(Written July 2016-September 2016; Rewritten October 2016-November 2016; Revised December 6, 2016) Part 1 - Introduction and Fertility IssuesWhen I was little, I enjoyed hunting for, finding, and collecting things. Perhaps this is appropriate given my childhood fascination with Easter egg hunting. I felt a thrill in the mystery of searching for eggs, excitement in the discovery, clever for solving a mystery, and satisfaction of achievement with colorful eggs in my basket. In the months before I started the “egg retrieval” process, I kept associating it with “egg harvest.” I didn’t think of myself as a hen and someone else was gathering my eggs (which now that I think about it, is creepily fitting…) but more like I imagined the little girl version of myself gathering eggs during an Easter egg hunt and putting as many eggs as I can find into my basket. Perhaps harvesting with a sense of control? That’s what I did with the egg freezing: I put as many eggs as I could into a “basket” for later. On my mother’s side of the family, there are two women who have fertility issues, one in each generation before mine. My fertility issues could be genetic-related or chemotherapy-caused. The decision to explore my fertility issues and eventual egg retrieval and freezing were difficult, not just for monetary reasons, but for my own emotional well-being. Too many possibilities and uncertainties were at stake, including myself and my perceptions of myself in the future and the past. The majority of my friends have children and whereas I feel fortunate to know my friends’ children, it doesn’t ease the feeling of baby envy (or baby fever). I have been to enough baby showers that I’m on the mailing lists for Buy Buy Baby, Babies R Us, and Target for coupons. Anyone need coupons for diapers? For this reason (society reminding me that my biological clock is ticking) I have a love-hate relationship with shopping for my friends’ children and baby showers. For one, the clothes are too darn adorable and I find myself contemplating what I would register for that’s not gender-specific. Shopping for books is worse because I not only imagine my friends reading to their children, but also I add titles to a mental list of books I’d read to my own future-if-any children. On the other hand, if I count students I’ve taught, I’m in the thousands and every year at least one student mistakenly calls me “mom”. In some ways it is comforting to know that I have the mother instinct (with my students or my friends’ kids), but even after I investigated my fertility issues, I still envy my friends who have children. In any case, before I begin with the gory details of my (in)fertility adventures, allow me to explain a few things (in my own words rather than medical terms): 1. IVF stands for In Vitro Fertilization and is assisted reproductive technology (ART). I completed the egg-retrieval-freezing part of this process. 2. “Fertility issues” can mean many things depending upon the individual woman or man. This does not necessarily mean the same thing as “infertility.” Really, I interpret this as “complications”. Sometimes complications can benefit from assistance, while some things can’t be fixed. Fertility issues could include ease (or difficulty) of conception, functional (or dysfunctional) ovaries, hormone levels, genetic make-up… My uterus, for example, is slightly tilted (which I’ve known for a while) and completely unrelated to chemo. Fertility doctors now can conduct a preliminary blood test to measure AMH levels in a woman’s blood (anti-mullerian hormones) which are produced by follicles (eggs) in the ovaries. How I interpret this is the AMH test predicts how fertile a woman is based on her age (and a predicted age of menopause). Depending on how the results turn out, low AMH levels could be classified as “fertility issues.” It is a predictor of likelihood of fertility and conception. Endocrinologists use the predictor to decide how to proceed. The word “prediction” does not always mean “this will really happen.” If my AMH level had been 1.0 (65th percentile of my age range), I could wait until age thirty seven to freeze my eggs. In reality, at age thirty three, my AMH level was .68 which sounds decent but is really in the 45th percentile for my age range (and I fall into the “prediction” of early menopause). Yay for chemo! Anyway, this put me in a tough position: to freeze or not to freeze my eggs because the longer I wait, the less likely the egg-retrieval would be successful. This doesn’t mean that I absolutely can’t have kids naturally in the future; my body isn’t producing as many eggs as it should for my age. Conception is possible but it could be easy or challenging. My fertility doctor showed me data from his clinic of women with similar AMH levels as me and on the one hand he was going to suggest not to bother freezing my eggs except that with the clinic’s results, it seemed likely that I could freeze at least a few of my eggs (aiming for six to ten). I made the decision that if I could get a cancer organization’s funding, I would freeze my eggs. (Funding from a cancer organization would cut the cost in half… because none of the IVF process is covered by insurance). If my AMH level had been at least 1.0 (out of 4.0), ten to twenty follicles could be retrieved. At .68, six to ten follicles was the target. A risk? After my first ultrasound, it turns out my left ovary was “not visible.” It grew follicles later in the process, but I wasn’t surprised that it was already shrinking. Yay chemo! Another sign that I really do have fertility issues! 3. The egg retrieval part of the IVF process involves stimulating the body with hormones during one menstrual cycle. The monetary cost of the procedure, doctors’ appointments, medication, etc. only covers one cycle. 4. Egg freezing is an expensive insurance policy but not a guarantee. Eggs sometimes don’t survive the freezing process. Another risk to take. Pre-Retrieval TimelineA few more things to keep in mind: Livestrong.org funds fertility aid for all cancer survivors and patients. The organization negotiates the price with the fertility clinic and then funds and ships all the medication! Livestrong is awesome! Other organizations only cover newly diagnosed cancer patients and survivors (not childhood cancer survivors). That is, playing the cancer-card isn’t always easy. Probably 2001-2003-ish My oncologist updated my “cheat sheet” of potential health risks to include “fertility issues.” October 2015 I worked up the nerve to ask my regular family doctor for fertility recommendations and she said to ask my oncologist. November 2015 My oncologist recommended a fertility doctor and a specific clinic. March 2015 I was so nervous about investigating potential fertility issues, that it took me five months to summon up the courage to finally call and make an appointment at the fertility clinic for April. April 2016 My initial meeting with the fertility doctor and the AMH level blood test. I got the results back within a week but because I sort of “blacked out” after hearing the results (not fainting, but tuned out the world – into blackness) it was another month before I met with the doctor. We emailed in the meantime. May 2016 I met with the fertility doctor again and we discussed my options and what my AMH levels mean for egg retrieval/freezing and potential success. This is when I said I would look into cancer survivor organizations to help with the funding of this process. June 2016 The American Cancer Society and the Leukemia and Lymphoma Society both recommend Livestrong (livestrong.org) for fertility funding. Filling out the Livestrong application was only complicated because my oncologist kept forgetting to do his part. Otherwise, Livestrong arranged for the medications (FREE) to be shipped overnight (FREE). The medications come in a freezer bag (inside the box) because they have to be refrigerated. Let me also just say that FedEx is a headache (so are medication companies). July 2016 About a month from my baseline ultrasound, my endocrinologist didn’t order all of the medications initially so we (the nurse and I) had to order more medications. The class I took with the nurse was really overwhelming and it was a shame I panicked through most of it because this was when she showed me how to do the injections. I cried while filling out the paperwork I was so scared. I think that was one of the few times during this process I may have had my-version of a panic attack (this is when having someone there would have been nice…). I panicked about giving myself injections before understanding that I had to mix medications, which made me panic more. I also lined up my mother and a backup college BFF to be there during the actual procedure (aka: asking two people to clear their mornings for a week… a month and a half in advance). August 9-11, 2016 The weeks leading up to August 9, I was instructed to continuously take my birth control pills, skipping the placeboes. August 9 was the last pill before the process. The baseline ultrasound was actually pretty neat. I saw the inside of my uterus on the screen. My right ovary was there but my left ovary was too small to see… because it was shrinking. And I had a fibroid (don’t panic, it’s not cancerous). I asked a ton of questions and practiced explaining the medication process to the nurse. I also called and emailed one of the nurses to double and triple check the process. I listed the steps via email and I explained the process over the phone to the nurse. I watched and re-watched the instructional videos. And I still second-guessed myself. All in all, it took all summer to iron-out and plan this procedure. It ended the week of teacher workdays before the school year started. I had to take a day off for the retrieval “surgery”. Part 2 - Hormone InjectionsDisclaimer: So, much of this may not be technically scientifically correct, but how I understood the process based on what happened to me… That is to say, I’m not perfect, but if I did get something wrong, please let me know. I just want to be thorough. My Theme Songs: “Frozen Lullaby” and “Such a Loser” by Garfunkel and Oates Timeline DatesBaseline Ultrasound: Tuesday, August 9, 2016 Day 1 of injections: Saturday, August 14, 2016 Day 11 of injections: Tuesday, August 23, 2016 Day 12 (Trigger Injections): Wednesday, August 24, 2016 Retrieval Day: Friday, August 26, 2016 The DrugsGeneral Purpose: to jump-start estrogen and fertility hormones, allowing follicles to grow Baseline Ultrasound Day (5 days before Day 1): last birth control pill (oral) Days 1-4: 300 IU Gonal F and two vials of Menopur powder (injection); 2 Letrozole pills (oral) Day 5: 375 IU Gonal F and two vials of Menopur powder (injection); 2 Letrozole pills (oral) Days 6-8: 375 IU Gonal F and two vials of Menopur powder (injection) Days 9-11: Centrotide syringe/vial, 375 IU Gonal F, two vials of Menopur powder (injection) Day 12: Two pre-filled syringes of Ovidrel (trigger injections) Day 13: Two anti-infection pills (oral) Day 14: Propofol (IV during retrieval surgery); heavy-duty pain killer (oral), one anti-infection pill (oral) Days 15-17: one anti-infection pill (oral); extra strength Tylenol as needed (oral) The Side Effects (as interpreted by me)Letrozole: causes insomnia (and potential nausea and dizziness); I experienced the insomnia because I was trying to avoid the other side effects so I took it before bed… I started taking it earlier (with food) by the last day of the prescribed dose Gonal F, Menopur, Ovidrel: pregnancy hormonal symptoms Centrotide: hive-like swelling, itchy, red rash that spreads across the skin around and past the injected area (reduced after the first injection); overly-dramatic pregnancy hormonal symptoms Ovidrel: overly-dramatic pregnancy hormonal symptoms What I noticed the most: mood swings, hot flashes, headache, heavier-than-usual menstrual bleeding (the first few days), nausea, dizziness, arm and leg cramps, abdominal cramps and pain, weight gain (all over my body), frequent need to urinate. The Mood Swings (as experienced by me)Annoyance (mostly at local political ads on TV), sadness (crying), dejected, happy crying (the Olympics, Wait, Wait, Don’t Tell Me), panic and anxiety (finding people to help me each night, doing the injections, and identifying the side effects – especially the ones I didn’t experience but thought I did), frustration, anger (Day 10: unlike any anger I’ve ever felt before: I turned into a demon or fire-breathing dragon… and controlling it was the worst! I went from my ultrasound appointment straight to work and fumed all day internally and fell apart at when I got home. Really it wasn’t just tightness in my chest like anxiety, it was a full-blown explosion that spread all over my body. I’ve never felt anger in my fingertips or toenails, but it happened then). General Tips (for you, reader, or for my future self |
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Sarah L. H. White Titles Index2016
1. Symbolism of Blog Creation
2. I Think I Have a Brain Tumor and Other (Ir)rational Worries About My Health 3. Past and Future Selves 4. To My Future Husband 5. Don't Panic! I'm Alone... It's Normal? 6. Identity? 7. New Worries 8. Time Keeps on Slipping... into Chemo Brain 9. Fears... and a Scary Movie 10. Be Calm, Be Brave, It'll Be Okay 11. A Frozen Lullaby: My Not-So-Brief Journal of Egg Retrieval and Freezing 12. Superpowers and Fears: Us Vs. Cancer 13. Having Cancer: The 30th Anniversary of My Diagnosis 2017
14. Birthdays
15. Blog Anniversary: Year One 16. Death: Coping with Grief (and Fear) 17. Don't Panic and Always Carry a Towel: A Study in Anxiety Through an Insomniac's Stream-of-Consciousness 18. Holiday Letter 2018
19. Resumé
20. My Childhood Misconception of Why We Didn't Own a Microwave: Thoughts on Radiation 21. The Science of Scheduling Appointments 22. Armageddon: An Ode to Doctors 23. Brain Tumors and Hurricanes 24. (Ir)Rational Attempts at Finding Closure 2019
25. Good News, Bad News
26. The Extroverted Introvert's Guide to Social Interactions with Chemo Brain - or How to Burn Bridges and Alienate People 27. I'm a Survivor: 30th Anniversary Post-Treatment 28. Summertime Happy-Sadness 29. Let's Talk About Therapy 30. Not-so-Good News, Not-so-Bad News 31. Having Cancer: Then and Now (1994) 32. Dream of Becoming "Crazy Cat Lady" Foiled by Allergies 33. V is for VAMPire 34. Are You Strong Enough to be My Man? 35. Put a Band-Aid On It 2020
36. Vision 2020, or Let it Go
37. Control Freak 38. Somewhere Between the Introvert's Dream and the Hypochondriac's Nightmare 39. Alone Together 40. Finding Love: Dating in the Time of a Pandemic 41. Cosmic Irony Strikes Again 42. Insert Clever Title Here: Brain Surgery #1 43. It Could Be Worse 2021
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