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11/18/2016 Latest post:
Welcome to our Caring Bridge website. We are using this site to help keep family and friends updated on my moms journey all in one place. We appreciate your support, prayers words of hope and encouragement. Thank you for visiting. As some of you already know on August 22, Our mom Arlene was diagnosed with a very rare form of cancer, the full name we were given at that time was Mucinous Adenocarcinoma of Her Female Regions . The doctor did want to her to travel to either the Twin Cites and or Mayo to see a specialist a Gynecological Oncologist and have all sorts of tests, scans, MRI's and CTs done where this doctor would be located. As most of you know our mother is a home body and did request that if at all possible she wanted to have any tests, and or treatments done in Bemidji so she could be home in her own home and close to everything familiar. We all respected her wishes and in the days that followed numerous tests, Scans and MRI's were done to see if the cancer had spread to other areas of her body. The initial reports came back negative for metastasis to other areas too which we all were greatly relieved. Our next step after all the tests was to meet with an Oncologist to see his recommendations as to treatment. The first Oncologist was what they call a Medical Oncologist one who primarily works in the area of Chemo Drugs and Therarpys and the the main recommendations for this type of cancer is either surgery with radiation and or just radiation therapy. The surgery in this case would be very extensive and invasive and is not typically recommended for women our moms age. So we were most certianly looking at radiation external as well as internal. But since this was not the first Oncologists area of expertise he recommended we see a Radiation Oncologist, he also recommended she again revisit the idea of traveling to either the cities or Mayo to see a specialist. Again at that time that was not in our moms wishes. So on to the next Oncologist who is a Radiation Oncologist who also was a visiting Oncologist in Bemidji due to the main one being gone on vacation. His recommendations was 25 rounds of external radiation which would be 5 days a week for 5 weeks, followed in one week with 3 rounds of internal radiation which would have to be done at a facility in Fargo. At that time this was the plan that we were looking at, the following week mom had to go back to see the main radiation oncologist at Bemidji and have tumor markers put on, scans done to determine exatct dimensions, measurements and tattoos put on her as to where the radiation would be done. We were told at that time that we would not need to see the Fargo Radiation Oncologist until after mom was finished with the 25 rounds in Bemidji. And that possibly a week before she finished in Bemidji we would be traveling to Fargo to get things lined up there for the Internal rounds. Once the tattoos were on and the measurements were calculated we were looking at begining radiation with in the next few days and were anxiously waiting for a start date to get things rolling. But a few days later instead of recieveing a call as to when she was to start radiation we got a call that she had to go to Fargo first and see the internal radiation Oncologist there before they started as he wanted to see her before she started the external. By this time is was October and her appointment to see the Doctor in Fargo was set for Halloween day. Our frustration with this situation was mounting as here we were into the end of October and nothing had been started, after consulting with family and also with mom and dad we made a plan that if this Oncologist visit went no where we were going to head to the first specialist we could get her into and quit fooling around with the local doctors. As much as she may have wanted to remain home for treatment, by this time it was no longer an option. Mom agreed that after the Fargo visit if nothing was done, we would look elsewhere for a specialist. On to Fargo we went on Halloween, this Oncologist was very helpful and did explain after looking at all the records, an MRI ect.... that mom would require 5 internal treatments to be done there in Fargo a week after she finished the 25 rounds. The 5 internal treatments would have to be done every 2 days for 5 treatments. We were not thrilled about the thought of driving to and from Fargo in the winter time as we were looking at December before she would start the internal, but we would look into housing or something so we could stay in Fargo for 2 weeks and not have to do the driving back and forth. We were relieved and felt that we finally had a plan in place and we were told that her externall radiation would begin that Wednesday November 2. November 1st we received a call from the Oncologists office in Bemidji telling us that when the doctor in Fargo had done his examination on our mom he had spotted a new area of concern and was recommending further biopsy's be done before radiation started. A new biopsy was done the next day, with results coming back "suspect" for more cancer in a new area. At this time I got on the phone with my sister in law Mary and we discussed this new development and both of us agreed along with other family that we needed to get our mom to a specialist ASAP with NO more waiting around in Bemidji. We both agreed that where ever we could get her in the soonest we would go there wether it be Mayo Clinic, University of Minnesota, Shawnee Medical in Kansas or University of Kansas Cancer Center. We both got on the phones for hours and called who ever and where ever we could. In the end Mary was successful in obtaining an appointment at the University of Kansas Cancer Center for this Friday November 18. In Kansas City. Fast forward to today we have our dear parents packed and loaded and we are heading to Kansas in the morning. My brother Dana and his dear wife Mary have opened their home to our parents to come and stay with them through this process. We have no idea what to expect or what we are looking at in the days and months ahead but we are finally going to get to the bottom of this terrible cancer and hopefully get our mom a good treatment plan. God has been in the midst of this all along and has guided us to this point. We ask for your prayers , good thoughts, and encouraging words for our mom, dad and entire family. Stay tuned here for periodic updates as to how things are going. Thank you all again. God Bless. Marlene