The Back Story

The short version of the story is this:

I have cancer.

Here is the long version:

Last summer I began to have pain in my hips and low back. It was intermittent, and I chalked it up to all the stressors and changes in our lives (physical strain of pregnancy and birth, moving into a new home, etc.). When it didn’t go away after about a month, I made an appointment with my doctor, who referred me to a physical therapist, assuming it was musculoskeletal pain. I saw the physical therapist and did my exercises semi-regularly for about two months, but failed to see any improvement. Sometime in October I fell down the stairs, landed hard on my right hip, and the pain miraculously went away for a week or two! Unfortunately it came back… and came back with a vengeance. What had previously been nagging, somewhat bothersome pain that came and went throughout the day became very severe, constant pain that kept me up at night. I tried a large variety of painkillers with no relief. I tried seeing a different PT and committed myself to the exercises and advice she gave. The pain just continued to get worse. I had a few tests that revealed some potential sources of pain (bulging discs in low back, slight labral tear in right hip, SI joint degeneration), but none of them were flagged as the answer. My doctor repeatedly tried to convince me that my pain was due to stress, and could be solved by exercise, stress reduction, and guided meditation. I could definitely benefit from all of those things, but it just wasn't that kind of pain!

By the beginning of February, I was in so much pain that I was unable to do much of anything (including speak, sit, stand, sleep, or carry out any basic life activities.). It was absolutely excruciating, and nothing that I was trying was able to help. When it got to the point that it was absolutely unbearable, I made an appointment to see the first doctor I could get in with at my practice, and finally turned the corner towards figuring out what was wrong. This doctor said that the nature of my pain seemed to be internal, rather than musculoskeletal. My symptoms were similar to appendicitis or a kidney stone, but my blood and urine work weren’t consistent with either. Everything still looked normal. I made an appointment to see my regular doctor the following week, after receiving some very strong drugs that (FINALLY!) helped the pain. She continued to insist that nothing looked wrong, and asked if I was ready to stop looking. I told her that I just couldn’t believe that this degree of pain could be caused by stress, so we moved on to the next test - a CT scan. This is were things stopped looking normal. The lymph nodes throughout my entire abdomen were extremely enlarged, and showed a pattern consistent with some type of metastatic cancer.

On March 8 I had a laparoscopic surgery to remove several lymph nodes from the back of my abdomen for biopsy. Although the CT report mentioned a metastatic cancer, I thought it was more likely that I had some type of lymphoma, as it runs in my family. After the surgery, the surgeon reported that he thought the tissue they removed looked like lymphoma, and all the other organs they visualized looked normal. (It was a bit unnerving to hear the surgeon say that they did a little extra digging and got a good look at all my internal organs!) So I was fully prepared to hear that I had cancer, but was not prepared to hear what type...

I was diagnosed with a rare form of cancer - neuroendocrine carcinoma (also called a neuroendocrine tumor or a neuroendocrine neoplasm). The doctors do not know where the original tumor is in my body, but guess that it is probably in the small bowel. The cancer has heavily metastasized to the lymph nodes throughout my abdomen and back, causing them to be greatly enlarged and inflamed (and very painful!).

I met with a oncologist at UNC, who recommended an aggressive oral chemotherapy regimen, and suggested beginning as soon as possible. Because of the rare nature of the disease (and no gold standard for treatment), I decided to seek out a second opinion before beginning chemo. I am in Boston today to meet with a doctor at Dana Farber, as their cancer institute probably sees the most of this type of cancer.

I am feeling positive, but am still very much in need of good thoughts and prayers, both for myself and for my family! It’s been a rough ride for everyone, but we are grateful to finally be getting answers and moving forward. Regardless of what we learn in Boston, I will need to begin treatment very soon, as my cancer continues to grow and my symptoms continue to worsen. We won’t know my prognosis until we receive how the cancer responds to treatment. The oncologist said her best guess was between two years and a normal lifespan (most likely scenario: 5-10 years). We are very grateful and blessed to have an incredible support system of family and friends, and thank all of you for your love and prayers during this time. If you are so inclined, we would be very grateful for prayers for guidance for our family and our physicians as we make treatment decisions over the next few days.

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Much love to you all!