Wow, I promised myself I’d be a lot better about updating this thing, but I do have a legitimate excuse for my lack of entries! It was finals week for my college and I am supposed to graduate today, actually. So, when I had my initial consult with the oncologist, I was told that I could not physically return to school after I started getting chemo because I would be too at risk for developing an infection around huge populations of people. I have been physically out of school for a few weeks now due to the chemo and lack of white blood cells to keep me from ending up in the hospital for catching a cold. Man, I’ve got to learn how to stop rambling. ANYWAY. I have pretty much had to crash course and push through an ish-ton of take home assignments and papers in order to complete my last three courses and get my diploma. It was a rough road, but I did it and my name is in the commencement booklet, so it’s official! I am finally a college graduate!!! Cancer can suck it, because, in spite of all this hitting so hard and fast in the last month, I DID IT ANYWAY! So, please forgive my lack of enlightenment here!
Now, where were we? Oh, yes! My ice babies. As some of you may know, chemotherapy has the potential side effect of infertility. While my doctor informed me that based on my age and situation, there was a very good likelihood that I would still be able to have children the old fashioned way, there was still a chance that I wouldn’t. Because I have not yet had a family, aside from my two fur babies, I felt the need to proactively protect my right to do so. My luck hasn’t been so great, lately, and I didn’t want to take the chance of not being able to have my own children someday.
I had three weeks before I was going to start chemotherapy, so time was of the absolute essence. With a cancer diagnosis, you often don’t get a lot of the “sit and think things through” time that would allow for such huge decisions to be aptly researched and planned. You pretty much come up with an action plan and get to goin’ on it. In terms of preserving my fertility, it was definitely go time. Despite the whirlwind of emotions on the day of my diagnosis, I had to get on the ball to schedule numerous tests (MRI, PET CT, MUGA, etc) and to find a fertility clinic to get through one round of IVF and egg retrieval. This was Friday. By the next Wednesday, I had an appointment at the fertility clinic, an initial consultation with my oncologist, PET CT, and MUGA scan all set up and ready to go.
For those who aren’t familiar with the process, egg retrieval and freezing is an expensive, “experimental” process. For people like me, who pretty much have to scrape by on pennies after the bills get paid, the thought of having to pay for something so massive that insurance won’t cover is DAUNTING. You responsible for the payment of the treatments, almost daily office visits, medications, and the costs of the surgical procedure itself. When all of this adds up, the bill can be upwards of $10,000, depending on where you have things done and how much you have done. I knew damn well I’d never be able to afford the procedure on my own. Luckily, the fertility clinic I’d chosen to work with had grant money for women like me who were about to embark on the journey of cancer treatment.
I was really, really, REALLY incredibly lucky to have been approved for grants from LIVESTRONG’s Sharing Hope program as well as a grant from the clinic itself to help reduce my out of pocket costs. Before you go through with this, even if time is limited, ALWAYS ask if these options are available. I received the maximum grant money available from both programs, which reduced my bill over 60%. It was still expensive, but there was no way I’d have been able to do it without their assistance. And this is so important! Also, check with your insurance company to see how much they would be willing to cover. I was surprised that with my Catholic hospital insurance, which doesn’t even cover birth control, I got about $900 taken off my bill. It doesn’t hurt to ask and you SHOULD!
That Wednesday following diagnosis, I met with my oncologist for the first time, and had her fill out the paperwork for the Sharing Hope program. You must have your oncologist fill out a portion of the paperwork documenting your need for the procedure. After my appointment there, my mother and I drove across the city to the hospital housing the fertility clinic.
I met with the doctor there, who gave me a quick overview of everything that was going to happen in terms of the procedure. Basically, you have to give yourself shots of hormones everyday to make the eggs mature faster. If you don’t like needles or the idea of sticking yourself in the stomach everyday, you’re going to have to get over it for the greater good of having that baby someday. In addition to the daily doses of hormones, there would be bloodwork drawn every office visit and vaginal ultrasounds to check on the ovaries and egg production through various aspects of the cycle. The clock was literally ticking on my ovaries, so, after he gave me the run down, it was ultrasound time. Jeez, that’s probably the fastest I’ve ever taken my pants off for some guy I don’t even know.
The initial ultrasound showed that I had a good uterus and a good set of ovaries to get the job done. He was in there taking pictures for not even five minutes before pulling the probe, thanking me, and telling me to have a good day before I was whisked off to have my blood drawn. He did, however, apologize that things were moving so fast and that, under different conditions, they didn’t usually rush things so much with patients. Hey, whatever it takes to save teh babiez, right?
After the bloodwork, I met with my case nurse and the financial assistance navigator. I’m telling you, please take someone with you for this first appointment. If it’s anything like mine was, your head will be spinning and you will walk out of there completely confused. My mom took notes the whole time, thank goodness, or I’d have been totally lost. The nurse explained the medications to me and how I would need to give them to myself. She also explained that there would be a “trigger shot” of HCG two days before the egg retrieval that would need to be intramuscularly injected — basically, you take a big needle in your butt muscle (pardon my lack of medical terminology, I’m off the clock).
She gave me my first dose of the hormones in the office and showed me how I would need to do it at home. My boyfriend was in Atlanta working with his band during this time, so it was up to me to make sure I did this thing right on my own.
In addition to the injectable hormones, when you have breast cancer that is driven by hormones (in my case, ER+/PR+, HER2-), you have to take something to prevent the cancer from having a field day and growing. In my case, I was given Femara and instructed to take 5mg every day after dosing myself with the hormones. I thought they were going to give me Tamoxifen, which I’m pretty sure is the norm, but I have a sulfa allergy (I think Tamoxifen has sulfa, right?).
The next day, I get word that my estradiol levels are too low and that I need to bump up my dosage of hormones. I was so freaked out the first time I actually had to dose myself. I ended up not sticking the needle into my stomach all the way and got a huge welt, which made me freak out even more and call the on call nurse. Apparently, I was being overly meticulous (what else is new?) about doing something that I had no idea how to do and, out of anxiety, forgot to change the needle on the end of the syringe from the 1.5” inch needle to the .5” inch needle. FAIL.
I was originally using Menopur and the Gonal F Pen for my IVF (minus the F) treatments. For Menopur, you have to mix x number of vials of the powdered medication with a vial of sterile water and then inject. The Gonal F pen has dosage setting for which you simply dial to the given dosage number and inject, as well. I had to watch youtube videos to get the Menopur method down pat because it was a little tricky at first for me. I really recommend this one: http://www.youtube.com/watch?v=XZ1ojMfl6lk
Throughout this whole process, be prepared to be poked and prodded a lot. I needed to get bloodwork almost everyday, and vaginal ultrasounds every three to four days. I also had some bruising around the injection areas. If you’re as shy about your body as I am, you learn to get over it quickly. I’m pretty sure that practically everyone in the Cancer Center at my place of employment/treatment has seen my boobs at this point. I have no shame. You kind of can’t with something this huge looming over you — and, no, I’m not referring to my boobs there, they are teeny tiny!
By Sunday, I was already progressing quite a bit. When they did the ultrasound, you could see the eggs on the screen, a bunch of little black balls starting to mature. My hormone levels had gone up and my dosing had fluctuated a bit since then. Every day, the nurse would call with my results and dosage for the evening. Because I have ridiculous work hours (4am-12:30pm), making my appointments for clinic visits was a little bit difficult. I was lucky enough that my employer worked with me through this, and was willing to allow me to leave in the middle of my shift for 7am blood draws/ultrasounds, and to make up missed time by working later or earlier past my scheduled shift. If you have to do something like this, always talk to them. I was scared to at first because I was afraid of losing my job, but if you keep them up to speed on everything and make yourself flexible (when at all possible), they can really be of great help and everyone can win.
By the middle of the next week, I had about 16 eggs that looked good and viable for retrieval, but my hormone levels hadn’t quite hit the mark indicating that I was ready. My dosage got bumped and by Saturday, I had even more eggs that were ready to go. By the point, I’d become somewhat of an IVF shot-giving aficionado. I could mix my medications and stab myself like a pro.
After my ultrasound and bloodwork on that Saturday (this is 10 days after my first appointment at the clinic), I got the call that it was go time and that I would need to trigger that night. My egg retrieval would be on Monday. Because the trigger shot is an intramuscular injection, it’s not really something I could do myself. I mean, I could, but it would be awkward and difficult. So, because my boyfriend was out of town at the time, I asked my mom to stab me in the but with a 1.5” inch needle. Since neither of us had done this before, I went back onto youtube and found this: http://youtu.be/mZ0C-2ZWkMw
and some other crazy Russian video on youtube that shows a girl (presumably?) getting the IM shot in her buttock. I won’t post that one, but it’s not hard to find.
So, when the time came, I went to mix the solution. I had a moment of panic because at first, the plunger wasn’t drawing the solution up, and I started crying. It was the serious hormone levels in me, I swear! I finally pulled myself together and tried again, drawing a little more slowly, and it worked. I lay down on my mother’s sofa and pulled my pants down over my butt so she could clean the site and then inject the HCG. When she did it, I didn’t really feel anything, but shortly afterwards, my butt was so sore! It hurt to sit or move or anything to that area for a few days.
The next morning, I had bloodwork to confirm that the trigger shot had been effective, and it was! So, Monday morning, I got up, took a shower, and went to the hospital with my mom for the egg retrieval and freezing. I was being a smart ass the whole time, but a very cooperative patient. I changed into the lovely hospital gown and swaggerlicious yellow hospital socks. The nurse came in and took my vitals. I then met with the doctor who would be performing the procedure, the other doctor at the clinic. They started my IV and gave me some fluids. Within twenty minutes, they escorted me to the operating room and had me get up onto a table that had a depression for my bottom. After getting the anesthesia, the last thing I remember was being strapped to the table and the doctor and nurse assistant lifting my legs into these surgical stirrup straps. It was like a bad bondage film. Not that I know what happens in those…
I woke up an hour later in the recovery room and it seriously felt like someone had gone to town on my uterus with a baseball bat. Other than that, though, I felt fine, just a little groggy from the anesthesia wearing off. The first thing I did when I got up was to check my phone and to get on eBay to win an auction. I started being a smart ass and saying that all I wanted was a cheese steak and a nap. The doctor came to see me briefly and let me know that they retrieved 37 mature eggs during my procedure. They would let me know within the next day how many successfully made it through cryopreservation.
After the procedure, the medical staff made me use the rest room before being allowed to be discharged. My mom pulled the car to the front of the hospital and they wheeled me out. I must say, it really was painful for me for the next few days. I thought the waddling would stop after the eggs were retrieved, but it continued until the weekend. I was really bloated and sore for a few days after the procedure, but this was supposedly normal. My mom brought me a Philly Cheese Steakless from the local vegan/vegetarian restaurant afterwards and it was the best thing ever.
The next day, I tried to go to work, but it was a disaster. I was in so much pain that it took me about 20 minutes to get from the parking garage to the lab. After working for five hours, I went home and rested, which is what I should have done in the first place. I’m starting to realize, after going through so many things, that I have to consider myself first and my job second. After all, if I’m dead, the job doesn’t matter, does it?
The nurse called me that afternoon and informed me that of the 37 eggs retrieved, 34 of them made it successfully to cryopreservation. Hooray! I could be Octo-Mom like 4 times!
Ultimately, even though it was scary and ridiculously fast paced, and my head was spinning with confusion, I am really glad that I went through with this. If I happen to lose my fertility through the course of my cancer treatment, it is a huge relief to know that I still have a safety net to have children someday. If you are going through similar things and want to have a family someday, I really recommend reviewing this option — as quickly as possible, of course! I can’t wait to take those lil’ bastards to the aquarium or the zoo and watch Teletubbies and Barney. Seriously. It’s something I am joyfully looking forward to in the years to come after I am cleared of this stupid cancer. It’s going to be awesome.
Tune in for next time’s story hour…I’ll try not to be so prolonged in my posting now that I don’t have all this school stuff to deal with anymore!
This is a picture of me taking post-egg retrieval. Still a smart ass!