I started this blog a year ago when Julie was in ICU, but didn’t stick with it. Much has happened. Here is a brief timeline of the past 9 and 1/2 years. The pictures fit chronologically with the timeline.
Dec 2007, Julie 20 weeks pregnant with Noah, diagnosed with pancreatic neuroendocrine tumor, PNET. Waits until after Noah born 29 Apr to have surgery to remove tumor.
June 2008, tumor with much of the pancreas and spleen removed. Four and a half awesome years, believing she was cancer free.
Dec 2012, discovered metastasis to liver, peritoneal surfaces.
Winter/Spring 2013, many tests, more tumors discovered in pelvis/ovaries, started oral chemo.
Summer 2013, progression of liver tumors, change in oral chemo with good results, stable, no progression, some tumor regression, remains stable for almost two years.
Spring 2015, pain in left hip due to new tumor in proximal left fever. Tumor scraped out, stabilized with rod and plate, followed by radiation treatment.
Summer 2015, photos taken during laparoscopic appendectomy show that large ovarian tumors are not invading adjacent tissues, so they are free and accessible for resection. Both very large ovarian tumors easily removed in July.
Fall 2015, after 5 month chemo break due to surgeries, resumed oral chemo, recovering well from surgeries.
Feb to Apr 2016, progression of liver tumors, plans made for liver radioactive microsphere embolization. During liver mapping and treatment, had increasing pain in lower spine and pelvic bones, caused by numerous tumors in spine and pelvic bones. Just half of liver treated with radioactive microspheres.
Apr/May 2016, Episodes of severe and ongoing pain, starts long term use of opioid pain medications and patches. Radiation to lumbar sacral spine. Starts IV chemo.
May 2016, pain in mid back, due to tumors throughout spine, pathologic fracture of 11th thoracic vertebrae, treated with radiation. Stops IV chemo.
June 2016, after pain in left hip since Feb, discovered increasing tumor growth around implants in left femur.
July 2016, proximal femur replacement, very painful, long recovery to walk without aids.
Fall 2016, restarts IV chemo, with a pause in chemo for radiation to right shoulder tumor. Tumors in liver, peritoneum, lung, ribs, sternum, shoulders, scalp, all vertebrae, pelvis and hip.
Winter 2017, gradual but increasing toxicity of chemo. Neuropathy, fatigue, and nausea become common. More pain requiring increasing doses of opioid pain medications.
May 2017, worsening pain left mid femur, tumor growth mid-distal femur around implant, treated with radiation.
June 2017, off chemo due to toxicity/side effects. Intrathecal (spinal) opioid pain pump placed. Obstructive pneumonia of right upper and lower lobes due to tumor obstructing bronchi in right lung. Paralysis of tongue, unable to speak, chew and swallow, due to tumor at base of skull, impinging on right jugular foramen through which passes the glossopharyngeal nerve, which supplies motor and sensory pathways to the tongue and pharynx. Sitting in radiation oncology currently awaiting treatment…
Most of the above pictures don’t depict the suffering, they depict the reward of enduring. Her suffering has been more than anyone knows, even me, and I have seen the most sorrowful expressions of fear and pain, sickness and depression. When she feels well and gets to be with people, that is what she lives for, and that is what is seen. This ordeal is beyond anything we imagined. Julie has always wanted to fight this and live with family for years to come…she wants “To run and play”