Well, a team of doctors.
Reflecting on this whole week, we have had meetings with the following departments and doctor:
- Stanford Ear Nose Throat (ENT): the tracheotomy tube to assist with breathing, and to take a biopsy of the throat.
- Stanford Radiology: MRI and PET CT of the throat area
- Stanford Blood and Marrow Transplant (BMT): to discuss graft vs. host disease and effects of transplant on relapse
- Stanford Hematology Oncology: to discuss options for Leukemia growth in throat area and treatment options- radiation, chemo, do nothing
- Stanford Radiation Oncology: to discuss options for radiation of the throat area
- Stanford Palliative Care: to discuss ways to continue some sort of normal lifestyle while undergoing treatment
- City of Hope Oncology: In addition, since Radiation Oncology is a new addition, we needed to set up a new patient appointment even though we have been at Stanford for over a year. Radiation Oncology requested the DVH – Dosage Volume Histogram of past radiation treatments. This did not exist in the records City of Hope sent to Stanford last year. I have used Grand Rounds and Picnic Health to help us gather medical records in the past, and they did not have it either. It appears that Radiation Oncology has its own data system and even though a full medical history has been requested in the past, their records were not included. Calling the Medical Records office at City of Hope took too long, so I contacted our oncologist directly who helped us get records over to Stanford. Thank you City of Hope!
I spent about 2 hours one morning coordinating the appointments around other commitments, optimizing the timing of each one. Palliative Care is scheduled after the meetings with Hematology and BMT. And Radiation Oncology is scheduled last since that is a final resort and we just want that team on standby in case we want to go down that path. Now on to gathering more data, more debugging, and finding a solution!
Today I learned that the radioactive glucose used for PET scans is called Fludeoxyglucose aka Fluorine-18 aka 18F. Only a tiny bit is injected via IV and the patient rests for 45 minutes before going in for a 23 minute scan. We are going to see the extent of cancerous, abnormal cells in the body. Mama Pham was considered radioactive for a few hours!
Kidney stone surgery is scheduled for Monday, September 15th! We have been awaiting this day for a long time. The kidney stones were discovered around October 2013. Because of the chemotherapy and weak immune system, the doctors at City of Hope installed a kidney stent to assist the kidney functions. The stones are quite large and couldn’t pass on their own. Now that my mom is healthier with more stable white blood cell, hemoglobin and platelet counts, will finally have them removed! The doctors at UCI believe that they may be able to remove them with wave technologies and no invasive surgery. This would be ideal. The doctor at City of Hope had discussed invasive surgery with us since they thought the stones were too large to remove with waves alone. UCI did tell us that there is a chance they may need to make a last minute decision about doing something more invasive if breaking up the stones with wave technology is not effective. We are optimistic!
My uncle attended a class at City of Hope on how to give self-injections at home. He said he practice with a needle and something that sounds like styrofoam. As preparation for donating stem cells, the donor is required to do 5 days of injection of Neupogen. This is the same drug doctors give cancer patients, especially neutropenic patients, to stimulate white blood cell growth. He gives himself shots for 5 days, starting January 25th, 2014, then enters the hospital on January 29th to have his stem cells harvested. More details about that in a different post! In a nutshell, they used to have to take the actual bone marrow for stem cell harvesting. Now they do it with peripheral blood, immediately giving you back your own blood after taking out what they need. Pretty rad, right?
Five years ago, I worked at Google on the Google Health team. Google Health was a Personal Health Record product. It was retired in 2012. The Google Health team wanted to find a way to use its talents with information, connecting people and technology to empower users with electronic ways of managing their own personal health records. There was as lot of healthcare and tech talent of the team, many who were very passionate about healthcare. Some of this passion came from having to go through the healthcare system themselves and handed stacks and stacks of paper. Today, five years later, we are still handed stacks of paper. It is so easy for me to go electronic with my credit card company and even my healthcare insurance company. Everything is electronic – bills, insurance claims, notices, etc. However, the medical record itself still lives in the world of paper. While working at IBM on teams that build data warehouses for hospitals, I got to see first hand the plethora of data that hospitals store on their patients. This data is stored in systems like Epic and Meditech. The major hospitals have Electronic Health Records. However, the link between those electronic health records and patients’ access is still broken. There are many start-ups now trying to solve this problem.
For now, I am trying various different Personal Health Record (PHR) tools. The product of choice at the moment is No More Clipboard, recommended by an IBM colleague. The user interface is not great, it is not intuitive or easy to add new medications and procedures, but is most certainly is better than nothing! The entire time I am adding my mom’s medications, chemotherapy schedule and procedures, I can’t help but think: “All this stuff is already in a database! Why can’t I just 1) have access to them directly on the provider sign or 2) have them pushed to my profile?!”
I have always been very passionate about healthcare IT, but having a personal experience with something as involved as cancer, I now truly understand the urgency and passion from some of my past colleagues.