How One Woman's Cancer Story Saved my Daughter's Life
If I hadn’t found the open letter about Hodgkin's lymphoma on Nutmeg Aspirin, my daughter’s cancer might not have been diagnosed until it was too late. Steroid creams, steroid shots, a restrictive, impossible-to-follow diet that caused unnecessary weight loss — nothing was working. Doctors were dismissive, and I was watching my child lose all joy in life. One day I found her curled up in her bed crying, bleeding from the insatiable itching. I cried, prayed for her, and began a relentless quest to find out what was wrong.
I researched all the diseases that could cause this: eczema, lupus, psoriasis, allergies, and lymphoma, and I remember thinking that it couldn’t be cancer. Anna had swollen lymph glands on her neck that hurt when touched – most websites say if it hurts it’s probably not cancer. Plus, Anna eats healthier than anyone in the family and exercises on a regular basis.
Rejecting the possibility of cancer, I told her to try some essential oils for the itching. Peppermint oil offered some relief, but it only lasted for a few minutes. When that didn’t cut it, I told her she needed to go to the dermatologist.
I will never forget that first dermo visit. When I asked about Anna’s swollen lymph nodes, the dermatologist laughed and told me to stay off the internet. We tried a few more doctors and even with my worried-mom pushiness, all they did was run bloodwork. Her bloodwork was normal except for a few borderline areas – it didn’t give us any answers.
It wasn’t until I found Diana Shoolman’s open letter that I started seriously considering the possibility of Anna having lymphoma. It scared me, and at first, I told myself it couldn’t be; Anna was only 31 years old and, aside from this new itching issue, perfectly healthy. But I kept being drawn back to Diana’s article. I read it at least 10 times before I reached out to her. (She had generously left her e-mail address in the comments section of her article.)
Diana responded right away with her phone number, and I called her immediately. We spoke for an hour and a half; lo and behold, my daughter’s symptoms matched Diana’s exactly.
Diana directed me on how to get it diagnosed; I needed a CT scan to start and then, if the CT scan confirmed cancer, a PET scan and a biopsy of the lymph node. After my call with Diana, I spent three hours calling different doctors and finally got my daughter an appointment for a CT scan. I started crying when they asked for Anna’s insurance information because I knew that meant they were really going to do it.
After that, everything moved quickly. The doctor ordered a CT scan first, followed by a biopsy two days later, as Diana had said.
Anna didn’t believe she had cancer, she was just doing the tests so she could rule it out. But an hour after we returned home from the CT scan, the doctor called and said the scan was suspicious of lymphoma.
I will never forget the pain and horror in my daughter’s eyes when he told her. The doctor said he would put in a port for chemo when he did the biopsy. She didn’t know what that was and misunderstood that she’d begin chemo in two days when she went in for the biopsy. On top of the diagnosis shock, she was also stressed about not having time to plan for hair loss and all the other things to consider when going through chemotherapy.
The hospital we went to for the biopsy was an hour away by car. Anna cried the whole way there. Afterward, we had to wait a week for the results, which was grueling. Fears and questions cycled through our minds: where is the cancer? is it everywhere? can it be cured?
We had read that Hodgkin's lymphoma is one of the more curable cancers, so when we weren’t questioning everything, we were praying that if it had to be cancer, it’d be that type.
Indeed, it was confirmed to be Hodgkins on June 5th, five months after the itching began, and a week later, found out that the cancer was classic stage 2. Feeling both relieved and scared, we found a wonderful doctor at UT Southwestern in Dallas. After four rounds of chemo, Anna is in remission now.
Looking back, I am actually grateful for the horrible itch because it led me to Diana’s article on Nutmeg Aspirin. Many people with Hodgkins don’t get the itch, just night sweats, and fatigue, which are usually brushed off until it starts pressing on their lungs. I will be forever thankful that Diana shared her story – I hate to imagine what could have happened if she hadn’t.
There needs to be more awareness about Hodgkins. We’ve all seen pamphlets about skin cancer and breast cancer. You know, the ones that tell us to go to the doctor for a wound that doesn’t heal, a suspicious mole, or a lump in the breast? I would like to see pamphlets and campaigns that tell us to see the doctor if you have a swollen lymph node that doesn’t go down after a week, a cough that doesn’t improve, night sweats, or an unexplained itch with no rash. Because it could be Hodgkins – and the longer you take to diagnose it, the worse it gets and the harder it is to treat.
Anna was relatively lucky since she caught it at stage 2 and “only” needed 4 rounds of chemo. A lot of people don’t get diagnosed until they have stage 4 Hodgkins, and they need many more rounds of chemo as a result.
I am still angry that my daughter had to suffer as long as she did, but I am working through that by sharing her story. Reflecting on what I’ve learned from this experience, here are five pieces of advice:
Listen to your body. Don’t dismiss your symptoms.
Get a second opinion.
Demand answers if you are suffering or just intuitively know something is wrong.
Don’t let anyone tell you to stay off the internet.
Connect with others who are going through the same thing or who have already come out the other end. There’s a lot to be learned from personal experiences.