It’s been forever since I’ve posted. I have 22 posts so far, and 22 people read it! Haha! I don’t look forward to posting like I used to. It just seems like a chore now, like one more thing to check off the to-do list (not like I make them, anyway, but hopefully you get the point).
Scott has had two more chemo treatments since my last post, for a total of 12. His next scan is in two days. Blah blah blah! It’s just our new normal. I don’t even know what I want to expect. Of course, I want to expect that everything will have shrunk (again), but you just never know with this stupid disease that has a mind of its own.
At Scott’s 11th treatment, which was 4 days after we got home from Hawaii, we mentioned to the nurse how our explanation of benefits (EOB) statements that we receive every so often list the price of all the chemo drugs, and one of them is $6000! Our deductible is $8000, way to meet it after one treatment. “$6000 is nothing,” she says. “I’ve seen some as much as $20,000.” That’s absolutely ridiculous. Affordable health care, my butt! How can that even be legal for big pharma to even charge that much?! 😳 How do these people sleep at night?
Also, at treatment #11, there was a special needs lady there who was getting treatment herself, and her dad was on the chair next to her. So sad! She was very emotional and she was expressing her feelings about the whole process to the nurses, but loudly enough that many people could overhear. "I'm scared about what the scans will say. What if the treatment doesn't work? Why does my daddy have to have cancer too? Thank you for being so kind to me; you are such a good friend." The nurses were so reassuring to her and comforting. She was saying all of the things that I wish I could say out loud, but it would be weird if I did, because I'm "normal" and don't have special needs.Maybe one of these days I just won't care what other people think and say what I'm thinking out loud like this sweet special lady did.
The doctor lowered the dosage on one of the medications, per Scott's request. The neuropathy is really getting to him and he's tired of having numb, tingly, cold feet all the time. We're hoping the lowered dose will lessen his symptoms, but we'll see. His tumor marker number is in double digits now, down from quadruple. That's supposed to mean that the tumor is dying; we'll see what the scan shows.
For chemo #12, he went by himself. I only go with him when we talk to the doctor. Judge all you want; I can't be there for everything.
Scan Day - I hate scan days. Too much waiting. Besides waiting to hear the results, his appointment is later in the day, so we have to wait for that too! During my morning errands, I hear The Eye of the Tiger on the radio. I blast it and call Scott so he can listen; it's one of his favorites. One line of lyric sticks out to me: Just a man and his will to survive! It has different meaning now. When we go to the center and he gets ready to go back, the nurse tells us there may not be anyone there who can access his port.Really? You can't be serious. That is something we'll have to check on in the future; we just assumed every nurse would know how to do it, especially if they work in radiology, when cancer patients get scanned all the time, many of who have ports.
The nurse gets his info and goes to try to find someone who can access a port; I asked if she could. No luck. Scott has to get stuck! Scott hates needles. He can't be elevated in any way when he gets poked or he will get light headed and faint. He requests to lie down and she proceeds to stick him. No luck. She got a valve, instead of a vein. So she tried the other arm, again no luck. She gets a radiology tech to come see if he can find one. He finds one in his hand and he has success, but OUCH! I've had an IV in my hand when I had my babies and they hurt! I'm glad they FINALLY found a vein. We'll definitely request someone who can access a port for next time. We request a copy of his scans so far and they give us a CD. I wish I could read them, but maybe if we bring it to the doctor's office next week, he can help us decipher it. Scott will call tomorrow for the written results. I hope we can sleep tonight.
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