Long Months Of Traveling

Yesterday was Thanksgiving. My first without my sister.

We loved this holiday; it was a time for my dad’s famous turkey (he cooked it low and slow for 10 hours and the smell of roasting meat filled the house starting in the wee hours of the morning); the wonderful smells of Thanksgiving began the day before, when my mom would pop store-bought pumpkin, cherry, and apple pie into the oven. While we always had mashed potatoes, we also always had white rice – ah the joys of rice smothered in creamy gravy; my sister and I loved the day after Thanksgiving almost as much as the day of: We’d indulge in pie for breakfast and eat gravy, rice, stuffing, and turkey all day.

The Thanksgivings my sister and I had without my family all blur together into warm happy memories for me. I remember a particularly crazy Thanksgiving in Berkeley. We had invited friends over who couldn’t make the trip home for the holiday. My sister was a giant ball of excitement at getting to make the turkey. We started early. Unfortunately the turkey hadn’t quite thawed out all the way, and we called my dad in a panic – my sister’s arm had gotten stuck in the turkey as she tried to remove the giblets! Yes, we did manage to extricate her arm and the giblets intact, thank goodness. I’d had my own disaster that day, as I’d tried to make low-fat macaroni and cheese with non-fat milk and cheese – oh the sacrilege! Our friends politely took small bites and grimaced only the tiniest of bits as they crunched into the dried out macaroni.

As our lives moved on, traveling home for Thanksgiving was a welcome ritual, where I got to see my darling sister and her growing family.

When we had the final diagnosis and staging, my sister began her first round of chemotherapy, and so began my bouts of traveling to Albuquerque, both alone and with my family. Like my Thanksgiving memories, though for an entirely different reason, these rounds of travel blur into one messy group of memories for me. I remember those first trips feeling hopeful; chemo was what you underwent to beat cancer. My sister was young, strong, and except for the cancer, otherwise healthy. This would allow her to handle the strongest of protocols. With hindsight, I wonder now if this was the best route. If she had terminal cancer, should we have tried to make those last six months as comfortable and pain-free as possible? I believe the chemo gave us an additional half year, but the treatments were torture for my sister, though she never let on about what she was going through. I don’t know the answer to these questions – I cherish the extra time that I had with my sister, and I despised the pain and agony she went through. Someone told me that in times of extremely duress like this, there are no right and wrong choices, only difficult ones. I truly believe that. At each fork in the road, we agonized over which direction to go in, but in retrospect, all we can do is continue traveling down the path no matter what direction we ultimately choose to take.

However brief a time I spent on this earth with my sister, I am forever thankful that she was a part of my life. I spent one last wonderful Thanksgiving with her (we celebrated early during my trip last October), where we ate traditional turkey, but also her favorites: pork adobo, lumpia, and pancit. Her kindness, laughter, love, and intensity forever changed my life for the better. Thank you, my sister, I am thankful for your presence, and the love that you always gave to me.

Terminally Restless

As I spent the final weeks of my sister's life with her, I'd often find myself trawling the web, trying to find any information I could about why she couldn't sleep, why she couldn't get comfortable, how I could help her, what information I could pass along to her hospice nurses that could possibly help her. She was young, in her early thirties, and she was dying from stomach cancer.

At the time, I could find nothing, nothing that seemed even remotely close to her situation. Hospice pages, forums, blog posts, they all dealt with someone at the end of a long life. Everyone seemed to have found the right pain medication combination, sleep medication, you name it. But my sister couldn't sleep. Her youth, her strength, her vigor (all of which we thought would help her "beat" this thing) all worked against her finding comfort, finding peace. One of the hardest things we had to deal with as caregivers was an onset of this awful restlessness. As soon as the sun began to set, she would be wide awake. She would want to sleep, but couldn't get comfortable. At first, we were able to move her from her favorite recliner to her bed and back, but as she lost mobility, this became increasingly difficult. No amount of pillows, blankets, supports gave her comfort.

What was this? The hospice nurse didn't know. He thought we should give her more medication, and we did, but nothing worked. During my Internet searches, I had come across some talk of terminal restlessness, a few paragraphs describing how some terminal patients suddenly experienced severe agitation, a change in mood, an inability to get comfortable. But there were really no suggestions, no tips on how to deal with this.

It's been several months since my sister died, and I still find myself searching for answers about my journey through the valley of the shadow of death. Yesterday, I found a personal blog about a man and his experience with his wife's terminal restlessness. I don't know who this writer is, but I found comfort in his posts. His experience mirrored my own. I wish I had found this site earlier. This connection with a stranger's writing helps. I don't know why it does, but it helps. It has spurred me to create this blog. I had started an old fashioned journal, you know pen, paper, analog, hah. But this person's blog has been so helpful to me. There is nothing out there, nothing for what my sister and my family went through. It's not surprising; her cancer was rare. She was young. This doesn't happen to people like her. People we know don't get cancer, and if they do, they "beat" it. But when it does happen to someone you know, someone you love, you can find yourself searching, searching for any sign that others have gone through what you're going through.

Selfishly, I hope that this catharsis will help me. But I also hope that someone, someday, as they find that they've landed in the hellish landscape created by cancer, searching the Internet, late at night, looking for answers, for connection, for some hint that someone else is going through what they're going through finds some help in this blog as well.