Mom had been talking about making Steak Tartare for a little over a week. She had planned to teach me how to make it last Saturday but wound up in the hospital that day instead. So, a few days ago, I brought her an index card and a pen, and she wrote out the instructions. I just wanted it in her handwriting in my recipe box. I picked up her meat grinder, got some top sirloin and made it last evening. It was very good, if I do say so myself. She said it was, as well, and we all know she would tell me if it wasn’t up to par. I also brought her a Heineken, because beer is a requirement for Steak Tartare. We all sat and talked and looked at the photos I transferred to her iPad and then came the Britcoms on TV. She is still looking a little tired, but definitely a little better.

I was talking to my friend Iris about how frustrated I was with the doctors not agreeing on whether the tumor has grown or not. Iris said I should ask the nurse for a copy of the radiologists report, because he would give an unbiased opinion. I did, and he says it has grown. That mystery is solved, even if it is not what I had hoped to hear.

I guess the bottom line is that I am sick and tired of having smoke blown up my ass. I know what I am seeing when I look at my mom, day in and day out. And I think that on some level she sees it too. I’m ready for some honesty from her doctors. The MRSA is obviously a huge setback, but my god, the freaking tumor grew during a month of concurrent chemo and radiation. That means we have a very aggressive tumor, which can’t be treated during the next 4-6 weeks. I’m not a rocket scientist, nor am I a doctor, but I’m smart enough to know these factors contribute to an adjusted prognosis, yet Dr Baddrudoja is sticking to the original 3-5years. WTF??? That doesn’t make sense on any level. I was told that the doctors at CNS give everyone a 3-5 year prognosis, and when questioned about that, the stock answer is they want to give people hope. Really? Hope? How about this answer instead-“the median life span of a person diagnosed with grade 4 glioslastoma multiforma is 14.6 months. Some people live much longer, and some people live much shorter lives. Everyone is different, and we have no way of knowing where you fall on that spectrum. We will do everything we can to give you the highest quality of life for the longest amount of time possible.” That would be a real answer. But to throw numbers around like you have any idea should be criminal. At the very least, it is inhumane. It gives the patient and family an unrealistic sense that there is plenty of time to do the things they want to do, to get their affairs in order, to live fully. There is a clock ticking and none of us knows when it will stop.

I want to focus on one goal at a time for my mom. I want someone to tell me how in the hell I can get her to my daughters wedding in October. I don’t know if the MRSA will be completely cleared up. I do know that she will require two caregivers around the clock. I don’t know if she can fly at that time. If we have to hire a damn ambulance to take her, okay. I have one caregiver lined up, but how do I get a second one, once there? If she is alive, I want to make sure she is there one way or another.