On 11/4/2025, 64 Days, 2 Months, 5 Specialists, 20 Medical Appointments after my mom was discharged from the hospital; she received a formal diagnosis of Stage 3B Primary Peritoneal Carcinoma.
Training and running a marathon is time consuming, exhausting, and emotional but at the end of the 26.2 miles, you receive a medal. For us, we ended our marathon of medical appointments with a cancer diagnosis. I would say that knowing is definitely better than the unknown but yeah, cancer really does SUCK!
For more than 2 months, managing her healthcare was my full-time (part-time) job: countless calls to doctors, nurses, hospitals, labs, insurance, scheduling appointments, transporting her to and from all the appointments, and constant information sharing with all the various medical staff. I maintained an online calendar of all her medical appointments, carried around printouts of her medication, and kept a binder of all her medical records starting with her hospital discharge papers.
It would be unlikely that any patient going through all these health issues would be able to manage any of this on their own. Brain fog is often common. I am fortunate to have a strong network of family, friends, and coworkers to help support me and pick up my slack as my attention has been focused on my mom. I often think about others who are not as lucky and wonder what happens to those patients and families.
My advice for anyone going through health challenges:
- Do not accept poor service / care. If you have concerns or are unhappy, ask for a new doctor / nurse / etc.
- The GI doctor assigned to my mom while she was in the hospital was disappointing. During our 9/18/25 follow up appointment with him, he spent the entire time looking at his phone and computer screen and he made my mom feel like a number on a piece of paper. We left that appointment with no answers, still thinking she had liver cirrhosis. I called her PCP that same day and requested a new GI referral. The PCP referred my mom to the GI doctor who she had visited earlier in the year for all her digestive issues. The experience with this other GI PA was night and day difference. She was warm, listened to us, and said she did not believe my mom had liver cirrhosis. She began questioning the results of the hospital discharge and ordered another paracentesis with a more comprehensive biopsy of the fluid than what the hospital GI doctor had ordered. This second GI office called on 10/7/25 to notify us that cancer cells were found in the fluid biopsy and referred us to an Oncologist.
- The GI doctor assigned to my mom while she was in the hospital was disappointing. During our 9/18/25 follow up appointment with him, he spent the entire time looking at his phone and computer screen and he made my mom feel like a number on a piece of paper. We left that appointment with no answers, still thinking she had liver cirrhosis. I called her PCP that same day and requested a new GI referral. The PCP referred my mom to the GI doctor who she had visited earlier in the year for all her digestive issues. The experience with this other GI PA was night and day difference. She was warm, listened to us, and said she did not believe my mom had liver cirrhosis. She began questioning the results of the hospital discharge and ordered another paracentesis with a more comprehensive biopsy of the fluid than what the hospital GI doctor had ordered. This second GI office called on 10/7/25 to notify us that cancer cells were found in the fluid biopsy and referred us to an Oncologist.
- Scheduling appointments is exhausting. Sometimes the only available dates are so far out in the future. Ask for alternate locations or staff with earlier availability. Additionally, I encourage you to call the insurance companies to question and push authorizations through. Take an aggressive and proactive approach.
- During the 2 months, I drove my mom all over the Houston area. We had appointments in Kingwood, Tomball, Woodlands, Spring. I asked for anything within a 50 mile radius. I made multiple calls to the insurance companies and Medicare. I also picked up imaging CDs and personally delivered them the same day in lieu of waiting for records to be sent by staff electronically or mailed. I genuinely feel that it made a huge difference in how quickly my mom was able to schedule appointments, complete all her tests / labs, and receive her first chemotherapy infusion treatment.
- During the 2 months, I drove my mom all over the Houston area. We had appointments in Kingwood, Tomball, Woodlands, Spring. I asked for anything within a 50 mile radius. I made multiple calls to the insurance companies and Medicare. I also picked up imaging CDs and personally delivered them the same day in lieu of waiting for records to be sent by staff electronically or mailed. I genuinely feel that it made a huge difference in how quickly my mom was able to schedule appointments, complete all her tests / labs, and receive her first chemotherapy infusion treatment.
- Keep thorough notes of any interaction you have with nurses, doctors, different specialists, insurance companies, lab technicians, scheduling.
- Repeat the same information to EVERYONE. It is important to make sure everyone is aligned and every specialist, doctor, lab, knows everything you know.
- Advocate for yourself or your loved one with kindness and understanding. It is challenging not to take out our frustrations out on others, but important to keep in mind that everyone is working in the confines of their jobs. Several times, I felt that being nice to people made them more patient and willing to go the extra mile to help me or share helpful information that would push the process further along.
- Confide in trusted family / friends. Dealing with all of these health challenges can be overwhelming and isolating. Ask for help and take care of your own needs. It’s not selfish, it’s necessary!
WorkingTheTechWorld 