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Mar 20, 2017
Welcome to my CaringBridge site. We've created it to keep friends and family updated on my lymphoma.
If you'd like to know how I found I had lymphoma, be sure to read the background story by clicking "More".
BTW, I think the Journal only shows the last post I've made. There are a bunch more, but you have to click on "Read Journal History" to see the older posts. You then might want to sort by Oldest First to see them in date order.
Oct 2012 - I feel a lump in my neck. Then a few more.
10/22 - While getting a massage, I asked my LMT Heather what the lumps were. She checked them out, said they weren't muscle or fascia, and that I should see my doctor. (Gold star to Heather for not diagnosing me on the table!)
10/29 - I finally get around to emailing my doctor about the lumps. His response - get in here.
10/31 - Dr. Langsdorf checks me over and explains the lumps are lymph nodes. The enlarged size could be due to a couple of things, most likely an infection. If they didn't go away on there own in 3 weeks I was to see an ENT he recommended.
11/23 - Bumps are bigger. An appointment is made with the ENT.
11/28 - I see Dr. Shettler. She confirms swelling in the lymph nodes in my neck. Also, my right tonsil is extremely swollen and red. (Yet it never bothered me.) She orders a CAT scan of my upper chest and neck.
11/30 - CAT scan. I'm claustrophobic, so this is not my favorite activity.
12/3 - Message from Dr. Shettler to call her. At home. At night. I call and she's sitting in the bathroom while her kids take a bath. She tells me that many lymph nodes in my upper chest, neck and head are swollen. Not good. She wants a biopsy. Soon.
12/6 - Off we go to Willamette Falls Hospital for the biopsy. Dr. S tells me that she's taking an entire lymph node and also a chunk of that swollen tonsil. She may need to remove the tonsil. Results from the biopsy should be available the following Monday, maybe the next day (Friday.) I wake up, though totally drugged, and feel okay but minus a tonsil.
12/7 - No biopsy results.
12/9 - About 6:30PM after reading some email at my computer, I have a salty taste in my mouth. I go in the bathroom to check, and see that I have a mouth full of blood. Barbara calls 911. Off we go to ER. The young ER doc keeps me for a few hours, then sends me home since the bleeding had stopped.
12/10 - At 7:30AM I wake up with a salty taste in my mouth. Repeat process above. This time an experienced ER doc, who calls my ENT, who comes in around noon and takes me back into surgery. She had to cauterize and stitch to make sure it didn't bleed again. (She said I didn't bleed much during the original surgery, but when she went in this time I was gushing!) No biopsy results yet.
12/11 - no biopsy results. At this point I knew it was bad news.
12/12 - Dr. S calls me herself, but my cell phone, as usual, didn't ring since I was home where there's little AT&T service. By the time I noticed a voice mail, it was really late, so I didn't call her back.
12/13 - Follow up appointment with Dr. S. She delivers the (expected) bad news -- I have Mantle Cell Lymphoma (MCL.) She's investigated who the best oncologist would be for MCL and gives me his name, says I need to get a PET scan and an appointment with the oncologist. She orders the PET scan just to jump start things.
12/17 - I go in for the PET scan. Can't do it. My throat is so messed up from the tonsillectomy that I can't lie on my back without my throat closing and me choking.
BTW, the tonsillectomy was fine, but the recovery was horrible. My throat killed me for about 3 weeks and I could barely eat.
12/19 - Meet Dr. Yasenchak, the oncologist. Great bedside manner, lots of explanation of condition and treatment choices. He was at the Mayo clinic for years where he specialized in lymphoma. He works a lot with MCL patients. Yeah! (Yes, I do lots of checking on him.)
12/27 - Bone marrow biopsy - results would show I have it in bone marrow.
1/2 - PET scan. With no troubles.
1/3 - Dr. Y has all test results and recommended treatment. I'm stage 4, which isn't unusual for MCL. I have it in "too many lymph nodes to count", bone marrow and spleen. We go over treatment plan, he answers lots of questions. He explains that the aggressive treatments don't result in a better outcome, and at my age they're quite risky. My plan is to use a combination of bendamustine and rituxan, which has shown very good results with only minor side effects. I'll get 6 treatments spaced 4 weeks apart, followed by rituxan every 2 months for two years.
As of now, MCL is not curable. Treatments can put it into remission, but eventually they stop working. Based on my clinical evaluation, the prognosis is a 60% chance of survival for 5 years. Some go much longer, some less. My goal is to be as healthy as I can be while waiting for the scientists to develop a cure, or at least a permanent treatment!