Some days I have much to write, and then I get home and fall asleep. Some days I forget I have a blog, or a computer. Not in a literal sense. I get too overwhelmed by the failings of my body to write. And then I fall asleep. Sometimes I lie in my bed and instead of sleeping, I concentrate on all the foods of the world, and what my body might possibly consider tolerating. The answer always seems to macaroni and cheese, which I don't actually tolerate well at all. Which I know, so I give up and fall asleep. I wonder why last week my legs would move without pain, and this week they're resistant to it. It's easier if I just sleep.
Last night I went downstairs to dinner. Chinese food, which I tolerated in small servings. For the first time in a long time we were together, a family of five. Allison said I came down to milk the cancer attention. Sure, like I wouldn't have come down all those other nights, too, for that. Jonah figured that if I made it to the kitchen I was feeling normal and could do everything for him, like normal. Jason and Ken treated me like a guest. And when Ken and I disagreed about something minor, I realized he's been the solo person in charge for so long, he's not used to my voice in his ear anymore. Maybe I'm not a ghost, but I'm not as substantial as I was.
I worry so much now about whether I will ever get to be substantial again. I can't deal with anything. I forgot Jason's orthodontist appointment. It's not chemo brain, it's exhaustion. When I'm at work my brain works okay. Which means I can finally blog as an awake person. I'm a little optimistic for today, actually. My legs hurt less, and I ate with no trouble. I do see Dr. Fox on Friday. Finally. I haven't seen him since August 30, and considering I'm counting on him to save my life, that seems too long. I'll try to update soon, if I can stay awake.
Wednesday, September 21, 2011
Friday, September 2, 2011
A Far Distance to Go in Three Days
That hurricane was a dud for us, as I hope it was for you. We sat up late, anticipating every disaster on the forecasts, and ended up hiding in the basement for awhile, kind of like a campout. We finally went to sleep, wondering what kind of earth we'd awaken to find on Sunday.
The world was surprisingly calm on Sunday morning. But not my stomach. Oh no. Sicksleep went into double mode, probably because I'd had the audacity to keep chemo from stealing Saturday. I would pay that price dearly. Sunday and Monday were horrible days I hope never to repeat, so bad that by Tuesday I needed to head to Penn for IV drip to stave off dehydration. Mercifully, they also added Ativan, which is a nausea reliever as well as a sedative. The Ativan did its work well. However, just before I passed into oblivion, Dr. Fox and Lorelei came to visit. I tried so hard to focus on what they said. I could understand the words, but not what Dr. Fox was trying to tell me. I kept repeating, "Well, that's good, right? That's good?" And Dr. Fox wasn't specifically answering that, but instead telling me more. I suppose he's used to talking to a functional brain, and I didn't have one at that moment. At the end, this is what I finally understood:
The first time I had my CT scan, on June 12, the cancer was so involved in my liver, and my surrounding lymph nodes were so swollen with it, the contrast dye could not seep past it to fill the remainder of my abdomen. Therefore, that scan did not show a complete picture. Now, my lymph nodes are significantly shrunk, as are the tumors, so the contrast had no trouble reaching all areas of my abdomen. Obviously this is a huge positive result, and yes drugged Michelle, that's good, right. Dr. Fox just wanted to let me know that he now wants another CT scan in a month, so he can compare two complete scans. All I wanted to know was whether I could still switch to oral chemo, or if I would be forced to endure Ixabepillone for another cycle. Somehow I failed to get that answer.
The hydrated and improved me/I was going to return to Penn on Wednesday for my scheduled appointment, but it seemed foolish when I had just seen Dr. Fox the previous day. I talked to the scheduler about it, and we agreed. She left a message for Lorelei, who sounded exhausted when she reached me hours later. Not only that, but Lorelei was also unclear about the chemo switch. She would need to discuss it with Dr. Fox the next morning. Which was when I posted to Facebook that I would update the next evening. Unfortunately, somehow I missed Lorelei's Thursday message, and had nothing to report last night.
I finally got the news from a nurse this afternoon, just as my father and Libby were entering my house, fresh from Florida. The nurse told me, drum roll, I AM switching to oral chemo! The prescription is ready to be filled, but I should not fill it until next week when I talk to Lorelei. I will take it 7 days, and then skip it 7 days. I don't return to Penn until later this month. Thank goodness! This is not just about the chemo, either. I've been in the classroom much of this week, and I can't express how excited I am about this new school year, and new 6-year-olds. This chemo allows me that side of my life. It returns my weekends to me, my life, my choices.
So many people pray for me, it's extremely humbling. I have to believe that all these prayers are floating along the right passages to make a positive difference. You're all so filled with love and kindness, with such generous spirits, your prayers may be riding on a faster wave. I'm lucky to have you on my side. So extremely lucky.
The world was surprisingly calm on Sunday morning. But not my stomach. Oh no. Sicksleep went into double mode, probably because I'd had the audacity to keep chemo from stealing Saturday. I would pay that price dearly. Sunday and Monday were horrible days I hope never to repeat, so bad that by Tuesday I needed to head to Penn for IV drip to stave off dehydration. Mercifully, they also added Ativan, which is a nausea reliever as well as a sedative. The Ativan did its work well. However, just before I passed into oblivion, Dr. Fox and Lorelei came to visit. I tried so hard to focus on what they said. I could understand the words, but not what Dr. Fox was trying to tell me. I kept repeating, "Well, that's good, right? That's good?" And Dr. Fox wasn't specifically answering that, but instead telling me more. I suppose he's used to talking to a functional brain, and I didn't have one at that moment. At the end, this is what I finally understood:
The first time I had my CT scan, on June 12, the cancer was so involved in my liver, and my surrounding lymph nodes were so swollen with it, the contrast dye could not seep past it to fill the remainder of my abdomen. Therefore, that scan did not show a complete picture. Now, my lymph nodes are significantly shrunk, as are the tumors, so the contrast had no trouble reaching all areas of my abdomen. Obviously this is a huge positive result, and yes drugged Michelle, that's good, right. Dr. Fox just wanted to let me know that he now wants another CT scan in a month, so he can compare two complete scans. All I wanted to know was whether I could still switch to oral chemo, or if I would be forced to endure Ixabepillone for another cycle. Somehow I failed to get that answer.
The hydrated and improved me/I was going to return to Penn on Wednesday for my scheduled appointment, but it seemed foolish when I had just seen Dr. Fox the previous day. I talked to the scheduler about it, and we agreed. She left a message for Lorelei, who sounded exhausted when she reached me hours later. Not only that, but Lorelei was also unclear about the chemo switch. She would need to discuss it with Dr. Fox the next morning. Which was when I posted to Facebook that I would update the next evening. Unfortunately, somehow I missed Lorelei's Thursday message, and had nothing to report last night.
I finally got the news from a nurse this afternoon, just as my father and Libby were entering my house, fresh from Florida. The nurse told me, drum roll, I AM switching to oral chemo! The prescription is ready to be filled, but I should not fill it until next week when I talk to Lorelei. I will take it 7 days, and then skip it 7 days. I don't return to Penn until later this month. Thank goodness! This is not just about the chemo, either. I've been in the classroom much of this week, and I can't express how excited I am about this new school year, and new 6-year-olds. This chemo allows me that side of my life. It returns my weekends to me, my life, my choices.
So many people pray for me, it's extremely humbling. I have to believe that all these prayers are floating along the right passages to make a positive difference. You're all so filled with love and kindness, with such generous spirits, your prayers may be riding on a faster wave. I'm lucky to have you on my side. So extremely lucky.
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