For Crying Out Loud

I hear this question from time to time, as in, how are you, really? the answer is long and complex and very simple. Not all that great. I mean, I am doing very well physically. I am only on one medication for regularity and I will be for the duration. I am not taking anything else except for the occasional Tylenol. There is still no evidence of disease, which is a good thing, I realize. Of course, no one is looking at this point, but there are no gross signs that they should be looking, either.

So, how am I doing, really? Let me tell you a story.

Once there was a woman who had a family and a full life. One day she received a call that she would have to leave for a long journey with little time to prepare. She grabbed her passport, bought a ticket and went to the airport. After going through security and all the checkpoints and procedures, she got the message that she would be taking a boat instead. And the boat wasn't in yet.

So, she went home to her family. She really had not had time to pack or prepare in anyway, so this was a great opportunity to do this. She packed a small bag, said good bye and went to the dock. While waiting, she heard that the boat was further delayed, so she returned home again.

While waiting this time, she took time to get more of her affairs in order, dispose of extra things she didn't need, streamline her life. Again she said good bye. Since this was the third time she was saying good bye, her family merely waved while they got on with their lives. The woman had said good bye to her family, her community, her work and had only her small bag.

She got to the docks and waited, and waited. She was alone. Very alone. No one was around, not even a dock worker. It was totally deserted. The woman was beginning to feel very alone. And worried that things were not going according to plan. Looking around, she noticed a bulletin board with a few ragged notices on it. She went over to read the notices, more out of boredom than anything else.

On the board she read that the ship she had been told would be carrying her to her destination had been detained for an undetermined time. She was alone at the dock with no way to contact anyone to come and get her. Her family and friends had said good bye and her work had moved on, replacing her. She had no place in the world, yet wouldn't be going on this journey. She never had wanted to go on the journey in the first place and yet she was mourning its cancellation. What a loney place to be.

Posted by Maman at 12:48 PM | Permalink | Comments (9)

Yes, you have seen this title before. It is still true now, as it was then.

Well, I have passed a milestone of sorts. The median life expectancy for someone with my diagnosis and surgery is 15 months. I passed that mark 4 days ago, apparently in reasonably good health. Depending on your perspective, a good thing, but not what I had planned. I say depending on your perspective because from the perspective of two years ago, I never thought this is where I would be. I thought I would live to be 85. Here I am at 55, grateful to still be alive.

So, I find myself in the position of waiting to die, not knowing when it is going to happen, but knowing it will be sooner than later. But it looks like it might be slightly later. The Hospice doctor (Dr. Katherine) came for a visit last week. She felt for my tumor, and like me, couldn't find it. She suggested that six months from now, if my health was the same, it would be time for a CT scan to see what was going on. Six months? I didn't expect to still be alive then. In October, the docs gave me six months to a year, and told me I was already 5 months into it. No matter how you look at it, it didn't look good for next July. Or October either. Whatever, I am leaving my options open.

Daddy and I signed up for pilgrimage back when Mara first went to Haifa. We just got our dates confirmed. January, 2008. That seems so very far away. I actually have to have a note from my doctor as to my ability to travel. I wonder what she will say. Anyway, I am planning on going, understanding that plans change. How else am I to live my life? I can't just stop. After all, I'm not dead yet.

It reminds me of a joke. There is a little boy. He goes to his Mama and asks, "Mama, is it true that we come from dust and to dust we will return?" His mama replies, "Yes, dear, that is what it tells us in the Bible." He responds, "Well, there is someone either coming or going under my bed." My problem is that I don't know if I am coming or going.

Posted by Maman at 11:55 AM | Permalink | Comments (11)

Thursday was the big day for me, but it started on Wednesday. I flew to DC in the afternoon,

arriving just in time for rush hour commuting time. I caught the first train (only a one minute wait!) to Rachael's stop, giving her just enough time to meet me. And, when I came out of the station, there she was! So quick! We drove to her apartment, had a cup of tea to warm up and chatted. Who's "we", you ask? Rae, me and Jeanne Marie, a co-worker of Rachael's. She and her two kids joined us for the evening. Rae, Jeanne Marie and I walked down to a Russian grocery store, and then on to a local Greek restaurant, where Eric and Jeanne Marie's kids joined us. We had a lovely dinner, after which Eric and the little boy went home to play wii and 'the girls' stayed for dessert and tea.

Rae took me to my hotel room in Arlington. I slept, as one does in a hotel. The next morning I got ready, and realized that hair dryers in hotels are not as hot as 'real' ones. Great, so I had no control over my hair. Terrific. I didn't put on any make-up because . . . well, I sort of hoped that someone there would help me with that. When I was checking out of the hotel, I heard one guy talking about how maybe tomorrow the Federal government would shut down. For snow. I looked out the window . . . at nothing. No snow. No rain. Nothing. I asked why they thought there might be snow tomorrow. Well, it was cloudy. And cold. 32. Our tax dollars at work, folks.

But let's get to the important part. I went to the Evermay House in Georgetown where the filming was going to take place. I was met by Elyssa Rubin, with whom I had chatted over the phone. I asked her who was going to be interviewing me. (Ted Koppel?) No, she was. (I never even saw Ted Koppel.) Well, she wasn't wearing any make-up, so I figured I'd be okay. So then, she showed me into the room where the interview would be taking place. As we were settling into our chairs, I asked her if she was going to be on camera. No, never! She hated that side of the camera. (Great! So there I will be for all of America to see me, and maybe much of the world (yeah! the Discovery Channel hopes so) to see me with no make up on. Oh, well.)

Our interview lasted about 45 minutes. Then we broke for lunch. Egg salad on wheat. Pretty good! Next on the agenda was to record me reading from my blog entries. I had written these between September and December, so it's been a while. Not only didn't I actually remember what I was feeling when I wrote it, some of them didn't quite make sense to me. But never mind, I read them with feeling. Not enough, especially at first, so I read them again, and again, and again. . . You get the picture.

Leroy Seivers was next on the agenda. He arrived during this filming process and so waited outside the room. They filmed our meeting. I have been reading his blog for about 6 months now, I think, and commenting almost since the beginning. I can't quite remember when it started. So, in a way, I feel as though we have met, just not in person. He was just as I imagined. A big guy, 6'5, and likes to eat. Like me, he doesn't look sick, but he was hurting from his radio frequency ablation that had taken place the week before. He was very genial and we chatted about our cancers, our lives, while they got ready for him to read his part. I was lucky enough to be able to stay and watch for a while, but then I had to catch a cab to the airport for my flight home.

I slipped out and went upstairs to the bathroom to change into more comfortable clothes for the trip home. When I came down, Theresa Heinz (John Kerry's wife) had arrived to discuss with her florist the placement of floral arrangements for an upcoming event. When her gaze passed over my face, I suddenly felt like I was an unwelcome peice of lint on her mink coat. I mean, would it have cost this woman anything to smile? Yuck. I sure can't imagine her as our next first lady. And can't her people figure out where to put the flowers themselves? Either she doesn't have enough to do or she doesn't hire good people.

The rest was uneventful trip stuff. We got in around 8 and I was home by 9:30. I did get better details about the show itself. Discovery Channel. April 29 from 8pm to 11pm. I am sorry for the length of the show. You don't have to watch the whole thing. You don't have to watch any of it. But if you want to catch me, I'll be on between 8:30 and 9:30. And I don't think I will land on the cutting room floor after all. There were at least 2 other women who they talked to, but I am the only one they filmed.

Posted by Maman at 10:21 PM | Permalink | Comments (1)