It’s been a bit since my last update. Life’s been challenging. I thought I had a handle on things and I really don’t. I should resign myself to Murphy’s Law and that my house is its headquarters.
Overall, exhaustion has been my new BFF. Every weekend, I am taking extra naps just to stay functional. I had another drawn out insurance/specialty pharmacy/doctor’s office issue. Someone, which no one will own up to, put a notation for pre-authorization on an existing prescription (with one refill left). This meant, I had to wait for all the different parties to do their job. After much yelling, crying, sarcasm and general disdain, the issue has finally been resolved. I had to constant follow-ups for anyone to do their job. We’re not talking aspirin here, folks. It’s chemo-medication that costs a small fortune. You would think those in the medical field would have some compassion and a sense of urgency. Please don’t hold your breath on that; you’ll end up dead waiting for that to happen.
I have come to the conclusion that once I receive my meds, I will be asking for a referral to a new oncologist. It’s clear this current office isn’t working out. I’m sure everyone there will have a small celebration to see me leave. If you advocate for yourself, it seems you are not the correct type of patient for many of today’s doctors.
It’s sad there are more doctors who care less about working with informed patients, who are in charge in making decisions about their care. They shouldn’t be made to feel bad about their decisions. Have snide comments thrown at them, such as “well, you chose not to do IV chemo”. You’re right, I chose to live my life, not be dependent on everyone, continue working, supporting my family and raising my daughter. It’s funny, they know how expensive medication and treatment costs, but they chastise you for not giving up your job, going on disability (which doesn’t support much) and losing quality of life. That’s what going on IV chemo would have done for me.
I working on simplifying areas of my life. It’s definitely a work in progress. I know the value of time, family and friends. Right now, I’m in limbo as to if treatment is working, if I will need more, if I will find out it’s spread. There are lots of things one can think about while being in such a limbo. I try to focus on today and accomplish what I can. Making memories is a top priority, should something change; not for the better.
Either way, ups and downs continue. It’s a daily battle that I still plan on winning. I appreciate all who have said prayers, made donations for my care, or can relate to this ongoing struggle.
