For the record, your patients understand that there is a certain amount of bad news during cancer treatments. Calling them with false hope of good numbers while concealing the truth of the results is just a really shoddy thing to do. It’s like…well telling a cancer patient things are shrinking when they aren’t. I know, crappy example, but right now I’m frustrating with your inability to communicate with the people you care for. It’s utter nonsense to build false hope in those that are suffering. What is wrong with you that you can’t face the facts that sometimes you lose? Why can’t you discuss the bad with us without building up the utter nonsense you like to call stable?
Kindly pull your craniums from your rectums and treat patients with respect. It is not respectful to tell us things are getting better while hiding the fact that they truly aren’t. It is not respectful to instill false hope in people who are pleading with you for the truth. We demand honesty and respect. You promised to do no harm; breaking our hearts is more harmful than lying to inspire us to push on through the fear and pain. It is wrong to give us a false sense of security. We will no longer tolerate it.
A Really PO’d Cancer Patient
Today, Dr. Brooks was out of town. I almost wish they’d just stop letting me come to chemo when he isn’t there. Or better yet, let’s skip the stupid appointment part, dump in the chemicals and let me go home. I’ll talk to the doctor or no one else from now on. Linda, as always, continues to be useless. She can never answer my questions. I can’t imagine I’m out thinking a woman who has trained in this field so either I scare her with my questions or she’s literally not permitted to answer them, which makes her useless.
She did, however, have the ability to pull up my MRI and CT results from Tuesday. I, of course, wanted to see the numbers that were “minimally better” than the last scan. I’d put all my eggs in that basket before; I wanted details. Why? WHY must I want details??
The CT scan showed that the mets in my lugs are larger. Not grossly so, but larger all the same. The first was 8x11mm and is now 11x13mm. The second was 11x14mm and is now 16x17mm. There are some smaller nodes throughout the chest and some in the fat around my diaphragm –awesome, even my fat has cancer!– but the rest of the test was about the same as last time. The grown in the tumors, however, would explain my cough, chest pressure and pain. I thought it was too good to be true that things were getting better, even if better was just stable.
The biggest blow, however, came on the MRI findings. The numbers are slightly better, a few tenths of a centimeters change in the tumors. That was the glimmer of hope in an endless sky of darkness. The MRI picked up on “two T2 hyperintense, T1 hypointense enhancing lesions within the L3 vertebral body, compatible with metastatic disease.” For those that don’t speak medical crap, that means they have found cancer moving into the bones of my spine. This is not good news. This is ten car pile-up type news! Cancer in the bones is seriously impossible to fight. Bones aren’t as vascular as other tissue so it is much harder to deliver medication there to beat the tumors.
So, what does this mean? What do we do next?
Remember Linda? Yea, not so helpful with those questions. I asked if there was any chance the tumors in my lungs and on my spine might not be the cholangiocarcinoma, could we have a second primary tumor we are dealing with? After all, they aren’t responding to the irinotecan despite the fact the liver tumor appears to be. Carla had a great response to this; the liver is highly vascular so she thinks that the drugs are working better there due to access. Lungs, to me, are pretty darn vascular too, so I’d like to think it should be working in my lungs as well. I just wonder if maybe we should biopsy and compare what is in my chest to what was found in my liver to be sure. Linda wasn’t sure about that. She wasn’t sure about getting consults to surgeons or finding doctors worth giving me a fighting chance.
I’ve spent the last few hours crying. I feel like we’re moving further away from where we were seven months ago when this all began. It’s hard to keep being hopeful when my results get worse and worse each time. Maybe I just need to stop letting them do scans so this all comes as a huge surprise when I stop breathing or something…
Milo is being his awesome self. He told me he will love me if I end up in a wheelchair because the tumor crushes my spine. He’ll even lift me on the potty. Because that right there, ladies and gents, is true love. I just…I wish he would just turn and leave. I don’t want him to remember me as the woman he had to take care of in the end. I want him to remember the fun we had. I know this all is morbid and a little melodramatic, but when the news just gets worse each time, I find it hard to think that things will suddenly improve and we’ll have our lives back the way we planned. Milo deserves better, we both do. I’m just not sure how to get there anymore.