I have always liked to write and so in a way, it would seem logical for me to put pen to paper (or fingertips to keyboard) during this time. And yet, for a multitude of reasons, writing about my experience with cancer has seemed at best unappealing and at worst, impossible. There are ways in which it feels self-indulgent and melodramatic. There are times I think my words could never do justice to the depth and weight of this crisis. Still, there is at least one aspect of the situation I want to be sure to document and that is the story of how I got to my diagnosis. I want to write it all down now because there are conversations and dates and symptoms that are vivid today but will surely fade in time. I imagine that someday I’ll want a record of how this all went down. I’m sharing the story because a lot of people have asked how this happened and whether my diagnosis came as a surprise to us. As you’ll read, it didn’t and in many ways it was a relief to find out there was something wrong, especially something so curable, after years of wondering.

Sometime around the time Dexter was born, December 2012, I started experiencing significant joint pain. I had some of the same issues in my first trimester but post-partum it was more than just feeling achy. I remember sitting on the floor with him and realizing I was unable to get up or trying to buckle him into his car seat while my wrists screamed at me to stop. At my six-week check-up with my OB, I mentioned this. She was sympathetic and worried but also told me that childbirth can do some pretty crazy things to your body, which any mother will attest to. “Let’s keep an eye on it,” she told me. I would hear that from a lot of doctors over the next few years.

Shortly after, I discovered a couple of lumps in the left side of my neck. I don’t remember the first time I felt them but soon, I would find myself subconsciously touching those little marbles nestled into the hollow of my collarbone regularly, almost like a nervous tick. I brought this discovery, along with the joint pain, to my general practitioner. I’d been seeing her for a couple of years, as had several friends and family members, and we all agreed that while she was funny, smart, and caring, she seemed to jump to conclusions quickly and wasn’t a particularly good listener. In this case, she felt the lumps, determined they were too small to be worried about, and gave me a general lecture about the importance of maintaining a healthy lifestyle.

The next time I had a doctor’s appointment, it was a year or so after Dex’s birth and I went to see my regular gynecologist. I adored this doctor but sadly, she was about to retire and this would be my last appointment with her. Despite the fact that it was completely out of her wheelhouse, I asked her for a second opinion on the lumps. She seemed concerned and told me to go back soon to talk to my general practitioner, since at this point it had been a while since I’d seen her.

Over the next year and a half, I would talk to my general practitioner at least three more times about the joint pain and lumps, as well as some other symptoms that were starting to present. I was skinny; skinnier than I’d been since early high school, tired more than seemed normal, and susceptible to any cold that came within a five-mile radius of me. Basically, she brushed me off, telling me again to “make sure I was taking care of myself.”  People say this a lot to new mothers and I think it’s good advice. Mothers, women, and people in general tend to overextend themselves. It just wasn’t the solution to this problem.

If you’re starting to feel like this story is not much more than a list of my symptoms and the times I talked to doctors about them, you’re right. There’s more to come and it gets a little worse. Some of the people close to me are mad that none of the doctors took me more seriously. For whatever reason, I don’t feel wronged or upset in any way. I think that it was hard to discern the seriousness of a lot of my symptoms and doctors simply can’t catch everything. Also, if I could do it over again, I would spend less time with those doctors telling them stories about my cute baby and finishing all of my complaints with, “I mean, it’s bad but not that bad”.  I could have been a much more confident advocate for myself and next time, I will be. I’m not blaming myself for anything but as Maya Angelou says, “When you know better, you do better.” (Full disclosure, I only know that quote because Oprah used to say it on her show all the time.)

By spring of 2014, I was really rundown. I decided to start seeing a naturopath, in the hopes that she could offer a different perspective. When Dex was born, it took about a week for us to decide we were ready for another. We waited longer than that to start trying but by the time I went to the naturopath, it had been a while and I was getting worried about my fertility, in addition to everything else going on. She ran extensive blood work that didn’t point to anything specific but did show I was having autoimmune issues, which helped explain my joint pain. She also diagnosed me with the Epstein-Barr virus, which explained why I was feeling sick all the time. I now know it can also be linked to Hodgkin’s Lymphoma. During this time I took a slew of herbal supplements in the hopes of getting pregnant and feeling better. This doctor really listened to my concerns and wanted to help, but in the end, she didn’t connect the dots of my illness and so the treatments she provided weren’t effective.

Six months later, we moved to Hawaii for Chance’s work. It was a magical time in our family’s life although we were still aching to add to our family. Then, in January 2015, I found out I was pregnant! One thing about my joint pain is that while it has come and gone over the years, it is by far the worst during and after my pregnancies. This time, it was actually the first hint I had that I was expecting and it was much more severe than it had been when I was pregnant with Dex. I mentioned it to my new OB at our very first appointment and he referred me to a rheumatologist.

10 weeks into the pregnancy, I began seeing the rheumatologist. He did blood work and like my naturopath had, saw an elevated ANA level that worried him but didn’t see any indication of a known autoimmune illness, like lupus or rheumatoid arthritis. He prescribed a very low dose of steroids that immediately took away my pain and suggested we do more extensive testing after I delivered the baby since options are limited during pregnancy.  I asked him about the lumps in my neck and he suggested I get an ultrasound of the area. He sent me directly from his office to a nearby radiologist where the scans were done.  A week later, I went back to see him and he confirmed our plan to follow up on the joint issues after the baby was born. He did not share any results from the ultrasound but told me I should see an ear, nose and throat specialist for further examination. He told me his office would set me up with an appointment with his colleague. Two weeks later, when I hadn’t heard anything, I called. The receptionist wasn’t sure what was going on and said she’d get back to me. A week later, I called again. Still, nothing. At this point, I just sort gave up. I figured if the ultrasound had shown anything alarming, the rheumatologist or radiologist would have told me. No news is good news, right?

As time went on, I started to have some concerns about my OB and the hospital he worked out of. I don’t know exactly how to explain it other than to say that the Hawaiian medical system feels very different than Seattle’s. At 30 weeks, I decided to switch to a midwife at another hospital across town that seemed like a better fit for me. My new midwife was (is!) wonderful. As had become my practice with any new doctor, I talked to her about the joint pain and lumps in my neck. Tumor growth is fueled by estrogen and so by this point, the two marbles had merged into one hard, egg-shaped lump that stuck out about a half of in inch. My midwife was by far the most concerned of any doctor to date and suggested a biopsy. In order to get me in as quickly as possible, she ended up sending me to a general surgeon who specialized in hand surgery, which seemed funny given my issues, but I am forever grateful to her and that surgeon. Before I saw the surgeon, he requested the records of the ultrasound that had been ordered in March by the rheumatologist. What he found was alarming: the report indicated the tumors looked to be lymphoma or leukemia and ordered an immediate biopsy. I have a hard time understanding how this information wasn’t shared with me at the time. My only guess is that the rheumatologist didn’t actually read the report since the type of doctor he referred to me doesn’t treat cancer. With that said, I am overwhelmingly thankful I didn’t find out about all of this so early in my pregnancy. I have not inquired and don’t want to know what it might have meant or what decisions I would have been asked to make.

On September 8th 2015, at 37 weeks, my pregnancy was full-term. On that same day, I sat in the hand surgeon’s office while he explained as best he could what Hodgkin’s Lymphoma is and how my life was about to change. Without an appointment, we went from his office directly to the midwife’s. She was off that day but had thoughtfully arranged for us to meet with her boss, if we happened to show up in tears.  It was a stressful time because, well, cancer, but also because we knew we wanted to return to Seattle for treatment. At that point in a pregnancy though, it’s no longer considered safe to fly, nor is it recommended for at least eight weeks after the baby is born (to protect their health). The OB was firm that if we wanted to go home, she could give us medical clearance but we needed to do it right away. My memories of that day are fuzzy but I have a distinct memory of Chance asking, “When you say right away, do you mean today or tomorrow?” and her answering, “I can give you until tonight.” Nine hours later, we were on a plane with as much of our life as we could fit in duffle bags.

During those nine hours, the OB in Hawaii contacted the OB in Seattle who delivered Dex and asked her to accept me as a patient again. Thankfully, she said yes. We landed at 6am, went to see her at 11am and returned at midnight so I could be induced. Shiloh was born at 4:29pm on September 10th. Both of my labors were hard and beautiful in their own ways. This one felt scary in a way it hadn’t before though. My sweet husband and our wonderful nurse gave me the strength to get through it, although it feels like I just barely survived.

The rest of our journey has been well documented by Chance on the blog, which will continue throughout my treatment. I’m so grateful to him for keeping everyone informed and to those who read for caring about our family. Dr. Kaplan and the nurses at the Swedish Cancer Institute are more than making up for any mistakes that were made or details that were overlooked prior to my diagnosis.  While our story is “to be continued”, I already know the ending. You do too.

---Anna

**As a clarification, it is still not known whether the joint pain I’ve experienced is linked to my cancer. We are working with a new rheumatologist (who just so happens to be Dr. Kaplan’s son-in-law) to figure out that piece of the puzzle. So if you have joint pain, don’t worry, it doesn’t mean you have Hodgkin’s Lymphoma!

Our Story

Anna and I have known each other forever. We grew up on San Juan Island and our mothers have been close for as long as Anna has been alive (I'm just a little older...).