Has it really been a year since my last post? Wow...
Well, the unfortunate news from me here today is that my beloved mother died last Saturday (1115/2014). She was so strong and positive throughout her 20-month battle with this atrocious disease, but the widespread metastasis produced multiple systems failure which her precious body couldn't combat any longer. My heart is broken. Today will be the first of many Thanksgivings without her, and her 60th birthday would have been 1 week from today.
The usual things people say to me are that at least she's no longer suffering; now she's at peace; and she'll always be with me...all this is true and encouraging, but the pain of her loss is still very acute.
For what it may be worth to future readers of this post, here's a brief history of my mom's process. She wanted her "case" to be used to help support the medical community, others who might learn from her experience at all, and people making decisions about treatment options. I'm relaying this in that spirit.
*March 22, 2013: Diagnosed with Stage IV cholangiocarcinoma; mets to liver, lung, bone and lymph
*April, 2013: Neurosurgery procedure to remove diseased C4 vertebrae, replaced with titanium cage
*May-Aug, 2013: Radiation on spine to treat bone mets to thoracic and lumbar regions
*May-Jul, 2013: Started first chemo: Gem/CIS -- completed 6+ rounds; minor liver tumor shrinkage.
*Jun-Sep, 2013: Chemo-embolization and ablation treatments.
*Aug-Sep, 2013: Started second chemo: 5-FU...also completed 6+ rounds. Didn't respond well.
*Sep-Nov, 2013: Started third chemo: FOLFOX...toughest one yet. Lung mets became aggressive.
*Nov, 2013: First Y-90 procedure. Results showed dramatic reduction in tumor markers.
*Jan, 2014: Second Y-90 procedure. Sustained liver tumor shrinkage but caused stomach perforation.
*Jun-Jul, 2014: Prescribed Tarceva for continued tumor shrinkage. Lungs worsened.
*Jul, 2014: Began routine paracentesis for abdominal ascites drainage. Averaged 3 Liters, 1-2x week.
*Jul-Sep, 2014: Prescribed Irinotecan to combat lung mets. Didn't respond well. Declined quickly.
*Oct-Nov, 2014: Constant coughing from lung fluid buildup. Thoracentesis drained 750mL 1x/week.
*Oct, 2014: Took a break from treatments/procedures to contemplate next move.
*Nov, 2014: Met with dr. to discuss immunotherapy. Not proven for CC, only melanoma. $75k/trtmt
*Nov, 2014: Admitted to ER with shortness of breath; oxygen levels 94 (out of 100). Put on O2.
*Nov 9, 2014: Declined to pursue further treatments and elected hospice care (in-home).
*Nov 14, 2014: Hospice was approved and came in to provide a hospital bed, morphine, etc.
*Nov 15, 2014: Died at home, surrounded by her family. She was 59.
I've left out the many, many MRI's, x-rays, CT scans, blood transfusions, blood tests, and visits to specialists, hospital and ER teams. Often her hemoglobin was so low that she required blood transfusions in order to qualify for her next round of chemo. She was greatly fatigued, but never lost optimism or hope right up to the very end. Mind-body connection was always positive and strong. She was a devoutly faith-filled Catholic and this sustained her. She prayed daily for all those afflicted with cancer and chronic pain. She ate very carefully...was essentially on a vegan diet (no meat, soy, dairy, gluten, sugar, or alcohol). She also juiced regularly.
Her care team was primarily supported by:
-Dr. Saeed Sadeghi (Hematology Oncology, UCLA)
-Dr. Lisa Chaiken (Radiation Oncology, Providence St. John's Health Center)
-Dr. Edward Lee (Interventional Radiology, UCLA)
-Dr. Antoni Ribas (Immunotherapy, UCLA)
-Dr. Timothy Weiss (Hospice/Palliative Medicine, UCLA)
-Dr. David Wallenstein (Hospice/Palliative/Pain Management, UCLA)
-Skirball Hospice & Palliative Medicine
If there are any detailed questions or further inquiries that may assist others, I would be happy to share anything that might be of help.
I wish all those who struggle with this terrible illness, and those who love and care for those afflicted, the most heartfelt love, strength, courage, and fearlessness as you pursue your own treatment options and work tirelessly for a cure.