Bye Felcia...and Hello Beautiful

There are times when you get the feeling about a person, place, or situation. As much as you want to trust, believe and give your heart away your gut pings like an annoying message alert, telling you 'nuh uh'. That wasn't my immediate reaction to my first oncologist office, but as time went on and I wasn't getting answers or communication that feeling in my gut started to turn sour. It wasn't all of their fault, but mostly. It was a complicated relationship. 

Perhaps everyone there was well-intentioned but simply too busy and overworked, which I can certainly relate to and understand. Being asked to be placed on hold the second they answered the phone, rows of people moving in and out, no one really smiling or talking. I saw no inspiration, no happiness, no hope really. People going through the motions, quiet, people just doing their job, getting their labs or treatments and move along. 

I started to feel lost in the shuffle. More like a collection of numbers to analyze, figure out, and move on. For this relationship, for me, I was afraid I needed more. This is at least my experience, others may find exactly what they need there, and I am so happy and supportive of them. More power, peace and healing to them all. 

After my brief initial visit where the oncologist dropped a bomb on me and I literally never saw him again, it was like being on a blind date and he had arranged for the emergency phone call and he was out of there. From then on, it was weird game of phone tag and ghosting. Not to mention the waiting I went through for a call on all of my genetic testing and bone marrow biopsy results as they sat in MyChart forever to confirm my diagnosis (I knew I officially had CML before my doctor did, that's a whole other story, see my very first entry), then the multiple times I had to call to see if I was keeping appointments, if my meds were in or approved yet, or what was going on, that feeling now sat like spoiled fruit in my stomach, fermenting into unsettling resentment. I didn't feel seen. I felt gaslit by a gatekeeper in a white coat, questioning what the hell my reality actually was. 

To their credit they were making efforts on my behalf. It seemed my insurance company had self-righteously rejected the medication my doctor felt best suited for my treatment. Why? Basically, because the meds my doc wanted me on were expensive and the insurance wanted me on the first generation, cheaper option. The suggested meds from my oncologist retailed between $15,000-$25,000/month. Per month. That is potentially $300,000 out of pocket for a year. How in the name of all that is ethical can anyone be expected to afford that?

I quickly learned from the helpful members on my online CML groups and my doctor the Cost-Plus Pharmacy started by Mark Cuban was a philanthropic endeavor started to take out the middlemen that jack up meds to their catastrophic prices. It turns out, you can get those meds I needed (to save my life, by the way) for $500/month close to cost. Cash only, no insurance taken.

My doctor said if my insurance continued to appeal, I could go around them and pay cash to get started on the meds, and if we did win and they decided to cover it, they could be total dicks and say they will but only cover 20%, leaving me on the hook for up to $20,000 a month.  Or I could take the meds the insurance wanted me to, it was my choice. Just make this nightmare stop, already. Can someone just help me. 

I didn't want to make these choices. If I was going to be told I have cancer, I then wanted someone to come and say 'this is what we are going to do, and you are going to be fine. We will get through this.' I was falling farther and farther down the rabbit hole of hell at this point. 

My already enormous stress was now having to handle this getting tossed into the ring, and I couldn't handle any more. My doctor made appeals, sent over research, and tried a peer-to-peer call which the insurance denied and denied again. I was being pushed into insurance-driven treatment vs. doctor driven treatment. For those efforts I thank him immensely, truly. But the stalling of my treatment now going on for over a month was making me crawl out of my skin. And still no one was really talking to me, and I was left to sit. I didn't know what to think. The sour fruit was now putrid as can be and regurgitating up into my esophagus. 

This may not be all of their first rodeo, but it's mine. Everyone seemed to have missed the memo that someone new to all of this may require some insight, empathy, and closer correspondence to feel safe and reassured. I felt cast out to sea on a makeshift life raft, watching the fat cats on their gleaming yacht use their chubby feet to push me farther from shore, champagne in hand. I was going to drown. 

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​I decided to take matters into my own hands. I called Karmanos Cancer Institute in Detroit, ranking in the top 2% in the country and an NCI, 5-star status cancer center. From the first phone call my tormented guts began to let go, release, and soften. The coordinator spoke warmly, was patient, even allowed me to place her on hold because I had taken the call at work. She was on the phone with me as long as my first and only prior oncologist visit. She shared her personal experience with breast cancer. She got permission to pull my records and test results and got me in with their CML specialist first thing Monday morning. 

Pulling up to Karmanos the magic continued. The complimentary valet walked up with a smile first thing, opening our doors. I was pleasantly greeted by the concierge and then given a navigator take us to my department. I can see why, it was a huge and lovely place. Everywhere the vibe was up, people talking, first names used with familiarity between staff and patients, joking, laughing, helping.......it was beautiful and I was smitten.

I received a tracker when I checked in. Not so I can leave and be informed when I could come back, but so that they could track how long I was waiting and ensure they communicated with both me and the doctors if it took too long. I already felt like I was in another world, one that was healing, loving and caring. This was it. My heart skipped a beat, and I knew I had found a new partner in this journey.

From the nurses to the PAs and the doctor, everyone was amazing, caring, and took the time to sit and talk. We went over anything and everything I wanted. The doctor sat with us for literally an hour, explaining all options, asking if I wanted to record the conversation, and pulling up articles and information on my cell phone I could read more on at home. While the insurance wanted me on the first-generation drug for CML, and my first oncologist was fighting to get me on the second-generation drug, Karmanos wanted to get me into the clinical trial for the latest third-generation drug. Wait, what?

It had already been out for six years with great results, a different targeted therapy given to CML patients who either relapse or have a failure response with standard treatment. I could join 7 others at Karmanos (all doing well) and less than 100 around the country to get this as newly diagnosed and as a first round of treatment instead of last. The stats were promising, the research looked solid. This team was supportive, helpful, and positive. 

I took all of the paperwork on the trial home, my now new oncologist said I could opt for the trial or continue with standard treatment where he will back the choice for the second-generation drug chosen by my first doctor. I opted for the trial. I went in for my pre-screenings and signed the paperwork. I cancelled my follow up appointment with my original oncologist where I was actually going to see him again after 7 weeks after of our first meeting. I didn't want to. They never called me back.

I received a letter from my insurance; they approved the medication after all. For that I am grateful, and I now have that as a back-up if I don't qualify the trial for whatever reason. Even with this exciting news on the meds, still no call from my original doc. It was like they felt cheated on or betrayed that I reached out for a second opinion and their feelings were hurt. Well, I'm sorry but shame on you. I am not a lover or a friend; I am a newly diagnosed patient who needs reassurance. For you to not give me the courtesy of a call to let me know we won the battle and insurance approved the meds, to see what my second opinion said, and see what direction I wanted to go in, that's on you. I will no longer stand by and wait. It re-affirmed what I already felt. Now they can take me off of their packed roster and move on. I wish them all well.

And if this is how you are going to be, then this is where I need to break up with you. It's over. It's not me, it's you. I've found someone new.

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Highest Quality of Care
To receive the NCI designation, a hospital must demonstrate expertise in research, laboratory, clinical and population-based research. Hospitals must also provide early-phase clinical trials and conduct community outreach and educational activities. At any given time, Karmanos is conducting an average of 700 cancer-specific clinical trials and research projects.

Our researchers and clinicians work together to develop groundbreaking therapies. This commitment ensures that patients at Karmanos have access to the most extensive range of cancer treatments in Michigan - providing tomorrow’s standard of care treatments, today.

Learn more about clinical trials at Karmanos Cancer Institute here.