Frequently Asked Questions

One of the biggest blessings throughout my cancer journey was that we were located in the Austin, Texas area when my diagnosis happened. Austin is a notoriously high young adult population area and is also home to the LIVESTRONG Foundation and several other great oncology treatment, research  and advocacy organizations. I really found that I had a lot of age appropriate resources and information available to me, that many of my counterparts in other areas did not. Access to fertility preservation resources is probably one of the most important issues that differentiates the young adult cancer community from everyone else. For those that do not know, many types of chemotherapy and radiation treatment can negatively affect the body’s reproductive organs in both men and women. Ever since I announced that I was having twins, I received a lot of questions from people about how I got pregnant, how long it took me, whether my twins were fraternal, whether they were “natural,” whether twins run in the family, etc. While a lot of these questions come with the territory of having twins, because I am a cancer survivor and discussed my fertility journey publicly I think it attracts even more questions. Which is why I thought it was the time to revisit the topic of fertility and pregnancy from a cancer survivor’s perspective. I personally do not mind these questions (depending on the setting, use common sense people) because I made a choice to discuss these issues very publicly when I was going through cancer. I also know that people’s intentions are usually not malicious and I also want to make sure people who are going through infertility issues feel like they talk to me and ask me questions if they need to. However, I will preface this by saying most parents of multiples do not feel the same way, so I don’t encourage anyone to bring this up with others unless they have expressed a willingness to discuss it (and there are about 5 million blog posts out there about why you shouldn’t.)

I have discussed my fertility preservation experience quite a bit on my blog, and also spoke about it at a Leukemia & Lymphoma Society fertility forum a couple of years ago (see June 2012 and March 2013.) To recap, I underwent embryo preservation through invitro-fertilization prior to having chemo in June 2013. I also took lupron shots for the remainder of my chemotherapy and radiation treatment, which shut down my ovaries during that time period. Although originally designed for men undergoing treatment for prostate cancer, lupron use in women undergoing cancer treatments actually can help preserve ovarian function. I actually would like to segue here and just say one of the reasons I don’t get into the whole “which disease deserves the most research funding debate” is because of things like this. Many therapies designed for one purpose, can actually have unintended benefits for other purposes as well. The human body is extremely complex and amazing and I won’t pretend like I know better than someone else by saying what research we should and should not support.

Anyway, long story short, lupron worked for me. I was given the “green light” to start trying for a child six months after I ended radiation treatment. From what my oncologists told me, this was a pretty short time-frame and that one year is a more standard recommendation for people in remission from Hodgkin’s Lymphoma to wait before trying to conceive. I was very blessed my diagnosis was caught early, so I had much lower chemotherapy and radiation exposure than the average Hodgkin’s patient, which is why we were able to start trying sooner. However, many people are advised to wait much longer, or even forever, before trying to conceive. How treatment affects fertility is really very dependent on the diagnosis, the treatment received, the length of treatment or even just how that particular individual responds. Also, the damage done to the body during treatment can be so extreme that they physical cannot conceive and even if they are able to conceive, they are advised not to due to a variety of possible health concerns. And some of it is still a mystery, there’s just not a ton of research in this area yet.

I found out I was pregnant about six months after receiving the “green light,” which was just long enough for me to get extremely anxious and concerned. I think its common for survivors to feel like they are waiting for “the other shoe to drop” and I would think to myself that maybe this was it. I wouldn’t be able to get pregnant. The month I found out I was pregnant I went in for a check-up with my fertility specialist who insisted everything looked great. A few days later I found out I was pregnant. When I found out it was twins 10 weeks into my pregnancy, I was incredibly happy but also extremely shocked. As I mentioned in my blog previously, a psychic I went to at Voodoo Fest in 2006 predicted I would have twins and I would occasionally joke about having twins after that, particularly after we went through IVF, but I never genuinely believed it would happen for us. It truly was one of the happiest days of my life. However, I will say amid the joy, there was also a lot of anxiety. One of my first thoughts was “Oh my gosh, now I have two of them to worry about!” You don’t have to be a cancer survivor to know that there is a lot of fear that comes with being pregnant. With twins they pretty much tell you upfront you are at higher risk for almost every possible complication. As a cancer survivor, I was at higher risk for even more complications. Whether it is statistically true or not, I felt like my chances of something going wrong were  infinitely higher than average, and I was extremely scared that something would happen to one or both of my babies, that we would find out my body was unexpectedly damaged from chemo and  wouldn’t be able to handle the stress, and about a thousand other doomsday scenarios ran through my head.

I also felt like I didn’t deserve so many amazing blessings, especially in such a short time period. I really look back on those early months and realize there was a lot of survivor guilt at play. Why am I still alive and others aren’t? Why was I fortunate enough to have great health insurance when others are hundreds of thousands of dollars in debt with medical bills? Why was I blessed enough to pay for IVF AND get pregnant without assistance? How is it fair I got pregnant so soon when others can’t? Why am I so lucky to have TWO healthy babies when so many people can’t have one? How is it fair I am already out of treatment and PREGNANT when people who were diagnosed before me are still in the middle of their fight? Why is it fair that I have a job? And benefits? etc.  There was also anger AT THE GUILT. I just want unadulterated happiness DAMMIT, why do I have to have all of these OTHER FEELINGS swirling around. So many paradoxical emotions existed and its really just hard to explain to someone unless they have been there too. All I can say is I gave it to God, and I got through it. I accepted that this was my journey whether it was fair or not.

At the end of the day, it is the way it is. I had an amazing twin pregnancy. My kids were full-term, healthy, had no nicu-time and I am still healthy. I did not have a stroke, I did not have a heart attack, I did not have a blood clot or preeclampsia or any other thing I was convinced would happen. I was lucky. I was blessed. And I am extremely happy.

So to answer some of those FAQs:

Are they identical or fraternal?

Fraternal.

Are they boys or girls?

Boys.

Did we use fertility assistance?

Obviously this whole post is the answer, but the short answer is no. However, I would not be surprised if the fact that I had been on lupron did  cause me to hyperovulate (release more than one egg) when my ovaries came back online. According to my doctors, my past treatment should not have played into affect, but its one of those things that not a lot of research exists for. My body went through a LOT in a short period of time, and there’s no telling how those experiences may have affected my ovaries. I have run into a lot of people who have had twins without assistance after prior fertility treatments, so it does happen, but current research says there is not a cause and effect relationship.

Do twins run in the family?

For the record, identical twins (according to current research) just happen randomly and do not run in the family. Since I have fraternal twins and they are cause by hyperovulations which can be passed down through the mother’s side of the family, it is possible there is a family connection. At the time I got pregnant, I actually thought that twins did not run in my family. However, recently we found out there were quite a few twins on my great-grandmother’s side of the family and for whatever reason, two other cousins from that branch have also had fraternal twins recently, even though twins haven’t occurred for several generations prior to our’s. So it is possible they “run in the family,” and I would have hyperovulated even if I never had cancer.

What are you going to do with the embryos?

I don’t get this question often, but it is the hardest one to answer. It’s honestly not something I can discuss at this point because we just don’t know yet, and honestly I might never want to discuss it publicly. Will we want more kids, will we not? Will I be able to get pregnant again? All these things remain to be seen. However, for anyone else who is in a similar situation, there is a great blog post on Twiniversity.com that discusses what the typical options are for people who no longer want to use embryos from IVF.

Finally, do you wish you had never done IVF prior to treatment since you got pregnant without assistance?

This is another tough question. Would it be nice to have that money back? Of course, it was a life-changing amount of money. Would it have been better to avoid daily shots, hormone therapy, surgery, etc. Of course. But the answer is no. I do not regret having IVF. For whatever reason, these were the kids I was meant to have at this point in my life, and I probably wouldn’t have had these specific kids if I had not gone through cancer and if I had not done IVF. We had to make a lot of difficult choices in a short amount of time and we did the best we could. I will never regret those choices. I have two amazing kids because of those experiences and I wouldn’t trade them in for the world.

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Two important reasons…

So a lot has happened in the past 20 months or so since my last update. While I always assume that the people reading this are my friends and family and know what is going on in my life, it came to my attention that when someone who blogs about cancer suddenly stops blogging it can be a bit concerning to any readers that aren’t “in the know.” I am very happy to say that I have two very important reasons why I haven’t been updating.

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The announcement for our “two important reasons.”

My husband and I welcomed twin baby boys, Owen & Nathaniel, to the world on April 17, 2014, almost two years to the day of the start of my cancer journey. I found out I was pregnant in August 2013 and that I was expecting twins on October 1, 2013 when I was 10 weeks along. We actually caught the surprise on camera. My sister, Sarah, came with me for my first ultrasound and filmed it for my husband who was on Army field duty that week, so you can watch that beautiful surprise here.

Initially I wasn’t able to blog because I very quickly started exhibiting symptoms of hyperemesis gravidarum (HG), or “that thing Kate Middleton gets when she’s pregnant,” as I usually tell people. Basically I had very severe all-day morning sickness and lost a lot of weight in my first trimester and had to go to the ER a couple of times. It’s more common in multiples pregnancies, however, I don’t want to scare any expecting twin+ moms out there, the odds are still in your favor that you will not have to struggle with it (I can’t find the figure, but I believe I read it occurs in 6 percent of multiples pregnancies vs. 1 percent of singleton pregnancies.)

To help manage the symptoms, I actually took Zofran for a few days, which is a drug most often given to cancer patients undergoing chemotherapy. For whatever reason, possibly because of my history on the drug in the past, Zofran didn’t work well for me. I have heard you can develop tolerance to it over time, so it becomes less effective. However, my OB suggested I take Unisom (normally an over-the-counter sleep aid) along with vitamin B12 at night before bed, which worked wonders (as long as I remembered to take it.)

I preface this by saying that I am not giving out medical advice here, but if you are a cancer fighter, expecting mom or anyone else struggling with nausea, you may want to ask your doctor if Unisom might be a good option for you. I loved that I could run to the drug store and get it over the counter without a prescription and that it was pretty affordable. Also, if you are an expecting mother please be sure to check the labels, the Unisom that has doccylamine succinate as the active ingredient is pregnancy friendly whereas the Unisom with diphenhydramine is not rated safe for the first trimester of pregnancy. I will also say that since this is a normally used as a sleep aid, you will almost certainly be groggy. I was able to reduce my dose to half a pill at night before bed and was functional the next morning with minimal or no nausea. Medicine affects everyone differently though, so you might feel up to driving/going to work/etc. on this medicine, you might not. Just see how it makes you feel and keep communicating with your doctor about what is or isn’t working for you.

Once we found something that helped my HG symptoms, my pregnancy went remarkably well. I delivered at 38 ½ weeks by scheduled C-section due to one of the babies being breached, but never had to be hospitalized or put on bed rest before that. I did have to start working from home and limit my driving and errands about six weeks before giving birth, which is around the time I was measuring the equivalent of a woman pregnant with a singleton at 40 weeks, which is normally full-term and when women pregnant with twins are more likely to go into labor early (which really makes sense.) I also had to go to the doctor starting at that time for twice a week monitoring to make sure I wasn’t going into pre-term labor.

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My belly at 38 weeks. I was measuring somewhere around 44 weeks pregnant at this point.

So, long story short, Owen was born at 12:43 p.m. on April 17, 2014 (Holy Thursday) weighing 7 lbs 7 oz and Nathaniel was born at 12:44 p.m. at 6 lbs 7 oz and we were able to bring them home on April 20, which happened to be Easter Sunday and also my two-year anniversary of the trip to the ER with chest pain that marked the beginning of my cancer journey. No words exist to described how incredibly blessed I feel to change that day forever in my mind from the anniversary of one of the scariest moments in my life, to the day I brought home my baby boys. Having two beautiful, healthy and happy baby boys so soon after cancer treatment was a blessing and privilege I never thought would be mine. I really thank God for all of his blessings in our lives, and I thank everyone for their prayers and support over the rollercoaster of the past few years.

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Owen (left) & Nathaniel (right) at the hospital.

That day was exactly 10 months ago, and Owen & Nathaniel are now crawling, standing, giggling and otherwise normal kids. They already say “Da Da” like its going out of style, and I hear the occasional “Ma Ma.” I expect they will be walking in the next few weeks, but only time will tell. Since that point, I went back to work for about five months and then became a stay-at-home-mom in January, when I left work to relocate with my family to Virginia for my husband’s military career. As I settle into this new life, I am not exactly sure what the future will hold for this blog, but I do have a few more posts up my sleeve related to pregnancy and parenting as a cancer survivor (and otherwise), so stay tuned for more entries!

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I don’t think we are in Texas, anymore!

IVF with Cancer

Since my port placement, I haven’t had a lot of specifically “cancer stuff” happening. Rene and I enjoyed a nice, long weekend for Memorial Day last week. We did our fair share of laying around the house, and Rene’s parents also came down from Waco and we went to the zoo, played Fact or Crap, made a frozen yogurt trip, and ate at a German restaurant (the land of Rene’s & his mother’s births). I was able to go back to work on Tuesday for most of the week, and I have to say I was ready! Although I do enjoy my “cancer uniform” of sweats and over-sized button downs, it was nice to feel well enough to go to work and have somewhat of a routine for a few days.

What brings me to the topic of this post is that while I haven’t had any cancer-specific appointments since my port placement, I have been undergoing fertility treatments. Since I chose to blog so publicly, I waited awhile to make this entry because its such a sensitive topic to so many people, I wasn’t sure if/how I wanted to approach it. I also wanted to have as much information as possible to share with you, in case this blog turns into an early resource for someone who just found out their own diagnosis. Unfortunately, possible infertility is just one of the many harsh realities that both male and female patients have to deal with, and my goal with this blog is to be as open and honest about the experience as possible.

I was extremely fortunate that the possibility of infertility was brought up with me early on. From what I understand, not everyone is given that information beforehand and have since struggled to have children. The pulmonologist was the first doctor I saw after my diagnosis and he made sure to put it on my list of things to ask the oncologist about. The oncologist also made an appointment for me with a fertility specialist the same week I saw her. Fortunately, the fertility outlook for the form of chemo I’ll be taking is fairly positive, however, the chance was still high enough to be a concern. Rene and I always wanted to be parents, and although I’m open to adoption, having biological children isn’t a door I want to risk closing just yet. In addition to chemo, I’ll also be doing radiation during my treatment which also has its own set of risks. Since we can’t predict how well I’ll respond to the initial treatment, it’s always possible they could try something that might be less friendly to fertility as well.

Being in our mid-20s and only having been married about 2 years, Rene & I had never attempted to conceive before. My knowledge of ultrasounds was based on one surface ultrasound I had a couple years ago when someone suspected I had ovarian cysts, and I was told to have a full bladder so they could more easily read the ultrasound. So I went to my first fertility consultation appointment thus, and quickly discovered I would be having a vaginal ultrasound and a full-bladder is actually not a good thing to have. It was uncomfortable for me and the doctors kept complaining that my bladder was “in the way.” Just a head’s up for anyone going in for fertility counseling, but I digress…

Once they determined I was otherwise healthy and fertile, the doctor explained to me that there’s several options:

Egg harvesting: I take hormone shots that encouraged my body to release a large quantity of eggs and then the doctors go in and get them. Afterward they cryofreeze them until Rene & I are ready to have a baby, and then they thaw them, fertilize them and implant them.

In vitro fertilization (IVF): Egg harvesting + using sperm to actually fertilize the eggs and create embryos. The embryos are then frozen until we’re ready for them and then they’re implanted.

Lupron: A monthly shot that basically shuts down the ovaries. Studies indicate that women who are on lupron during treatment have a higher chance of fertility afterward.

My doctor recommended IVF because its the most reliable method, and also using lupron throughout my treatment. If any other Grey’s Anatomy fans recall, Izzy & Alex did IVF a couple of seasons ago for the same reason. (Maybe they’ll bring Izzy back for this potential plot line for the future?) Although egg harvesting and storage is now becoming more available, there’s just not a lot of research on how well those eggs fertilize after being cryofrozen for a time. A lot of women are in the process of freezing eggs, but not a lot of women have retrieved them yet. The research they do have indicates that embryos are more likely to result in viable  pregnancies than the eggs being fertilized after being frozen. However, a lot of people do choose egg harvesting because its more affordable and because many women are single and would rather save their egg’s for Prince Charming’s sperm rather than donor sperm. Whatever the situation, people choose different methods for different reasons.

I’d love to say we did a lot of research, soul searching and praying before making our decision, but that just wasn’t the case. Given the fact that I a) have cancer, and b) was about to start my menstrual cycle, we had to make a decision extremely quickly and we opted for IVF. It just felt like the “right” path for us. To allude to Hunger Games, the odds have NOT been in my favor thus far in the sense that I’ve been diagnosed with cancer at 25 period. We always wanted to be parents and I wanted to increase our odds at having little Rene’s and Laura’s in the future as much as possible. Unfortunately, IVF is not a cheap route to take and right now most American insurance companies don’t cover it– including TRICARE– which is the military insurance that I have because Rene is active-duty. IVF is generally between $10-15K per treatment, and our experience has fallen into that. Luckily, TRICARE will cover everything else related to my cancer treatment and we decided it was a cost that was worth it for us.

The nurse did refer me to several charity programs out there for people who are undergoing fertility treatments due to cancer though, so I definitely recommend anyone in a similar situation to check them out. Lance Armstrong’s LiveStrong Foundation (which happens to be based locally in Austin, TX) has a whole program dedicated to fertility called FertileHope.org. FertileHope works by offering a list of participating clinics that offer discounted fertility services. In addition to the FertileHope discount, we also qualified for a military discount, and the estimate we received for IVF at the Austin-area clinic was around $7,500. Coincidentally, my friend (Jersey City) Amy had connected me with her friend Victoria St. Martin who went through IVF last year due to breast cancer. She did IVF through another charitable program, the Sher Institute (HaveABaby.com) and referred me to their participating clinic in Dallas (about 3.5 hours away). If you’re interested in learning more about her journey, you can visit her website at breastcancerat30.com. She’s been an amazing resource for me throughout this experience.

The quote we received from the Dallas clinic was about $5,500. Unfortunately, the charitable programs weren’t able to offer long-term storage of the embryos and future implantation was going to be at least $3,000. In the end, we opted to stay with our physician at our current healthcare system since we already had a relationship built with them and they were able to offer us a payment plan on a package that included harvesting, storage and future implantation for about the same total price. We also were not up to driving to and from Dallas due to cost and time constraints. So although it was more money upfront, it will probably pay off for us in the future and be more convenient since we won’t have to travel as far. We still have to travel about 45 minutes north to our healthcare system’s headquarters. Again, this is just the route Rene & I chose, it’s really specific to the situation. I would say that if I had been single or didn’t have TRICARE to cover my additional expenses, or lived in Dallas, etc. I probably would have gone with the charitable organizations. I think it also was a great option for those interested in egg harvesting, which was around $1,000 or less. The additional resources page on FertileHope was also a tremendous help, http://www.fertilehope.org/financial-assistance/additional-programs.cfm. They also offer information about options for men going through cancer treatment as well.

Before I even left the office at my first consultation, we started the IVF process. They decided to go ahead and give me my first lupron shot. As mentioned earlier, women can receive this shot to help preserve fertility. Lupron also serves a purpose in IVF because it prevents early ovulation. The doctor decided to go ahead and give me the lupron shot because even if we opted against IVF, it would be good to have a lupron shot in my system for when I started chemo. The second step was my doctor personally wrote a letter himself to my husband’s commanding officer. The essential message of the letter was, “I need Rene’s sperm!” Not a topic your doctor usually has to discuss with your husband’s boss, but there’s the Army life for you. Rene was still in Kuwait at the time, and his leadership had been waiting for a treatment plan for my cancer before they decided if/when to send Rene home from deployment early. Luckily, the letter worked its magic and Rene was back home within 48 hours! I don’t think I’ve expressed enough gratitude to the Army for this, so thank you thank you thank you!

The next step was waiting for my period to start which was a couple days later (TMI, I know). They had my fertility meds shipped to me the next day. The meds really have been an adventure unto themselves. The primary med is Bravelle. Bravelle comes in a powder form that we then have to mix together with sodium chloride and administer the shot ourselves. Upon learning this, our first thought was, “Uhh…… are we qualified to do this?” FreedomPharmacy also sent us a how-to video that we watched the night before (and rewatched the day of the first shot) to help calm our nerves. Luckily I had Victoria as a resource to give me tips. We also called the nurse twice for reassurance that small air bubbles wouldn’t kill me, etc. The Bravelle comes in boxes with five vials to take a day. Fortunately, the nurse informed that I didn’t have to take five separate shots a day, but can mix the vials together for two shots a day. I take 150 iu (two vials) in the morning, and 225 iu (three vials) in the evening for a period of 10 days. They can either go in the fatty tissue of the stomach, or the thighs. My friend Victoria swears by the thigh, but I found that the tummy was easier. So again, it’s just a situational thing. Victoria found it easier to do the mixing herself and have her boyfriend do the shot. Since Rene felt qualified given his experience of administering a grand total of one IV for deployment training, we had initially planned to take this route as well. However, when push came to shove I preferred to do the shot myself. I liked having control of where it was going and when! I started last Thursday and today is my last day. Tonight at exactly 8 p.m. I have to give myself a shot of Novarel (HCG), which basically will tell my body its time to ovulate. I’m pretty intimidated by it as the needle is quite a bit longer, and I’ll have to use more solution, which means it’ll take longer to inject. Those milliseconds really seem like a long time when you’re giving yourself a shot!

My egg retrieval will be Monday morning. I’ll know that day how many eggs they’re able to retrieve, and by the end of the week we’ll know how many fertilized. Unfortunately, IVF is not an exact science. They might not be able to get every egg that is released, and not every egg will fertilize, and not every embryo will implant, etc. There’s also the tragic situation that I’ll ovulate early and they won’t be able to get any eggs. As my doctor explains, ovulation is one of mother nature’s greatest instincts and she doesn’t always like it when we try to mess around with her. However, all my tests and ultrasounds (of which I’ve had many the past two weeks), have been positive, so I’m very hopeful by this time next week I’ll be able to tell you how many embryos we have. We also made the decision that any embryos that we have that go unused will be donated to other couples. Although it will be weird to have biological children out there that we don’t even know about, I’d be happy knowing we may have been able to help another couple have a family. Again, it’s a personal decision people going through IVF might have to consider.

Interestingly. when I went to Voodoo Fest in New Orleans in 2006, a psychic told me I would have a set of fraternal boy/girl twins. At the time I rolled my eyes because no one in my family has ever had twins to my knowledge, but now I’m seeing how it might be a possibility since IVF increases the chance of multiples.

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Thanks to Facebook, I still have a photo of my 19-year-old self paying apt attention to the psychic who told me I would one day have twins at the 2006 Voodoo Festival in New Orleans.

Victoria was also told she would have twins by a different psychic. Maybe this is a go-to prediction psychics give young women? Who knows. The odds of that prediction being correct for most women are certainly not in their favor! Only time will tell I guess!