Jan 28, 2019 Latest post:
Feb 25, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Lately I've had friends tell me they wish I had a Caring Bridge site so they could follow me in my journey and as my journey continues with curves and bumps along the way, I decided to do that. As many of you know, my story began on October 21, 2013. I heard those 3 words none of us ever want to hear, "You have cancer!" I sat there speechless! Then the doctor said, "Pancreatic cancer. " The first words I said were, "That's my death sentence!" All I knew about pancreatic cancer was you were diagnosed and gone in weeks or months! She said, "No, I don't think so. We think you may have a rare slow-growing kind. I've gotten an appointment set up for you to see an oncologist, Dr. Hurwitz, in Topeka tomorrow at the St. Francis Cancer Center." WOW! My head was spinning! My sister, Donna, had gone with me for the consultation, so she kinda took over. I was teaching, so arrangements had to be made...her husband, Steve, was chairman of school board so he took care of that. After over 25 years of teaching, that ended up being the last day I taught!! The next day we went to Topeka. I saw Dr. Hurwitz. He showed us the CT scan and then sent me down to for x-rays on my hip. I'd been limping for 7 months and the pain steadily grew worse. He said, "Get this girl a wheelchair...she's not walking another step,!" He admitted me to the hospital with the thought I might need surgery but when the orthopedic doctor saw scans and x-rays, he said there was too much damage at this point...wouldn't work. They did biopsies and got me prepped for radiation on my right hip. I was diagnosed with pancreatic neuroendocrine tumors-stage IV. I had a 17cm tumor involving the pancreas, also some in liver...one was 7.5cm and one 6.5cm. The one in my hip was 6.3x6.2cm. Also had lymph nodes involved. I was dismissed after 2 days with a plan in place. First I would receive 10 treatments of radiation on my hip to stop the growth of that tumor. After that I would receive treatments of Zometa every 4 weeks to strengthen my bones. Only given by IV. Dr. Hurwitz then put me on a new drug (FDA approved in 2011). It's purpose was to inhibit growth of new cancer cells...maybe shrink a little. It was called Afinitor. My cancer was too involved to do surgery. He also had me off my hip totally for about 2 months. It was either hop with a walker or a wheelchair! My sis, Donna, was my main caregiver those first months...she's still here for me. I lost at least 35 pounds in all. Down to what I weighed when about 15 when I was 2 inches shorter than I am now!! After being on the Afinitor and Zometa a few months, I had gained some weight, etc. Had a scan and tumors had definitely shrunk. More than the doctor had thought. He was really excited about it and planned to take my story to a conference he was going to soon! I was on the Afinitor for about 2 1/2 years but my body adjusted to it and wasn't as effective. So, tumors in my liver began to grow. In July of 2016 I began taking Sutent instead of Afinitor. He had me start with 37.5mg capsules. I had some pretty bad side effects. Dr. Hurwitz retired so had a change of doctors right then too. Dr. Meyer changed dose to 25mg and that helped lessen some of the side effects. He was most concerned because it pulled down my blood counts. So you go the changes in your body but you also have to work through it all in your mind again. My type of cancer doesn't have what they call cancer markers in the blood. So I have to be attentive to changes...and get scans every few months. On to February-2017. I began having pain in my back that did not go away so called clinic and of April. They had me come for CT...then decided to do a MRI also. Showed lesions on my spine. I got 5 treatments of radiation...made me pretty sick. Also pulled counts even lower and couldn't get them back up. So have been really really tired with no energy since then. They test certain things every so often and they come back ok. They don't like to do anything else until a certain point and I'm not quite there. Anyway, had a scan and of September. Hit another bump! Tumors in liver were growing...again. So, now I'm on monthly injections of Sandostatin(Octreotide). And so my journey continues...