So today we drove down to Tacoma this morning to go to the oncologist. It was time for Rio’s bi-weekly CBC and we’d also planned a recheck ultrasound. Sounds like a quick and mostly painless appointment, right?! Rio and I arrived there at a few minutes after 9 this morning, and didn’t leave until nearly 4:15! Seriously!!!!
I don’t want to spend a ton of time complaining, but the way Summit does their testing and chemo administration is really stooooo-pid! They don’t give you an appointment; it’s all drop-off, and they squeeze it in when they can throughout the day, then call and you come get your pup. Very efficient for them, and normally it wouldn’t be a huge deal, except that I drive over an hour just to get there, so drop off isn’t really a good option for me. (But seriously, neither is sitting in the vet’s office for more than 6 hours.)
Okay, deep breath…. ‘Nuff ranting for the moment — the overall results of the tests are pretty good, so far (we don’t have final CBC yet). Rio’s ultrasound results are pretty much the same as last time, with the exception of her adrenal glands — one of them is enlarged. Not to worry, though, because this has nothing to do with her cancer. It’s the stupid Cushing’s. No obvious mets, though, so mom is deliriously HAPPY about that!
However, Rio has, over the past few weeks, also developed a really bad “rash,” (though its not itchy, just lots of small raised bumps all along her spine). We (her doc and me) think it may be calcinosis cutis, which is another symptom of Cushing’s, although one of the less common ones. The other possibility is that it could be a manifestation of Mast Cell cancer — this is my least favorite option. The onco doc said she’s never seen Mast Cell Tumors look like this, but they are “the great pretenders,” and just because she’s never seen it in this form doesn’t mean it’s not.
Jeez! Poor Woo.
So we finished with the ultrasound, and I went ahead and finally fed her (since she didn’t get any breakfast) around 2:30, then the doctor came out again and said we could do A) nothing and just keep an eye on it; B) do a fine needle aspirate on the little bumps and hope we get enough sample to test, although this would only rule out MCT and nothing else; or C) biopsy the “rash” and find out what it is. I chose C because I want to know, not only that it’s NOT MCT, but what it IS, so that we can treat it appropriately. However, since she’d just eaten, they couldn’t do a “sleepy-time” sedative to do the biopsy, instead they just gave her a little “happy juice” (I asked if I could have some too, but they said NO) and a local, took a bite out of the Woo’s back, stitched her up and FINALLY we got to go home.
So now, Rio is still completely TANKED on whatever sedative they gave her! And it’s more than 4 hours later! When we first got home, she laid down on the couch (facing the back of the couch) and she was trying to watch her dad in the kitchen because sometimes he brings goodies, but her head kept drooping down because she was too tired to hold it up. And when her head drooped, her nose totally got buried in the back of the couch. It was so sad (but a little bit funny, too)!
The good news from all of this drama is that she is officially off the Prednisone! Woot, woot!!! Hands up!!! I was really concerned about her taking it in the first place, since she is already cranking out the cortisol by the bucket loads with the Cushing’s. I kinda figured we’d start seeing more of the Cushing’s-related symptoms with it and in this case, dammit, I hate being right.
Which leads me to my second rant of the evening (feel free to clock out now…): why is it that oncologists (I’m guessing other specialists, too — I’m not singling anyone out for this particular rant, really!) are so focused on treating the disease that they forget to treat the patient?! It’s totally the same in human medicine: for example, my father-in-law’s cancer doctor prescribed something for his metastatic prostate cancer that could’ve had fatal consequences because of a medication he was already taking for his pre-existing heart condition. The doctor was given a complete list of all of the medications that Dad was on at their first meeting, but he still prescribed something that wouldn’t play well with what he was already taking. (Fortunately, the mistake was discovered by my husband before Dad actually took the new meds).
My point is, I have been worried about Rio taking Prednisone with her Cushing’s since we started this whole venture, and have mentioned my concerns on every single visit, but only NOW are her symptoms beginning to send up red flags with the oncologist. Should I have pushed harder? Should I have yelled, screamed, shouted (ranted?), to get my point across? Could I have done more? (SHEESH!!!! Really???? I need one more thing to feel guilty about?) For those of ya’ll who don’t know, Cushing’s is a (usually) benign tumor in either the pituitary or adrenal gland that causes the body to dump an excess of cortisol into the body, mimicking high doses of (wait for it….) Prednisone. I asked about lower doses of Pred with this round of chemo. I pointed out all the existing symptoms: thinning hair and skin; excessive appetite, thirst and urination; muscle weakness and atrophy; bloated belly; bony appearance; slow hair regrowth; etc. I did everything I could think of to make sure this was being factored in, and then trusted the doctor to use that information to make the best decisions about how to proceed with treatment.
I’m paying this doctor a TON, and I expect a level of care to match, or at least just an attention to detail. I understand that our doctor sees hundreds of patients, but this is my RIO that we are talking about. I don’t want to break out “my evil twin” if I don’t have to. I hate doing it, and am really embarrassed if I do and it’s not warranted…. Is it warranted???????? Am I being the nervous, over-protective mom, or do I have something here that warrants being a little freaked about?????