My 68-year-old mom, Brenda, is dying from secondary liver cancer which began as colon cancer. I am her primary caretaker.
It is painful for her, and painful for me. The cancer is far past any hope of treatment. Being a former registered nurse, my mom has dealt with death and dying her whole life, and in her final moments she has chosen quality of life over quantity of life. I get it. Why undergo chemo treatment that would make you sick more of the time, when you may just be sick some of the time from the cancer?
Anyway, the reason I have decided to write this blog (with mom's permission) is to show others who are going through similar situations that they are not alone. And second (which really should be first) is I need help with this. I need to know I am not alone. I have never done this before and I usually have to do things a few times before I get really good at them. Hopefully, I will never have to 'get good' at this.
I am the imperfect caretaker. I am flawed, in the dark, scared and confused. OK, I know I am not alone. So, I am seeking out the other imperfect caretakers (and perfect ones if they actually exist) to join in this conversation. I would also like to hear from the patients themselves. You don't need to have cancer - any debilitating illness or injury will do. When it comes down to it - it is much the same. Tell me your thoughts struggles, fears, triumphs and all things patient and caretaker.
Well, I guess I should go first.
In the summer of 2008 my mom was feeling sick. She had constant diarrhea (I mean constant) and a low grade fever. She thought she had a flu she just couldn't kick. Her primary doctor referred her to a gastroenterologist (stomach\intestine) specialist. The specialist wanted to do a colonoscopy. You know, where they put a tube with camera up your bum.
I remember going to the appointment with her. When they wheeled her out we were laughing that a camera was up her bum. She was loaded from the meds and cracking up. I was cracking up that she was loaded on meds. Then the doctor walked in. The look on her face said it all. This was not good.
Brenda had two masses in her lower colon, one so large the doctor couldn't even get the camera past it. This was the cause of her diarrhea.
But we both took it in stride, made jokes, hoped for a quick fix.
Here is an email I wrote in late October:
"All of you are good friends, old friends or family, and most of you know my mom, commonly referred to as 'the Brenda'. The Brenda has been diagnosed with colon cancer. It is a tough time, and I will be her primary caretaker due to geography. While it is a serious issue, you all know me, and this has become my outlet to add a little healthy laughter to an unhealthy situation. If you have any questions feel free to ask. We do not know the stage yet, or if it has metastasized, but is has been growing for quite some time. She feels a bit tired, and has problems with unmentionable bodily functions (which I just mentioned), but is otherwise just as cocky and cantankerous as normal. We are waiting to get approval for surgery from her insurance "INsecure Horizons". Then we will know more. I will let you all know.
So, in the meantime, we have still not determined the sex of the tumor. I want to know, but she wants it to be a surprise... and since she is physically carrying it - I guess it is her choice. We have mulled over a few names... unisex of course. I like 'Avery'. She is leaning towards 'Terry'. You can clearly see why mine is the better choice. The bright side is I have a power of attorney when she cannot make decision for herself (like general anesthesia) , hence, 'Avery' it is. We have, however, agreed on a theme for our growing bundle of wonders - cats. While we have decided to forgo the traditional tumor shower, for those of you that cannot resist, we have registered at Target, Tumors-R-Us and the Colostomy Baggery (We absolutely adore the new pawprint line!)."
The humor quickly faded. It took several more weeks before we could get the CT scan. It was a few more weeks before we could see the surgeon. The waiting was hell. So was his diagnosis. She had late stage colon cancer that has metastasized to her liver. He would need to operate and she would have colostomy bag (I actually looked, there is no paw-print line). She asked the doctor if her colon could be reconnected and the bag ditched when she recovered. He hesitantly said, "Technically it is possible."
I knew what he meant. Brenda will not be recovering. She had the surgery on November 14th. It went very smooth, the eight-day stay at San Joaquin Hospital was comfortable.
But what lie ahead in the months to come would be anything but.
(To be continued)