I spoke with my mentor MJ yesterday. She has been through breast cancer and has had much of the treatment that I have had and will have to have – sans the radiation. She said that I should insist on a Mugga test (a test of heart function) prior to surgery. I am slated only to have an EKG prior to surgery. MJ said that with the drugs that I have been on (chemotherapy and the Herceptin) that I should definitely have this mugga test to make sure that my heart has not been damaged by the drugs. In particular, she said that because I went into anaphylactic shock from the time that Taxotere was administered without steroids, that I should insist on getting a mugga test to rule out damage to the heart after that event. I agree. However, I don’t know that I will get any doctor to agree. But, we shall see.
I see my oncologist today (the one that doesn’t read my file). I cancelled our last appointment because I saw it as pointless and I had already seen the specialist up at UCLA the day before. My oncologist was pretty surprised by my canceling. But, I just could not meet with him. I felt my health depended upon my NOT meeting with him. He always brings me down with his ignorance. He really does not have a clue about the kind of cancer I have. He didn’t even know which chemo drugs I was on or that I was on Herceptin – or at least he didn’t know the significance of my being on Herceptin. Instead, he talked about the possibility that I could get brain cancer because Herceptin does not reach the brain.
What a moron. I mean what is the point in telling me that? When I told the specialist up at UCLA what he had said, she was angry. She said that it was ridiculous for him to put that on the table and that the chances of that happening were very, very low. And, she said if it were to occur, that there was a drug for that too that is like Herceptin but that reaches the brain. (Dr. Doom instead told me that I would have to have brain surgery – – good Lord, what an idiot). I mean that is so pointless to talk about. It’s like saying, “You know if you trip and fall you might break your hip. You might get arthritis one day and have a lot of pain in your hip. Then you might have to have hip replacement surgery. Then you might have complications from the surgery and then . . . ”
I mean really, what is the point in telling me about some remote possibility and then describing in detail the treatment for that remote possibility and how problematic it is. What an idiot. The specialist up at UCLA was so upset by his telling me that. Her exact words were: “You need to get out of there, he doesn’t know what he is doing.”
She did, however, like my surgeon. She knows her, has a lot of confidence in her. So that is good. I like both of my surgeons very much. I have two surgeons, the surgeon who will remove my cancer and my reconstructive surgeon. They are both excellent.
I feel very lucky to have the reconstructive plastic surgeon that I have. She does amazing work. She is not part of my network. But, I was able to get her anyway (thankfully my insurance agreed to it). She is the only surgeon at Hoag (and one of a very few surgeons around) trained in a type of microsurgery for breast reconstruction. It is really amazing what they can now do. Unbelievable. So, I feel very lucky in that regard.
I have to say that when I was first diagnosed, the last thing I thought about was reconstruction. I just wanted them to go in and get it out. All I could think about was surviving. And, of course, that is my main focus. There is not much point in having pretty breasts or breasts at all if I still have cancer. So, it is all about becoming cancer free. And I will. But, I realize now that part of surviving is having great reconstruction results. So it is great to know that I have a top reconstructive surgeon. She specializes in reconstruction (where as most breast reconstruction surgeons that people get are also cosmetic surgeons and handle everything from botox to liposuction). I am grateful to have my surgeon.
So, I am bracing myself for another meeting with Dr. Doom. Even though I know he doesn’t really have a clue about my cancer or the significance of my getting Herceptin (the wonder drug for my kind of breast cancer), I am still affected by what he says. The last time I had a meeting with him I left the visit in tears. I hate to admit that this jerk – who has no time to read my file and argued with me about how many chemos I had been through – could reduce me to tears, but he did. It was a combination of the fact that he had not read my file, that I spent the entire time correcting him about very basic things in my treatment and diagnosis and that he told me that there was no way that I could have a complete response to chemotherapy. (A complete response means that the chemotherapy killed all of the cancer). As soon as he told me that, I knew he was wrong. Who is he God? He can not know that.
I knew that I should not give any credence to what he said that day because he is simply ignorant (ignorant about my type of cancer and ignorant – by choice – about me). But, even though I know this, it was impossible for me not to attach some significance to what he said – in spite of the fact that he was wrong about so much during our meeting. Still, it was so hard not to think that maybe he was right. And, it was just so upsetting to realize that he is not invested in my care at all. That felt horrible. But, that is why I am seeing the specialist up at UCLA. She says I am having a great response to the treatment so far. My surgeon also says that I am having a great response. In fact, she said she can not feel the cancer any longer and she thinks there is a good chance that we will find that I have had a complete response.
I am going to let him have it today if it becomes clear to me that he has not read my file. I should bring a tape recorder to tape that discussion. Maybe he will surprise me and he will have read it. I really hope so because it is so depressing to see him and to go through that – learning that he hasn’t bothered to prepare for our meeting and that he clearly has no idea what is going on with me.
I know he finds me difficult because I have expectations. I come in with my legal pad (I’m sure he loves that) and all of my questions and well, he doesn’t care for that I don’t think. But, he works for me. At least he is supposed to.
Well, hopefully the meeting goes well. Maybe he will do better after my canceling our last appointment. He didn’t get paid that day. He was really perplexed by my canceling. I was in the office for my Herceptin treatment and I told the nurse I didn’t want to meet with him. I told her why (that he doesn’t read my file and that he depresses me). So she told him that I didn’t have any questions and that I didn’t feel that I needed to meet with him that day. He came over and said, “So you don’t want to see me today, I am hurt”. I guess now he is a comedian. He then said that he had to see me before surgery and actually scheduled today’s appointment himself – that may be the most work he has done on my case to date – scheduling an appointment. 🙂
I have to think I am the first patient who was already there at the doctors office (had to be there for Herceptin) and told him to go away basically. I mean, I had to sit there for treatment anyway, so it wasn’t like I was saving time by not meeting with him or getting to go home early because I cancelled. Instead, it was a clear message that I did not want to see him. So maybe this time he will prepare for our meeting.
Well, I guess I am being pretty harsh. I do have to give him credit for suggesting that I take Claritin for the bone pain that is caused by Neulasta (the drug I get to boost white blood cell production). The Claritin really worked. But, he gets no points for his bedside manner or his lack of preparedness for our meetings.
Wish me luck with this guy today. I just can’t let him take me down. So, I won’t. In one ear out the other.
cancerfree2b 
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