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Holly's Support Network
11/30/2016 Latest post:
I was dragging. I had night sweats, hot flashes, and strangely sensitive and itchy skin. I thought I was going through menopause. Little did I know what I was experiencing were “B” symptoms.
January -March 2009
For a while I thought I just had a strange pimple in my cheek, by January it had grown to the size of a gumball. I had it checked by the GP and she sent me on to surgery to have it removed. I waited for the results for two weeks and then saw the surgeon. She said, “The bad news is you have cancer, the good news is that you have the good kind of cancer.” Shocked of course I asked her, “Did you get all of it?” “ Yes, but It’s not that kind of cancer. You have a blood cancer”.
March 2009 onward -2013
Healing from the surgery took a long time. They opened up one side of my face to get the tumor and in the process bruised the nerves of my face. Half of my face was completely paralyzed for at least 6 months, all better now.
I was referred to the Oncologist and was told that I had been diagnosed with Indolent (slow growing) Marginal Zone Lymphoma of the Nodal variety (NMZL-NHL). The process of “staging” included an endoscophy, sinus scope, and bone marrow biopsy. I was stage 1. This disease is “treatable” but not “curable”. I was given Rituxumab, not “Chemo”. It is made out of cloned mouse antibodies, which are designed to go after the cancer. Now I am part mouse!
By the end of May I had finished my treatment. I had gone weekly, for four weeks to the infusion center. Gradually I started feeling “normal” again.
2010 Monitoring return of disease is done by scans and blood tests. I got so well I was able to train for and climb the Grand Canyon!
I started to have various aches and pains in hips and knees. I tried to get exercise but my muscles and joints got so painful that I couldn’t keep a regular training schedule. Oncologist didn’t think it had anything to do with the Lymphoma.
I started to get some new nodes enlarging in the back of my neck. I was experiencing temperature fluxuations and fatique so we did another biopsy. No findings of lymphoma, yeah! Later in the year
scans showed minor “lymphadema”. Biopsy of node armpit. Again it was “reactive” but they did not find lymphoma. Towards the end of the year, pain in my throat, knees etc spurred me to get a second opinion. Specialist from OHSU dismissed my symptoms as “autoimmune”, but did not refer me to rheumatology. Regarding when to worry about symptoms, Dr. said, “ Don’t worry till you feel really bad. We won’t treat again until ‘B’ symptoms come back. This disease, ‘waxes and wanes’, you will always have it. The only thing to keep an eye on is if it transforms to a more aggressive type of lymphoma. Otherwise, just forget about it.” I asked, at what point do I need to worry about the tumors?” and he said, “When some one says, ‘Hey, where are you going with that golf ball on your shoulder”. By the end of 2012, my joint pain had increased so much that I couldn’t raise my arms to put on my bra. My elbows, ankles, jaw, and hands were inflamed and painful. Sore throat, mouth sores couldn’t’ roll over in bed. Walking up stairs very painful…bad, bad, bad
Finally my oncologist referred me to Rheumatology. I was diagnosed with “Mixed connective tissue disease” and treated with prednisone and Hydrochloroquine. The hydrocholoqine took at least 6 months to kick in.
Periodic scans to check on NHL showed it was “stable” but I anemic.
Moved to Santa Rosa New Rheumatologist diagnosed me as having “Lupus”. About 6 months ago I noticed a new bump on my left collarbone. Oncologist dismissed it as small. Then I noticed swelling on upper left chest area near nape of my neck. Increasing fatigue. CT scans, which revealed nodes suspicious for reoccurrence of Lymphoma. Weird “soft tissue mass” near collarbone area prompted needle core biopsy. Tissue sample showed normal tissue. Second, second opinion new doc ordered a PET scan, confirmed suspicion of indolent lymphoma, but cells still needed especially on “soft tissue mass”, which did not look like a node with lymphoma. Today, I repeated Needle Core biopsy of chest wall soft tissue mass.