In the spring of 2010, soon after I found out I was pregnant with my third little girl, I noticed a lump on the right side of my neck. I tried not to worry too much, figuring it was a lymph node. At my first OB appointment when it was still there, I asked about it and was told to give it another month. Sure enough, a month later it was still there. So my doctor who was a great mix of watchful and proactive ordered a neck ultrasound he told me to rule out lymphoma. During the neck ultrasound I remember the ultrasound tech asking if I felt the pulse in my neck in any strange sort of way. I thought it was a weird question but told him I didn't. My doc called a couple of days later and told me I had a carotid body tumor/paraganglioma. It still makes me laugh that as he was talking on the phone with me he was looking it up on Wiki and Google himself to find out what exactly I had.
We decided to call the tumor 'Tomas the Tumah' because we are weird and twisted and because it is more fun to laugh then sit there scared.
I went through a few referrals with doctors who hadn't had much experience with paras and pheos and someone with either Pheo Para Alliance or the Troopers reccommended I check out the NIH. I haphazardly sent Dr. Pacak an email just asking for his opinion about how to proceed and was gobsmacked at the quick response I got and their willingness to take on the case. We evaluated our options (since we live in WA state and the NIH is all the way over their in Maryland ;)) and decided to go there.
In the meantime, I had the rest of the pregnancy to contend with. I was initially told that since CBTs are usually non secretory it was a non issue. Some chats with the folks at NIH and one visit with a really rude anesthesiologist later resulted in me being referred to a high risk OB in Seattle, so we started the weekly two hour trek to see her. The concern was that the stress of labor would cause a hypertensive crisis either from compression of the artery, or from Tomas the tumah 'waking up' as they sometimes do. Luckily the doctor was amazing, truly amazing, and despite a snowstorm the day of my induction, a flat tire on the way to the hospital, and a long painful induction (36 hours) she was born in the early morning on Thanksgiving 2010 while snow fell outside.
Two and a half months later, we flew out to NIH for a whilrwind week of testing followed by surgery the next week to remove Tomas. I ended up with a ruptured ear drum and an ear infection during the week of testing and a bladder infection the night before surgery. Small potatoes in the long run, but at the time it was just so frustrating. The surgery went well and we flew home.
On post-op day 16 I noticed a lump at my incision site. I went to the doctor the next day and was put on anti-biotics. The lump kept growing and getting more painful. The doctors at our local hospital didn't want to touch me so they told me to head up to the ER in Seattle. By this time, I looked like quasi-modo only with a lump on my neck. It was really grotesque and upsetting and also painful. I waited 9 hours in the ER without pain meds (because they were afraid to give me anything between the possibility of surgery and me breastfeeding) for the ENT surgeons to decide what to do with me. Just as they decided to open and clean the wound there at the ER bedside, my incision burst open. Then they finished the job and cleaned it out (which hurt. As bad as natural childbirth. I'm just sayin'). They put me on massive doses of antibiotics and I hung out in the hospital for a couple days to make sure the infection was gone. On my return trip to the NIH I was told that a post op infection after a CBT had never happened to ANY patients the doctors there had ever seen. We have started playing the lottery. ;)
We found out at that time from NIH about a nodule on the other carotid artery. We finally were able to navigate the insurance gauntlet of military medicine and got a referral to a great endocrinologist and found a local doctor which I saw for the first time last month. They evaluated the nodule on the left carotid and told me that they believe it to be a lymph node. I'm really happy with that news, BUT cautiously optimistic. I am determined to be vigilant to make sure that's all it is and to ensure that nothing else 'pops' up.
So far I'm not a 'mutant' (no genetic mutation has been found) but we're waiting for results of more genetic testing to come back.
Even though I've 'only' (perspective is a funny thing isn't it?) had this one tumor on my right carotid so far, it's been a pretty bumpy ride. I'm always in awe of the people in these groups and how much they have endured. For now I am trying to grasp the idea that I am a survivor (and I am PROUD to be a survivor!), and move forward with optimism and positivity. I don't know if this will be the only chapter in my paraganglioma story or if there's more to come, but I'm grateful that I've been given the chance to see the amazing doctors that I have and I'm grateful for the support and amazing friends I've found in online support groups for this zebra of a disease.
