It’s Shrinking
Warning this is a hard post that I feel needs trigger warning, but I am not sure which ones. Talking about end of life.
Four years ago yesterday, Michaela and I sat in her oncologists office and were told that the main spot of cancer was shrinking. It is odd the things that stand out now and make more sense now. As the saying goes hindsight is 20/20. When the doctor told us it was down in size she didn’t seem like this was exciting news. I mean we had to ask her several times if it was shrinking as it seemed like she would have been more excited or encouraging if it was good news. We would say, “so it is shrinking and that is good, right?” She would say. “Well yes…of course.” There was always a hesitation or pause. We asked one more time before leaving her office and the doctor said yes it was good news.
Michaela went from that appointment to an infusion, her main cancer fighting treatment, and she felt happy. She glowed. We celebrated by shouting it - telling everyone and just wearing huge smiles. I can remember where we sat in the treatment center and I can remember what Michaela was wearing. I can remember her smile. I remember it all so clearly.
Four months later she died.
I now look back and see the hesitation from Michaela’s doctor and think there was something else there she wasn’t saying. Like maybe she was seeing that yes it was shrinking, but not enough or that other nodules weren’t changing so that even if the main spot was that it didn’t matter in the grand scheme of things because it wasn’t helping all over. The doctor never said that to us though, but it is my strong impression looking back that is exactly what was happening. I wish she would have told us her real conclusions to those tests. I think good news results can create positive attitudes that help with over all health, but I also wish there would have been more truth and not so much omission when the doctor talked to us.
I still have anger to this day. It feels like everyone knew it was the end and didn’t tell us so we weren’t given time to prepare that it was over. We were told by a 3rd party in the treatment that it showed Michaela should be in hospice. I said, “are you sure you have the right patient? We have been told she should keep fighting and that this is just set back.” At the time I brushed this off that they mixed up patients, but now of course I see that they did have the right patient. Oncology told this 3rd party, but not us. No one at the oncology center said it’s is time for hospice. Didn’t even say we should talk about different options at this point.
The last few days of Michaela’s life, I had to call the emergency/ambulance services to bring her to the hospital. I couldn’t get her out of the house on my own and her pain was horrible. I called and talked to on call staff at the oncology center and that was their suggestion to go the hospital. The hospital ER doctor, asked me what we were wanting by coming there, I know I looked so confused. I want you to help ease her pain. There was so much going on and I explained it all and again no one said anything about hospice. It wasn’t until I was talking to a nurse in the ICU that I finally understood they wanted her to go to hospice because the nurse said when I was ready to talk to hospice to let him know and he would send their person in to me. That was the first time someone actually put out there that Michaela needed to be in hospice care. I asked this nurse questions and it was the first time I realized this was the end.
The day they sent hospice into the hospital room to talk to us, Michaela told me after they left, “I don’t want to go. I don’t want to die.”
That was just a little more than 24 hours before she died.
It feels like there was whole conversations that should have happened with Michaela and I that didn’t happen so I wasn’t able to prepare her. The people at Hospice helped that transition in such lovely ways and I am ever grateful for them, but there was so much more we could have done to better prepare Michaela. So I still am holding on to a lot of anger towards the people that should have done a better job at preparing her and I that it was the end of the fight.
I have memories of her last infusion. And again of course now I see, she had no business going as she was so weak. I see it all now. I also see the oncology center saying it without saying it. They asked her if she was sure she wanted to do the infusion. Michaela looked at me like why are they asking me this. I asked if they were telling her to not fight still and they would say oh no not that. We got so many mixed messages. People in this situation need the people with the knowledge to be clear and honest by not holding back important information. Different decisions would have been made and we could have had some really positive moments before her death if we would have known those were the last days.
Telling us it was shrinking and not telling us more gave us false hope when our time could have been spent preparing and enjoying time together instead of running around to all these appointments that in the end weren’t really helping. I feel the staff from their words and actions knew it wasn’t worth putting her body through all the treatments and didn’t say it. I thought an oncology center would have better end of life skills. It is my wish is they do better at learning what to say and go beyond the uncomfortable because that is where we need them the most.
Photo from that we were told it was shrinking. 2/20/2020
