On an Adventure
With no Her2 results back yet, there is nothing I can do. I could sit around and wait or I could take a few days with my daughter to tour schools and have a little fun. It wasn't a hard choice.
We got up early and had a crazy busy day:
5am - Drive 2 hours to Nashville Airport
5am - Drive 2 hours to Nashville Airport
10am - Fly 2-3 hours to LaGuardia Airport
2pm - Drive 4 hours (traffic) to Harford, Connecticut
6pm - Arrive at the hotel (pretty tired)
Oncologist Finally Calls
And then at 6:30pm, I finally got the call from my Oncologist. I had been waiting for someone to call since my MRI results had been released over 2 days ago. It felt like is was past time to hear from someone. I was surprised, not surprised! The conversation was a bit awkward.
Here is basically how the first conversation went after we both said hello to the other (enjoy the paraphrasing which gives you more on the context than what we exactly said to eachother):
Me: "Yes, I did."
Her: "Do you have any questions?"
Me: (thoughts) Are you kidding me? Yes, duh! You throw it back on me to ask questions and are not telling me anything. Just vague BS.
Me: "Yes, it looked bad."
Her: "Yes, it did."
Me: (thoughts) WTF?!? Did she just say that. And she still hasn't told me anything. I guess this whole conversation is on me to lead.
Me: "It looks like it is very aggressive. Maybe, you can explain to me what you see."
At this point, she basically reads the results paragraph directly off the MRI to me - I already saw it days ago, I already know what she is telling me. We go back and forth. And I feel like I am pulling teeth,
After I mention how lucky I am to have found this and that it was challenging to get the diagnosis, she gives the closest thing to an apology I am going to get from her, "The biopsy issue was a learning curve for me. I did not realize biopsies are not done on Friday afternoon at the Breast Center. We were just trying to get you in at the earliest appointment time."
Her: "I, and a few nurses, have been reaching out to the pathology group to check to see if your Her2 results are ready. They aren't. I have told them it is urgent. I looked right before I called you, and they are still not ready."
Me: "I am actually surprised you called me. I thought you might wait until the Her2 results were back and wait to call me until you had both the MRI and Her2 results."
Me: (thoughts) I am being sarcastic because of course she should call me with the MRI results; she should have called me on Friday night.
Her: "I was considering doing that." pause "Then I thought I should call since you may have seen the MRI results."
Me; (thoughts) Holy crap! This is bad... she would have waited even longer to tell me some of my results. I don't think this is the right Oncologist for me, but I feel pressured to stay due to not having a lot of time.
Since I feel trapped, I asked a few basic questions about what type of treatment I might have to take if I am Her2+ or Her2- or Triple Negative. She gives me a brief explanation, but uses a ton of acronyms like I know what they are. At this point, I am feeling like I am pretty done with this conversation. She isn't really giving me too much and we don't know what we are fully dealing with. What we do know is that this cancer is spreading fast and the longer we wait the worse it will be.
Me: (thoughts) Say what? Are you kidding me? It is Monday... I see him Friday. I would think they should be in before then. Aren't you going to call me back with the results? Plus, a Breast Surgeon only deals with surgery... he doesn't lead my treatment plan and isn't my Oncologist... I should see you first... and my appointment with the you is two weeks away.
Me: "Ok. I guess. I do want you to call me as soon as the Her2 results get back."
Her: "Hopefully, the results will be in soon. I did notice your appointment with me is scheduled pretty far out. We can keep it like that for now and always change it."
Me: (thoughts) WTF?!?! You don't even want to see me on Friday when I get back. I am seeing my Primary Doctor and the Breast Surgeon, but you aren't even concerned about seeing me! You should be the first face I see!
Me: "Ok." (dumbfounded)
I re-remind her that I am with my daughter for the next few days, but I would like to be contacted once the Her2 comes in. She assures me she will notify me of the Her2 results and we can then discuss the treatment plan more specifically. I am thinking, we are sorta leaving it on a good note.
I was taken of guard and never had a doctor talk like that and in that tone to me. It was off-puting.
I did have a response:
"I am very unhappy about the way things have gone. I really felt like that no one was listening to me and it caused a lot of stress and frustration. With the diagnosis I have and it spreading so fast, I don't feel like I have time to find another Oncologist. But, I don't know what I am going to do. I have contacted MD Anderson and am going to go there to get at least a second opinion. So, I definitely need them to get my records and things from you. I feel kind of stuck right now which is frustrating."
She basically says, "Alright. I will call you with your Her2 results and we can talk about it then."
Thank Goodness that is Over
We end the conversation. Everything around me feels awkward. I look at my daughter who is in the hotel room with me. She heard the conversation and gave me the look like that was not fun... that was the opposite of fun. Then we took a few minutes to talk about how crazy that conversation went.
Guess I will have to find time because it is very important that you feel heard. And there is nothing wrong with speaking up and advocating for yourself!!! It is hard. No one wants to do it. Confrontation sucks. My goal is to do it in the most respectful way.
Now I am going to go have a great time with my lovely daughter. We are enjoying the brisk fall weather while looking at a few colleges over the next few days!
Inspiration Song, I Won't Back Down by Tom Petty & the Heartbreakers