We're still waiting

 In British Columbia, Easter weekend was a 4 day weekend. We ended last week with a call from the oncologist saying that the second MRI was definitive for cancer.  Since then, she has started to feel prodromal and for the first time since this all started, was too fatigued to go to the gym.

The palpable lump under has arm has shrunk, but grown much harder.

Four days is an eternity for a cancer patient.

We don't know:

- When her ultrasound guided needle biopsy of her liver will happen (it was supposed to be tomorrow, but thanks to the long weekend is not yet even on anybody's schedule)

- When her brain CT and MRI will happen

- When she will have bloodwork done

- Whether the shortage of chemo drugs reported in the US will impact her

- What the treatment will be

- Whether the treatment will make her sick

- When the treatment will start

- Whether there will be surgery

- Whether there will be radiation

- Whether they have any prognosis

- Whether the mRNA research doing on has clinical trials open to her

We're adults. We can deal with some delays (though come on, it's not like the cancer took the long weekend off and stopped dividing and spreading because it was a holiday). We have kids, though, and we need to have enough information to help them set expectations for what the next few years will be like

I'm too sad to write much, but I thought I'd check in this morning.

It feels very much like we're having to navigate this on our own, without any professionals who actually run the show.

Comments

Post a Comment

Popular posts from this blog

But I feel too healthy to have cancer...

 We finally got liver needle biopsy results today, and it is ER+, HER2- breast cancer that has set up shop in her liver. I spent the past week listening to my wife say that she feels too good for it to possibly be metastatic cancer. I understand the confusion and frustration of it. She feels great, yet there is a potentially deadly disease process growing within her. Think about it like an actual disease. Imagine you are treating a patient with Ebola. You accidentally stick yourself with a dirty needle. There is no question -- blood with Ebola got in through the puncture, and you now have Ebola. Except that you feel fine. There is an incubation period, and you feel perfectly healthy. That's what early stage metastatic cancer can be like -- except that unlike Ebola there are many drugs that can slow the progress and mitigate the effects.
Read more

Today my wife thinks she's getting a shank to the back

 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.
Read more

Today we meet with the oncologist

 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
Read more