My Wife Has Metastatic Breast Cancer, Here is Our Journey

 Today is our first "real" meeting with the oncologist -- that is, the first meeting after we've learned that we are in stage 4, with metastases to the liver, lymph nodes, and probably spine, spleen and thyroid. We put together a lengthy list of questions to ask. Please feel free to use this list as your own jumping off point for questions to ask at this stage: Can you confirm the diagnosis based on the MRI report, or do we need any additional tests or scans? What stage is the breast cancer, and what does this mean in terms of prognosis? Can you explain the extent of the metastases in the liver, spleen, and vertebral bones? What are the available treatment options for this specific case? What are the goals of each treatment option (e.g., extending life, improving quality of life, or both)? What are the possible side effects of each treatment option, and how can they be managed? How often will treatments be administered, and how long will each treatment session last? Will

 We have a needle guided liver biopsy today. My wife is facing it like she's facing a shank to her back. Just standing innocently in the cafeteria line for a meal, and suddenly she feels a horrible pain the back.  Of course that isn't what will really happen. They will use pain control methods and use as much care and cause as little discomfort as possible. But it isn't how she sees it, and I get that. She went through two pregnancies, and she now has two amazing teenage daughters. Everybody who has been pregnant (or supported their partner through a pregnancy) knows how pregnancy works. You become a pin cushion for needles and blood draws. Every time you turn around, you have a doctor's hand up your vagina; you have a needle drawing blood; every 100th time you pee it is into a cup. You have ultrasounds all of the time. Why? Because something wonderful is growing in you.  So too it is when something malicious is growing in you. You become a pin cushion for blood draws.

 I joined a group on Facebook for husbands of people with serious breast cancer. We're stage 4 with confirmed metastatic cancer in the liver and lymph nodes, and suspected metastatic cancer in the spine and spleen. This is insanely serious.  The facebook support group has been amazing. There is a feeling of fraternity. I'm mean, it's a fraternity with the shittiest, worst membership requirements you can imagine, but the feelings of fraternity are transcendent of all of the things I thought to friendships important before. One of the members who has had really helpful advice has a user name that is, let's say, extremely disparaging of President Biden. But it hasn't mattered at all. The support is there, because we all have a common purpose and a common goal, the health of our wives. It reminds me of when astronauts would return to earth and say that if only everybody could see the earth from space, they would realize that what we have in common as humans far outweigh

 Cancer (and I assume other serious diseases) naturally trigger a desire for privacy. The first several posts on this blog were made anonymously in order to maintain privacy. On balance, though, a serious disease can't really be kept private from the people who matter, the people who you care about. After all, what are they if not your friends, family and support network. And why keep it private. My dad passed from Merkel Cell Carcinoma and blogged everything in order to help others with MCC . I continued the blog for him after he become too ill to keep it up. In honour of his effort to help others, I've blogged my own rare disease, CPT2 deficiency . To honour my spouse and my dad, I'm now blogging my journey, our journey. I got great satisfaction from helping people through both my dad's blog and my own. I hope that the information we put here will help somebody, somewhere, navigate this horrible challenge. I have a tendancy to write books instead of blog posts, but I

 When you've been diagnosed with a potentially terminal illness, every day you have to wait between diagnosis and leaning about the treatment plan is torture.

 I woke up this morning feeling mad and sad. It's now been 13 days since the first MRI indicated likely metastatic cancer in her liver. It's been a week since the definitive diagnosis. We've been unable to talk to anybody at the cancer agency for a week. At this stage -- where we don't know what's next, it is torture. We've turned to ChatGPT to ask our questions. In case this isn't obvious, it shouldn't be our job to research what is going on. That's why we have doctors. * Update: We just heard from our oncologist today. He says he hasn't been able to even schedule the needle biopsy. So instead he's going to start treatment and modify it if the needle biopsy shows something he doesn't expect. It's frustrating not to be able to get diagnostics done.