Why my body hates not being pregnant: Angioedema, Urticaria, and Tumors, Oh My!

A few months after having Veda I began experiencing hives and facial swelling. On Labor Day of 2011 it got so bad we decided to spend the next day in the urgent care and at an allergist getting a full allergy work up. Cause- unknown. So, every day I took a Zyrtec. I was worried about Veda and how much she'd be getting in my breast milk. But realistically it wasn't much, and it was either that or go about motherhood with hives from scalp to toes, swollen eyes, swollen lips, and the potential of a swelling throat. (My doctor gave me an epipen just in case.) And after a few weeks of meds, I was hive free. BUT, if I forgot to take them, or decided I was cured and skipped a day- I was a hivey, swollen, itchy, mess. When my dad got sick they got worse. The Zyrtec wasn't cutting it so I added Allegra, and Zantac. That did the trick for a month or so. Then, I peed on a stick, saw two lines, and everything changed. I stopped the added meds right away. Then slowly but surely I got down to half a Zyrtec, then a third of a Zyrtec, then off entirely. And guess what- no hives. No hives my whole pregnancy with Clive...

An arm.

Ha ha, so bad. 

I  was so nervous about what my future [postpartum] looked like. I haven't experienced these symptoms to the same extent, but at the first sight of swollen, insanely itchy eyes and throat, I started Zyrtec again. I was so sure nothing could beat postpartum hives... Then I found a tumor.

This is the first time I've talked about this on the great wide Internet. And let me start by saying- it's nothing too serious. I mean, it's a tumor, but it's benign. 

This whole scary debacle began at the end of June, days before we were supposed to leave for a week in Illinois with Matt's family. I had a totally normal, no big deal stomach ache and was rubbing my belly. Then I felt a lump just  to the left of my belly button. When Matt got home I asked him if he felt it. He did. So I went across the street to our friend who just graduated from med school. He felt it too. So it was official- there was a lump. I made an appointment with my doctor the next morning. She scheduled an ultrasound for that afternoon. Matt came home early, we loaded the kids up and headed to the hospital. Thank god he drove me because this is when I really started to get scared. The tech looked at the screen for a long while, asked me a lot of questions, then called in a doctor to  take a look. I've had a few ultrasounds, unrelated to pregnancy, and they've never called in a doctor. He barely looked at me before he turned his eyes to the screen and to the large dark area in my abdomen. Now, I've seen enough Grey's Anatomy to know that large dark areas on ultrasounds mean something. And it's usually not good. He asked me quick, serious questions including if I had hit that area recently. This is when I started crying. Shirt up, recently-not-pregnant-belly exposed (moms- you know what I'm saying), and tears streaming down my silent face as this handsome young doctor (I forgot to mention that. He was not only cold, but handsome.  Like McDreamy/McSteamy handsome.) discovers what I think is probably the beginning of my end. 

Turns out they didn't learn much from the ultrasound. It was definitely a "mass". What they did learn was huge to me. One- it does not have a blood supply. Two- it is a lot smaller than it feels. Three- it is in my abdominal wall muscle and not interfering with major blood vessels or organs. But, they still were uncomfortable with not knowing exactly what we're dealing with. So we scheduled an MRI for the next day. 

We got everything ready to leave straight from the hospital for "vacation". I traded in my jewelry and clothes for a hospital gown and footies. They went to put an IV in my arm and I asked why. They needed to use "contrast" to see the tumor better. "Can I have that while breastfeeding?" "Umm, let us check." The nurse called someone to come down and we chatted about our recently born babies. A woman came in with a hand out saying it was decidedly okay to breastfeed after contrast...but there were also words like "toxic", "precautionary" and "potential risks"... And I didn't like it. My eyes filled with tears as I read. I had no milk stored up, no pump, and we were about to head on the road for seventeen hours. But we needed to know what the mass was. That's when the department head of radiology came down to talk to me himself. He was incredibly kind, patient, and understanding. In the end I decided to do it, drink lots of water, and pray. (Clive was totally fine.) The MRI itself wasn't so bad. I listened to classical music and used my water polo/swim team past to hold my breath too long and too often as directed by the ultrasound technician. Then, after 3 hours at the hospital, we left for Illinois. (Our hotel halfway there had bedbugs btw. But that's a different story.) 

The MRI confirmed a few things, but didn't give us much more information. So a biopsy was scheduled for when we got back. I tried to enjoy vacation...

Finally it was time to get poked and prodded. We dropped the kids off with Nikki (who has been a godsend through all of this) and headed back to the hospital. Our doctor was nothing short of amazing. He made both Matt and I feel completely at ease. The small needle aspiration they did came back with only spindle cells. (They had a pathologist on site to test it. The ultrasound techs called him "the grouchy one.") We'd have to do the big boy. The core sample. But apparently the small needle aspiration ruled out metastasis from melanoma which was apparently a possibility. (Thanks for not telling me that doctors. Truly. **Remind me to schedule an appointment to get my moles checked.  ASAP**) The radiologist then pulls out this terrifying contraption, gently jams into my abdomen at quite and angle and "BANG" shoots the tumor with a hollow needle and extracts a sample. It sounded like a staple gun, but thankfully I was very numb. It ended up we were there for hours, but I was grateful he was taking his time to do accurate calculations. I had signed a release having to do with organ puncture, so I was in no hurry. 

A couple days later my doctor called and told me they were suspicious of it being a spindle cell tumor. That we'd have to remove it to know how "aggressive" it was. From what I read, spindle cell tumors could be benign, but they could also be malignant. And that possibility hit me like a freight train. I wept and wept for days. Our meeting with the surgical oncologist wasn't for another 10 days and I was a total wreck. After three or four days of imagining Clive growing up never remembering me (I know, so dramatic) my doctor called back. She had only gotten the results of the small needle biopsy. The core sample had just arrived and they were officially diagnosing it as a Desmoid tumor. A benign tumor. A benign tumor!! It was the one year anniversary of my dad dying of stomach cancer. 

Our meeting with the surgical oncologist was in "Abramson Cancer Center". Matt and I said they should have a wing for benign situations called- "It's Not As Bad As It Sounds". We really liked him and after a long conversation we decided to wait for three months and see if it shrinks. It's not likely, but it's happened before that a Desmoid tumor resolves due to hormone changes. Our other immediate option was surgery. Desmoids are tricky because they not only grow, but also have a 40% return rate. As far as benign tumors go (if you wanna be picky about your benign tumor...) they aren't the best kind to have. Thankfully mine is in an ideal place- in the muscle, not interfering with much. Just feeling lumpy and sometimes scary. 

Our next MRI is on the 20th. We meet with the surgical oncologist right after that and will decide what to do. As of now it definitely still feels tumory. And to be honest, more so than when we started. But I'm also loosing baby weight (s l o w l y), which may make a difference in how it feels to the touch. 

So, surgery? Probably. And they'd have to remove the healthy tissue around the blurry margins of the tumor as well, since reoccurrence is such a possibility. Which may mean prosthetic muscle.  My body seems to love doing weird stuff after it houses and pushes out a baby. Worth it? Totally.