim will start this afternoon or tomorrow.

I'm supposed to call Nurse as soon as my dear aunt sally arrives so we can get a baseline blood draw and get right to work on ingesting some estrace and building a loverly womb.

I feel like I should be running around with a pocket watch on a chain mumbling, "I'm late! I'm late, for a very important date!"

But I'm not. I'm right on time. And if I can trust what my body is feeling like today, my flow will begin any second now. Funny. If you're trying to get pregnant, aren't you usually hoping you don't get your period?

Friday, August 24, 2007

Free Drugs!

I don't know how they did it and I don't even care to ask, but my clinic was able to secure most of my donor's meds for this cycle at no charge to us.


What great news to start a Friday. I take back any frustration I have ever expressed about them.

Waiting for my lupron bleed. Donor is waiting for her normal bleed. Both expected next week. Then we are off to the races.

Wednesday, August 22, 2007

The Sound of Music

I was going to write a post today about how different being on lupron this time around has been - it hasn't made me loopy or stupid, no headaches, blurred vision, no mood swings.....

Then I plugged my mp3 player into the radio as I made dinner. Switched it to shuffle.

And every single song had me flying high or on the verge of tears - like high-school-lost-crush- drowning-in-my-own-self-pity-but-loving-it tears. Every house anthem had me ready to rave. (Bring on the strobe lights!) And every Afghan Whigs song made me want to go in search of a creepy yet hot stranger to go make out with and regret later. It was like I had a surge of being-nineteen-ness into my body. It was awesome.

Hormones are great.

And honestly, a whole new life experience for me. I haven't produced my own since age 13. How early is that menopause? But that's exactly what it was: Ovaries shut down and/or gone missing. No estrogen for you! I know hubby is looking forward to the doses of estrace which will begin in about a week. Apparently, my body temperature actually normalizes when I have some estrogen in me. Otherwise, I'm nicknamed the "heat miser."

So, to recap, day 6 of lupron. Waiting patiently for ms. donor to flow. I'll be getting bloodwork in a few days and then begin estrace. In the meantime, I'll chuckle for a few more days as I take my birth control pill along with my pre-natal vitamin. Is that funny to anyone else?

Or just me?

Hormones are great.

Monday, August 20, 2007

Wow, that's a long post....

I am swimming in a sea of post-it notes! Gone cross-eyed from the chessboard that is my calendar. Up to my ears in projects, tasks and good intentions spanning work, personal and baby-making life and getting absolutely nothing done.

Sometimes (when it suits her) my boss will sigh and say, perfection is the enemy of good. As in, we try so hard to get something just right, we end up not accomplishing anything at all. This happens a lot in my office and alas, I think its a habit that I have acquired. In my quest to wax literary about all the good things happening lately, to turn them into sweet little vignettes both poignant and funny, it seems I am left staring at a blank page.


All of this to say, sorry for not posting. Here's what's new:

Hubby and I jumped in the car after work last Monday and drove down to Slower Lower Delaware to assist my folks in assembling their computer, look for a house and oh yes, get some sun. The first night there, I got myself worked up about the perceived cold shoulder I felt I was getting from the clinic and couldn't get back to sleep. First thing the next morning, I sent Nurse a very plain email - What's up? Call me!

And she did.

And that started a flurry of phone calls from her, the clinic, the pharmacy, the financial person at the clinic (of course) and before you know it, I am on day five of lupron injections, trying to get back on the wellness track (more exercise, less beer. more pilates, less stress. happy womb, happy womb.....) waiting patiently for our donor to have her monthly flow.

Once she bleeds (which should be within the next week or so), we will begin a whole new protocol using ganarelix and follistim - one that will allow the docs to know right away whether or not she will respond to artificial stimulation. While last time felt planful and almost too leisurely, this time, if all goes well, we are looking for a retrieval and transfer around 14 days after she begins stim. Wow.

Let's assume her period is regular, my uterine liner gets all plump and juicy and her follicles are in a frenzy to produce, that would put us around Sept. 15th for the transfer, approx. two months after we had originally planned.

So, yes, it's been a busy week! We only had a few days at the beach since we had to get back to work on Thursday. Friday we provided moral support to hubby's cousin who had an informal high school reunion and Saturday we spent mingling with 70+ members and 4 generations of hubby's family at a good ole fashioned family reunion. That was humbling.

You see, our families are pretty used to hubby and I making big announcements. PS, we're moving to another country. Oh yeah, we're quitting our jobs and traveling for a few years. Hey, we're writing a book. (I'm cringing at that last one as it is among the pile of post it notes). But this time around, our lips were sealed.

"So, what's new with you guys? Anything exciting in the works? Any big plans?"

"Um, no. Nope. Things are pretty quiet these days." and then we would slink off to find more food. It was like Easter dinner all over again.

But besides that, the reunion was good in some ways, not so good in others. We all had a good time while we were there and hubby and I even stole some cousins for a night out on the town. But Sunday saw hubby's mom super sad and missing her mom who passed away a few years ago, his dad drowning in self-pity since his family now consists of us and his one aunty whose health is failing, hubby in an all around funk and me pondering questions of identity, definitions of family, the relevance of blood lines and genes both for myself and my future maybe baby. There are no easy answers, are there? Thank goodness there are books.

Saturday, August 11, 2007

Is it me??

I bet you'd like to know what my schedule will be. Gosh, so do I.

I finally emailed Nurse on Friday since I had been expecting her call since Monday, when the clinic said she would call. I thought I sent a pretty benign email asking the usual questions, hi, how are you, do you have any info on my cycle, and by the way dr. somebody called me last week and said that you would call.

Her curt response surprised me. She said, yeah, ok, I'll get back to you next week. You know her [the donor's] protocol will be different this time. Re the doctor's call she said this:

Yes the doctors want to make sure you want to use this donor because of her lack of response. We don't know if she will do any better with another protocol. You have a great weekend too.

Just me, or were those sentence completely unnecessary?

Just in case the several hour consult with our Doctor and the half hour call from the Other Doctor didn't drill into our head that this new protocol may or may not work, Nurse needed to throw in her two cents as well.

Now, in working with Nurse, we have come to realize that she is a glass half empty as opposed to half full kind of gal. But I have never thought of her as being impatient or insensitive and this email struck me as both. And that hurt my feelings. 'Cause I'm sensitive.

And my glass is half full.

Tuesday, August 7, 2007

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.

Friday, August 3, 2007


Oh friends, its been a long, long week. But ultimately, productive, eventful and dare I say, fun? I was even on TV! Ok, public access but still. It's not every day that a good hair day and new pants are saved for posterity, right?

I had to testify (can I get an AMEN?!) no, no, not that kind. In front of a legislative committee yesterday. I was nervous and that was probably a good thing because I prepared like I was facing some hardcore midterm exams. That was fortuitous because those old white men grilled me. And you know what? I aced it. I really think I nailed every answer in a way that was truthful, not defensive and conveyed the points my organization was trying to make. And I actually looked like I knew what I was talking about. (I've fooled them all! ah hah hah....insert more maniacal laughter here). As you can see, I am still flying high.

In other news, the house that I grew up in is now in the hands of strangers. Closing was Tuesday. My parents are relieved. In fact, could my dad have located his sense of humor and ability to be happy? Those things have been lost for quite a while. Was debt so overwhelming that that was what made him wish for death for the past few years?? My god. I guess we all deal with it differently, don't we?

After a few frantic days of last minute packing and cleaning, we all (me, hubby, brother, his g-friend, mom and dad) went for a celebratory dinner Tuesday night at a place where bro and I served as line cook and waitress respectively. It was awesome. Bro and I amused with tales of steaks and girls gone bad. My mom got totally tipsy on a frozen concoction. I overindulged in a baked sweet potato with cinnamon sugar and other things I don't usually eat. My dad just looked happy.

My dad looked happy. It was a moment.

They still don't have a permanent residence, but hell, if they aren't stressed, I'm not either. They both seem to be basking in the idea that they won't have to panic come the last week of every month or every time a new unpaid hospital bill appears in the mail.

All I can think of is that perhaps it was really, really a blessing that this last cycle didn't follow the original schedule. Sure, I know we all say that when things go wrong/not the way we planned. But seriously, there is NO WAY I could have done the things I've been doing this month with something trying to grow and be nurtured in my belly. I am bruised and sore and my muscles have been working overtime. I've never done so much heavy lifting and cleaning with toxic stuff. My thoughts have been elsewhere. Anywhere but focused on the creation of a happy womb. My time will come. This time is for my parents.

Here's the best part of the story. Today is Friday and my favorite band is playing tonight.

Happy weekend y'all.