Last week I travelled to Canada to see my Mom. Something in my gut told me that things were not right with her. I was noticing songs on the radio that made me think and worry about her and I had a very vivid dream in which she said good bye to me. I called her and she reassured me that everything was fine and not wanting to over-react, I decided to stay put. A week later, when I got a call from my Mom's youngest sister and she told me that she felt compelled to call me and ask me to visit my Mom, I knew I finally had to go. (Lesson learned, when I don't trust my gut, the universe intervenes to wake me up.)
My Mom was diagnosed in 2011 with a pancreatic neuroendocrine tumor. For the last year and a half she has been treating it with hormone therapy. She gets a shot of Octreotide (Sandostatin) once a month and smaller dose single shots every few days. She's also been using fentanyl patches and taking oxycodone as needed since she first ended up in the hospital.
The tumor was inoperable and we just learned it has been stage four since it was diagnosed. Still, she found a routine with the hormone therapy and the tumor seemed to be holding steady and even possibly shrinking a little. In November she seemed to be doing really well, but in December, fluid that had been accumulating in her abdomen since the summer was diagnosed as Ascites, and everything got a lot more serious. To relieve the pressure she has been having it drained every week or so for the last two months. This depletes my Mom of precious proteins and is a very difficult condition to live with. Pressure from the fluid makes it difficult to breath and it's hard to put too much food into her system.
An MRI she had in December showed that the tumor was progressing. There was a small spot on her liver and the disease was also in the lining of her abdomen. Those metastases were the cause of the Ascites. In January she started an oral chemotherapy, Everolimus, to try to control the ascites and to slow down the progression of the tumor. The chemo is not a curative treatment, but it could extended her life for an average of six months. Of course, it's causing other problems, like fatigue and nausea, so the balance between the benefit and cost is a delicate one. The radiation that had been suggested when she was first diagnosed is not currently an option, since she has lost so much weight because of the ascites and is having difficulty eating because of the chemotherapy.
She's always been a strong and determined fighter, so despite the doctor telling us that she has months to live, we are all hoping that she will beat the odds and be with us as long as possible. If the chemotherapy is able to control the fluid build up and she is able to gain some weight, the radiation treatment in Edmonton may become an option again. Studies have shown that over half the patients had an overall survival of 36 months after PRRT treatment.
Mom? If you are reading this, go rest. I'm going to get real here and I don't want you to worry about me. I want you to know though, that I'm totally going to get you through this and together we will make sure that you are comfortable, well taken care of and at peace with all of it. I promise. I will be there for you and I will be fine, most of the time, but this also really sucks and I need to vent a little.
So, to the rest of you I ask: How do I say goodbye to my Mom? Because that's all I can think about. Where is the manual on how to be there for someone who is dying? How do I get out of of bed every day knowing that the clock is ticking?
When I really think about it, I know the answer. It's that you just do. You show up, you say what you need to say and you do it with a smile and reassurances. You have no fucking choice. I have no fucking choice. We just have to accept that this is what we have been given and understand that for all the loss and pain in life, there is always love and beauty.
I'm not religious, and death can be a scary thing when you are not sure what happens after you or someone you love dies, but I read this incredible essay that made me feel a bit better about it. Comforting Thoughts About Death That Have Nothing To Do With God. Go read it now, I'll wait.
This is my favorite part:
... inherent in change is loss. The passing of time has loss and death woven into it: each new moment kills the moment before it, and its own death is implied in the moment that comes after. There is no way to exist in the world of change without accepting loss...
Greta Christina writes so elegantly about our place in this world, our moment in time, that we can't help but know and understand that every single one us matters and has a impact on everything else that is around us. We don't disappear, we will forever have our place.
What matters is that we get to be alive. We get to be conscious. We get to be connected with each other, and with the world, and we get to be aware of that connection and to spend a few years mucking about in its possibilities. We get to have a slice of time and space that's ours.
So I'm trying really hard to not think about the things that I won't have because my Mom is dying, but instead to think about all the things that I have because she was alive. There are so many good things. This place of gratitude, as always, is the single best place to be when facing any challenge. And most of the time I find myself there, solid as rock, and smiling a little.
Of course, a sad country song comes on the radio to ruin it all when you are alone in a bathroom at the airport and all of a sudden you are ugly crying in the mirror and angry as hell that this is happening. That's totally normal. Or you are in the shower just letting the hot water run over you while the tears just pour from your eyes. I don't intentionally try to hold back the emotions, but it does seem to hit me more when I am tired and vulnerable. I know that it's going to be important for me to nurture myself right now too, and make sure I am getting enough of the things that I need.
My favorite place to be since I have gotten home is my bed, reading Steve Jobs's biography, where I am unconsciously trying to divine how to deal with this since Jobs died last year of the same type of cancer as my Mom. Comparing them, he lived with the cancer longer but he was also 10 years younger than my Mom when he died. Comparisons are pointless, I know, but I read it anyway, distracted at the very least.
Chris asked me to make pancakes over the weekend and I just stared out the window, unable to get up and do this simple thing for my family. We needed groceries and the thought of going to the grocery store was just overwhelming. I just want to wrap myself up in my bed and lay there in a stupor, sleeping, reading and playing solitaire. The mindless tasks are appealing, so I don't have to think. We all grieve differently and we all need to give ourselves permission to feel the feelings and to take care of ourselves however is the best for us.
I'll be fine. (Mom, I know you are still reading this, and really, truly, I will be fine.) I will get up out of bed. I will write and I will make art. I have so many stories to tell and I am working on a new art project about fragile things. It's going to be beautiful. The kids always need something, they always make me feel better. I will just do it, I will keep living, I will keep loving. There is nothing else to do.
I know nothing will be the same, there will forever be a real piece missing from my life, but I also know that my Mom will inhabit my life in a different way. In some ways she will be further away and in some ways I know she will be so much closer. I have a feeling this process will bring me wisdom and understanding and while I know that it won't always be easy, I know that I will grow from it.
Have you lost a parent? How did you cope? What did you do?