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Jan 6, 2019 Latest post:
Jan 27, 2019
I’m not sure if you know the journey my strong and beautiful mom has been on in the last few years. I will write it as best as I can and to the best of my memory. My mom was having back pain in 2010 and her doctor (Susan Kamper) ordered an MRI...tiny “bubbles” of tumors were found all up and down her spine. Her doctor referred her to the Mayo in Rochester because she had never seen anything like it. Not long after, Vic passed away in January 2011. My mom, in her grief, never followed through with the Mayo until 2013. Doctors at the Mayo did not like a particular tumor that was growing towards her spinal cord. Thanksgiving 2013, she had surgery to remove this tumor. The doctors did not know what kind of cancer my mom had....samples were given to many different doctors all across the US to figure it out. No one knew quite what it was. It was unique but yet had Melenoma markers in it. She had a very long recovery as she was wheelchair bound from this delicate surgery. She stayed by herself down at the Hope Lodge and also Centerstone Hotel in Rochester. She had re-hab until she mastered walking again although she never restored feeling in one leg. She had 33 radiation treatments while down there. She also had surgery to remove half of her thyroid as it showed up cancerous in a false positive scan. She had a lot of visits and help from her brother, Stevie; sister-in-law, Judy; her mom, Donna; and her boyfriend, Pat. Although, she did this mostly all on her own. She got back to her house in spring of 2014. She had MRIs at the Mayo every 3 months....Stevie and Judy or Pat went to the week long appointments with her until recently when I went with her. The cancer never really grew until 2017. She was approved to get Keytruda at a discounted rate and she started that in June 2017. She had a feeling that she shouldn’t try this cancer therapy, but she did anyway because of opinions from doctors and others. She had a port installed in her chest and had Keytruda IV treatments every 3 weeks in which Judy or her mom accompanied her to. Once she was on Keytruda for awhile, she needed a cane to get around. She quit the Keytruda in March 2018, but by July 2018 she was needing a walker and help to get up from chairs. July’s MRIs showed significant growth in her tumors in her back, but thankfully no growth in her brain. Doctors told her to go home and get her affairs in order because they had no idea what her prognosis would be. She was approved to take a Mekinist pill in approximately August 2018, but she declined to try it because of all the side effects she experienced from the Keytruda. She was scared that her quality of life was going to diminish even more or faster. Through all this she was strong and independent. She was living in her own house and taking care of everything mostly on her own. She had help from her boyfriend Pat, her brother, Steve, and myself. She started falling with her walker here and there. Family and friends were trying to persuade her to try an apartment in town, or maybe a roommate (Cousin Gerri volunteered 💜) or maybe assisted living. She finally agreed to an independent living apartment at Edgewood in Virginia. We signed papers on September 10, 2018 and she was fully in the Hospice program by now. She started falling a lot more and by October 9th she moved to assisted living at Edgewood. She started not being able to transfer herself onto the bedside commode and Edgewood doesn’t use lifts, so we moved her to St. Michaels nursing home on October 26, 2018. She could not get much rest being in a busy loud nursing home, so my boyfriend, Jay, offered for her to move out to his house in Wuori. We moved her here on December 7, 2018. Her decline has been fast and upsetting to all that love her dearly. I have comfort in knowing that she is never alone at my house now and always has love around her.
***Side note: Come to find out, she has long term care health insurance and could have stayed in her own home. She could have hired PCAs to stay with her there. We would not have had to move her 4 times. Lesson learned...investigate all options first!
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