Not proud

I am not proud, but I did manage to get Smilow to have me start treatment tomorrow (Monday). I did happen to cry on the phone after they told me they were having trouble getting me an appointment. Mind you, they didn’t call to tell me that, I had to call them. It was at the end of the call, and I couldn’t help myself, I had to say something. “You know, it isn’t stressful enough to have cancer, and then I have to deal with this.” That’s when I started to cry. And, no, I am not proud, but I also don’t think it should have to come to that. Within the hour I had a message saying that I was on the wait list for treatment on Monday (this was Wednesday).

So, good, I was on the wait list. I asked if they had started the process of ordering the revlimid. They had not, I have to have a pregnancy test first. I wrote back “If you put the order in I will go take the test.” Really?  You’ve known I was supposed to start this treatment for three full working days and you didn’t get this started? It has to be ordered from a specialty pharmacy and overnighted to me. They write back and say the blood test orders are in. I go and get the blood work done.

Thursday goes by. And then it is Friday afternoon. I have heard nothing, which at this point is no surprise. I have somewhat resigned myself to the fact that I will not be starting treatment. I send them a message saying I assume since I have not heard anything I will not be coming in. (They told me I was wait listed but never explained what that meant.) I get a message back “You are scheduled for 2:00.” Well, thanks for letting me know! I ask again if the revlimid has been ordered, the response “The Hcg isn’t ready yet, when it is we will order.”

So, I happen to have two revlimids left over, which I will start to take tomorrow night. And I don’t think much about it, and wasn’t sure what the Hcg was. I was actually mixing it up in my mind with another test. But then Saturday night I look it up, and of course it is the pregnancy test. They are saying that a pregnancy test that I took Wednesday afternoon is not resulted by Friday afternoon? That is crap.

This experience with Smilow is crap. I sometimes blame it on the fact that they are not acting as the lead for my treatment, but I am not entirely sure if that is the case. And now I am a little bit embarrassed to show up there tomorrow afternoon being the woman who cried on the phone last week, But maybe they should be the ones who are embarrassed.

Venting

Arrrgggghhhh…

I sent a message (via MyChart) to Dr.Seropian’s office early Friday morning to start the process to schedule my consolidation chemotherapy treatment. I knew I wouldn’t be able to start this week, but figured next week would not be a problem. I also called to cover my bases. I received a call back from someone in the office who said they would call me as soon as they figured out the best time for me to be seen. Fine.

End of the day Friday, nothing.

And then the long weekend. And yesterday (Tuesday) I’m back to work and although I had a dream Monday night that they couldn’t see me until November (love those anxiety riddled dreams) I forgot about it until 5:00 p.m. when I realized I hadn’t heard anything. I called, even though it was after hours, so I cold at least leave a message. I spoke to someone in the office who said she would get the message to someone right away and they would get back to me as soon as possible. I thanked her and even said I didn’t expect a call back that day and tomorrow would be fine.

I just realized it is 10:00 – and still nothing 😦

Just sent another message (the nurse who responds to the messages is very efficient and quick to respond, although she is not the one who schedules).

When the medical system causes more stress than the disease and the treatment – there is something wrong with the system.