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.

Chemo Eve

So I admit I was overly cocky about the Novarel (HCG) shot. If you recall, I had said I would give the HCG shot to myself at “exactly 8 p.m.” on Saturday night. That didn’t quite happen. I had it prepped and all ready to go. I watched the how-to video several times, I even invited my friend (Pastor) Amy over for moral support. And I just couldn’t go through with it. At one point I had gone so far as to get the needle up to my skin, but since it was an intramusucal injection in my hiney as opposed to be subcutaneous (fatty) injections in my tummy that I was used to, the needle basically just bounced back. Despite watching the how-to video where it talks about using a fast “dart-like” motion, I was convinced I could just slowly put the needle in like I had done with my other shots. Knowing you have to inject yourself with a 1.5 inch needle and actually looking at it (and being in a very unnatural position while doing it) is all very different than watching the how-to video.

So Amy was a gem and started making phone calls to all the healthcare professionals she knew in the area. About an hour and a half later, she drove me to Florence (a town about 25 minutes away) to meet up with our friend, Jessica. Jessica is a nurse and was a friend from our former church in Copperas Cove in the Fort Hood-area. She basically had me drop trow in a church parking lot, while Amy stood guard, and was done in about two seconds. I could barely even feel it at all, but she was nice enough not to make me feel like a huge baby for not giving myself the injection. We were convinced we would get arrested for drug dealing or something, but luckily our late night church parking lot injection went unnoticed by the people of Florence.

I proceeded to freak out because at this point the shot was about 2 hours later than it was supposed to be, but I was convinced by the on-call nurses and my friend, Victoria, that it would be fine and wouldn’t affect the egg retrieval on Monday, and luckily it did not. All in all, the egg retrieval went pretty well. We had to be in day surgery by 6:30 a.m., so we opted to stay in Temple the night before so we didn’t have to worry about oversleeping, potentially hitting I-35 traffic, etc. I’m all about limiting stress as much as possible. Unfortunately TRICARE doesn’t reimburse travel unless its 100+ from your residence and the Temple hospital is only 48 miles away, but c’est la vie. I won’t complain since TRICARE covers so much compared to other insurances.

Thanks to everyone’s comments, I was very vocal about having adhesive allergies and they gave me paper tape this time instead of the regular bandages. I didn’t have any issues from the bandages this time, thankfully. They did, unfortunately, stick the IV in my hand. However, since I was very vocal about my distaste for hand IVs, the nurse numbed be up really well beforehand. So other than the initial shot, it wasn’t too bad. I’m learning that being vocal pays off!

They doped me up for this procedure more than any other. From the initial shot in the IV, I started feeling dizzy. I remember them wheeling me into the operating room and chatting with the nurses. I remember that one of them told me she was pregnant with twins, so I shared my story about the psychic and gave her baby name suggestions (Aidan spelled backwards is Nadia if anyone is interested). I remember moving off the gurney to the operating table and after that I was completely out. I woke up in the recovery room seemingly seconds later. After waking up, I continued to lose time quite a bit. I kept thinking I had gone back to sleep, and Rene would tell me that no, I was just talking to him 30 seconds before that. It was pretty humorous. The doctor came in a little while after the procedure and told me they had gotten 17 eggs! That I definitely remember.

On Tuesday, the embryologist called to tell me we had 7 embryos. Today we had 9, so that was very exciting news! According to the embryologist they were “tarty for the party!” It’s very likely we’ll lose a few over the next couple of days but that’s definitely a good number to start off with. Much more than we had hoped or dreamed we would have.

The recovery hasn’t been too bad. I was a nauseated the first day, but that was might have been my fault since I was overly confident in the anti-nausea medicine and decided to eat left over Chinese food. Again, I’m still learning. Now that we can cross IVF off our to-do list, I went to the dentist for my 6 month check up. Unfortunately you can’t have dental work done while you’re on chemo due to infection risk, so I wanted to get a good cleaning in beforehand. I also met with my oncologist to touch base yesterday. My chemo starts on Thursday and I think both Rene and I benefited from having a talk with her. Since we’d been so consumed with IVF, I hadn’t seen her since my bone marrow biopsy more than 2 weeks before, and Rene had never met her.

One of the most frustrating things about chemo is that I have to give up all raw foods, including fruits and vegetables. I can still have them canned, frozen, or cooked, but the risk for bacterial infection is too high with raw. That also means I can’t have any sushi, which is basically an entire food group in our family’s diet. So as part of a pre-Chemo celebration, Rene took me to Chik-Fil-A yesterday so I could enjoy my usual grilled chicken sandwich complete with lettuce and tomato one last time before chemo. We then went to Walmart to stock up on some chemo friendly snacks. That proved a bit too ambitious for me, and I got pretty cramped up on that trip, so I took it easy the rest of the evening and re-watched some of the episodes from True Blood last year to pump up for the new season.

Today, Rene went back to work and I mostly relaxed. One of my other favorite “meals” that I won’t be eating during chemo are the soft-taco supremes from Taco Bell, so I ventured out to get those at lunch. This also proved to be too ambitious, and from a combination of my recovery, the Texas heat and waiting too long to eat I got a bit dizzy and nauseous while I was out, and didn’t enjoy the meal as much as I wished.

While I was out, I also retrieved my prescriptions from the pharmacy. Luckily, I’ll be getting a numbing cream so I can prep the port area before chemo starts tomorrow. They also prescribed me a pain killer. While I’m on the chemo, I’ll be immuno-suppressed and they need to know about any kind of infection I might have, so I can’t take any Advil, Tylenol and basically any over the counter pain medication because they can mask fevers. They also gave me anti-nausea and anti-inflammatory medicine to help assuaged some of the other chemo symptoms as well.

I get asked a lot about what kind of side effects I’ll have. I’m honestly not sure because chemo is different from person to person, session to session. The main things to watch out for are fatigue, nausea, constipation, loss of appetite, lethargy, light sensitivity, proneness to bruising and infection. I will probably lose some of my hair, if not all.

People always seem really fascinated and horrified with the hair loss aspect. Losing my hair is honestly the least of my worries. I just got in a multi-pack of turbans I ordered from Amazon, and they seem like they’ll get the job done if/when I lose my hair. Part of me is really not sad at all about the prospect since I’ll get a break from bad hair days and expensive haircuts for awhile! I’ll also potentially lose body hair which means I’m not plucking my eyebrows until further notice. Why put myself through such torture if I’m just going to lose them anyway? I’m still shaving my legs because, I mean, a girl has to have some standards. But honestly, hair loss is not something that bothers me a whole lot. Watch me freak out in a few weeks when it does happen, but right now I feel okay with it.

From extensive Googling I also found out that TRICARE will pay for one wig. I called my primary care manager and she’s going to figure out how to navigate that system to get that paid for, so I’ll keep you posted on how that process is works. Right now I’m planning just to wear the wig for special occasions and maybe to work, otherwise I’m going to turban it up or go au natural. As an Alias fan, I’ve always had a penchant for wigs anyway, so I might just stock up on some cheap costume ones with bizarro colors just for funsies.

I’m the one in the bright red wig dressed up as Sydney Bristow from Alias in this Halloween 2005 photo.

I also learned from Victoria that I qualify for a temporary disability tag, so my PCM is also helping me out with that process as well. Apparently it has to go through the tax office and not DPS or the DMV, who knew? Victoria also told me about this amazing program called Cleaning for a Reason, where maid services volunteer to clean chemo patients houses for once a month for free. I’ve already been approved and have my first session coming up in mid-June. I’m super ecstatic about this, and my house, pets and husband will also benefit greatly!

The actual chemo process starts tomorrow morning. So Rene is taking me out tonight for sushi for a “chemo eve” date, and then we’ll be in the hospital for more than four hours tomorrow while I receive treatment. I’ll keep you posted on how that process goes!

Edit: I also can’t have fresh flowers due to chemo. Quite a few of you have been amazing and have ordered some for me the past few weeks. Starting now, I won’t be able to have them in the house. If for some reason you’ve already ordered some for me, don’t worry, I’ll have Rene get them to a nursing home or some other deserving purpose.