Tuesday, August 18, 2009

chemo vacations

I have been remiss about writing. Not much to say…
I am starting another chemo vacation tomorrow (my birthday. 41!) that is going on for 3 weeks. J During the time that I was on the last one, my tumor marker went from 55 to 63. The doctor was not concerned about it. He wants me to take this next vacation and enjoy the summer with the family. I have had 2 weeks of chemo between vacations. I am going to get my markers checked before the vacation, so I know what happens during it compared to during chemo.

I have up days and down days. I am always surprised that I get wiped out. Maybe it is my spaciness that makes me forget, maybe I am optimistic. I wish I could control them so I could chose which days to lay around and which I can do my projects, but I cant. The up days come at unknown times. The doc has changed my benedryl to something that does not have as many side effects, so after chemo last week I was full of vim and vigor. Now I am wiped even though it has been almost a week since the last chemo. Maybe coming off of the steroids. Maybe the chemo stays in my body longer than one would think. I don’t know.

There is a bunny in the neighborhood. We caught it once and gave it back to the little girl who got it from an aunt, but she did not keep it for more than a week. We are trying to catch it again so we can give it/find it a home. We don’t know if we will keep it, but who knows…. It is a baby, white and black. Very very cute.

The kids just went on their last week away for the summer. Camp Kesem is for kids who have a cancerous parent. That’s me. I hope they are having fun. I thought I would be glad to have more down time, but it is the first morning and I miss them terribly. Ya never know how something is going to make you feel till it gets here.

The chickens are all laying. The one that we were told was a boy, isn’t. So we have 9 laying hens and about 7-8 eggs a day. They are little, but very yummy. Some of the hens lay in the boxes they are supposed to, but most lay in one spot under the blackberries. Oy! They are very friendly. We have started watering the lawn so the chickens have greens to eat. The garden is good. We are trying to get the next round of patches planted with winter squash, spinach and turnips. Maybe we will plant favas again somewhere. That went well. The tomatoes are just coming in. The cukes are just finishing. Beans are slow producers…etc…

We seem to be all about the food and the yard and the projects in the yard these days. It is fun.

Wednesday, August 05, 2009

Update

It has been a while again. It is early Wednesday morning. I am about to go back to chemo today. I had a chemo vacation of two weeks. That is I did a round of 3 weeks, had my usual week off, and then had another 2 weeks off. It has been a good learning experience. There is subtlety to what the chemo does to me. I have clearly had more energy, which is really nice, but also a general feeling human, sleeping better and better gut mean that life has just been easier. I am ok going back to chemo today because I know that it is part of the medicine that makes me feel better. I remember back to before I started it and I was in pretty bad shape. I am not in bad shape anymore, relatively speaking.


This all leads to people saying, ‘so are you getting better?’ That is a complicated question. I am not getting worse, but I am not ‘all better.’ Connee described it for me well. I am in a no mans land. The whole family is. Life is kinda normal, but not really the way we would have it if we could. The proverbial shoe could drop any time from now for a couple of years, according to the medical establishment. That would mean that I would have to change chemos to one that makes me feel worse. But I am doing a lot of other stuff and last time I had 5 years between flare-ups, so… I am holding out for longer. It is still strange though because we are really living with the cancer again with it affecting us more than it used to. So there is an underlying tension, but on top of that we are living our lives, talking about it and having fun where it is available (which is more than one would think!) so that life is not about cancer (‘cause that is a drag).


I am very grateful for people who are helping us. I do not know if that is clear to you all or not, but I am. I also feel like some people may start to think that we are getting back to ‘normal’. Well normal has just changed so there is no returning to what was normal for us when I was not sick. That is the confusing part. We may look more normal, but the help is still appreciated. Being the good Jew that I am, there is guilt associated with receiving help when I do not look like I need it. So I keep looking to the practice that tells me that I can give others opportunities to do good deeds by letting them help me. So by you helping me, I am helping you to do good (which is good for everyone).. We currently get 2 meals a week and the usual last minute calls from me to people to pick kids up or drop them off somewhere. This summer has been nuts with logistics. That is another way that the chemo is affecting me. I am just not able to think as clearly and hold any balls in the air when it comes to family scheduling. It is frustrating to make so many mistakes that affect so many people. That is the next step for me. To figure out how to be more coordinated. At this point I do not make any plans without my ‘book’ in front of me, so thank you for all of your patience.


We took a real vacation too: I have to run but to keep it short, we went to Santa Barbara with Andy’s siblings that live in the states and their families. It was mellow, beautiful and relaxing. I did not realize what a break it was until I came back and tried to start thinking about everything that needs to be done around here. It was a real break. Andy and I had a date too to celebrate our 15th wedding anniversary J. We took a recumbent bicycle for two and went on a 4 mile round trip. He did a bunch of the hard work, but I was able to keep up pretty well. That is an example of what I can do these days. Lets see how the chemo vacation affected my tumor marker. We should know in a couple of days. We are planning for me to have one round of chemo, then another two-week vacation for the end of the summer. We might not go away, but it would be nice to be around the house and not feeling ucky…