June 22, 2010

What's new

I was reminded today by a good friend that I haven't posted here in a few days. Things are generally okay but when piled together, I find I am in need of professional support.

1. Treatment with Abraxane continues to be very tolerable with minimal side effects. I have a CT scan tomorrow (and get the results on Thursday) which should indicate any response so far. Dr. G's plan is to treat me until he sees a response, then add two more months. I think that puts us at re-scanning in three months, getting the hoped-for response, and maybe ending treatment in November. You can see how so many months of chemo appears daunting to me.

2. Lymphedema continues to bug me in the same way -- too much edema in the hand, which is exacerbated by wearing the sleeve and glove. I've been taking a psychological break by not wearing anything during the day, and wrapping at night. This has gone on for about a week. I was measured for new custom sleeves last week. This new brand is supposed to be worn with a glove of the same brand; together they presumably put less compression on the wrist. A regular sleeve and glove, when worn together as appropriate, put MORE pressure on the wrist, thus giving the potential to increase edema in the hand by forcing more fluid there. More stress from this.

3. The left elbow continues to be stuck at about 40 degrees of extension. Even after wearing the black plastic brace every night for two weeks, over my lymphedema bandaging, I still have only 40 degrees of extension. My therapist worked with me to position the brace in a more effective spot on my arm, which may result in additional extension. Or not. I see the orthopedist next week. I do not sleep well at night while I wear this gizmo and yet it seems to be the only thing that will return full extension to my elbow joint. Again, more stress.

4. Pumpkin's death continues to hit both of us hard. He pops into mind at odd moments. It's hard to close my eyes and not visualize him looking back over his shoulder to see where I am. Having Bobka helps a lot but still...

5. Eating the low carb/low sugar diet that Dr. G recommended is very fatiguing. I am tired of having to think about every bite, having to plan my carbs each day. Yesterday after my low carb breakfast of cottage cheese, fruit and a latte, I was hungry again at 10 AM. A coffee and half a piroshky helped, as did the (rather dry) tuna sandwich later supplied by the Cancer Institute. I didn't eat dinner last night (read on). Today I ate bread at breakfast, which pretty much consumes my carbs for the rest of the day. But at least I felt full.

I feel so overwhelmed by all that I am managing that last week I decided to seek professional help. I had lined up an appointment with one of the two psychiatrists associated with Swedish's Cancer Institute only to discover that neither of them is part of my mental health benefit network. I found this out yesterday, after spending six hours at the Cancer Institute, and was given one name, in all of Seattle, of a psychiatrist who specializes in treating people with chronic illnesses. He has yet to return my phone message from yesterday. I feel I am in serious need of anti-depressants but would prefer this kind of drug to be managed by a mental health professional rather than my oncologist or even my primary care doc, who is not in this week anyway.

When things are too much for me, my preferred method of coping is to go to sleep. I got into bed at 3 PM, with instructions to Rik to wake me if the one shrink called. I did get up a couple of times, but basically I self-medicated and spent 18 hours in bed. I woke up this morning, not exactly refreshed, but feeling more ready to take on a new day. That lasted until now, when I started writing this post.

Long story short, if you don't see a new post from me, it doesn't necessarily mean all is bad. In the past week I also chaired my first meeting of the synagogue board as president; went shopping for makeup with a friend; and laughed through an animated movie. In coming weeks we may go out of town. I appreciate that you all care and I promise will keep up on my blogging as much as my energy permits.

4 comments:

  1. I think you're smart to seek professional help to get you through this time. Grief, on top of lymphedema and the elbow and the other treatments, is a lot to handle. Good luck finding one that you can see. And, know that we are all wishing you the best.

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  3. I understand the part about 'thinking about every bite'. Don't you think, also, that blogging is like that. You have to sit down and think about things. Take a break. I think that you need one.

    I still wake up in the night thinking that I've heard my old dog wake up downstairs, and begin to walk across the floor. I always leapt from the bed and tried to get to him before he tried the stairs, because sometimes once up the stairs, he could not get back down them by himself. I'll sit up in the bed, and then I'll remember that he's gone. Still, it brings tears to my eyes, two months later.

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  4. Anonymous6:56 AM

    Jill,

    I follow your blog regularly and always look forward to reading about the adventures of you and Rik and your wonderful dogs. I was so saddened to hear of Pumpkin's passing. What a wonderful life he had with you and in turn what unconditional love and support he gave you. The loss of this wonderful friend must, especially combined with all the other things you have going on must be tremendous and my heart goes out to you, Rik and Bobka.

    Last winter I lost my beloved mare - she had been my strength and when ever I was with her I felt like I wasn't sick any more. Losing her really took the wind out of my sails and I really declined for a while. Then with the help of my friends and a little elderly mare who needed some love, I've started crawling out of that hole and am getting better and happier. I still cry when I think of her but I think I'm going to be ok and I think with your wonderful support network and your own amazing inner strength, you will be ok as well.

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I dance with cancer. Oy!