I posted this this morning on the discussion boards at the LLS site:
Last night when we got home from the onc visit, wherein she told me she was surprised I was still so fatigued, and was I sure I wasn't um, er, perhaps depressed? Luckily, my husband was sitting next to me and assured her it was not depression, I was too floored to really respond. (mind you I had gone to her recommended psychiatrist, then her recommended psychologist, and had just had the cognitive testing she recommended--Each of them telling me I wasn't depressed, that my reactions were normal for the situation, and that there WAS some cognitive rehab they could offer for the missing abilities) Then she recommended physical therapy, again, tears in my eyes, but this time sighed deeply and said "ok, if you think it will help." And she happily wrote out the referral, talking about how getting some exercise will be beneficial. But I get exercise, I tried to tell her. I walk the dog almost a mile a day in the morning, then putter around all day long doing things. Yes, there is significant couch time, but as soon as I get a breather in, I get back up.
And then she said if that didn't work, I might want to try Ritalin. Yup. Ritalin. My mouth fell open and I said, really I was lucky enough to have the luxury of being able to slow my life down, husband was picking up financial slack, and I would prefer not to be on Ritalin. Not an extra drug thank you very much.
And no, she is not just a regular onc, she is a CML expert, doing all kinds of research at Fred Hutch. Her latest trial is for some add-ons to gleevec trying to isolate and destroy the T-cell that causes all this.
So back to my story: we get home, and Accredo has not delivered the package of Sprycel like I was told they would 2 weeks ago. I am now down to just a few pills. I call them, and although it is after hours, they have someone who answers the phone, looks up my information, and tells me it was never ordered.
I fell apart.
How can it be this hard. All the time. And this is a specialty pharmacy, they KNOW what these drugs are for.
The nice woman on the phone kept apologizing and said she has reordered it. I thanked her, hung up and fell on the floor crying and hugging the dog. Husband came over, crawled over next to us and held me. (he rocks!)
But I called this morning to check up on her. Turns out she was smoking crack. It was ordered and supposedly going to be delivered today, not yesterday. They had the tracking number and everything. Could see it on the truck, should be here in 45 minutes.
So all of that last night was for nothing! I told the new person on the phone what had happened and then wished bad things to happen to the first person. I immediately quantified what bad was (I don't need no more bad karma! --bad grammar on purpose): she should not be able to find her car keys for two hours.
Person on phone laughed.
Sigh.
Did I mention I have bronchitis, was treated like a leper at the cancer center, and just about passed out when I was told to take a deep breath and started hacking up a lung. (I don't mind the leper part, I would never want to make anyone else sick, especially a compromised immune system person).
So, to all those who think this is a walk in the park...............I blow huge raspberries at you, and hope you never have to find out for yourselves how hard this is.
Caroline
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