Sunday, March 29, 2009

The New Normal

Mama Marian often remarks on how she's had "a little taken off the top". She also wonders if they just keep confusing her records with another patient's... again and again. It makes me laugh every time, but I must admit I often feel the same way; like someone is just waiting around the next corner to tell us it's all a big mistake and that we can just go home.

So, what we now refer to as "the new normal" is a bit like an evil groundhog day. We keep waking up to the same nightmare, but with some completely inconsistent, unpredictable twists on many of those days.

Mama Marian awoke on Friday after a long Thursday at Dana Farber, only to return to the hospital later that evening. As I mentioned in the last post, Mom needs to monitor her blood pressure every day. Not only do delightful things like high blood pressure run in the family, but the Avastin further complicates this by causing an increase in blood pressure as well. So, Mama Marian was directed by her nurse to the hospital on Friday afternoon after a pretty high reading.

This, after a full day of exhaustion and pain, did not sit well with Mom and she was jolted directly from stage 3-bargaining and stage 4-depression to stage 2-anger. I've personally been wondering why it's taken her this damn long to get there, as I hit second base fairly quickly and seem to land there more than I would like these days. However, Mama Marian, consumed with rage, was escorted to the ER despite her protest. I'm sure the fury complemented her high blood pressure well.

Anyway, May took Mom to the hospital, where they proceeded to take more blood from her. I'm beginning to notice that being a cancer patient not only involves being part-guinea pig, but also part vampire. Fluids are constantly coming and going, regardless of what the problem may be.

Mama Marian came home after a few hours and Dad has returned to his blood pressure monitoring post with an all new digital machine. Mom is currently bargaining with her nurse at McLean for a few hours to herself every day. Her nurse would like for someone to be around at all times. Well, I think we all would like that in some respects. At the same time, it's too much and there has got to be another way. Mama Marian is about even on the introvert/extrovert scale and has always needed time to herself. Mom considers this one of the most important "quality of life" issues and I'd have to agree.

On the bright side of this, everyone who has seen Mom over the last week or so has commented on how well she is doing and how her motor control and strength have improved. We are looking at a beautiful house in Chincoteague to rent for a week this summer. Hopefully, Jeff, Dou, and Lorien will be able to come and Jody will be able to pull himself from his work for a few days as well. South Carolina does not seem to be in the cards as we had hoped. It seems likes a bit too much right now, but we now have our sights set on the summer... some blue crabs, wild ponies, and mosquito-filled sunsets on the bay.

2 comments:

  1. Megan,
    I think this is a wonderful thing you're doing to keep everyone informed of your mom's progress. My name is Jodi and I used to work at The Hartford with your mom, she is a wonderful woman and I think very highly of her and I miss her. If she is ever up for it and it is okay with her and your family I would like to know if I could visit with her. I'm well aware of how hard all of this can be for your mom as well as your family as I dealt with this type of situation in my own family. I know that you don't know me but if your mom or family needs anything at all I would be happy to help. Please let me know if this would be okay.
    Thank you

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  2. Jodi,

    Of course you can come and visit her. Just give her a call beforehand, as she gets so tired and often has to spread people out (nurses, PT, OT, etc..) Why don't you email me and I will give you her contact info? Thank you so much for your very kind words. I know that she would love to see you.

    My email is meganestrange@gmail.com

    Thank you, thank you! ~Megan

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