Not her time.. (but when is it ever?)

Since my mom was admitted to the hospital, things have just been crazy and overwhelming. My brother and I have been pretty much camping in the hospital. We are consistently told that we are great children to be at our mother's side. We never leave her by herself. We appreciate their kind words, but it's like, "She's our mother." Last week, my brother's fiance was with us as well. She slept on the sofa, my brother slept on the floor, and I slept either on the recliner or beside my mom in the bed. We took turns helping her up at night to go to the bathroom.

Our room/ sleep space.

When my mom was admitted to the hospital, she was so weak, she couldn’t stand up. After a series of tests, we learned that her liver was failing, she had two separate blood infections, and the tumor in her stomach was actively bleeding. It was bad news upon bad news. We were told her days were very limited. The disease had spread and caused a bile duct obstruction. Bile in my mom's body was building and they attempted to relieve the obstruction by placing a stent. However, it was completely blocked. In her weakened state, we were encouraged to just let things go. Surrounded by our cousins, aunt and uncle, we made the painful decision to just make her as comfortable as possible. But we also agreed to palliative radiation targeting the tumor in the stomach so at least she would not bleed to death. The infectious disease doctor ordered antibiotics to fight the blood infections. We decided to continue this care until the antibiotics stopped working. Doctor estimated a week. Being at the hospital almost 24/7 has made time kinda blurry for me, but I recall sobbing and tears just pouring from my face. At one point I buried my head in my mom's arm, and my cousin patted me, repeating the phrase, "This is life."

The next day the hospice nurse stopped by and asked us to sign paperwork. I explained that we wanted to continue the antibiotics if it could buy us some extra time so that family and friends could come by. The hospice nurse told us rather coldly that the blood transfusion and antibiotics were not going to delay what was happening to her. Still, we decided to hold off from signing the papers. We then contacted the oncologist at the hospital who supported our decision to continue with palliative care until she reached the point where hospice was needed.

We were in this limbo phase, feeling time slip away quickly and trying to make whatever time we had left as meaningful as possible. At one point, she lost her ability to speak. Her eyes were open but she couldn't talk. She could make sounds but she couldn’t make words. My brother stayed up with her trying to talk to her, get her to eat. He tried again the next morning, but no response. Then a few hours later, the nurse came by and said, “Good morning.” My mom responded, “Good morning!” She came back. When we told her what happened, she said, “Shut your mouth!” She had no memory of it.

Mom's coworkers visiting.

We felt the clock ticking even more. We grieved for what was to come. We tried recording special moments including conversations with visitors just to save her voice. We tried savoring every moment. We thought about the wedding she’d miss. My brother laid next to my mom and “danced” with her swaying her hand side to side, playing the song she picked for the mother/ son dance for his wedding. Using Styrofoam cups filled with Lipton tea, my brother and his fiancé performed the traditional Chinese tea ceremony, with my mom acknowledging her as the daughter in law and both children giving thanks. That night, my brother went home and spent six hours scanning old photos. When he came back at 2 in the morning, he went through the photos with her. He wanted to remind my mom of her life before cancer. Our extended family, friends and coworkers came by and my mom really appreciated the love. When the visitors came, she’d tell us not to tell them about her condition because it’d only make them feel helpless and sad. She was aware of what was going on, but sometimes she’d forget. One minute she was telling my aunt that she only had days left and that they should be buried next to each other by their mother, and the next, she proposed going on a trip to Mexico with the whole extended family.

Then several days ago, her counts stabilized and we were told we could try to relieve the bile duct obstruction by placing a catheter and emptying the bile into an outside bag. She also had a staph infection and her port needed to be removed. If these procedures were successful, this would give us more time.

As her condition improved, so did her memory. She realized people were visiting her because they heard about what was going on. And then she asked us, “So basically, you’re waiting for me to die?” We knew she was feeling at least well enough to kid around because she then called us murderers. My brother said, “Don’t say that.” And she said it even louder. (It was in Chinese).

special moment between mother and son

The catheter procedure was successful and she will at least be more comfortable. This in no way will solve the underlying reason for the blockage which is cancer, but it may prolong her life. These past few days, she's even been able to get up and take short walks.

mom walking

The doctor says she can go home on Tuesday. They’ll bring medical equipment including a hospital bed, commode, shower chair, walker and wheel chair. My mom is not happy about the hospital bed, but my brother said, it's about what she needs, not what she wants. I told her she doesn't need to sleep in it.

I'm taking everything day by day, hour by hour, minute by minute. I am cautiously optimistic and holding my breath, managing my expectations. We went from thinking she'll be gone in a few days to now getting discharged. This is good news but overwhelming at the same time. It's just beyond crazy. I’m supposed to feel relieved, but I just feel like my heart has taken a major beating. Like we went through some sick and twisted dress rehearsal. We know things can change rather quickly, and in fact her counts are dropping again and she'll need 2 bags of blood. We're just hoping and hoping for better days ahead. And we're still pulling for a miracle.