I Survived Cancer and Then Donated My Hair

About a year ago last summer, I decided to take a last-minute, cross-country road trip with one-year-old twins to see family prior to moving to South Korea. One morning I woke up in my childhood bedroom in Lafayette, Louisiana and decided it was the day I wanted to fulfill a long-term goal I had held since I shaved my head during chemo almost exactly three years prior: I donated my hair. I called around to my friends and asked for a salon recommendation since it had been several years since I lived in Lafayette. A few people recommended Morgan at Spa Mizan, and she miraculously had a cancellation and could take me that day. What I didn’t know is that she was also a young adult survivor of cervical cancer, and was very pumped to help me achieve this dream. She took her role very seriously, and carefully read through the hair donation requirements before measuring out my hair. She ultimately decided to maximize the length of my hair donation by dividing my thick locks into two pig tails. Fortunately, my childhood best friend and occasional guest blogger, Allison, came with me to document the event and you can see the results here. The three of us had all been affected by cancer very directly in different ways, and I was really honored to be able to share this experience with them.

Although I chose the day spontaneously, I took the decision to donate my hair very seriously. One of the first things I did was choose an organization to donate my hair through. A lot of people have heard of the organization, Locks of Love, which donates hair systems to children with long-term hair loss, primarily benefiting children with alopecia areata. However, several organizations are out there that accept hair donations. A great list is available here. All are great organizations, so if you are interested in donating your hair, my advice would be to research their missions and requirements to decide which one fits your needs best.

I ultimately decided to donate through Pantene’s Beautiful Lengths program for a few reasons. The main reason is because they work with American Cancer Society specifically to provide free wigs to women with cancer. Many of my friends and their loved ones had received hair replacements through this program. I really felt called to support them since I had witnessed the benefit of their program firsthand, and I really wanted my donation to benefit a cancer fighter. My other reason for supporting the program was much more practical. The Beautiful Lengths program only requires an 8-inch pony tail, while most other hair donation charities require 10 or 12 inch pony tails for donation. Since I am a pixie girl at heart and my children love to tug at my hair, I knew my patience for growing out my hair was going to be minimal – so planned accordingly. To my surprise, I ended up with two 10-inch pig tails to donate, but ultimately decided to donate through Pantene’s Beautiful Lengths program because of their service to the cancer community.

Once you choose the program you want to donate through, it is important that you follow their recommendations for taking care of your hair while you grow it out. According to a rather outdated New York Times article, as much as 80 percent of hair donations to Locks of Love in 2007 were unusable because people didn’t follow their requirements. If you really want your hair donation to go toward someone in need, it requires a long-term commitment. You generally have to avoid coloring your hair during the time it takes to grow it out (in my case 2.5 years) and maintain it with regular trims and conditioning. Pantene provides a great resource on how to prepare your hair for donation here. If you are interested in hair donation, please do your research and make sure you are willing to make that commitment. If you aren’t able to participate because your hair is color-treated or for another reason, there are many ways you can participate, such as making a monetary donation, or volunteering to create awareness for the program by recruiting participating salons and/or hosting hair donation events.

I really loved growing out my hair and felt elated by returning to my pre-cancer, pixie look. In the process I hope I was able to create some awareness, both for hair donation and adolescent and young adult cancer issues. I hope this blog post will provide some great resources for anyone considering hair donation in the future!

 

 

 

 

 

 

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Q&A with Megan Hildebrandt on Pregnancy and Parenting After Cancer

I was very excited that Megan agreed to do a follow-up Q&A after her beautiful guest blog post, Excerpts from Chaos in the Waiting Room. One of the reasons I asked Megan to guest blog for me was because I was curious to hear from someone who had a “typical” post-Hodgkin’s pregnancy. My pregnancy was treated as a “normal” twin pregnancy. Despite my health history, I never had to do any additional scans, tests, etc. beyond what would have been expected of any twin mom. Megan was completely willing to satisfy my curiosity about what my pregnancy may have been like if I had had a singleton pregnancy. She also delved deeper into some other related topics, like her experience with PTSD after cancer treatment and postpartum depression after pregnancy that uniquely affected her pregnancy and parenting experiences. I want to extend her a big “thank you” for her willingness to discuss such personal topics. I hope someone reading this will be able to learn as much from it as I did .
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Megan with her husband (Daniel) and daughter (June). 

1) What was your diagnosis, stage & subsequent treatment?
Hodgkins Lymphoma, Stage 2A. ABVD Chemo infusion, 4 hours every two weeks for 7 months.
2) How old were you when you were diagnosed?
Diagnosed at age 25.
3) How old were you when you went in remission?
Remission at age 26.
4) Was cancer treatment effects on fertility discussed with you at all? Did you undergo any fertility treatments prior to or after cancer treatment? Please explain.
cancer treatment effects on fertility briefly discussed upon diagnosis. like a 2 minute thing. no fertility treatments prior to or after treatment- could not afford.
5) Were you scared you wouldn’t be able to get pregnant?
i was very, very scared i would never be able to have children. in some ways i was more upset about the possibility of not getting pregnant than the possibility of cancer returning.
6) How were your concerns about pregnancy and motherhood shaped by your cancer experience?
My brain reverted to being a cancer patient a lot when i was pregnant- another very medicalized experience, another “patient” experience. Illness verses condition.  I was a very nervous pregnant woman, possibly more so than the average pregnant woman. I was treated as high-risk because of having had chemo, so this added medical attention, while the best for the baby, wreaked havoc on my nerves.
7) You discussed that you were considered high risk because of your health history, can you explain how your pregnancy was different than a “normal” first pregnancy? How many times you had to go in to for check-ups, what types of scans they made you do, etc. Did they explain why they were so concerned?
I had monthly 3d growth ultrasound checks with a high-risk specialist. thank god i had medicaid and the scans were covered. i had a pulmonary function test and heart echo to make sure my body could take the strain of labor.  (Editor’s note from Laura to say that Megan stated that the doctor’s were concerned about specific drugs that can cause lung and heart damage but wasn’t sure which ones. My guess is that one of the drugs was bleomycin. Some chemotherapy drugs and radiation treatment also increase risk of heart damage as well, including Adriamycin, another chemo used in the ABVD treatment for Hodgkin’s Lymphoma.)
8) You told me your essay was inspired by the “lazarus effect.” Can you explain what that is and how you first learned about it?
I first heard of this Lazarus Syndrome thing through Lodovico Balducci, an oncologist and writer in Tampa. The actual Lazarus Effect in medical terminology is when the body moves or jerks after someone is technically “dead”.  But Dr. Balducci was more interested in it abstractly, in terms of spirituality- like a personal re-awakening.  We were on an Arts-in-Health panel together at Moffitt Cancer Center and this is where I first learned of it.
9) You discussed your experience with PTSD after your cancer treatment. What were some warning signs? What made you decide to get help?
ptsd set in right as chemo ended. without anything to physically battle, my brain began to battle itself. I was afraid to drive, to cross bridges, to cross streets, to fly in planes, to leave my house. I am not as bad as those initial months post-treatment, but ptsd still comes and goes for me.  I especially have trouble hearing other people’s cancer stories on the radio or on podcasts or in person.
10) Is there a relationship between PPD and PTSD that was discussed with you at all?
no one ever specifically has connected PPD/PPA and PTSD in my case- but I can totally see the connection very clearly.  more research needs to be done in this field.
11) Do you have any tips/advice to other young mothers/cancer survivors who might be reading this?
my tips would be: get involved with research studies (there is one I am involved with out of the University of California system) that track fertility in young adult cancer survivors.  It is only through our participation in these studies that can help scientists tweak treatments to reduce infertility rates. Many of the fertility “numbers” available to young adults currently undergoing cancer treatment are outdated and based on harsher treatments from the mid/late-20th century.

Excerpts from Chaos in the Waiting Room

Once upon a time (sometime last spring) I asked my good friend, Megan Hildebrandt, to write a guest blog post about what it was like to be pregnant after cancer.Shortly after I asked her this tremendous favor, I found out I was moving to South Korea and shamefully forgot all about it. As Mother’s Day approached, I remembered the beautiful story Megan sent me, and had to share it with the rest of you.

Megan and I met about three years ago through Young & Strong Fight Club, a social and support group for young adult cancer fighters in Austin, Texas. We quickly clicked over a shared diagnosis (Hodgkin’s Lymphoma). We eventually became new moms within a year of each other. Now that I am living overseas and not as involved in the cancer community, I acutely miss her and the amazing group we helped form back in Texas. I am eternally grateful for today’s technology for allowing me to still feel a part of something and for the ability to keep in touch with my friends back home.

If you are interested in hearing more from Megan, she also appeared on the Stupid Cancer podcast “Parenting with Cancer” and has agreed to do a Q&A with me, which I will post later this week.

Megan is a visual artist, writer and professor, now living in Traverse City, Michigan. On her inspiration for the following post, she states “I am thinking about this thing called Lazarus Syndrome, or rising from the dead, and pregnancy as one’s own re-birth.”

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Megan with her daughter, June.

  1. (Re)birth

I am waiting. I am waiting in a waiting room.  I am waiting in a waiting room until the event

 

which I am waiting for happens and begins.

 

One year, I am looking at a drip.  A bag of Bleomycin hooked up to my port.  The time it takes

to enter my body is 5 hours.  The time it takes for my cancer to remit is seven months.

 

Another year, I am looking at a light. A blinking, red light. It scans my body to check for abnormalities, for growths. I feel stuck in the tube of the CT machine, myself a trapped pea in an unlikely pod. The time it takes to look inside of my chest is ten minutes.  The amount of visits I make to the machine seem infinite.

 

The next year, I am looking at a monitor.  A fetal heartbeat monitor. The time it takes for my body, an anxious vessel, to make something whole and perfect is 9 months and 7 days. The time it takes for my baby to be born  is 18 hours.

 

The moment my daughter was thrust toward me by the doctor, all slippery and wonderful and screaming, was the single most intense, emotional rush I have ever had.  Something had grown inside of me that was right. Utterly, exquisitely right. Her confused and perfect face looked at me and I was reborn with her- I was her birth witness, and she mine.  Everything that had happened outside of that moment faded away- the months of waiting and worrying, the pains of labor, my husband Peter’s exhausted and concerned face.  I am overrun with vitality; her alertness gives me an overwhelming sense of buoyancy and light.  Pure and righteous, we were both (re)delivered into the world.

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Megan, fishing shortly before she lost her hair to chemo.

We name her after my grandmother, June.  She was due in June and born in July.

 

  1. Body as Tomb

 

June’s birth was so unlike the last time something had grown inside of me, a cancer four years prior. Both experiences had involved a swelling of the body- one a disease, the latter a condition. Morals were assigned: one growth not normal, one growth very normal. Unnatural, Natural.

 

My body had done wrong before- betrayed itself, myself with cancer- I had turned against me.

The baby had kicked hard in those last months to be sure, but cancer had blasted my bones and flesh from the inside.  Or no, that was the medicine, chemo for 7 months.  Cancer was silent, mostly invisible.

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Megan, during chemo treatment. 

Both states involved a mental and physical countdown to the main events of remission and birth. Emotionally, the states could not have been more different.  During my treatment, I was a stone wall.  Nothing upset me.  I was doing what I had to.  If I wasn’t calm and composed, then who would be?  The tough, thick skin grew on me, forcing my hair to fall out.  Others treated me like a cracked porcelain cup, or an endangered animal.  I couldn’t stand the condolence cards, the “Thinking of You” sentiments bounced out of my mailbox and into the trash can.

 

Throughout pregnancy, however, I was fraught with worry, depression, and panic.  Now I really was a fragile object, an animal on the brink, protecting my unborn young. Others seemed so convinced that everything would be fine, that my baby would be born healthy.  Where others saw assured hope and happiness, I found myself walking on nine months worth of eggshells.

 

My pregnancy had been very medicalized.  I was treated as high risk because of my past with cancer and chemotherapy.  Nine months, ten growth checks via 3D ultrasounds in which my daughter appeared as a small clay doll, rolling and growing as Peter and I let out sighs of reliefs with each “Everything looks great.”

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Megan was kind enough to share some of the her artwork she created during treatment. 

I struggled with post-partum depression and anxiety after June’s birth.  It was both similar to and completely unlike the post traumatic stress disorder I was diagnosed with after chemotherapy ended.  After the baby was born last year- I transformed from a growing, pure body with two lives inside, glowing and expectant and anxious and hopeful.  I emerged from her birth a different, deflated tomb, mourning the loss of it’s treasure.  After chemotherapy ended and I was in remission, I missed my cancer.  With cancer, I was fighting something, had an enemy, was on a roadtrip with a clear destination. Without cancer, I was doing none of those things. I could not return to the self I had been before getting sick.  Being cut free from the identity of being a continual patient was so discombobulating- not unlike the ending of pregnancy and the entry into motherhood leaving me off-balance, in the dark.

 

III. Lost and Found Again

 

The purity in June’s face is the wrinkle forming in my brow. She gives me back youth and ages me. Looking at her is such happiness that I could die. I wonder if bringing forth a new life is a solution to one’s own assured death;  a continuation of the line as immortality.  There is so much comfort in knowing she will be here after I am gone.   If we begin dying from the moment we are born, did I stop dying the moment I gave birth? Have I risen from the dead, or been put back into a blissful sleep?  I will take both.

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Artwork from Megan After Child. 

There are two B.C.s in my self- Before Cancer and Before Child.  In each case, I was found before and lost after.  In each case, I was lost before and found after.  Both umbilical cords still exist in my heart and head.

 

What Have I Been Up To? + Cord Blood Banking Options

Clearly it has been over a year since I blogged. Here is a quick crash course of what I have been up to since my last update:

  • We moved to Daegu, South Korea in August.
  • We are moving to Osan AFB, South Korea in June.
  • My twins just turned two in April.
  • I turned 29 just six days after their birthday.
  • It’s been almost exactly 4 years since I was diagnosed with Hodgkin’s (May 11, 2012).
  • I am still in remission.
  • I only go in for cancer check-ups every six months now, and nowadays only have to do blood work and CT scans instead of PT scans (which is good because I receive less radiation exposure).
  • In one year I will be considered “cured.”
  • I just had blood work done yesterday and all was well.
  • I wrote a 67-page thesis.
  • I turned it in on May 1.
  • I now have a master’s degree!!! Woohoo!!! (Or will as soon as final grades are submitted)
  • I’ve lost somewhere in the neighborhood of 20 lbs since December. I am still not at my pre-cancer weight, but am hoping to address that more aggressively now that I am done with grad school.
  • We have done A LOT of traveling. Before we left the states we took several road trips to visit family and have also taken short vacations to Seoul and Tokyo since we moved to South Korea. My two-year-olds have traveled through or visited a grand total of 21 states, the District of Columbia and three countries since birth, and have also lived in three different houses/apartments (soon to be four!)
  • This will be our third move in 18 months.
  • We have made countless friends and have had to say many “see you laters.”

I am currently experiencing some kind of post-thesis energy surge where I feel like I have so much more time to do cool things like take my kids to story time, read for pleasure, watch TV, go for walks, and blog (apparently.) I am hoping to do these things more often now that I am done with grad school. I had a lot of moments where I thought, “oh, I should totally blog about THIS!” and then realized I had a deadline for grad school approaching and thought, “Nevermind….maybe later.”

So, for the time being at least, later is now. There is one blog topic in particular that has bounced around my mind since I got pregnant almost three years ago: cord blood donation and banking.

Let’s start with cord blood donation first. Be the Match is probably the best resource for this information. To summarize, umbilical cord blood is rich with blood-forming cells that can give blood cancer patients hope for a cure. Parents can donate their baby’s cord blood to a public cord blood bank and it will be listed on the Be the Match Registry, where it’s available for anyone in need of a transplant. According to the website, donating cord blood is completely free and safe for mothers and babies..

Thousands of critically ill patients with blood diseases like leukemia and lymphoma are in urgent need of a life-saving transplant. Umbilical cord blood, which is typically thrown away, contains blood-forming cells that can give blood cancer patients hope for a cure. Donating a baby’s cord blood to a public cord blood bank can help patients get the transplants they need.

I researched this process and as soon as I filled out the questionnaire on the “Learn if you can donate cord blood?” page, I realized I wouldn’t be able to donate my babies’ cord blood for two reasons: 1) Cord blood is not accepted from multiple birth pregnancies (twins or more), and 2) I am a cancer survivor. I feel like the second reason is totally legit and not surprising. I feel like the first reason is kind of weird. Be the Match cites the following for the reason for the ban: “[…] public cord blood banks can only accept donations when one baby is expected. With twins, each umbilical cord has different tissue types and it’s possible the two cord blood units could be mixed up during collection.”

I find it hard to believe in a world where we can train people to perform organ transplants on the reg, we can’t train them to properly collect cord blood from multiple births. I also find it hard to accept that in a world that has extensive testing for said organ donations, we can’t also properly test cord blood. I would be more inclined to accept this as a legitimate reason (sort of) if the private industry didn’t offer storage of twin cord blood for personal use, but (spoiler alert) they do. Which brings us to the topic of cord blood banking.

Essentially cord blood banking is the same procedure as cord blood donation, except that the cord blood then goes into storage for a fee in case the child or a family member of the child one day needs it. WebMD has a pretty comprehensive list of the pros and cons of cord blood banking. The pros being that it could possibly save someone’s life one day. The cons being that the odds of someone ever using it are pretty slim to justify the (very expensive) collection and storage fees. The article states that some medical professional don’t encourage families to bank cord blood unless someone in the family has or has been diagnosed with certain blood disorders, including leukemia and lymphoma.

As a blood cancer survivor, I was deeply concerned that my kids could one day have blood cancer or another disorder, and wanted them to have every possible option available to them if that time ever came. However, the cost of cord blood was definitely a barrier for us, especially after costly medical expenses. I was extremely disappointed that we couldn’t donate our babies’ cord blood or even pay to store it for possible future use. It seemed like such a waste.

Enter CBR’s Newborn Possibilities program. CBR is one of the private companies that offer cord blood collection and storage to families for private use (usually for a fee.) However, they also run the Newborn Possibilities program and offer qualifying families free collection and storage of cord blood for up to five years. I found this program through extensive Google research, and suspected we qualified.

To qualify, the newborn should have a full-sibling or a biological parent (check) who has been diagnosed with a disease and disorder currently treatable with stem cells (check). The newborn may also qualify if he/she was identified as having a health condition during pregnancy or at birth that may benefit from experimental stem cell use. I called the number listed on their website (1-888-932-6568) and was quickly put in touch with one of their clinical specialists. After a brief conversation, the clinical specialist agreed we most likely qualified, and soon emailed me an application for the program and other forms.

After filling out some paperwork regarding health history, getting a note from my oncologist confirming my diagnosis, and having some blood tests run, I submitted the application to the company and we soon found out we were approved for the Newborn Possibilities program. The only possible cost associated with this procedure would be whatever fee the hospital would charge for actually cutting the umbilical cord and placing it in the storage containers (usually a marginal cost compared to the regular cost of collection and five years of storage fees.) Fortunately, our insurance covered this fee as well.

Leading up to my due date, we received two collection kits (one for each baby) with “parent instructions.” All of this was pretty simple and can be broken down into the following:

  • Activate your online account
  • Confirm the receipt of the collection kit.
  • Complete the Family Banking Enrollment forms.
  • Unpack the kit and make sure all the items are in the kit
  • Inform your doctor you are going to bank your newborn’s cord blood.
  • Put the collection kits in your hospital bag leading up to labor/delivery
  • Once arriving at the hospital to give birth, inform your admitting nurse that you have arranged for your newborn’s cord blood to be collected and you’ll need an additional maternal blood draw to be returned with your cord blood and/or cord tissue.
  • Keep the kit accessible and ensure it is available for easy access by your health care providers (I put my husband in charge of this and the remaining steps.)
  • After collection, check your kit to ensure samples have been return and that the data collection sheet as been filled out completely.
  • Fold box for shipping and follow all shipping instructions.
  • Call 1-888-588-1292 to arrange CBR’s One-Step Shipping (available 24/7). Someone should arrive to pick up the kit(s) very quickly. The kits ideally should arrive at the CBR processing facilities within 32 hours after giving birth.

I highly encourage anyone who is expecting a baby to research cord blood donation and banking options, and figure out what is best for your family. I also encourage you to share this information with anyone you may know who is expecting a baby and has a family history of blood cancer or other blood disorders that are treatable with stem cells. The Newborn Possibilities program may one day help save their life or someone else’s.

 

 

 

 

 

 

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.

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!

Milestones: My Half-Marathon Experience

Thursday, July 11 was a major milestone on my cancer journey: I had my chemo port out after more than a year. When I would talk to people about it leading up to the procedure, they were so excited because the port is often considered the symbolic end of the cancer journey (though its never really over.)  I was surprised at their reaction at first because it didn’t seem real for me and I had trouble sharing their excitement. The port extraction just felt like the last thing on a long to-do list related to cancer. A major part of my lack of enthusiasm was the anxiety of having another procedure done.

My oncologist actually suggested I get it taken out in March, but I was feeling really overwhelmed at the time. I really wanted to get back to a “normal” routine with work, fitness, life, (and be in the millions of weddings I was in this year without having a open wound going on in the photographs) and surgery was just not a part of that equation for me… even if it was for a positive reason! I was also just generally adverse to being cut open in any way… however, I am happy to report that having a foreign object taken out of your body is apparently much easier than having it put in (at least in my case it was!) I was on significantly less sedation for the procedure itself, so I didn’t get sick afterward and I was much less sore. I still spent the next four days laying on my couch and groggily watching TV, but I think that had a lot to do with the cold I developed the day before surgery than the procedure itself. I am also excited because I am only restricted from swimming and working out for a week as opposed to several months like last year. The incision itself is still sore and itchy, but life is otherwise pretty much back to normal.

One of the reasons I’ve been so slow  to blog is because I’ve been out there “living it” as the young adult cancer community loves to say. My last post updated through Memorial Day weekend… and June was no less busy and exciting than April & May! I absolutely love the summer time and I wasn’t able to enjoy it at all last year. Surgeries + chemo + radiation = a lot of water & sunlight restrictions… which pretty much limits most fun activities in Texas.

June started off with a  bang as I hopped onto a plane to San Diego with my team-in-training teammates for the Rock N’ Roll San Diego half-marathon. As I have mentioned on here a few times, my sister Theresa, also signed up for the race with TNT and met me there. Neither one of us had a lot of time to research the area, but we both quickly fell in love with San Diego. The weather is pretty much perfect year round, the food is superb and there were plenty of historic sites … including a couple of ghost tours (which I am pretty much obsessed with!)

My friend from childhood, Megan, also did the race with me. When we got in on Friday, we all met up at the expo and one of the things we did was stop at the Delete Blood Cancer booth who were there to register bone marrow donors. I’m permanently deferred from donation due to my lymphoma diagnosis, however, both Megan and Theresa became my heroes by registering. I tweeted this pic and was retweeted by Delete Blood cancer, it was pretty bad ass.

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The next day we took the opportunity to visit the San Diego Zoo and met up with my dad’s cousins, who we hadn’t seen in about 13 years. Pretty much the only thing I knew about San Diego was the zoo, so we just had to go there… much to my coach’s dismay since we were supposed to stay off our feet as much as possible before the race… oh well! When in San Diego… go see the zoo! It was pretty awesome. My favorite part was seeing the Galapagos sea turtles! We were close enough to pet them but they were having none of that. I was amazed not only by their size, but because some of them had been alive since before Abraham Lincoln was president!

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That evening we went to the Inspiration Dinner for Team In Training which was a really incredible and unique experience. As you walk into the banquet room, all the coaches and mentors from around the country line up and cheer everyone on. Many people reached out to me and patted me on the back or gave me high fives, some because they knew I was a survivor and others just because! One of the proudest moments for me is when they asked people to stand up if they were survivors, and to stay standing if we were also participating in the race, and to keep standing if we were participating and also an honored hero. I was one of maybe only five or six others who stayed standing the whole time in a room of about 1,500 people. It was very surreal.

One of the speaker’s has a father who passed away from blood cancer and a son who is here today due to the advancements in cures funded by the Leukemia & Lymphoma Society and TNT. The whole evening really shot home to me why we do the things we do. Team In Training folks had raised an outstanding $4.5 million for this event alone! I was so proud to be a part of that. There was also a nice bonus surprise because it was at the Inspiration Dinner that the race director announced that the Rock N’ Roll series was introducing a bonus medal for charity runners… which meant we got one but TWO medals if we finished the race the next day instead of just one. I’m all about the bling so I was super stoked!

Spoiler alert: I finished the race and this is what my rockin’ medals look like!

It was important to remember the reasons we signed up for TNT the next morning because we woke up dark and early at around 4:30 a.m. to catch the buses with our respective chapters. However, we were all so caught up in the moment and charged for our race, I don’t think we cared a hole lot about the wake up time. When we got to our corrals (many hours later) I felt the need to take a lot of obnoxious photographs. The race happened to take place on National Cancer Survivor’s Day on June 2, so I also felt the need to post all these photos across various social media declaring how bad ass I was for doing a half-marathon and being a cancer survivor (I am not egotistical at all…)

They generally are some version of this:

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Megan & Theresa were much cuter/calmer than me.

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There were also a ton of people there, about 30,000.

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You can get a vague impression of the huge crowd from this photo.

The race itself went surprisingly well. Theresa & I stayed together almost the entire time. I’m a walker and Theresa generously decided to walk alongside me so we could have the experience together. However, there were enough epic downhill stretches that we decided to run a few (I’m more willing to run if gravity is on my side doing most of the work!) The weather was absolutely wonderful and the temperature was in the 70’s the whole way. The San Diego folks had chairs set up along the race cheering everyone on whilst drinking at 7 a.m. It actually made me feel like I was back home in Louisiana for a Mardi Gras parade. Some folks even had signs that signs that said, “Worst parade ever.” At this point I was focused on staying ahead of the time limit, so there was no time to take photos for documentation purposes. Toward the end of the race I was feeling more confident that I would easily make it across the finish line with time to spare so I stopped to take a few photos of the course.

Theresa, Megan and I all fundraised as part of Team Jackie in honor of our teammate’s sister Jackie Sharp who passed away last year from leukemia. It was very motivating to see this sign toward the end of the race.

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I’m not sure why I felt the need to take a picture of the 12 mile marker and no others, but I did! This was at the end of a pretty long downhill stretch and Theresa & I were both a little woozy.

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In the end, we both made it across the finish line RUNNING and holding hands at 3:48:03. The folks taking photos didn’t snap a great shot of this at all, but it was pretty amazing. I technically beat Theresa by one second, and I have a feeling this is an achievement I will never accomplish again!

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I also thought it’d be cute to bite my medal like an olympian… it wasn’t.

All jokes aside, I cannot express enough how important it was for me to accomplish this goal. Being able to finish a half-marathon less than one year out of treatment, on National Cancer Survivor’s Day, as a way to raise awareness and research funds in honor of people like Grant, Jeannie, Brent, Jackie, Jay, Sam and all those who have fought cancer … was incredibly symbolic and an emotional experience for me.  The whole race really just made me feel like, “I’m going to be okay.” I became teary on more than one occasion passing signs with photos of people the LLS had helped using the funds TNT raises. A survivor herself was near the finish line holding a sign that said “I’m here because of you!”

I am so happy I chose to do Team In Training and I recommend it to anyone who is looking for a way to train for an endurance events. TNT is designed to be accessible to people of all fitness levels. You can choose to walk, run, tri, hike or bike for a variety of distances.  If you are looking for a way to support TNT, I am very proud to announce that my friend from grad school, Becca, has chosen to join TNT and train in my honor for the Brewer’s Mini-Marathon in Milwaukee this September. You can follow her progress and learn more about her training at http://pages.teamintraining.org/wi/brewmara13/wendler.

In my next entry, I will update you on some of the others shenanigans I’ve been up to!