{"id":59190,"date":"2020-09-25T12:43:16","date_gmt":"2020-09-25T16:43:16","guid":{"rendered":"https:\/\/rarediseases.org\/voices-of-rare-cancer-jans-story\/"},"modified":"2020-09-25T12:43:16","modified_gmt":"2020-09-25T16:43:16","slug":"voices-of-rare-cancer-jans-story","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/voices-of-rare-cancer-jans-story\/","title":{"rendered":"Voices of Rare Cancer: Jan’s Story"},"content":{"rendered":"

My name is Jan\u00a0<\/span>and in January 2018 life changed for my husband and me as we knew it. <\/span>I was on the operating room table to have\u00a0<\/span>g<\/span>astric\u00a0<\/span>s<\/span>leeve surgery.\u00a0<\/span>I had <\/span>six<\/span>\u00a0months of intense and detailed medical tests prior to the surgery. Imagine my shock when I woke up from surgery (the first time I had\u00a0<\/span>\u00a0major surgery except\u00a0<\/span>for a\u00a0<\/span>tonsillectomy<\/span>) to be told<\/span>:<\/span>\u00a0\u201cthey couldn\u2019t do your surgery\u2026they saw something on your\u00a0<\/span>liver<\/span>\u00a0so they aborted your planned surgery and did biopsies<\/span>.<\/span>\u201d<\/span>\u00a0WHAT!?? My\u00a0<\/span>m<\/span>om\u00a0<\/span>died from cholangiocarcinoma (<\/span>b<\/span>ile duct cancer) in 2011.\u00a0<\/span>I am so thankful to Dr. Peters for seeing this <\/span>shadow<\/span>\u00a0on my liver and recognizing<\/span>\u00a0that<\/span>\u00a0it wasn\u2019t\u00a0<\/span>good,<\/span>\u00a0or I probably wouldn\u2019t have been here today.<\/span>\u00a0Shortly thereafter I heard those words<\/span>:\u00a0<\/span>\u201d<\/span>You<\/span>\u00a0have cholangiocarcinoma.<\/span>\u201d<\/span>\u00a0Wait<\/span>\u00a0– what?<\/span>\u00a0I had been told cholangiocarcinoma was NOT genetic. After a misstep in my care, which often happens with\u00a0<\/span>c<\/span>holangiocarcinoma patients, as there are a limited number of\u00a0<\/span>o<\/span>ncologists who truly understand this complex, deadly cancer, I knew I was literally in a fight for my life. \u00a0<\/span>\u00a0<\/span><\/p>\n

My incredibly supportive internist Dr. Maleh got me an appointment with Memorial Sloan Kettering Cancer Center. <\/span>When I went to MSKCC, I felt cared for and that I had hope.<\/span>\u00a0Dr. Jarnagin gave me hope.<\/span> Not long afterward I was on the operating room table having a liver resection.\u00a0<\/span>It truly was\u00a0<\/span>a whirlwind<\/span>\u00a0and without the love and support from my amazing husband I would have been a mess, but his confident, positive attitude and determination that WE would get thru this was all I needed.\u00a0<\/span>MSKCC does its own <\/span>g<\/span>enetic<\/span>\u00a0testing \u201cthe\u00a0<\/span>i<\/span>mpact<\/span>\u00a0study<\/span>.<\/span>\u201d\u00a0<\/span>I love knowing that in the future when traditional modalities and treatments for\u00a0<\/span>cholangiocarcinoma<\/span>\u00a0fail<\/span>,<\/span>\u00a0<\/span>I have options with the mutations identified with this testing.\u00a0<\/span>This is a HUGE bonus for patients.\u00a0<\/span>I then met my incredible oncologist, Dr. Shcherba<\/span>,<\/span>\u00a0and started a\u00a0<\/span>six-month<\/span>\u00a0course of Xeloda.<\/span> It was tough. I had hand-foot syndrome from day 4 of my first cycle and now suffer from neuropathy in both my hands and feet but I am alive and continue to fight.\u00a0<\/span>Some days are tough.\u00a0<\/span>Super tough.\u00a0<\/span>The one thing that many\u00a0<\/span>c<\/span>holangiocarcinoma<\/span>\u00a0warriors wish people knew is<\/span>\u00a0that\u00a0<\/span>just because we \u201clook\u201d good\u2026doesn\u2019t mean we \u201cfeel\u201d good.<\/span>\u00a0Many of us are masters at looking good all\u00a0<\/span>the\u00a0<\/span>while feeling awful.<\/span>\u00a0We get used to\u00a0<\/span>f<\/span>aking it<\/span>.<\/span>\u00a0<\/span>We do that for family, friends and for ourselves.\u00a0<\/span>We WANT to feel like our old selves and sometimes forgetting about cancer, putting on\u00a0<\/span>make-up<\/span>, and dressing up can do just that. We pay for it the next day\u2026we are exhausted. But it\u00a0<\/span>is<\/span>\u00a0so worth it.<\/span>\u00a0<\/span><\/p>\n

I now spend my time raising awareness about this cancer<\/span>,<\/span>\u00a0which has included a radio interview on a local station, articles in a local magazine,\u00a0<\/span>painting rocks with my friend<\/span>\u00a0for awareness (Rocks for Cholangiocarcinoma\u00a0<\/span>A<\/span>wareness on Facebook),\u00a0<\/span>and sending\u00a0<\/span>out\u00a0<\/span>large boxes with cholangiocarcinoma swag to all major news stations and talk shows (sadly<\/span>,<\/span>\u00a0no response<\/span>\u00a0yet<\/span>)<\/span>.\u00a0<\/span>I also<\/span>\u00a0had D<\/span>elaware<\/span>\u00a0declare Feb<\/span>ruary<\/span>\u00a012 World Cholangiocarcinoma Day<\/span>, making it\u00a0<\/span>the first state to ever do this!\u00a0<\/span>T<\/span>he mayor of Wilmington did a proclamation for our original race day to declare Wilmington Cholangiocarcinoma Day, and so much more. I had also planned a 5k, \u00a0only to have to postpone it due to Covid-19<\/span>,<\/span>\u00a0but we will now\u00a0<\/span>do<\/span>\u00a0a virtual event (bit.ly\/<\/span>QuackOut<\/span>)<\/span>.<\/span>\u00a0<\/span><\/p>\n

Cholangiocarcinoma is often diagnosed at a later stage<\/span>. It<\/span>\u00a0is difficult to treat with limited treatment options and has poor outcomes. We need to change this. I don\u2019t miss an opportunity to try to spread awareness about this rare and aggressive cancer. I truly believe that awareness = donations<\/span>,<\/span>\u00a0donations<\/span>\u00a0<\/span>= research<\/span>,\u00a0<\/span>research = hope<\/span>.\u00a0<\/span>And<\/span>\u00a0<\/span>we<\/span>\u00a0all need hope! \u00a0#rarecancerpatientsmatter #aloneweareraretogetherwearestrong #cholangiocarcinomapatientsmatter<\/span> #RareCancerDay<\/span>\u00a0<\/span><\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

My name is Jan\u00a0and in January 2018 life changed for my husband and me as we knew it. I was on the operating room table to have\u00a0gastric\u00a0sleeve surgery.\u00a0I had six\u00a0months … <\/p>\n

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