I'm currently in the thick of round 4 and hanging in there. I did a few things differently this time, and some things seem to be a bit better. But I'm very tired. The fatigue is cumulative and I'm just exhausted most of the time. Please pray for Sean. The fatigue is cumulative for him, too, and he's carrying a lot of the burden. Hoping for some good days before the next round.

I wanted to share my diagnosis story and reflections for those who are interested. For those who aren't into medical details, this one may not be for you.

Nearly 12 years ago when we were still living in Alabama, I was experiencing pain and went to an urgent care one Sunday morning. They thought that it was a kidney stone and sent me for a CT. When the CT came back, they sent me immediately to an oncologist. Some lymph nodes in my abdomen were enlarged, and they suspected lymphoma. I had a PET scan, which also indicated lymphoma. I was sent for a surgical biopsy, which came back negative for lymphoma. My reply when they told me was, “Great! So what is it?” Their response? “We don’t know! See ya!” They thought that the lymph nodes were just reactive and would go away. I had a repeat CT a couple of months later. They had not gone away. 

Shortly after, we moved up here. I did not let this go. I believed that these lymph nodes were telling me that something was wrong, and I was determined to figure out what. I knew that I could not even think of trying to have a baby until I addressed this issue. I saw a new oncologist who sent me for follow up scans over the years. I saw a gastroenterologist who scoped me up and down. I saw a rheumatologist who ran every test for every autoimmune disease they could think of. I saw an immunologist who ran all the relevant tests. I mentioned it to every other specialist I saw (endocrinologist, gynecologist, etc.). The only test that ever came back abnormal was my ANA test, which just indicates inflammation and doesn't really indicate any specific disease. No one could come up with anything, and I was tired of being on the specialist merry-go-round. I decided to take a different approach and see if I could get this inflammation to go down. I knew that chronic inflammation was bad. I went to the functional medicine docs and did everything they asked of me. I changed my diet and lifestyle, took thousands of dollars’ worth of supplements, I did IV chelation therapy, acupuncture, infrared sauna, chiropractic, the works. In the end, the lymph nodes were still enlarged (but stable), and the inflammation was still there. But I felt good. I felt strong. I decided that I wasn’t going to let this dictate my life anymore. So I stopped the scans (but continued seeing my oncologist annually for labs and an exam), and we worked on growing our family. We were blessed with our girls. After Cara’s birth, I developed an infection and was hospitalized for a bit. During that time, I had a number of scans and got a glimpse of what was going on with the lymph nodes. They were mildly increased in size, and I was concerned enough to drop the scans off to my oncologist. I asked if she could contact me if she was concerned. I didn’t hear from her. 

Fast forward to this fall and winter. By Christmas, I was having some symptoms that I could not ignore. Bowel symptoms, very tender abdomen, etc. I could feel a mass in my abdomen, and I never could before. There was a lot of pressure in this area, and it got quite uncomfortable. I also felt a throbbing or pulsating in my whole abdomen. I kept saying to Sean, "Something is really not right." I am pretty in tune with my body, and I just knew that something was off. But I didn't immediately suspect the lymph nodes. I wasn't sure what was going on. In January, I went to my PCP. She also felt the mass and suspected my gallbladder. She sent me for an ultrasound. It wasn’t my gallbladder; it was the lymph nodes. (During the ultrasound, I asked the tech if I was having a gallbladder emergency. She said, "No, I don't think so. But you've got a lot going on in there with those lymph nodes." I knew immediately. I drove straight over to my oncologist's office and told them that I had just had an ultrasound, and I wanted to sign a form so that they could view the results. My mom had gone with me to the ultrasound, and I then got in the car and cried because I knew in my heart that it was cancer.) The oncologist sent me for a CT. Yes, the lymph nodes were rapidly increasing in size. There were also other areas of concern, like a spot on my spleen, which I could also feel (as mild pain in that area). I went for a fine needle biopsy and a host of labs. Labs were all normal, including a leukemia/lymphoma “liquid biopsy.” Biopsy results started to come in abnormal but inconclusive. It showed as negative for t and b cell lymphoma. At my follow up, my oncologist was stumped. I left the office not sure what to do next, but she said that she was going to refer me to a group of surgeons at the Cleveland Clinic who could biopsy it again. (That referral never went through.) A few days later, more of the pathology report came back – they had sent it to Cleveland for further testing - it was positive for b-cell lymphoma, but they didn’t know which kind. As soon as those results hit my online portal, I decided to call the Cleveland Clinic cancer center for another opinion. (Did you know that the Cleveland Clinic won’t see you if you don’t have a diagnosis? I learned that 11 years ago. As soon as I got the diagnosis, I called and got in quickly. They’ve been great to work with since then.) I went for a PET scan. Uptake score was very high. I went to Cleveland for an appointment with a lymphoma specialist, who I really like. I then went to Cleveland for a core needle biopsy. I got an echo to check heart function before treatment. I got my port placed. The pathology finally came back as an aggressive diffuse large b-cell lymphoma.

Important to note: at no time did I have any of the classic signs of lymphoma (other than enlarged lymph nodes). Classic signs include: fever, drenching night sweats, itching, fatigue, loss of appetite, shortness of breath, and rapid, unintentional weight loss. The fact that I had none of those symptoms and that all of my labs were normal and the fact that the pathology was questionable really made me question the lymphoma diagnosis at first. But, in the end, that's what it was.

So, in short, I have likely been living with follicular lymphoma for 12 years, maybe longer. I don't know why it didn't show up in the biopsies. It's frustrating. But it likely wouldn't have changed anything. Follicular lymphoma is not treated unless it's causing issues. This surprises a lot of people, but they've found that early treatment doesn't change anything. Still, it would have been nice to have a confirmed diagnosis. It's strange to think that I've had cancer for so long. And that I had it while I was pregnant twice. But, again, if I had known, I think that my anxiety over these last 12 years would have been higher than it was anyway, and I may have even been too afraid to try to conceive. In the end, it worked out the way that it should have.

The journey has obviously been a long one and incredibly frustrating. I really did all that I could think of to avoid this in both conventional and functional medicine. I at least hoped that I'd catch it early and could avoid aggressive treatment. But when it transformed, it transformed quickly and became very aggressive.

Since my diagnosis, the algorithm has been algorithming and I get a lot of cancer content. I find that, like everything else these days, the comments are very black or white. There are some people who think that cancer is simply genetic and getting it is just luck and the only thing that you can and should do is early screening and conventional treatment. There are other people who think that cancer is solely based on diet and lifestyle and environment and that it’s within your control to prevent (and treat) cancer. The truth, of course, is in the middle. Cancer is complex. There are definitely genetic components to it, but diet, lifestyle, and environment play an important role. It’s not all luck, but it’s not all within your control either. There’s a lot of shame on social media – like if you got cancer, it must be your fault. You either didn’t get your screening in time or you didn’t eat or do the right things. This is a very common protective thing that people do. They are scared of the thing, so they find a way to explain why someone else got it so that they can feel secure that they won’t. It’s understandable. And, look, of course, people should participate in early screenings, and they should do what they can to promote health through diet and lifestyle. And still, some people may get cancer. Take me, for example. I was being monitored by an oncologist for years. I was getting screened. I was working with a functional doc for years to reduce my cancer risk, metabolic dysfunction, and insulin resistance (which drives cancer). I can’t say that I did everything possible because I didn’t. Some things were out of reach financially or geographically, some were unreasonable for other reasons, and in some cases, balance was necessary. But I did a lot. More than most people. And here I am. My point is this: when you find the urge to say something like, “Well, so-and-so got cancer because they [fill in the blank],” pause. First, you likely don’t know the whole story. Second, examine your urge to do this. It’s likely because you want to feel secure that you won’t succumb to their fate. And, of course, you likely won’t. But if you do, you need to know that it’s not your fault. And, learning to sit with the discomfort that this might happen to you even if you’re doing everything “right” is an important thing to do. It will allow you to rest on your faith in the one who will lead you through all of your days, whatever they may hold and however many there are. It reminds you that you are not in control.

Could I have prevented this? I don't know. Is it possible that everything that I did kept me healthy for longer than I would have been otherwise? I don't know. Is there anything I can do going forward to keep me in remission longer? Maybe, but how will I know? There's a huge amount of unknowns here. I'm going to try my best to live a healthy, balanced life taking both my physical and mental health into consideration. I'm going to continue to take the best of both conventional and functional medicine and ask good questions and pray and trust my intuition. I'm going to be a good steward of however many days I'm given even if they end up being far fewer than I would like. And I'm going to focus on glorifying the God who is in control of all things, even the ones I like to take credit for.