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December 6, 2008

This time last year, I was bald. This year, I am painfully short (well, my hair is).

I’ve decided to start keeping track of my hair adventures with this next round of chemo – I have a patchy record from the previous treatment, but am going to start a picture album of the changes I go through this time. I really regret that I didn’t get more pictures of the super-tight curl and the afro in its various stages and colors; although perhaps I can get a digital copy from the radiation oncologist of my ‘tweener stage with the bleached curls and the white roots. Except I have the “deer-in-the-headlights” stare in that one, so it’s not one of my better pictures. I definitely take after my mom that way – we always look like that in posed pictures. Candids are *much* better.

My radiation burns are clearing up nicely. Lots of peeling, with smooth, shiny skin underneath; but I suspect that I’m going to have a visual reminder from the treatment for quite a while until the tan fades. Happily, I haven’t developed a lot of scar tissue yet, although that is apparently an ongoing development for months if not years after. There is one big clump right in between the two scars, but now that my skin isn’t so sensitive to touch, I’ve gotten back into the massage technique the physical therapist showed me. I had to buy some tennis balls just for that – it puts a more even pressure on the tissue and rolls very easily, whereas using your fingers creates more specific points of pressure (which is fine in many types of massage, but not so much for breaking up scar tissue, I guess). The trick is to keep from doing it when the dog is around – he thinks tennis balls are *his* toys. Fortunately he’s not such a ball dog as a retriever would be. Robin will play fetch and dribble them between rungs of a chair, but by far his favorite game with a tennis ball is to pull the fuzz off of it.

I’m still feeling some fatigue, although it never got as bad as I thought it might. I have had some difficulty sleeping, but for the most part have been getting roughly 7 or 8 hours most nights.

Next up, I have my chemo port implanted on Tuesday this coming week. When I met with the surgeon, she said that she would try to put it on the right side again, in the same spot as before; but sometimes scarring from a previous port can make that impossible. If that’s the way it goes for me, she’ll have to put it in on the left side. That’s undesireable for several reasons – there’s all the skin damage from the radiation treatment to avoid; I normally sleep on my left side, and laying on the side with the port is very uncomfortable; but the biggest fear is that it will raise the risk of lymphedema in my left arm significantly. I am very anxious to avoid developing lymphedema. The people I know who have it tell me it is much more than inconvenient – it can be life-changing because of the way you have to limit things you do, and how you do them. I’ll keep my fingers crossed (unless someone tells me that lymphedema can be triggered that way. . .).

At this point, I haven’t heard back from the oncologist about the use of Avastin in my case – he was out of town the week before, and this week I think he was hoping to avoid talking to me by having the triage nurse ask if I couldn’t just talk to him when I came in for my first chemo. Well, no, I can’t. I’m very concerned about the significant increased risk of thromboembolic events (blood clots), because of my history. And I really want to know how he can justify that risk in the face of an unknown benefit for a treatment that is completely non-standard. On the other hand, I’m also paranoid about the possibility that this recurrence is much more aggressive than we know, and am willing to take a calculated risk in an effort to make sure that any cancer cells that might have gotten through the lymph system are dealt with. So I stated my concerns very clearly, and asked to have him call me back. When I hadn’t received a call as of Friday morning, I called again and told her that I really wanted to hear from him, as this is very important to me. She called back early Friday afternoon, and said that he was “gathering information”, and that he would call me early next week. OK.

Then Friday, we’re flying down to see our parents for our usual fly-by Christmas visit. Robin is staying with our neighbors Sharon and Gary, who have the two miniature poodles Jasmine and Lola. The three of them got along great at Thanksgiving (i.e., Robin, Jasmine, and Lola), although the two girls did sort of play together and sort of ignore Robin. I’m hoping that enforced together-time will be more fun for him – he and Jasmine loved to play together before Lola came along, so I think he really misses that.

Tomorrow we’re going to see little Emily Rose (and daddy Greg, too!) in The Nutcracker Suite. ER is going to be a Snowflake, and part of the Arabian dancers; Greg is going to be one of the Party Guests. I don’t think he has to dance, but he may be wearing leotards – no, probably not. I bet you couldn’t pay him to do that!

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1 Response to “December 6, 2008”


  1. 1 Greg Martin
    December 8, 2008 at 3:21 pm

    No, there were no leotards, and yes, you couldn’t pay me to do that!

    Sorry to have missed you after the performance. Six people we invited had already left when I got finished changing. I didn’t think I’d danced *that* badly!

    Hope you are doing well, Julie. Everyone told me you looked very good. Here’s hoping you and Brian have a merry Stress-mess!

    gm


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