Saturday, May 14, 2011

the birds and the bees . . . and possibly frogs

I have a number of things on my mind but thought I would give a warning up front that if you are at all squeamish about frank and open discussions about reproductive matters (albeit of the clinical, petri dish variety), you might want to skip this post. I'm not, so here we go.

I am nearing the end of my "cycle" which is how the fertility clinic people refer to this whole nightly-injection-to-grow-my-eggs process. At this point I am giving myself three injections each evening, plus a couple of pills and I am either kidding myself or I am somehow a master of emotions because I have not really had the emotional mood swings I anticipated. Unless you count how snappy I get with my mom sometimes. I don't because I think that is just me being an impatient jerk to loved ones - par for the course, can't blame anyone but myself for that.

What I can blame on the injections is how my belly now feels like a pin cushion. Also, the bloating. A day or two ago my stomach popped out into what I am fondly calling my egg sack. If I was more familiar with the reproductive practices of the animal kingdom I would draw a nice little parallel here. Instead, I will probably inaccurately claim I feel like a frog growing my little eggies waiting to deposit them onshore somewhere and hope one day they survive the elements and one day get fertilized. This morning I was told I have ten eggs. TEN! I realize that doesn't mean they will successfully retrieve all ten, nor does it mean they will successfully freeze all ten but the more they see growing in there, the better my odds are at having a few successfully frozen.

How do they know I have ten eggs growing in my bulging little egg sack? I'm glad you asked. Although you may not be since I'm going to right ahead and show you something that I find part hilarious and part horrifying:

At that first fertility appointment I walked into the exam room and was startled to see the ultrasound machine all prepped and ready to go with a condom. I was a bit dazed and overwhelmed that day already and this thing nearly sent me over the edge. But it isn't actually a condom, it is a sheathe:
So much better, right?

Well, if you have been through IVF none of this will be news to you but if you, like me, have never even thought about that sort of procedure let me tell you, I am so amazed by the women who go through this - many of them multiple times. During the 12-15 days of the cycle, I go to the clinic every two days for blood-work and a friendly visit with the ultrasound to count my eggs and see how they are growing (last appointment they were 14 mm! forgot to ask this morning). The same day as my appointment I get a call from a nurse who talks me through what injections I should be taking and advises me as to when I should return to the office. Yesterday I had both a nurse and my doctor call. My doctor has been especially attentive. For all I know he is this way for all of his patients and not just me because I'm the cancer girl but until today he has made sure he has done all of my ultrasounds. And today's doctor seemed extra attentive as well as if he was told I'm the special case who needs a little extra. And I appreciate it.

Although to be honest, they probably treat all of their patients this way. I mean I am on a bit different path because of my cancer and I am on a highly accelerated track with bended rules and modified procedures but every woman who is there is in a tense and emotional spot. Each visit I am acutely aware of the shift in environment as I enter the waiting room. The air feels charged with a longing or yearning, a palpable desire to do whatever it takes for a child. It is almost as if you can feel the extra hormones being injected directly into the room as a whole rather than each individual woman. At first I thought it was just the newness of the experience but each time I sit in the waiting room, I feel it. I want to hold each woman's hand and reassure her. Many sit with their presumed husbands but others are there on their own because this appears to have become just part of their routine. The men seem anxious as well and are often there on their own, looking just as nervous and possibly more jumpy than the women.

I'm happy to be nearing the end of this process. A week ago when I gave myself my first injection I thought maybe I was nervous about the whole process for nothing as it just didn't hurt after I pinched my skin so hard I didn't even feel the needle go in. But now I've moved on to more and more complicated injections and with three a night I am running out of fresh spots to poke. There are little pinprick marks and light bruises and one injection leaves a redness that is gone after 20 minutes or so.

On Tuesday morning I made my final decision on what exactly I will be freezing. Up until Monday night I was walking down the path toward embryos with a sperm donor, even though the whole thing seemed overwhelming with all the undetermined contingencies ahead of me. But as with all of my decisions, after devouring information and weighing the options and pushing forward, an answer spoke to me.

Tuesday morning I went to the clinic for my blood work and ultrasound at 8 am knowing I needed to just turn around and go back at 11 am for my appointment with a psychotherapist who would determine whether I was mentally sound enough to follow through with this process. This is one of those modifications in process I referenced earlier. Normally, there is a significant checklist to tic through before commencing the cycle but I was accelerated so despite the fact that I was already shoving hormones into my belly each night, I still had to pass the mental fitness test and turn in the oocyte or embryo consent packet.

After the first appointment I went to my office and opened the top folder to review the forms again. The first of the three identical folders I opened (the third was just general information) happened to be the oocyte option. On my walk from the clinic my thinking had shifted to oocyte only and when I opened that folder and re-read the forms I started signing. No more doubts or worries or anxiety, I just knew this is the option that is right for me.

What tipped the balance?

The research consent forms.

In all of my research on fertility preservation I have been surprised by how experimental oocyte cryopreservation is. For some reason - whether from the media or casual conversation - I had the impression although pricey, it was a viable option. But compared to embryo cyropreservation, it is still newer technology that needs a lot more data to improve since as one article I read put it - "the prospects of pregnancy are very low if only one treatment cycle is available." The article goes on to state

Freezing mature oocytes is a technical challenge because mature human oocytes are extremely sensitive to temperature changes and have limited capacity for repairing cytoplasmic damage. Cryoprotective agents (CPAs) and/or ice crystal formation during a freeze-thaw procedure can lead to depolymerization of the meiotic spindle and, consequently, aneuploidy (12, 13). Zona hardening can also occur as a result of the premature release of cortical granules from the ooplasm when oocytes are chilled or exposed to certain types of CPA (14), although this problem is circumvented using intracytoplasmic sperm injection (ICSI). Human oocytes can be cryopreserved at the metaphase II stage or at the germinal vesicle (GV) stage, although its efficacy and safety are unknown.
("Fertility Preservation in Female Cancer Patients: Current Developments and Future Directions", S. Samuel Kim, M.D. Jan. 2006.)  In other words - freezer burn is a problem with freezing eggs.

For cancer patients, embryo cryopreservation is the most successful fertility preservation method with a pregnancy rate of 20-30% per transfer of two to three embryos. Due to the ice crystal issue, the success of oocyte cryopreservation is significantly reduced. The oocyte survival rate during the thawing process is only 37%, however the pregnancy rate per cycle is reported to be as high as 22-25% after sperm injection and embryo transfer, but this rate is not routine so the realistic rate of success is only 2.2, or 3% pregnancy rate per thawed oocyte. And as of 2005 (the date of the article where I'm getting these stats) fewer than 100 births have been reported from oocyte cryopreservation. ("Potential Options for Preservation of Fertility in Women", Rogerio A. Lobo, M.D., The New England Journal of Medicine, July 7, 2005.)  More recent articles indicate improvement in the freezing process but I don't think the statistics have improved significantly on the actual success rate of the thawed oocyte achieving pregnancy.

All that being said, by selecting this as one article puts it "investigational, expensive, invasive" option, I am not only giving myself some peace of mind that I am taking steps to preserve my fertility - fertility which I may never have the need to call upon - but I am also adding a tiny little data point to the overall research which could eventually improve the options for other women in my position.

I don't say this to be noble. I also do not feel like I am making a sacrifice for this option. This is the right choice for me in my current position and the fact that it can make some tiny difference for others down the line - all the better.

But enough about fertility. Let's now talk genetics.

Last week, as I mentioned before, before my first appointment with the fertility clinic, I met with a genetic counselor. My oncologist wanted me to meet with her to map out my genealogy cancer chart (for my LDS readers, "genealogy, I am doing it" may be ringing in your head as it is in mine, although I don't think the primary song was referring to this type of family tree) and to get tested for the BRCA1 and BRCA2 genes. You may have heard about the breast cancer gene before.  I had. But only in those passing news stories about young women who get double mastectomies because of the gene despite the fact they didn't have any sign of breast cancer . . . yet.

I didn't understand. I thought it was fear based.

The genetic counselor explained with pie charts and percentages I do not recall how the BRCA1 and BRCA2 genes greatly increase your chance of getting breast cancer or, in my case, increase the chance of recurrence. While double mastectomies are extreme for young women without cancer, it seems to be a different matter for someone in my position already queuing up for surgery. With chemotherapy to reduce the tumor, I will likely only have a lumpectomy this fall to remove what is left of the cancer. But if I have one of the two genes I will most likely opt for a double mastectomy to reduce the odds of recurrence.

This sounds pretty horrifying at first, I admit. But then I learned that the reconstruction is part of the same surgery - there just wouldn't be a time where I would have to be without breasts (an option some women might choose). The breast surgeon performs the mastectomy and a plastic surgeon swoops in to finish with his magic. And let me tell you what I learned about his magic . . .

I have long mocked implants. I do not understand them. I have never been much of a boob person. When I was younger (read: thinner) I mocked my own As and was soon content with the Bs I eventually grew into. And in running and other active sports, I am grateful for my relatively small size - they are easy to contain but substantial enough to give me some shape. Good enough.

So while I appreciate that very small women might have a desire for something more substantial, that desire has never been in me. I mean, I can get away with whatever v-necks I choose without fear of too much cleavage. I have to go to some effort with the right bra to even push things together enough to get cleavage! Choosing sports bras is relatively simple as no special structure is needed and it is rare I even notice much bounce.

But now friends are asking if I would go bigger if given the opportunity and I have to wonder . . . would I? Or would I choose to remain relatively the same size, just . . . perkier? I don't know. But I must say I am pleased with the other options. I learned that implants aren't the only choice in reconstruction. The surgeon can take "tissue" (which I am interpreting as "fat" but that's just me) from the stomach or butt and use that instead! That could definitely affect my decision on size. I mean, the bigger they are, the more I presume they take from my ass (and possibly inner thigh!). That sounds like a win-win cancer makeover - lipo and a boob job in one.

I'm getting ahead of myself. The results of my genetic testing should be back sometime this coming week and of course I prefer to not have the gene so I don't even have to consider all of this but if I do, it is nice to know there is sort of a consolation prize, if you will. 

Before I finish this monster of a post, I want to share a little piece of happiness I stumbled upon as I sat in the waiting room at the breast surgeon's office waiting to meet the genetic counselor. I opened a magazine I had brought from home to this page:

It is a Jeep ad but for me at that moment, it was a sign. A sign that I am genetically engineered to be BRAVE and FREE. Brave for the coming months of treatment and Free of cancer at the end. Staring at that page, which I want to frame, I felt a cool breeze in my hair and the sun on my face as if I were standing triumphantly at the top of the mountain instead of down here in the muck and fog, trying to find the trail head.


Annie said...

i laughed a little at the horror you experienced upon seeing the condom covered ultrasound wand. sorry! it happened to dan and i too. i think dan may have turned a little red in the face when he saw it!

brave and free. i love it! you are inspiring!

in our house i have a plaque that says 'i can do hard things'. sometimes i hate looking at it. but, it is true. we all can do hard things! you are in my prayers!

Soul-Fusion said...

Annie - I often chant that to myself "I can do hard things" or "I've done hard things, I can do this."

lizzie said...

you can do hard things. you have done hard things. and you will do hard things! love you!

Rachel said...

I too laughed at the condom covered ultrasound wand. As I am allergic to latex they had to substitute the sheath with a latex free glove...I should have gotten a picture of it. It was disturbing.

You are an amazing woman. Your posts are always so inspiring.

katie said...

A lot of heavy stuff....I can't even imagine!

Tiffany said...

I love the word sheathe. Very British, I think.

cheryl said...

Found your blog today from Tiffany's though I don't know her but somehow ended up on it today. Thank you for sharing your story--all of it. I've been inspired, encouraged, and uplifted today. Your a very talented writer. I've spent 4 hours already stuck to the computer screen. Sending happy recovery thoughts your way.

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