Diagnosis to…treatment?
Guess who’s back…back again…I’m back…with another stream of consciousness blog post that will probably make not sense lol.
The streamline from diagnosis to treatment is a process you would think would move pretty quickly and urgently. Or at least be well informed on what to expect along the way. My experience was everything but informative or urgent. When I got the diagnosis, it feels like you hit the pause button on your life. I’m a planner through and through and losing that ability to plan out every single detail of things is nothing short of devastating.
They immediately ordered a full body scan after finding the tumor. It took a day or so to be approved by my insurance but the appointment was made same day and I also got the results sent to the MyChart app that evening. No sign of metastasis. I feel like I can breathe for the first time since I heard the colonoscopy doctor say “cancer”.
Nothing super exciting happened after that. I got referred to (and my insurance approved the referral) to a surgeon that doesn’t even accept Tricare? But no one was going to tell me that until I called to ask why I haven’t received an appointment yet. So then began the back and forth fight between digestive care vs oncologist vs tricare with me caught in the middle. A boxing ring I would never like to step into again. A lot of pointless phone calls, rude receptionists, and tears. A whole lot of tears lol.
My primary care doctor also left the office I go to in the middle of all of this so I wasn’t assigned to a doctor and no one was ordering all the tests I needed to determine treatment plan…all of which I wasn’t aware of until I started asking questions and calling all of these offices myself. (Seriously—YOU are your best advocate! Make the calls. Ask the questions.)
It took my primary care office a week to order an MRI due to the fact that I wasn’t attached to a doctor in the office. I told them countless times to just place me under anyones care who can order the test. Adam also started showing up to the office in person to check on it daily on his way home because nothing else was working. Finally, since no one at the office seemed to be able to do anything about ordering the MRI…my best friend who is a nurse at USC made some calls and got me the name of the colorectal surgeon there. I called my insurance my self, self referred, and it was approved same day. How can I handle all of this better than anyone else who’s desk it came across before Jess got my name in front of Dr. Lee??
Once I started being seen at USC, things moved pretty quickly. I got an MRI within a few days and what I thought would be my final treatment plan a few days after that. (But as things have happened during this journey, it has changed at least 10 times since then)
The MRI findings showed that the tumor has spread to my local lymph nodes. Not the best news but at least it’s only the local ones. Due to this, my treatment plan will be a bit more aggressive. I get my port inserted this coming Monday and start chemotherapy next Tuesday, one week from today. I’m not sure how I feel. I’m obviously relieved after this insane ride & fight with insurances. These last few weeks have felt like the Guardians of the Galaxy drop tower at Disneyland. You shoot up and get good news, then the bottom falls out and you drop a little bit, then more good news and you shoot upwards, then more bad news and you fall to the bottom again. I’m tired of the up and down. I’m ready to face this head on and start the hardest but most important battle of my life. Thank you so much to anyone who came back to read this and see what I have to say or what I’ve been going through. I put on a happy/positive face but things have been absolute hell since the day my tumor was discovered. Real life outside diagnosis hasn’t stopped and is almost too much to handle on top of trying to come to terms with cancer and treatment.