It has been a very long journey getting to my final diagnosis of Hodgkin's Lymphoma. I started feeling pain in October 2013. It was a strange kind of pain in the middle of my chest and then in my back near my shoulder blades. I didn't think much about it, other than maybe I was lifting weird, sitting different, etc. Then on October 30, 2013 I had a very painful attack and thought I was having a heart attack. At this time I lived near San Francisco for work and would travel home to the valley on the weekends. I called my husband about this terrible pain. Nothing would take it away and it felt to be getting worse. Not wanting to be one of those middle aged women that ignore signs, I called 911 and went to the hospital. My husband met me there as quickly as he could. The ER doctor was very puzzled with my pain. All tests continued to come back negative, reflecting nothing was wrong. She finally prescribed pain killers and sent me home.
I followed up with a doctor the next day. I was prescribed a daily dose of Pepcid and this began my first adventure of multiple tests for my esophagus and GI tract. I was still having intermittent pain and was not satisfied with the results the doctor gave me so I changed doctors for an additional opinion. The esophagus and GI tract adventure continued. I met with a Gastroenterologist and was sent to have my throat scoped. Of course, this came back with beautiful pictures of my esophagus and no issues. I was then sent to have two more tests. One measured the esophagus contractions when I swallow and the other measures the PH from my stomach. Again all healthy. I again met with the Gastroenterologist and he suggested I speak with a psychiatrist for pain management. I did meet the psychiatrist and told him that speaking about pain management does not make sense when no one can tell me what is wrong. I then made an appointment with my PCP and after a detailed conversation he ordered an MRI for the next day. I thought, finally, we are getting somewhere.
February 6, 2014 - MRI showed a large mass in the middle of my back at the shoulder blades (T4-T6 vertebrae). I met with the infectious disease doctor February 10th. I was sent for multiple blood tests. Oh and guess what, everything came back normal. February 25th I was sent to have a bone biopsy done on my spine. I will just say this is legal torture. You can not be completely sedated and I am fortunate to have dense bones. Hence, there was a chisel and mallet procedure given to my spine. Very painful.
Before my next appointment I noticed a lump on my chest and emailed my ID doctor. I followed up with him on March 5th and was given a diagnosis of osteomyelitis. No cancer was ever mentioned at this time. (they did not test for cancer . . . . gggrrrrr) and he did not seem concerned about my lump. I began eight weeks of antibiotics and pain medication for the bone pain.
I had a normal follow up appointment with the ID doctor on April 1 and was given instructions to have another MRI completed on March 6th. (Whew, this is getting long. I don't blame you if you become bored. This is more for my records than anything.)
I felt like I was making progress. I could occasionally enjoy a glass of wine again without having pain and was able to sleep all night. But then I plateaued and felt like something just was not right.
I soon discovered another lump near my right clavicle at the base of my neck. When I emailed my ID doctor he suggested I make an appointment with my PCP to discuss. May 6th I had my MRI and appointment with PCP. My PCP immediately gave me a chest x-ray and then a full CT Scan and made an appointment with a hematologist/oncologist for the next week. He was determined to find out what was going on. After the CT Scan the radiologist requested an immediate biopsy of my lymph nodes. That was a very long day. Home after 7pm. WOW
My MRI was reviewed on May 13th and the mass had not decreased but grown now covering the T2-T6 vertebrae. That day I received a phone call telling me I had Hodgkin's Lymphoma. Oncology was the next day.
My life since then has been one doctor appointment after another ensuring my heart and lungs can take a long 6-8 months worth of chemo therapy.
Today I know I have stage IV, Hodgkin's Lymphoma and will live the remainder of 2014 having chemo treatments every two weeks.
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