Warning: the following post contains references to poop, poop, and more poop. That’s just the kind of week that it was.
I usually try to keep my posts here on the lighter side because I try to stay positive, and even when I’m not feeling positive, I try to look for the positive because that sometimes helps me feel positive. This week, I’m having a hard time finding the positive. This last Sunday I woke up feeling fatigued (I have to remember to say fatigued instead of tired, as Lynn reminds me, when I mean weak and listless instead of just sleepy). I attributed that to stress or maybe a side effect of Nivolumab, as I sometimes have days now when I feel weak and listless, but thankfully those are few. I took a nap and later that day I felt OK, so I didn’t think anything more of it. Monday morning I woke up and I had diarrhea. It wasn’t the kind of mad-dash-to the-toilet diarrhea, but when I sat down to heed nature’s call, my butt-hole became a faucet of liquid poopiness. Not a big deal, unpleasant and inconvenient, but one of those things that can happen from time to time for a variety of reasons. As I said, not normally a big deal, except when you are taking immunotherapy drugs. Immunotherapy drugs can cause many different side effects, including Type 1 Diabetes, which I now have as a result of Nivolumab treatment. Another, and more common, side effect is colitis. Colitis, if not caught early, can be serious and life-threatening, which is why patients on immunotherapy and their doctors are on the lookout for early signs such as diarrhea.
I didn’t call the doctor right away because it wasn’t that severe at first. Diarrhea, like just about everything else I’m dealing with, has different grades. I won’t bore you with the specifics, but at this point, I was at Grade 1. If you’d like to learn more about diarrhea and grading, I refer you to the following page:
I waited until Wednesday morning to call my care team at Smilow Cancer Hospital in New Haven. I have a card that I carry in my wallet, and on that card is a phone number for the melanoma clinic there. When you call that number, an answering service takes your message and you then wait for a call-back. When you get the call-back, you give your information to a nurse and then the nurse tells you that she will speak with the doctor and get back to you. Several hours later that day, the nurse calls back and tells you what the doctor advises. This appears to be the standard protocol. It was the same way when I was being treated at Dana Farber in Boston. The doctor’s advise was to watch and wait, and to call back immediately if things got worse or to check back on Friday if things did not get better.
So I watched and I waited. While I was watching an waiting, I continued to have liquid poops. I also lost my appetite and was had to force myself to eat. Eating was doubly difficult because I also have diabetes. When people get diarrhea, they are told to eat bland foods and eat the BRAT diet. BRAT stands for bananas, rice, apple sauce. and toast. These are all high-carbohydrate foods that diabetics need to limit or avoid. People with diarrhea are also told to avoid raw vegetables, most fruits, dairy and fiber, and other things such as caffeine and alcohol. This doesn’t really leave much except for things like clear broths and water. Lots of water is important because you don’t want to get dehydrated. It’s hard to keep your weight up on that kind of diet and I lost seven pounds this week, so I now weigh about 20-25 pounds less than I did before I was diagnosed at Stage IV last July. As I told Lynn, I feel like I’m disappearing out my asshole.
I continued to watch and wait until Friday and that’s when I really began to question my medical care. By Friday, I was not only not better, but I was probably up to stage 2 diarrhea at this point. I called my care team around 8:30 Friday morning, and after the usual leave a message, get a call-back, talk to the nurse, nurse talks to the doctor, nurse calls back song-and-dance, I hear back around 2 pm and they tell me to go to local lab to do a stool sample for testing. So, I drive to the lab, but the lab does not have the lab orders from Smilow. We (the lab tech and I) call my care team, leave a message, get a call-back, and the nurse tells the tech over the phone what kind of lab test they want and that they’ll fax the order immediately. I wait there, and wait, until the lab tech tells me that I can go home with the kit and bring it back in the morning by which time they should have the lab order. Next morning. Saturday. I shat in the hat (this adventure would make a great Dr. Seuss book), collected my soupy sample and drove to the lab to drop it off.
Surprise! The lab still didn’t have the lab order, so they sadly cannot accept my offering. I call my care team, get the answering service, leave a message, wait for a call-back, don’t get a call back after 40 minutes, call the answering service, leave another message, and finally get a call-back, but by this time the lab has closed. Argh. I tell the nurse on the phone where I’m at and what I need and she tells me that she’ll look for a lab in my area and call me back. I wait for the call-back, don’t get the call-back, so I call my care team again, leave another message, and then get a call back from the nurse.
Excuse me here, I have to go poop. BRB.
So where was I? Oh yeah, call back from the nurse. She said that she couldn’t find a lab because she wasn’t sure what towns were close to where I was. She was also confused about whether I was in Plainfield or Plainville. I was in Plainfield, but anyway, we finally decide that I will take my poor poop to Smilow itself, which at this point is an hour and thirty minutes from where I’m at, not counting a stop at home to pick up Lynn. And to poop. At the end of this ordeal, Lynn and I drive to Smilow, find our way to the 7th floor and give the nurse my parcel of poop. She says that they’ll start processing it immediately but that it may take a few days for all the labs to come in. Finally, we head back home where I take a long, exhausted nap.
I didn’t count how many times I used the phrase my care team in this post, but that’s what they want me to think of them as. My care team includes my doctor, the nurses on his staff, and all the techs and support professionals that make hospitals run. However, I’ve been thinking a lot about that word care today. How much do they care and what do they care about? I could write another blog post on that subject but let’s leave it for now that I have to ask myself that question. I felt this week that I actually got worse care because I had cancer than if I didn’t. If I did not have cancer and had diarrhea, I would call my primary and he/she would tell me to try some over-the-counter remedy such as Imodium, or maybe they would order some lab work. I think that is what my care team should have done when I called on Wednesday, instead of waiting another two days for things to get worse. If this were colitis, getting it treated early can literally make the difference between life and death. I don’t think it is colitis, but they don’t know that. As it is now, it may be well into the next week before I know what’s going on with my gastrointestinal issues. If then. I’m trying to see things from their point of view, but I can’t. I can’t if they really care about patients and care about providing patient care.
So that was my shitty week. I could rant and scream to the heavens about medical bureaucracy, seeming indifference, confusion and incompetence, but instead I’ll just dump it all here.
Now, where did I put the air freshener?