I wrote this on Sunday, June 24th – one week before mom passed away. I saved it as private, because I needed to write it, but I also wasn’t willing to share it while mom was alive. I didn’t want to be the nay-sayer, or the one in the family who did not have a “positive attitude” about what was happening. What I was seeing was so different from what the doctors where telling her (and us while we were with her).
I’m annoyed at doctors that set unrealistic expectations. After the cyberknife radiation, the doctor said that mom needed to follow up with an MRI in 2 months, then she will see him every 3 months for follow up. The problem is, the lungs are going to kill her well before she gets to the every 3 month follow ups. I will be surprised if she makes it to the 2 month follow up – and the brain mets will be the least of her worries.
I’m also now thinking we need to re-assess for hospice.
I awoke at 4:30am because mom was coughing. I’m not sure how long she had been coughing but it was constant. I have the O2 at level 3. It had been at level 4 for a lot of the day. I got up to her cough and gave her a hydromorphone – the narcotic helps suppress the cough. It also helps her sleep.
I’m annoyed at the home hospice doctors. They say they are available but when you call on the weekend they are not. They seem to take way too long to get back to me. And I know this is a problem because it happened with dad too. When the time comes that they are really needed, they don’t seem to answer the call. This again is a reason for moving to hospice care – in-patient hospice care.
I am struggling with the length of time this is going to take. I can handle a few weeks, but if this drags on for months I’m going to struggle. I’m not enough of a caregiver to handle this month after month – in part because in order to do this I need to be living here – and not at home in California. Home is a long way away.
I am thankful for the time I have spent here over the last couple of months – since mom’s diagnosis. We have spent some good time together – something that I will never regret. But as she gets sicker, this all gets harder. When I arrived in April, she wasn’t well. I was able to nurse / nurture her back into health. That isn’t happening this time. This time, she is getting sicker.
I read the pathology report from her hospitalization. It said innumerable lung mets, and gave examples of sizes that were horrifying.
I think we need to ask what is the best and worst outcomes of the Sutant. I need to have a doctor be truthful about expectations. She needs to hear it from someone … it is their responsibility to say it, not mine!