Love it, hate it, love it

By | Wed April 18, 2018

Love it, hate it, love it. That is an expression that a friend told me about being the family expert on cancer. Because I’ve been through it, I’m the one that understanding what is happening. I’m the one that knows what questions to ask, and which doctor to ask. I’m also the one that can interpret some of the symptoms. I love that I am able to help, but hate the reason I’m able to help.

I am thankful that I have such great friends with metastatic disease. Friends that are not afraid to talk about their experiences with the disease, but also not afraid to talk about death. They have given me the practice I need to have those conversations – but not yet – it is too early to have those conversations. Right now I’m in full-blown caregiver mode.

I never thought of myself as a caregiver. My husband is the caregiver in the family. He was my rock throughout my treatment (throughout my life now really). I am surprising myself at that way I’m thinking now.

Those that know me from support group know that food is how I show love. I cook. I make healthy meals and bone broth – and chocolate – although I don’t have the stuff I need here to make chocolate. I might need to figure that one out at some point.

One interesting thing is that I see the echo of my initial experience in not wanting to do too much research on kidney cancer. At this point, without biopsy results there is just too much information. Unlike breast cancer, which really had three variables (ER, PR, and HER2), kidney cancer has a lot more. Those variables affect the types of treatment. I’m encouraged that targeted therapies are available for many types, and they are effective at improving quality of life for a time frame.

I did find this website Kidney Cancer Canada, which has some good information for newly diagnosed. For now, we are in that wait mode that feels like forever.

We did have a brief visit from the pain doc (actually the palliative nurse practitioner). What she prescribed last night did not work at all, but she has a different thing that we will try. I hope to get the prescription this morning. If it works, we’ll go out and do some shopping – mom has not been out to do her usual running around over the last week (feels like much longer than a week). I really hope we find something that reduces the pain!

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