Rundown

I wrote this really quick rundown of what 2008 was like for me. Again it was quick, but at least it’s something:

In 1996 I was diagnosed with Lupus (SLE) which basically went into remission a few years later. I was not taking any medication and generally felt fine over the last 10(ish) years.

In October 2007 I had some mysterious bruising appear and the thought was that my platelets were down so my rheumatologist put me on a low dose of plaquinel.

In January 2008 I developed a rash on my right wrist, which resembled hives. Originally it was suspected that I picked something up from the gym or it was some sort of reaction to a virus, I don’t generally get hives. Around mid-late February I was diagnosed with rheumatic fever which is due to the fact that I was spiking fevers almost daily. The fevers continued throughout February-June. During that time the hives progressed to my entire body.

In May I admitted myself to New England Medical Center/Tufts ER with a fever of 104/105. I was there for a week. This is where and when they noticed my swollen lymph nodes. Chest xrays showed active lymph nodes around my heart and lungs, the lymph nodes on my neck were swollen to a noticeable degree, under each armpit were swollen to at least 2 centimeters. They performed surgery taking out one from my left armpit. They told me it was Hodgkin’s, but a few weeks later the pathologist said it was not, but that all the cells were abnormal, but they were not sure why. My health stayed the same, so they did another surgery and took two out of my right armpit. This time the pathologist came back saying that it was Hodgkin’s. The last diagnosis was on Sept 2, 2008. On September 5th I got a PET scan and this upcoming week I will have a bone marrow biopsy as well as a CT scan to determine what stage the Hodgkin’s is in.

My doctor, Dr. Cancer sent the lymph nodes off to 3 pathologists at Beth Israel for a second opinion. As of September 5 they could not determine if it was Hodgkin’s or not, however, they did ask for more of the lymph node to test. They too were clear that the cells were abnormal, but were unable to say 100% that it was Hodgkin’s disease. This is the same conclusion the pathologists at Dana Farber had – inconclusive.

Today is December 29 and there is still no definite answer. I’ve since been in the hospital at least three more times since September. I had IVIG treatment for the ITP and to help with my forever dropping platelets. Two ER visits were for platelets at a count of 1,000; the lowest they had ever seen at the hospital. I had a splenectomy in November to counteract these dropping platelets, it worked. A CT scan at the end of November showed that I still had many active and enlarged lymph nodes, but no one wanted to take any steps until I was healed from my splenecomy.

As of today, I feel great. Aside from some rather trivial annoyances, my life is a lot better. Will I need another surgery for a lymph node removal? Will I need chemo? I guess all those answers will have to wait until 2009!

UPDATE: October 16, 2009.
Wow, almost a year has gone by since I updated this? As you may know by now, my three diagnoses were wrong. It was lupus all along or so they say. Half of the doctor’s are still skeptical. I have no idea how I feel, I just know that I currently do not have cancer. I never had to go through chemo. I live with my best friend and life is really not so bad, at the moment.

But now what do I write about in this thing…

    About

    Hello. My name is Danielle (Dink to my friends). On 09/02/08 I was diagnosed with Hodgkins Lymphoma. This blog is a place to keep friends and family updated on how I feel, treatment, and life in general.

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