Echos of experiences past

This week, one of our challenges has been getting a medication for low phosphate. Mom’s blood tests from Monday came back with low phosphate levels. Then we went through the following steps:

  1. The doctor sent in a prescription to the pharmacy (which is done by fax).
  2. The pharmacist said that the prescription was no longer available (sent a fax back to the doctor and called us).
  3. I called the doctor the next day because we had not heard anything (left a message).
  4. The pharmacist called us saying they had found something, could order it for the next day, but that it wasn’t covered by insurance and would cost $169. My jaw dropped. That is insane. We said that was too much, they needed to find another solution. So the pharmacist faxed back to the doctor.

We didn’t hear anything the next day, so yesterday I called to figure out what was up. After I finally got someone in the know on the phone, she said they had been working on it since they got the message from the pharmacist, but didn’t want to call us until they had a solution. I am encouraged to know they were working on it, but it would have been really helpful to me if they had called to let us know they were working on it. Meanwhile, we are here wondering what the effects of low phosphate are – we know it isn’t a medical emergency like the hypercalcemia, otherwise they would have sent us to emergency.

When we did get a call with a plan, that plan is for an infusion. The $169 pills might have been an OK solution (we can afford it) if it was a one time deal, but the doctor didn’t know if that was the case. It is a lot of money if it is needed regularly. The plan now is that today, Friday, mom will go into the chemo suite and get a 4-hour infusion of phosphates. Then on Monday, we will do blood work to see if the infusion was effective.

We are entering today with a sense of curiosity – very much like my first experience with chemotherapy. We will get to see what the infusion centre looks like and experience the process. Fortunately, the medication mom is getting is not toxic, and will likely make her feel stronger.

I am struck by the parallels. The foibles in the system are very similar to my experiences in California. The medications may be different, but we still run into issues with insurance – what is covered and what isn’t – and needing to work around the constraints of insurance.

The healthcare team is working to help her. I feel like the team of doctors and nurses are working together to care for mom – however, they aren’t necessarily that great at keep us in the loop. We get directions on what to do, but no insight into the decision making process or the work that is going into making things happen. There are times when it feels like our queries are going into a void – but they aren’t. A day or two or three or four later we discover that someone did hear the question and is working on the answer.

Yesterday we also got a call about clinical trials but we were not home. They only left a message saying they had information, so this morning I will call back and see what is up. Since we’ll actually be there for the infusion, I can ask outstanding questions when we are there. I’m also hoping to get my hands on the pathology report today.

I worry about what will happen when I head back to California next week, but I also see that mom is so much stronger now than she was when I arrived. She also has a lot more people looking in on here. CCAC and the palliative care team are amazing. Mom can call the palliative care NP (nurse practitioner) anytime she has issues with pain. We also know that the NP is talking to the oncologist (she told us she had a conversation with the oncologist) to ensure that the pain meds mom is getting don’t interfere with the chemotherapy. Mom mentioned yesterday that she was surprised how she was not in pain –  but also it made her more aware of just how much pain she has been in over the least few months. Hopefully we can figure something out that keeps her not in pain!

  • Becky

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