Almost had a melt-down again last night…. but by the time the evening was over, it was almost a joyful experience!
I received a note from a young woman named Heather, as follows:
I would like to talk with you. I was diagnosed with SPTCL yesterday. I read your story and I feel exactly the same. Like your story, I am not showing signs of being sick. My white blood-cell count is normal at this point. I have no lesions on my body. I feel extremely healthy. I can not believe that I have to do Chemotherapy. I am not presenting any of the “normal” symptoms that this disease comes with. It just doesn’t feel right. I would like to talk to you about your experience as I am getting ready to go through the same thing.
I almost fell off my chair. I still get chills when I read Heather’s note!
I immediately sent her my phone number — and last night we talked for about a half hour. By the end of the conversation I was shaken to the core. As I explained to my husband, I felt like I was talking to myself — the same conversation I might have had with someone else who had walked in my shoes in 2004. It was scary, and euphoric all at the same time.
Why? Because both Heather and I think there is a good chance she, too, has been misdiagnosed with subcutaneous panniculitis-like T-cell lymphoma.
She did have a biopsy, like I did. She was told by her primary care doctor that “a team of pathologists” had reviewed the biopsy, and SPTCL was their conclusion. But she has no other symptoms (nor did I) and all the “classic” lymphoma symptoms are missing: chills, night sweats, hot flashes. Her blood tests are clear, as were mine. She does have other lumps, as I did.
I’ll keep you posted on what we learn about Heather’s situation. I’ve provided a few suggestions for cutting to the chase, getting her to Dr. Jaffe at the NIH, and hopefully proving that she, too, has been misdiagnosed.
But here’s how I feel today: euphoric! Because if I never help another patient for the rest of my life, helping Heather through this difficult time will have been worth my efforts.
Wish us luck!
Find a follow up to this post here.
Updates and SPTCL resources will be found on the new SPTCL page — link here.
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