Discoordinated care

Let me just get it out of the way right now. I’m not happy with my care team today. In addition to having melanoma, and diabetes, and lately colitis, I’ve started having another issue. As you might recall from my previous posts, I have been dealing with my latest immunotherapy-related side effect, colitis. My oncologist put me on a tapering course of steroids and that seems to have the diarrhea under control. I’m currently about half-way through the course of treatment and (knock on wood), things are getting better on that front. If anything, I’ve gone in the other direction as my bowel movements are normal when I have them, but they’re infrequent. For now, I’ll take not often enough over much too often. I’m hoping that I go back to being a regular guy once the steroids are out of my system, which should be in about ten days.

The new issue I’m having is also bathroom-related. I find myself need to urinate just about every hour, day and night. Often I have the urge to go but not much comes out or I do go but I never feel that my bladder is completely empty. I’m not in pain, but it’s annoying as hell and I worry that it might be a sign of something serious. Or not. I’ve had an enlarged prostate for years, what they call BPH (benign prostate hyperplasia). It’s something that a lot of guys my age deal with and something that I’ve dealt with over the years. It’s a rare night that I don’t wake up for at least one bathroom visit, but this recent episode is much worse, some nights every hour. I’m not sure that diabetes or prednisone don’t make this condition worse. I’ve read conflicting things in my Google searches, and my oncologist and endocrinologist both suggest I see a urologist (more on that in a bit). Of course, it’s hard not to think of the worst, that my melanoma has spread to my kidneys or my bladder, or even that I have prostate cancer. I really don’t think that that is the case here, but the mind has a mind of its own when it comes to the unknown.

Backing up. The last time I saw my oncologist, he prescribed prednisone and had me make a follow-up appointment to see him in two weeks, just in case. He said that I could cancel the appointment if I felt better and didn’t feel the need to see him. I did feel better, diarrhea-wise, but I was feeling not so great urologically. I called them on Monday of this week, described my symptoms and the nurse said that they would arrange a referral with a urologist and get back to me. They said that I’d be more likely to get in sooner that I would be if I just called myself. Wednesday morning, today, I still hadn’t heard from them about the referral. This morning I called them to see if the doctor wanted me to keep the appointment, in light of my progress on one front and in light of the new symptoms. I got a quick call-back from another doctor’s nurse, who took all my information and said that someone would get back shortly. I explained that I need to hear back soon because both my wife and I would have to arrange time off of work if I was going to keep the appointment. While she was on the phone, she gave me the name of the urologist that they wanted me to see. This was all by 9:00 am. I go to work and wait for the phone call. Hours pass. I’m busy at work and I can’t get away for lunch or to step out to make phone calls. Finally, around 4:00 pm, I call the urologist that they “referred” me, too. Turns out that he doesn’t see patients with urinary hesitancy, which is I guess what was in my chart, but they could offer me an appointment with a P.A. in about a month. Argh!! I took the appointment, but I don’t plan on keeping it. If I need a urologist, I’ll find one that’s more local to me. Next, aggravated beyond words with the lack of response from my care team, I called and canceled my appointment for tomorrow. I never did hear from them and I don’t expect to.

I’m not sure what would be the benefit of keeping the appointment. I guess my oncologist is good at cancer, but when it comes to other issues, he isn’t overly knowledgeable or concerned. The knowledge part is OK, I don’t expect him to be an expert in every organ and system in the body, but the concerned part is starting to piss me off, if you’ll pardon that expression. I’m pretty sure he would have just ordered the standard labs and then referred my to some other ‘ologist.

This is the frustrating part, that they tell me to call them at the first sign of any symptoms because only they can manage my care. They don’t want me to see another doctor without going through them first and they don’t want me going to the ER at all unless it’s a life-or-death emergency. That’s what they tell me, but my experience has been the opposite of that, that calling them just adds delay when I’m likely to be referred to another specialist anyway. Well, I’ve accepted that this is the age of specialization and I’ll let my specialists specialize. And if I have an issue that needs prompt attention, I’m going to the ER or a walk-in clinic. The idea of coordinated care sound lovely, but I’ve realized that the only one who can truly coordinate my care is me.

In other news, I had hoped to have cute chick pics showing the chicks romping in their new coop. Very sadly, we decided to re-home the chicks. For a variety of reasons, we decided that this is not the time. That’s not to say there won’t be chicks in our future. We were both looking forward to welcoming new lives in our lives and giving us a pleasant distraction from all the melanoma crap. We haven’t given up the idea, but next time we’ll have their home set up before we bring them into our house and hearts.

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