I was actually a little excited to head to my chemo appointment today. Still soaring from the high of the tumor shrinking, I couldn’t wait to get started on a drug regime that would continue this progress. After all, progress this good needed a swift kick in the butt to keep going.
Sadly, upon arriving I discovered I was meeting with Dr. Brooks’ nurse practitioner. Until the phone call yesterday, I really didn’t like to work with her. I remembered why within seconds of our meeting today. As always, she only knows what little he tells her –which, I admit, is his fault too– and she rarely has the answers to my questions. She didn’t know how long he planned to keep me on this chemo. She also didn’t know what our next plan would be if this didn’t work. To make matters worse, when she brought up my MRI results the difference she had told me over the phone was incorrect. My tumor had not shrunk two centimeters on all sides. In fact, it shrunk barely a half centimeter in one direction. Upon reading the results, the radiologist stated there was a “slight” decrease in the size of my tumor.
That was the first strike of the day.
I was completely disheartened with that information by time I plopped into a chair in the chemo room. My tumor had not miraculously started to disintegrate. I was frustrated and disappointed; I felt especially let down by Linda’s inaccuracy in passing on details from an MRI result. It was grossly misrepresented to me over the phone and the relief I had felt from yesterday was washed away. I had literally laid down last night and cried a little saying, “I’m going to survive!” Now I felt as if I had been sucker punched and the question of my mortality was still hanging in the balance.
The nurse, not Carla, drew my labs and we set to waiting. About five minutes in, Linda and another woman arrived to talk to me. Apparently, they had not worked out the details of cost and coverage for my drugs despite having more than a week to do so. When they called my insurance company today to demand an answer, they found the office closed for the holiday. When they called the drug company to see if I would qualify for their replacement program, they scoffed at how much Milo and I make and said no go. I could file an appeal, but there was no guarantee. Meanwhile, if I wanted to go ahead with the dose today, I would need to at least make a down payment and hope my insurance would cover the rest and reimburse me for what I paid.
Who thinks that sounds unlikely? Yea, so did I.
They decided that we’d try to get poor Dr. Brooks on the phone while Milo, Malika and I went to find something to eat. No one wanted to pay the chemo bill today and they wanted to know what we should do in case the companies never work out the cost. (For the record, I am not being cheap here. The chemo treatments are projected to cost about three thousand dollars each!)
Just before we left, Malika let me open the Christmas gift she and John bought me. It’s a Kindle Fire “so I no longer have to lug my extremely heavy laptop” to chemo. I burst into tears at how nice she and John are. I couldn’t believe that one of my friends, especially one in school, would spend so much money on me. I honestly couldn’t even get the thank you out, I was crying so hard. I did a lot of crying today. Damn acute emotions!
We went to lunch and tried to find a case for my new toy while they worked out the fine details of chemo. It was a few hours before Linda called to tell me Dr. Brooks’ decision was to put me back on my old regime (the cisplatin/Gemzar) this week and start the new stuff when I return in January. I didn’t like that idea. I haven’t been on chemo for five weeks as of today. The tumor hasn’t grown. It really hasn’t even shrunk based on the numbers I saw in the report. Sure, we weren’t losing ground, but what is the point of dumping highly toxic chemicals into my body in hopes that two weeks from now they’ll all have their acts together? It’s Christmas, for goodness sakes. I want to enjoy it!
I don’t know if this will be my last Christmas. In fact, I said the other day that the only thing I really wanted for Christmas was a cure so that I could be here fifty more Christmases. I want to get better, but I also know that I have to live the days I know I have. I have today, the day of our Christmas party. I am fairly certain I will wake tomorrow and Sunday for the holiday. Next week, we’re have plans for New Year’s Eve. I want to enjoy all of that and I can’t with the Cis/Gem. I know that those drugs will make me sick, possibly as bad as I was back in August for the first dose. Who wants to spend their holidays like that?
Against the advice of Linda and Carla, but with the backing of my husband and Malika, I decided that I wasn’t going to let them treat me with something we knew wasn’t really working. In two weeks, we can try again and if they still haven’t sorted things out then I will let them treat me as they see fit. Until then, I’m going to enjoy this Christmas with my family and trust that God and my body will work with me on this.
It might not have been the right decision, but it was mine. I pray the consequences are only an irked Linda and Dr. Brooks.