WTF

I’ve been MIA because I haven’t had time to properly process what’s going on.

Last week sucked.

It was one week ago today that we got the news that mom has abnormal cancer cells called MYC and BCL2 gene rearrangements. Apparently BCL2 inhibits cancer cells from dying, making them more resistant. MYC encourages cell regrowth, cells grow in an uncontrolled manner. What this means is that one gene tells cells to grow; one gene prevents cells from dying. Awesome eh? It was a rough week for all of us. Our optimism and spirits were crushed. A bunch of things didn’t go well last Monday: We didn’t meet with Ellen as usual which meant that mom’s symptoms, height and weight weren’t recorded. We met with the new Fellow but not Dr K. And we left in shock with a ton of questions.

The next day I went to PMH early and caught Nurse Ellen before clinic started. I explained that given the bomb that was dropped we turned to the Internet for clarification the night before and at first glance mom’s outlook has turned from positive to bleak and that she was hesitant to continue with treatment. Ellen was able to get us in to meet with Dr K the next morning before mom’s second round of R-CHOP chemo.

The next day Ellen was lovely and compassionate with mom but Dr K came in poised for a fight. He was on the defensive and mom became antagonistic in her response to him. I understood where both were coming from and I think in the end they both felt heard. By the time we left we had a better picture of what’s going on and why decisions were made. Mom went into her second round of R-CHOP chemo feeling relatively more relaxed and positive about what is going on. ‘Positive’ - ha! Not quite, but less resigned.

I think we’ve all been pretty fragile since. My son and I went up to the farm on Friday night and I got to spend most of Saturday with mom while my son was with his dad. We’re scared. Her pain is back and she’s anxious. Yesterday we went wig shopping and picked a couple that look really beautiful on her. It was comforting to see her ‘back to normal’. Her eyes sparkled when she saw her reflection in the mirror, it was as if she transformed from patient back to herself.

I’ve been more emotional and sensitive than usual. I’m not sleeping well, which is adding to my vulnerability. It’s as if I’m in a prolonged state of PMS, constantly on the verge of tears.

I know that I need to do a better job of taking care of myself so that I can continue to parent my son as best as possible and be helpful to my family. The not sleeping - my mind won’t shut the fuck up! - is really messing with me. My body is struggling to stay strong and my mind is playing up unrelated drama to avoid feeling the fear.

I’m feeling disconnected from boyfriend - we haven’t spent much time together the past few weeks and it’s starting to bother me - which is making things harder. It’s no one’s fault, our schedules are busy, but a relationship by text doesn’t work for me. And given what’s been going on it sucks that we’re not in the loop about what’s going on with each other. I don’t really know what he’s been up to and he’s missing a lot from my end. Things that have happened, thoughts I’ve had, feelings I’ve experienced - all on my own, as usual. What’s the point of being in a relationship if I’m doing this all on my own? I could be spending all free time with my son instead of paying babysitters to watch him when I go out with boyfriend. I don't need a booty call, I need a partner.

I feel like I’m reevaluating a lot of things in my life. My friends, my relationship, my parenting (I want to spend a lot more time with my son!), my priorities.

I’m very scared. I don’t think we (or anyone) knows enough about the situation at this point. I’ve asked mom to make an apt with her GP (we’re booked for Wed afternoon) to have someone explain things to us in a way that we can understand. I’d like her to review our UHN case and answer some of the new looming questions like stem cell transplants and realistic prognosis. Dr K’s most recent notes on the UHN Portal aren’t accurate, which is both disappointing and terrifying. If we can’t trust his reports, which are based on what happened when we met, then how can we trust his assessment of the situation? I think that after a couple of rounds of EPOC-R chemo we’ll have a much better sense of how mom’s cancer is reacting to treatment, but that won’t be until the end of June - a month and a half away. Mom feels like the cancer is growing inside of her not being killed, which must be awful. It’s so hard to watch someone you love be betrayed by their body and not be able to do anything to make it better.

I’m floating through the motions of my usual life but I’m not really here. I’m trying but I’m distracted. Not feeling connected with boyfriend, working double-time to make sure that my son is ok through this shit, and worrying about mom is draining me. Add family drama to the mix and I feel like I’m teetering on the verge of insanity. Hopefully I get a good sleep tonight, I’ve got clients in town for an important meeting tomorrow.

I’ll try to write more often, it definitely helps me process things.