Thank you so much for your outpouring of support. Every one of your kind words and thoughts reached their way through the box and warmed my ailing heart. Seriously, many thanks for all the virtual love. I needed that.
I still have not spoken with her.
We got the news about my mom on Monday, while she was still under anesthesia from opening her up before they determined that she was inoperable. Since then, she’s been sedated by painkillers for her incision, and all communication has funneled through her husband, my stepfather of 25 years.
As I explained before, my mom hasn’t wanted anyone else there during her procedures. She just wanted to get through them and come out the other side. She was encouraged by her team of doctors to believe that if she could pull through this surgery, she could have quite a decent quality of life after a difficult recovery. She just wanted to get through it and enjoy what was left.
Now she sits in her hospital room at a world class facility wondering if there’s anything at all this team of experts can do for her. Or whether she will simply wither away and die an uncomfortable death while slowly losing her dignity. And find a way to come to peace, to heal her heart, if possible.
And she’s not ready to talk about it.
It has been really hard knowing how difficult this must be for her. To have lost hope. Yet she doesn’t have the energy, the will, or the desire to speak with her loved ones with what she is facing.
Since she was diagnosed just weeks before Baby J was born, I’ve spoken with my mom about every other day, sometimes every day. Although miles separated us, we were as close as we could be. She was reluctant at first to be candid about her illness with us, afraid that she would somehow damper the excitement of anticipating the birth of our maybe baby. But we made it clear that we wanted to know everything. I reminded her how upset we all were when my grandmother hid her disease from us, and she agreed. We said we would do whatever we could to support her.
After Baby J was born, every conversation began and ended with the latest things the baby was doing. The most wonderful diversion. My mom was crushed when she couldn’t meet her sooner and had to wait until after another round of tests. Once she was diagnosed with a course of treatment, we offered to travel to be with her. But with a new baby, travel would be a challenge and she knew that. Our offers to visit were declined. But so too were everyone else’s. It wasn’t just me. Family and friends all offered to be with her, to surround and support her.
She wanted to face this alone, with her husband and no one else by her side.
This is a hard thing to explain about my mother. It’s not simple stoicism. It’s partly her need to feel in control (and she was not). It’s partly her need to not appear weak and vulnerable, to not be afraid (but she was). It’s partly her need to feel like a hostess and entertain her guests (but she could not). I think it’s partly that she can not bear to look her children in the eyes and know that she is the one who now needs care. It’s her need to not be mother or sister or friend, but to be just a patient. Even her husband said he would rather wait alone than have others fussing around him.
I’ve had to respect their decision.
It adds a whole other dimension to my grieving process.
Ever since May, when I first heard the word “cancer” from her, I have been more or less holding my own feelings at bay too. Trying to protect my heart, I suppose. Distracting myself with the hope of a new baby and K’s needs. That day, I was driving home with my headset on; I had been waiting for the call. She was still very hopeful, though a long road was ahead. My first reaction when I hung up was “fuck.” I actually screamed it. The tears came and flowed. I had been there before. I knew where this road leads. Since then the bad news has just kept on coming.
Hope has been had and lost.
It’s one thing to hear the words. It’s another thing to speak them aloud (or write them down). It’s another thing altogether to understand and accept in your heart their irrefutable truth.
Grief has the capacity to pull people together. If you allow it.
It’s times like this that I sort of wish I had a larger family, a closer family, one that is not separated by mere miles alone. Instead we connect by phone, by email, or not at all. Where once I was the glue, the mediator, the peacekeeper, I am no longer able to serve that role. While I will plan a visit as soon as she allows it, right now I can’t even go cook her a meal, or give her a hug.
We are all being kept at a distance.
I have to abide in my own way.
I am helpless.
Update. After posting this Thursday night, I spoke with my mom Friday morning. She sounded tired and weak, but I was happy to hear her voice and to know that she wanted to reach out. Since then, I’ve spoken with her twice more and also connected with both of my brothers and other family members. My local family has been great; it’s just been hard to connect with the others who are 1000, 3000 and 5000 miles away.
It looks like there is one more procedure they hope to try in an effort to relieve some of her symptoms and make her more comfortable. This is not an attempt to cure the disease as it is incurable. It is a risky procedure that she consented to only after accepting that it is her only available option. The doctors won’t perform this procedure for another week, as they hope she might regain some strength from her last operation a week ago.
At this point, the best we can hope for is that she will be strong enough to withstand the procedure on Monday, that it goes well and offers some relief for some quality of life. We have to hope that her heart and liver don’t give out first. We have to hope that she makes it home, so we can plan a visit when and where she is more comfortable, as soon as possible.