October and November 2008

In October, we spent a week together in Destin, FL. We ate, slept, sat on the beach, and nothing else! She didn’t have the energy for any more than that. It took all she had just to walk out onto the sand. It was a wonderful week.

They rescanned her right before Halloween. There was “nothing else they could do.” I was glad that she had been willing to even try the clinical trial. I knew it wasn’t like her to just give up. At least now I had a definitive answer. There was nothing else they could do. They would not give her a “time”, but said that if she wanted to see her family, she needed to do it now. I asked if she would come to Alabama to be with us for a short time, and her doctor said if she left, she wouldn’t come back. She was down to about 110 pounds. My mother said she had never been 110 pounds in her life! And the Sutent had aged her. My husband commented on how shocking it was to see her, as she looked years older. So I set out for Houston with Isaac and Sammy in tow the first week of November. My brothers made plans to come the week before Thanksgiving to see her.

""Excerpt from Journal October 30, 2008: "I can't believe this is it. Mom got rescanned for the last time yesterday. Her friend drove her down to MD Anderson this morning to meet with the doctor.He said the cancer has taken over her liver, completely. There is nothing left that they can give her. She has, over the last five years, taken everything they can offer to kidney cancer patients. The only thing there is left to give her is clinical trials, and she's apparently not healthy enough for that. Basically the various drugs they have given her over the last year have done nothing, and it's grown to the point that they can't do anything else. I had a dream last night that she had gone to the doctor and they told her that it had gone down by 2/3 what it was. Silly dream. They told him that I wanted her to come stay with me for a few weeks. He said that if she flew here, she wouldn't make it back. He told her "goodbye" and then his PA came in, the woman mom has been seeing most of the time for the last 5 years. She was crying, and very upset, according to my mom's friend, Lorraine who was there with her. She told my mom that she was her "favorite". If you'd ever met my mom, you'd know this was easily the case. Then they left MD Anderson for the last time... what a trip it's been. She's spent more time in that place than any one person should have to. So, I'm moving back to Texas. By the end of next week at the latest. Still have to talk to the hubby and figure out what I'm gonna do with the kids. Take 'em with? Most likely. Gonna have to find a place to live, somewhere she'll be comfortable until she goes to Hospice, unless she changes her mind and decides to pass at "home". The doctor said that if we want to have anytime left with her, good quality time, we need to go in the next month." Close Excerpt"""

We spent the first week after I got there making plans. We found a cemetery that was doing green burials, which is what she wanted. We bought a plot, planned her funeral, went out to eat, and enjoyed our time together. We looked into getting an apartment. I seriously thought that she had at least till Christmas and we thought we would get an apartment, since hers was so tiny and I had my two youngest boys with me. The night after we signed on a lease, we both couldn’t sleep. I had a … negative feeling about it and mom confessed that she didn’t think it would be necessary, as she didn’t think it would be much longer. Hospice brought her in a hospital bed. By the end of that week, she had lost function in her hands. We went to Garden Ridge (I haven’t been in one since) and she couldn’t drive the motorized buggy. She said it was broken, but she wasn’t able to hold the handle forward to drive it. She couldn’t hold a fork. I have so many mixed feelings about how misinformed I was and she had been at this point. I hadn’t known to expect any of this. By Sunday, she couldn’t walk, and fell trying to get out of bed. I had to carry her to the bathroom. She was confused and told me that her bed moved because I hadn’t locked it. I called the after hours care and the nurse came to see her. He was incredibly rude. I asked if I needed to move my brothers’ flights up to come to see her. He told me no, she was young and it would still be awhile. We thought maybe it was her ammonia and calcium levels rising, causing her to act this way and that she still had time.

"""Excerpt from an email that week: “She wanted to get out this morning, so we went to the store, but she couldn't push the handle on the cart forward to make it go, and kept saying the cart was trying to stop her. So we came home and she went straight to bed. I made her take the Lactulose. She was sleeping all day, not making sense at all, and SO weak. Tonight I called the nurse again and demanded that someone come look at her, since no one has been since ... wednesday, I think. I was worried about her ammonia levels. A nurse came and told me it was most likely just progression of disease, that her eyes weren't jaundiced, but her blood pressure was 93 over 40. She's just so weak!!! She told him that she was confused as to why she was confused. *sigh* She kept trying to prove to him she had no pain. She tried to sit up and prove it and she kept tumbling back onto the bed. I told her that she MUST have me help her get up, if she needs to, as they haven't brought a bedside commode or mattress pads or anything. (I am SO frustrated right now!!) So I was sitting out here and I thought I heard her move, so I jumped up and right as I am at the door, I hear a bang and she yells. She tried to get up and walk to the potty. She CAN'T! But she doesn't understand that!!!!! She looked at me with hugs eyes and said the bed moved. It's locked. I couldn't move it, much less someone her size. She miscalculated. But she had to go potty, and no commode, so she wasn't gonna bother me, she was just gonna do it, and she fell. She's okay, though she might be bruised tomorrow. I then lifted her off the floor, and carried her into the bathroom, being stupid and not taking the phone with me. New rule, phone in pocket at all times. She was falling off the potty, so I had to hold her there, resting on my shoulder. She finished and I carried her back into the bedroom. I can't do this alone. At all. I told her to call me. I told her don't get up. She doesn't understand. She says she doesn't understand why she's confused. *gah* That's because she's confused!! I am gonna have to have someone come in here and help me…”"""


Her Hospice Nurse came in the following Monday morning and had crisis care in there that very day, 24-hour care. It all happened so quickly after that. My brothers’ moved their flights up to Wed and Friday. She was practically comatose by Monday night. My older brother moved his flight up to the next morning and my younger brother was there the next afternoon. Her blood pressure was dropping rapidly. She wasn’t speaking anymore and we were all jumping at the slightest noise she made.

The people in Houston were amazing; my kids were taken to be watched every day and night starting on Monday so I didn’t have to worry about them. We had food brought in so my brothers and I and my younger brother’s wife didn’t have to leave. We stayed by her bedside, played games, ate, and watched movies in her little apartment while the nurses came in and helped us take care of her. It was a wonderful bonding time, though we expected to lose our mom at any moment. Someone mentioned, by the end of the week, that it was her gift to us, this bonding time.

She was holding on for something and by Friday we were at a loss as to what it was. She was unresponsive and comatose. Nathan came on Thursday with David and Saturday night, a friend came to sit with her so we could all get out for a break. When we came back, we realized that our night nurse hadn’t showed up and we were on our own. This was terrifying. We took shifts. We were already exhausted from the incredibly emotionally draining week. Sunday morning our nurse from Saturday came back, and mom passed away that afternoon. Once again, her heart was the last to stop. She had a strong heart, in many ways. She once told me, when I was younger, that she thought she’d die of a heart attack. It’s interesting to me now that that was the last thing of hers to give up.

How do you even begin to cover the myriad of details that you go through when someone you love has cancer? There were more details, experiences, prayers, blessings, financial woes, financial blessings, scans, drugs, sickness, unfulfilled dreams and expectations that I haven’t included in this brief history. I am sure I will want to add more details to it later. But for now, this is a starting place. Later I’ll write about her funeral service and the week following her death.