May 31: Day One

Written May 31, 2013 11:03pm

This day will be etched in my memory for the rest of my life; my Mom's retirement day; the day she worked her butt off for. In all our minds, she could finally kick her feet up, eat some chocolates and relax a little. 

Perhaps also, it would be the day Mom finally stopped feeling the need to take care of everyone else and maybe she'd concentrate on having a little bit of fun. 

It wasn't meant to be. 

Instead of saying goodbye to her students and colleagues on what would be her last day after just shy of 30 years at Fellows, she was at home, feeling less than stellar...again.

Test results from the initial ultrasound (yesterday) were not optimistic, to say the least, but I think we all still had a fair amount of hope. 

To be frank, it didn't, it still doesn't seem possible that someone who has worked this hard, for this long, could possibly come to the end of their life of employment/service and be rewarded in retirement with something so crappy as a cancer diagnosis on their final day of work. 

That's what happened to my Mom today. A cancer diagnosis with no hope attached. I cannot help but think of my pals who say, "this is what clean living will get you."

Apparently God has very different plans for my Mom than we do.

We learned today at 4 pm that my Mom has incurable liver cancer. For all your science nerds or google fanatics it is called advanced hepatocellular carcinoma. I don't recommend looking it up. It sucks. There is no hope attached.

It's very agressive and there is next to nothing that can be done. It's a cancer that is typically reserved for patients with hepatitis and for those with cirrosis of the liver. My mom won the shitty cancer lottery, so to speak, and there is nothing in her medical history that would sign her up for such a cheap date.

The prognosis is very grim. There are spots on the CT that are leading Dr. Otteman to believe that the cancer is advanced to the point that it is also on her lungs. If we did nothing, the average life expectancy from today would be 6-7 months. There is a drug called Sorafenib that will not shrink the primary tumor but is basically the only thing available to help. The goal is that it will slow down the progression of the tumor's growth to the point that it might buy an average of 3 or so months.

Dr. Otteman has recommended a second opinion and we will get one in the next 10 days or so. The options are either Mayo Clinic or Iowa City and at this point we are praying that there is some kind of clinical study that she can be a part of that might buy us a little more time, that has some quality attached to that time. We also have to be exceptionally diligent as the tumor is growing exceptionally fast. She is already having some trouble breathing and is very sensitive on that side. Dr. Otteman described it as feeling like she was being dragged on that side of her body and there was very obvious recognition of that pain.

I asked tonight if we could start the Sorafenib and then evaluate clinical trials to see what we should do next, but that would automatically disqualify her from the clinical trials as they combine the therapy that seems to provide the best result with whatever they are testing but they cannot start the Sorafenib unless she is "in" the clinical. 

We will look everywhere we can for a promising clinical and if we find one we'll find a way to get her in it. I have some exceptionally good resources at work and know that I will be able to pick the brains of some of the best cancer doctors in the world about anything I may be missing Monday. 


The bottom line is my family needs your prayers and we need lots of them. We are all completely gutted. My mom is our rock and the glue of our family. We have talked to many people tonight; my parents have such an amazing network of amazing people surrounding them and we need you. All of you. Please pray. We need it.

Everyone we've talked to wants to help, and at this point I can only think of one thing: you all love my Mom because at some point, undoubtedly, she held you up. She comforted you, she made you stronger, she took care of you. Now it is our turn/your turn to hold her up. 

We are all falling apart; but please try and love on her when you are there visiting her and be positive. She is going to be tired, she's going to get more tired, and she's going to need to sleep more and more as time progresses. We want to make the moments she feels good as positive as we can. I hope I don't sound like a jerk for saying that.

****

We drove around tonight after we left Bliss Cancer Center and I asked her, "What do you want?" 

She looked at me like I was crazy (funnier when you really know her). She had no idea what I meant.

We talked about what that might mean at that very moment or maybe even later, but right now, what was in her head: did she want to go out now and tie one on, since she had the drunk's cancer and has never been drunk in her life? Did she want to go on a trip? If so where? Is there something lurking there, something that pops into her head that she really wanted to do? 

She thought about it and told me she wants to be well enough to see another baseball game. Hear another, "Maaamaw?" She wants to be with her family and the people she loves the most. She said she imagines a lot of people in her position would want to go on a trip, or do something crazy but she doesn't. She just wants to do another day just like she has been and not change one thing. 

We intend to give her as many of those moments as we can. Please help us do that. I cannot imagine the majority of people that live to be 100 can honestly say what she said in that moment, I am so blessed to have heard it from my Mom in her darkest hour.

We are going to have a retirement party for her and we want you all to come (details forthcoming with very little notice). 

Love

~Alison, Angela, Cale, my Dad and the rest of our crews.