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.