I've always tried to lead a healthy lifestyle, and especially in the last five years or so I've been bordering on "health-obsessed." This is evident in my career choice {nurse}, diet {vegan}, and lifestyle {active!}. I donated blood every 8 weeks, at which time my blood pressure was always checked and always ran in the 90's over 60's. On March 3, 2011 when I went in for an annual visit at Group Health and my blood pressure was 174/111, I knew something wasn't right. My doctor assured me I was just nervous, you know, "white coat syndrome," nothing to worry about. She palpated my neck including my thyroid and lymph nodes as part of the routine exam, and made no mention of any abnormalities.
Back at work, I had my coworkers check my blood pressure daily because I knew that there was no common reason a healthy young woman's blood pressure would suddenly sky-rocket like that. My coworkers were concerned, and a PA I work with, took matters into her own hands with a quick exam. She immediately noticed a very asymmetric thyroid, but since I have Group Health insurance, she wasn't able to order labs or an ultrasound for me. She prescribed a beta blocker medication to get my blood pressure down in the meantime before I could see a Group Health provider to order the needed tests. I took the next available appointment they had with a primary care doctor on March 10. The doctor I saw there was very unconcerned - she said the nodule was small and she would order labs to check my TSH. But Patti had sent me armed with a list of tests she wanted, including Free T3, Free T4, a kidney function panel, and a thyroid ultrasound. It took some convincing, but finally the doctor agreed to order the test for me. All of the labs came back within normal range. The next ultrasound appointment wasn't available until the end of April.
Back at work, the doctor I work for decided that the end of April wasn't soon enough for an ultrasound, so she asked one of the sonographers at our clinic to do a quick scan for me. Since I work in OB/GYN she didn't have exactly the right equipment and hadn't done a thyroid scan in a while, but we got images enough to see that there were certainly a few large nodules with calcifications and possible lymph node involvement. Frustrated by Group Health's care, the doctor I work for and I put our heads together to come up with a plan. We figured out that our insurance would also cover care from Virginia Mason. She knew a great primary care doctor, and made a call to her even though it was Friday evening. This doctor was willing to help, and squeezed me into her schedule on the following Monday, March 14. I still hadn't told any friends or family about this drama because I was hoping it was no big deal and I didn't want to worry them over what would likely turn out to be nothing. The vast majority of thyroid nodules are benign.
The doctor at Virginia Mason really didn't have to do much besides palpate my thyroid since I had already had one set of bloodwork and the abbreviated version of an ultrasound. She decided to do some repeat bloodwork, as blood thyroid hormone levels can fluctuate, and order an ultrasound at Virginia Mason so that one of their radiologists could read it. Within hours they had gotten me in for my ultrasound. I knew something wasn't quite right when my sonographer kept leaving to go talk to the reading doctor and the scan took nearly an hour as she carefully went over both sides of my whole neck. I asked her if it looked like normal thyroid nodules, but she got nervous and said "your doctor will call you with the results."
My doctor did call me the following morning {March 15 - my 26th birthday} before I even got to work. She was concerned about the results and wanted to get me in for a biopsy as soon as possible. She was referring me to an endocrinologist at VM, Dr. Rodriguez, who would order my biopsy. We scheduled my biopsy for March 17. By this point I knew I should at least let my family know what was going on. It still could be completely benign, but the doctors were concerned enough that I knew I should let people know. Honestly, telling people I love and who love me that there could be something wrong was the hardest part of this whole process. Dealing with their worry on top of my own worry, while trying to keep everyone updated, was a lot to bear. But I knew if it was them going through this, I most certainly would want to know.
Most thyroid biopsies are done without sedation and only local anesthesia, but because there were four sites they wanted to biopsy {three nodules and a lymph node}, the doctors asked that I be sedated via IV. I was of course agreeable to this, and I was very glad I chose this option as I was lying down on the table, terrified while watching everyone prepping for the procedure, awaiting the gentle relief that I'd soon feel as the medication would take effect. The doctor warned me that from the scans he was pretty sure it was cancer - that even if the biopsy came back benign I'd have to carefully followup with more tests and biopsies to make sure it didn't become cancer and that it was possible the sample they obtained could just miss the cancerous cells.
I woke up what seemed like only seconds later in the recovery room with Jesse next to me, sore but thankfully with no memory of the procedure that had just happened. But now came the hard part: waiting for the results.
Work the next day, Friday, was kind of a haze - I didn't know when I'd get the results. They had told me probably Tuesday, probably because of course they didn't want me calling in every 5 minutes asking if they had any news. But as a nurse I knew that pathology results were usually back in 24 to 48 hours, so either their pathology team was very slow, or the doctor wasn't anxious {or perhaps just too busy} to share the results.
But I didn't have to wait long, I got a call that afternoon from Dr. Rodriguez. I had never even met her or talked to her, but she had a thick accent and rambled on about what seemed like a lot of unimportant things before she finally got to the point - all four biopsies, including the lymph node, came back positive for cancer. What kind, I asked, knowing that there are four main types of thyroid cancer. "Thyroid," she answered.
"I understand that, I am wondering what type of thyroid cancer I have."
"Papillary." What a sense of relief. From my research I knew that this was the most common and most curable type of thyroid cancer. Being under 45 years old meant my prognosis was "pretty good," and treatment would be the standard surgery followed by radioactive iodine. She told me a surgeon would be calling me to schedule a consult as soon as possible, and I scheduled an appointment with her for the following Tuesday, March 22nd, to discuss the rest of my treatment.
Of course the surgeon's office never called to schedule my appointment. By Monday I started to get anxious, and I called them myself. The nurse I talked to was awful - completely nonchalant and devoid of any compassion. "You know it's papillary cancer right? There's no rush, it's no big deal." But Dr. Rodriguez had asked that I be seen as soon as possible, so with some prompting I got her to give me an appointment with Dr. Glenn, a head & neck oncology surgeon, for the following day, right before my appointment with Dr. Rodriguez.
Fortunately Dr. Glenn was nothing like the nurse I spoke to on the phone. He listened, was relaxed, and answered all my questions. We scheduled my surgery for April 7, right after Jesse & I would get back from our already planned Mexican vacation. Before my surgery, Dr. Glenn wanted to get a CT scan of my neck to get a good view of all the lymph nodes he needed to remove. I was able to get that the same day, right after my appointment with Dr. Rodriguez.
Being a nurse and a patient has its blessings and its drawbacks. It's wonderful that I have a leg up on understanding the terminology and basic procedures, and knowing how to get what I need from doctors and their staff. But sometimes when doctors find out you are a nurse they just breeze over everything like you already know it all. Even if I do know it, sometimes as a patient I just want you to talk to me like a normal patient. I still need my hand held a little.
Unfortunately Dr. Rodriguez treated me exactly like a nurse - and coupled with her thick accent and rapid speed of talking, I left the appointment more confused than I had arrived. I hoped that the stress of it all was just getting to me, and that Jesse had gotten more than I had. But he was even more lost than I...he had no idea what she was talking about. Since I had another vacation planned for May, and I'd have to be without any thyroid hormone for at least 4 weeks before my radioactive iodine treatment, we decided I'd take thyroid hormone medication until I got back from vacation, then go off for four weeks, and then have my radioactive iodine treatment in July. She also mentioned a low-iodine diet that I'd have to be on for at least two weeks before treatment. I wasn't sure what exactly that would involve, and I let her know that I was vegan. I am certain she had no idea what that meant because she said, "that is going to be very, very hard for you then."
Turns out {besides a bunch of other restrictions} the low-iodine diet doesn't allow any dairy or egg yolks {whites are okay}, and only 6 ounces of meat per day, so in reality being vegan only makes a low-iodine diet that much easier.
With all of this new knowledge of my diagnosis and the treatment to come swirling around our heads, Jesse and I jetted off to Mexico for a relaxing vacation in Cabo. Maybe some people would have canceled their trip and had their surgery right away, but we both knew we needed this time together to relax and prepare, because our lives were about to change forever. And with the diagnosis of papillary cancer, it didn't seem that postponing the surgery an extra week would make a whole lot of difference health-wise.
And so begins the journey recorded on this blog. If you don't want to read every entry, here is a brief overview:
On April 7, 2011, I had a total thyroidectomy and right neck dissection {removal of the lymph nodes} with Dr. Glenn at Virginia Mason.
Shortly after, my pathology results came back showing that part of my tumor was poorly differentiated thyroid carcinoma. {Don't google it. Most search results are scary.} Many scientists, as well as Dr. Glenn, believe that papillary thyroid cancer can "go bad" and become anaplastic thyroid cancer, or undifferentiated carcinoma, a lethal cancer with survival rates approaching 0%. He believes that poorly differentiated carcinoma is the intermediate step in becoming undifferentiated carcinoma. He says that I am so lucky that we got it out when we did.
The scary part was that most of my questions were answered with, "we don't know," and "we haven't decided." My cancer is rare and more aggressive and less responsive to treatment. Every doctor has given me different numbers, recurrence rates, and statistics. So this journey became not about one with a treatment path laid easily before me, but a journey full of decisions that had to come from my heart, my own research, and my wishes for healing. My journey became as much of a personal transformation as it did a journey about curing my cancer.
