OK, let me get this out of the way now. I am currently tired of people who tell me to have a positive attitude. Fuck that. I’m tired, and frustrated, and sick. Don’t tell me to have a positive attitude. Don’t tell me what to feel or what to think. I know you mean well and all, but you’re just pissing me off. I’ve earned my bad attitude and I’m going to wave it like a flag if I want to. And that goes for anyone with cancer, or any serious illness, or any other pain-in-the-ass life circumstance. Back the fuck up with your positive attitude and let us feel what we feel and get angry or moody or pissy or sad or whatever it is we happen to be feeling in the moment. Where do you get off telling us not to feel that? Offer an ear, or a shoulder, or words of support. That is what we need from you. We do not need an emotion coach. Our emotions are the only thing keeping us sane and if we aren’t allowed to feel them we will go crazy. Seriously crazy. I apologize if our emotions make you feel uncomfortable just as I’m sorry that our cancer makes many people uncomfortable, but we did not choose this. I apologize if our bad attitudes are not socially acceptable, but learn to deal with them if you truly want to “be there” for us. Bad attitudes are just another symptom or side effect like fatigue or diarrhea. We may not have it all the time but when we do, please don’t tell us to ignore it or push it aside. There’s no way around it but through it. Deal with it. We sure as hell have to.
Here’s the other thing. When you tell someone to keep a positive attitude, it’s a little bit like blaming the victim. I’m sure that never occurred to you, but when you tell me to keep a positive attitude, I’m thinking “Christ, another thing that I’ve failed at.” Well, not today. My bad attitude and I are doing just fine today, thank you very much. Tomorrow I might be all rainbows and sunshine but today this is how I feel and that’s OK. OK?
Let me tell you about my week. I spent another week dealing with the four horseman of my insurance coverage: Cigna, CVS Caremark, CareCentrix and US Med Supply. I swear to god that I’ve spent more time on the phone dealing with these companies than I spent in my previous forty years as an insured adult. Much more. On Saturday, I finally received the supplies for my CGM which allows me to get accurate and continuous readings of my blood glucose levels. In the meantime, I ran down my supplies of glucose test strips and have still not gotten the refill to go through. I’m sure that there is more paperwork someone needs to fill out for one of the aforementioned horsemen, which means a few more phone calls next week. Even though I have my CGM supplies, I still need to have test strips for those times that I need to verify my sensor reading or for those times that my sensor is off or offline.
Also, this week I finally got pre-approval for my PET scan on Monday. I was really anxious about this because I know that insurance companies don’t like paying for PET scans because of the high costs. Cigna originally denied it and then my doctor had to schedule a peer-to-peer meeting as part of the appeal process. I didn’t hear much more from my doctor’s office than that they were going to schedule the peer-to-peer last week. I contacted them several times and got the same answer. I didn’t call for a few days figuring that they would let me know if the status had changed, but finally I contacted them on Thursday. They told me that it had been approved, but they only contact patients if the procedure was NOT approved. Sheesh. I called the insurance company to verify and got the authorization code for the procedure so I know that the PET scan is truly on for Monday. At this point, I don’t trust anybody.
Lastly (I think), I got in to see a urologist on Friday regarding my urinary issues. To recap, I’ve got an enlarged prostate which is making it difficult for me to fully empty my bladder and which causes me to go to the bathroom frequently. This is especially annoying at night as I need to go to the toilet 3-5 times per night. I can’t remember the last time I slept through the night. The urologist didn’t see anything wrong other than my big prostate and he prescribed Flomax. I filled the prescription but I haven’t taken it yet because I’ve read that it can cause elevated glucose levels and I need to keep those levels in control for my PET scan on Monday.
Yeah, that PET scan. This is the big one. That and the MRI on my brain that I’m having the same day. My last two MRI and CT scans have been stable, meaning that there have been no new metastases and no growth to the existing lesions. Now the PET scan will tell if the existing lesions are active tumors. They do this by injecting me with glucose and the areas with active tumors will “light up” on the scan as the tumors feed on the sugars. Under normal circumstances, I would be extremely anxious about these scans because this will tell if my treatment is still working. I hope so because I’ve been kicked off the immunotherapy treatment due to my recent bout of colitis. As I’ve stated before, I don’t really have a plan B if the scans show active disease.
And that’s under normal circumstances. Nothing is normal about melanoma. Because PET scans are based on the uptake of glucose in the blood, it is important that my blood sugar is not too elevated going in to the test. I’m not allow to eat anything or have any insulin for six hours before the procedure and my blood glucose level needs to be below 220 just prior to the procedure. If it higher than that, the test will need to be rescheduled. If my glucose drops too low in those six hours, I will need to treat it with food, and the test will also need to be rescheduled. No pressure, right? The only advice I have is to eat a high protein, ultra low-carb diet prior for 24 hours prior to the test. So far today I’ve consumed a four egg omelet with cheese, four ounces of vegetable juice and a Muscle Milk protein shake for a total net carb count of about six carbs. I’m concerned because my glucose level this morning had crept up to 229 before I treated it with insulin. If it does the same tomorrow morning, I won’t be able to treat it. I’m currently at 123 and holding steady. Knock on wood.
Getting back to my attitude for a minute. I’m really trying to keep a positive attitude, especially when it comes to tomorrow. I do believe that thoughts matter, but so do emotions. They are both part of my reality now. I hope I haven’t offended anyone with my rant. I just needed to get this off my chest.
I truly hope that this old saying is true:
The people who matter don’t mind, and the people who mind don’t matter.
Good luck to us all.