Preparing For My Death

Today I had my second trabectedin infusion. It's in the tote bag that I'll carry everywhere until tomorrow afternoon, when the chemo clinic RN will unhook it from my port. I'm not sure what to expect these next few days - the first infusion caused me a lot of weakness and lethargy on Saturday and Sunday. By Monday I felt better, good enough to go to work, but side effects continued for over a week.

I've been working on getting a few things wrapped up, such as writing my will, closing out old accounts that aren't used anymore, and sorting through paperwork. So much paperwork! And more arrives everyday.

Yesterday I had an office visit with my oncologist Dr T. He took notes on what my side effects had been. CT scans will be after the third treatment to see any progress. We discussed what would happen if the trabectedin didn't work - "Would we try the other regimen, the doxorubicin and ifosfamide?" I asked.

He paused, and said, "Maybe. But those drugs have even worse side effects." He wants me to think about how I want to live my last year. Trying to fight this? Or just accepting it and going for palliative treatment only, which would make me feel better but not do anything to slow the cancer progression.

He signed off on the early life insurance payout, picking the 12-month life expectancy option. Options were 6, 12, or 24 months. If we decide to send this to the life insurance company, then we'll receive a portion of the life insurance within a few weeks, rather than waiting for the whole sum after I die. That would take care of some financial snafus we've created, and make it easier for me to go on the reduced income of disability.

Disability is seeming like an option now, when a few months ago I was against even thinking about it. I'm more tired at work, and I'm worried that the stress is causing my body harm. Quitting my job would give me time to work on personal projects I want to get done.

Projects such as:

• Updating the spreadsheet where I keep information about our household and family accounts - utilities, credit cards, insurance, banking, retirement accounts, and other such things. Even my county library card number, user ID and password. I want my husband G to be able to carry on with daily activities with as little hassle as possible. I've been using this spreadsheet for about 15 years. I'm the one who pays the bills, and G knows about it and where I keep it, but I've been crossing out things and writing over things and attaching little post-it notes to it. I cleaned it up, then did the same thing with the separate user IDs and passwords chart I have. 
• Writing my will. G is writing his too. We finished them tonight and emailed them to the legal firm. They're rather simple. Mine has a separate page - I'm leaving my childhood things to my brother J, and a china set to one of the stepchildren, who had said a couple of years ago she'd like to have it. Everything else goes to Geoff to decide what to do with it. I wonder how long it will take before he starts throwing my stuff away, or taking it to the thrift shop. 
• Sorting through photos - setting aside the ones that might have meaning to my family or friends. Sending to friends photos I took of their babies - did I ever give them copies? I'm sure they'd like to have them. I have printed photos in boxes in the garage, and literally thousands saved on my laptop. I'd like to make albums for each of my stepchildren, photos I've taken of them over the past 19 years. And one for husband G, and for brother J. 
• Transferring all the domain names I own to a single registrar. Right now they're spread around and it would be very hard - if not impossible - for G to find them and decide what to do with them. I hope he renews the one for this site for many years. I've spent a lot of time on this, and I'd hate for it to all this info to just disappear because the domain wasn't renewed. 
• And a variety of other such things that take time and energy. Time and energy are more important to me now than ever before, and I'll have more of them if I quit work and go on disability. 

Part of the preparation is deciding when - and how - to tell the children. We want to wait to see if the treatments are working, but not wait too long. They're spread out across the country in four different states, two on the opposite coast, so telling them in person would be very difficult and expensive. We're still unsure on this. 

So many things to think about, too early in my life. I'll make it to my 57th birthday this December but probably not my 58th or beyond. Dying in my 50s seems so sad. I really thought - as does everyone - that I'd have more time. 

I am grateful for the time I have left to take care of all of these projects that will make it easier for my husband to carry on without me. So many people, every day, die without warning - a car crash, a fall from a hiking trail, cardiac arrest or aneurysm, or violence. They haven't had time to wrap up their lives. Their family members have to sort through all of that while grieving their loss. 

My parents both died many years ago, and in drastically different ways. They both lived in Colorado, and I was living in California at the time. My father died first, in a hospital cardiac intensive care unit. He was supposed to get better and go home - but then took a sudden turn for the worse and, with a DNR order on file, he died just a few minutes before I arrived to see him that morning. I'd been with him for a few days because his roommate called to tell me he was in the hospital. When we went to their home to clean out his things, it was all contained in one bedroom, very neat and tidy. Papers in a file cabinet. He'd told me he wanted to be cremated, and buried in Logan National Cemetery in Denver. 

My mother was in an assisted living center for a few years before dying, diagnosed with Alzheimers. It was painful in a different way, drawn out and emotionally draining. It was a few years after my father's death, and the differences were remarkable. My mom had lived in the same house for over 30 years. She wasn't a hoarder - the house was tidy on the surface - but she kept things that "might be useful someday." Pieces of foil, plastic bags, scraps of paper, all stuffed into the kitchen cabinets. So many towels and tablecloths that she didn't use, folded in the bathroom cabinets. Every room had things in it to be sorted. My brother's bedroom and mine had our old toys and school projects. My brother lives in Georgia, and I was in California, so we met in Colorado several times for long weekends, and once for a whole week, to get the house cleaned out. My mom kept so much useless paper - coupons, box tops (from back when you mailed them in to get prizes) - and mixed in with that were important papers. The Alzheimers took away her reasoning, her ability to sort things properly. It took us about 18 months, I think, before we could put the house on the market.

I don't want my death to be a stumbling block to my family. I can't imagine what it will be like for G to come home to an empty house the first time. I imagine him wandering around, looking at my things, and probably crying. I don't want him to be burdened with trying to figure out how to pay the bills or deal with other matters that had gone mostly unnoticed by him before.

It's very emotional for me to think about what his life will be like later. The first time he has to tell someone, "My wife died." The first holiday without me. The first wedding anniversary without me. The first time he goes out to the island without me. 

I don't know what will be in store for me after my death, but I have a notion of what it will be like for him, and it makes me weep.