Communicate, Before it’s Too Late!

 I go to the Spa tomorrow for a check up, but I just realized how sick the Crestor, a medication I take for the side effects of my chemo, was making me. This past week I was so weak I couldn’t walk to our corner restaurant (we live in NYC and walk EVERYWHERE). It was something like a 115 heat index, and I blamed it on that. My pee changed color. It didn’t get “dark” like it says in the side effects, so, eh, I blamed it on that. My back and legs hurt, my legs were weak, but I was working on a writing project and sitting all day and blamed it on that. I thought my eyes looked a little weird, but, eh, I am probably seeing things. I also had terrible stomach pain in my upper abdomen, right under my rib cage. I blamed it all on the Targretin, as well as my sour mood. 
Then something magical happened. I ran out of my Crestor and forgot to refill it (I was forgetting things A LOT, but, eh, chemo brain). The day I was off it was magical. I cooked for the first time in a month. I put on makeup. I went for a walk. Then my husband researched the side effects of Crestor and realized I was having a really bad reaction to it, as I did to the Tricor. I tried to call my oncologist, but, of course, 5:01 on a Friday, they were out of there. I called my neighborhood pharmacist who told me to stop taking it immediately, but to be sure to see the prescribing doctor as soon as possible so my triglycerides don’t get out of wack. 
During this time, I also shaved my head. Well, I used the clippers on my head, #8 setting. I found at least 4 lesions I’m sure are malignant. They look like melanoma. I’ve had it before, and I hope I’m wrong, but my hair has been concealing these lesions. Tonight I might redo it with a #4 setting so I’m sure the dermatoncologist will see them. 
Now, why didn’t I call the doctor right away when I was feeling sick? Because I’m afraid of speaking on the phone, especially to doctor’s staff. I’ve been in the office many times when I’ve heard nurses or whom ever is on the phones sigh and make unkind comments about whomever is on the other end. Unkind comments about a patient who has cancer. Because of this, I prefer to use the patient portal and email the symptoms to the doc. However, last time I did that I got bitched out by the nurse. Twice. She called me to yell at me and responded to my email and yelled at me. Maybe not yell. But certainly not professional. 
I have a PhD in communication, and I have studied patient-caretaker communication. You’d think I’d know better. Tomorrow I will be presenting my list of symptoms to my oncology team. I will also be presenting my analysis of the patient-gatekeeper (receptionist, nurse, etc, the one you speak to before the doctor) in the office where I am a patient. If I thought I wouldn’t be yelled at, I would have presented all these symptoms to my oncology team. Isn’t that what technology is for? This is the only place where they have technology like this, yet still depend on antiquated communication modes like the phone. It is much easier for someone with white coat anxiety coupled with communication anxiety to write an email then to call. You’ve all experienced it, I’m sure… A medical provider who just sounds exasperated on the phone… Who wants to talk to THAT?! I’d rather wait till my next appointment and tell the doctor in person, like I’ve been doing. 
In retrospect, I should have called the oncology team about a month ago. It’s when they changed my statin and I saw them last. But I didn’t know it was a bad side effect from the Crestor– I was told to expect some from the Targretin, and figured this was it. I also have a very swollen node in my groin on the same side as the melanoma looking thing on my head. I should have called earlier, but I could imagine what the nurse was saying on the other side, and just couldn’t take being THAT patient. 
Tomorrow, however, I will tell all to the doctors, and suggest they reexamine the purpose of the patient portal. It should be to communicate with patients. Thank Gd I ran out of the Crestor, or I would have never known I was having a bad reaction, and who knows what would have happened. 
So this ends on a happy note, I feel great today, and am looking forward to a trip to the city with my hubby, our last “date” before our son comes home from camp on Tuesday. I hope I will give him good news from my trip to the spa tomorrow. 
And please, if you are feeling weird, tell your doctor! That’s the take away. Don’t let yelling nurses prevent you from receiving treatment. I will continue to tell myself this until I learn the lesson.  

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