Haven't posted in a while. As much as I pride myself in being honest about my battle, there are times where I am forced to not be truthful. All cancer patients lie or to put it better, we withhold the truth. We have numerous reasons for this behavior. My biggest motivator for withholding the truth is my family. They come first. So if I haven't told them the latest health update or I haven't figured a way to simplify things for Em and Will, then I'm sure as hell going to lie to everyone else until I do. So if people ask me how my latest scans went and I don't answer or say they're not back yet, I'm probably lying. I also have to allow myself time to let things sink in. A bad scan may take a while to accept. Sometimes I read my scan report and immediately take a nap. Why? Because I cannot cope. Sleep is my escape. And that's okay because when I wake up, cancer will still be there.
Cancer patients are really good at lying when asked how they are doing or feeling. Imagine if every time someone asked me how I am, I gave a completely honest answer?Receptionist: "Hi Mrs. Raney, how are you?"
Me: "I'm fucking awful. I can't sleep. I'm constantly in pain. I have painful acne and I've been constipated for a week. The baby is teething and won't sleep in her crib and the older two kids are constantly bickering. Oh yeah, and my car died so now I have a car payment. And when I pass myself in the mirror I don't recognize who I am. I want to look like the Lauren from 2 years ago, not this yellow bloated freak I've turned into."
Receptionist: Umm...okay...so I just need your $10 co-pay.
I even lie to strangers. I've had a few encounters with older people who look at Sam and kindly tell me to enjoy every minute with her, because before I know it, she will be all grown up. No shit, stranger! Because I wasn't enjoying anything until you said that. Thank you for opening my eyes. Or the stranger that tries to tell me how hard they had it raising their kids. Yes, you definitely had it harder than me. This stage 4 cancer thing is a cakewalk compared to your colicky baby. Of course I just smile and bury what I'd really like to say. Because we all do this. If we didn't, we'd all hate each other and nothing would ever get done.
Receptionist: "How are you Mrs. Raney?"
Me: "I'm good. How are you?"
And many times we lie about the pain. I'm not sure if I lie to protect those around me or to protect myself. Maybe a little of both. If I lie, then people won't feel sad or worry and I can trick myself into thinking that I'm well enough to do things. This is one area where I'm finding it harder to withhold the truth.
The truth
I've known for a while that I was getting worse. I could feel it. When I first started this new chemo it did seem to help with my pain, but after a few weeks the pain came back and has increasingly gotten worse. Plus, I have new areas of pain. I haven't been able to laugh in a month and a half. When I laugh, I get severe pain in my right rib cage. Of course I laugh anyway, but then the pain is excruciating and I have to try and think of really sad things like the holocaust and my dog dying in order to control my laughter. Living with an extremely funny husband is not easy. Actually, my whole family is hysterical and sometimes I have to remove myself from the laughter in order to spare myself from the pain. On top of this pain, is the abdominal pain I was already having and that has been accompanied with a lot of abdominal swelling. I'm very uncomfortable and the more I do, the more swollen I get. I have not worn a pair of jeans in months and now even leggings are becoming painful. I'm thinking that muumuus are in my near future. So due to all this fun stuff going on in my body, I was prepared for bad scan results. And that's another cancer patient lie. We tell ourselves we are ready for bad news when in fact, we are never ready for it.
Scans
So every abdominal tumor has grown over the past 8 weeks. There is more fluid and swelling in these areas as well. The peritoneal seeding has also spread and there are new spots in other areas. I have new spots in my bowels as well as in my right ribcage (the source of my laughter pain).
The chemo isn't working.
This is bad.
I am sad. I am angry.
And I am scared.
But there is nothing I can do. I feel helpless and I feel that in some weird way, I am partly to blame. I know that's ridiculous but the cancer mind fucks with you. Maybe I should have tried that crazy fruit diet or maybe I just wasn't focused enough on fighting. I let life go back to normal and let myself get stressed about the kids' schoolwork, and laundry, and soccer practice. I should've been doing everything in my power to remain stress free. I should have been sleeping 8 hours a night, and meditating, and whatever else relaxed people do.
I'm sure some of you are saying that I'm being absurd but I sure as hell haven't been giving my body the chance to relax. But how does anyone have the time to? I have kids. I have cats. I have a teething baby for Christ's sake. Relaxation just doesn't have a slot amidst the chaos of family life. And sometimes I think well, maybe it's better this way. There is never a dull moment and distractions are practically forced upon me.
Straight talk
I met with my doctor on Monday. I had every intention of going in there and being a straight talker. I wanted the brutal truth from him. I wanted him to give me a time frame or tell me what to expect over the next few weeks. I wanted to know if I had any chance in hell of surviving more than a few months. I wanted the truth so I can start accepting my fate and prepare for what's to come.
But then that cancer liar came out. Well not the liar, the one who just doesn't tell the truth and sometimes, doesn't want to hear the truth. I asked none of these questions. I wasn't in denial, but I just wasn't ready to have this talk.
Instead we talked about my options in terms of treatment. Option 1: I could go back to my original chemotherapy. Option 2: I could try to get into a clinical trial. So the last two days I've been going back and forth. Weighing pros and cons. Mostly fixated on the cons. The old chemotherapy did have a decent effect on my cancer in the very beginning but the one drug wreaked havoc on my body. Am I willing to go back to that hell? Neuropathy, severe nausea, blind spots, claw hands and feet, and complete mental fog? There have been major advances with clinical trials but in terms of gastric cancer, less than half of the participants have seen an improvement. Less than half. There has also been a lot of talk about immunotherapy these days, but this is mostly geared toward lung cancer and melanoma. Gastric cancer has not responded well to these newer therapies. And then there is the cost of some of these new drugs. My doctor said some of them cost as much as a house. Umm..that's insane and also disgusting.
A decision will be made by the end of this week and I'm really not sure where I stand.
We ended the appointment with me allowing my doctor to completely distract me. He asked about all of the kids and wanted to see pictures of Sam. And I of course obliged. I let myself be just a mom for a moment and not the sick and scared patient I knew I truly was.
I wish I had good news, guys.
I wish I had something positive or light to end with.
But then I would be allowing the liar in me to take over and right now I need the truth.
This sucks.