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Nov 8, 2017 Latest post:
Jul 11, 2018
Journey 2 Begins! I fought and won this battle before and I'll do it again.
Sunday, October 22, 2017 I visited Lowell General ER Sunday morning because I was feeling “off”, and experiencing numbness in the left side of my face and equilibrium issues. After a CAT scan showed something a MRI was ordered and it showed what looked like 2 lesions on the brain stem. After an overnight stay in the Mill City, it was decided I would be transferred back to Tufts New England Medical Center (NEMC) where journey first began 17 years ago (See Journey 1 Below) and I took an ambulance “cruise” to (NEMC) on Monday night.
NEMC A brain biopsy, a 2 hour surgery, was scheduled for Thursday, October 26th. Despite them drilling a hole through the back of my skull I actually felt no pain and didn't take so much as a Tylenol that night post biopsy. They kept me overnight and it was a long night in the ICU as they woke me up to check my vitals and do tests every single hour. I was finally cleared and discharged on Friday, October 27th and came home anxious to get the results.
Tuesday, October 31, 2017 Happy Halloween! I dressed like the survivor that I am and returned to NEMC with my parents, my sisters Tarym and Tever and nephew Nico. We walked through the Tufts Cancer Center for the first time as 17 years ago I was treated at Tufts but in the Floating Pediatrics Wing. Unfortunately pathology report determined my tumor was NOT benign (a WA senior year vocab word). My official Diagnosis was Glioblastoma Multiforme.
The recommended treatment is concurrent chemotherapy (Temodar oral pill chemo) and radiation. I'll take the Temodar pill every morning 7 days a week for 6 weeks straight and drive into Boston 5 days a week for radiation for 6 weeks straight. After the 6 weeks I'll have 1 month off and then do another MRI to see how tumor is responding to treatment. This will then be followed by monthly Temodar treatments for 5 days every 28 days. Plan is to also get an MRI every 2 months and monitor the tumor which will hopefully shrink!
Friday, November 3, 2017 My sister, Tarym, and I went to Tufts and met with the Radiation doctor and was molded for my new Radiation Mask, this was much less painful than i remeber the first time around. The mask is t o help hold my head in place and make sure they point the radiation in the right spot. Radiation doesn't hurt and its quick and despite the mask mold process not being fun I'd rather wear the mask and know they hit the right target in there.
November 15, 2017 Let the games begin! This will be my first day of radiation and oral chrmo.
This isn't my first rodeo ... Journey 1
Summer/Fall 2000 After a summer of suffering from extreme nausea and headaches I was scheduled for a MRI. On Friday, September 22nd, 2000 it was Walk-a-Thon day at NDA where i was an 8th Grader. I left early with my Mom and younger sister and we had lunch at Ma & Pa’s Diner then we went to Lowell General and I had the MRI. After we went to get Ice Cream at Heritage Ice Cream. By the time we got home to Westford (About 20 minutes away) there was a message on the answering machine (pre cell phones) instructing us to pick up the films and head directly into Tufts in Boston. Lucky for us, we got to sit in Friday night traffic. Not knowing at this point we anxiously waited to find out what was going on. After waiting hours in the ER, we were told I had brain tumor. On September 26, 2000 I had a 14 hour brain surgery to removed the tumor and was diagnosis with posterior fossa medulloblastoma.
Treatment for this journey included chemotherapy and radiation of neck and spine which eradicated the cancer but I went through many side effects from the other medications that go along with cancer treatment. I had to be on steroids to decrease the swelling in my brain which unfortunately lead to decrease blood flow to my hips and at 16 years old I had bilateral hip replacements the right one in April and Left in May (3 weeks arpart). I also had to have my gallbladder out and go figure the pain from this surgery was the worst! Trying not to laugh when you have stomach surgery is no joke!
Because of where the meduloblastoma was sitting on my brain it effected my eating. A little after my sixteenth birthday I was down to 67 pounds. That’s when I had a J-Tube placed in my belly. I have been living with it ever since and receive liquid nourishment and nutrition via the tube every night. That is why you may never see me eating! :-)