Hi folks, it's been nearly a week since I've posted, so I figured I'd give you all an update. Well, since the last post, the steroids Marye had from her last chemo had worn off. They wore off after about 1 1/2 days, actually, so her fatigue issues continue. Also, I gave her a Neulasta shot after the chemo to keep her white blood cell count up. So, while it looks like she's not susceptible to infection, the marrow in her long bones are definately working overtime. It's like the growing pains you feel during puberty when your bones just ache. Nothing a little oxycodone can't overcome, but that just adds to her fatigue. At her request, I did a search to see if there was anything to be learned about chemo and fatigue, but there was just a lot of stuff about eating well and conserving energy. Not bad advice, but nothing that we haven't been doing already. So it just looks like this is something that she's going to have to deal with for the time being.
Ok, on Tuesday we went and took a tour of Gilda's Club in Louisville. The club was created in honor of Gilda Radner by her husband, Gene Wilder, and Gilda's therapist, and has over 20 houses around the country. Gilda died of ovarian cancer in 1989 (I think) and the club exists to give a support network and place to hang out for cancer patients and family members/friends. I have to say that I was very impressed. Marye, of course, is looking like a proper cancer patient (with the bald head/bandana) so she got lots of friendly attention at Gilda's. But everyone we ran into was extremely friendly and welcoming to me, as well. The club, itself, is beautiful. It looks very residential, with a lot of living rooms; the furniture and artwork are all donated by various groups/companies. They have a huge kitchen that would be suitable for any Food Channel show, with 5 ovens and a big gas stove top in a big island. They also have lots of support groups, wellness activities (yoga, etc.), art activities, and a big dinner every Tuesday night. I'm hoping to get Marye to the knitting group on Thursday night, and I might check out the "family/caretaker" group. Anyway, it seems like a very nice organization and if you get the chance to visit one, I strongly recommend it. Also, they operate solely from donations from the community, so if you're looking for a good cause, I would say that this qualifies. More to follow as we get more involved.
Ok, that's about it for now. Marye has her nadir blood work this Friday, then she's off for two weeks until her next chemo on Nov. 3. So the blog should be fairly quiet until then. I'll post the results of her blood work this week; but, otherwise, it's all fatigue, fatigue, fatigue. <sigh>
-Chris
Thursday, October 20, 2011
Friday, October 14, 2011
Chemo, round 2: A new day
Ok, lots to talk about today. Yesterday, we went down to Brown Cancer Center in Louisville for Marye's next chemo treatment. We had a consultation with Dr. Riley while they took a blood sample to make sure Marye was able to handle the chemo. So, we really wanted to talk a lot about side-effects, especially the fatigue that Marye's been suffering for so long. For weeks, she's done nothing but move from the bed to the couch, she would get winded just walking into the kitchen, and she didn't have the energy to climb the stairs. Well, something that Dr. Riley is especially concerned with is how her patients feel. So, we talked about switching to another chemo drug, and possibly going to a lower dose but taking it weekly. That didn't sound like fun, so Marye said she just wanted to stay on the 3-weekly schedule.
Dr. Riley wanted to switch to Taxol, which is very similar to the Abraxane, in that they're both paclitaxel, but the drug is suspended in a different solvent. That solvent is so toxic, in fact, that patients need to take a steroid and antihistimine prior to chemo to prevent allergic reactions. Also, the Taxol needs to be infused over 3 hours, instead of the 30 minutes for the Abraxane. I don't understand how this could be better than Abraxane, but ok, I'm not the oncologist. By now the blood work came back, and everything looked great. Marye's liver function is good, her bilirubin is low, and all her other numbers are fine.
So we go to the chemo lounge and they start with the Benadryl (antihistimine) and the steroid, dexamethasone. Then she goes to sleep for three hours while I go get something to eat and roam around Louisville. Fast forward to the end, and we drive home, but not before we had to run a few errands and even stopped to get something to eat. Marye ate some baked ravioli and garlic bread, and was doing very well, albeit a litlle wobbly. When we got home, she was a little tired, but had no nausea or other issues. We started to hold out some cautious hope that she wouldn't get knocked on her keister like she has been.
Well, this morning, if Marye wasn't as bald as an old man, you would never have known she had cancer, let alone had chemotherapy less than a day ago. She did laundry, sorted her clothes, put some books away, made a shopping list, and even called the doctor's office to tell them how great she felt. She was up and down the stairs and everything. I canceled the order for the stair-climber I was going to have installed. Seriously, she looked great and hadn't had a day like this since July 29. She wanted to visit some of her favorite stores that she hadn't been to in months, so I spent all day driving her around. Good stuff.
Anyway, around 3:00 she started to get worn down, and is now in her usual position on the couch, but she's not sick at all. So, I have to attribute her energy to the steroids, and that's ok. Maybe she should be on them every day. In any event, we don't know how long she'll have this much energy; it's possible that it will wear off and the chemo drugs will start to have their usual effect. But we're hopeful. Either way, that fact that she felt great today and isn't sick at all made it all worth it. Even if she loses her energy again, I'll be happy if she doesn't have the nausea. Ok, in addition to the steroids we picked up for her next treatment (in three weeks), I got a Neulasta syringe that I used to inject her today. This is similar to the Neupogen that I gave her last time, but it's only one shot instead of five. She had Neulasta in 2005 and is aware of the effects-- bone pain as it stimulates the bone marrow to grow white blood cells. So, she'll probably be kind of laid up for the next week while that goes on, and we have some pain pills to help her there.
Moving forward, barring any catastrophes (infection, etc.), she's got nothing to do until a blood draw on her nadir next Friday, then chemo on November 3rd. I've already got her dexamethasone (pills) for that treatment, so we're good to go. Dr. Riley says they want to do a CT scan after two months of treatment to check progress on the tumor, so that should be after next chemo. Down the road, we're anticipating that Dr. Vitale (remember him?) will need to change the stents in her bile duct OOA November 21.
Other than that, we're looking forward to some quiet time here. I'll post every few days to update everyone on her condition, or if there are any developments, but I'm hoping there won't be. Ha!
-Chris
Dr. Riley wanted to switch to Taxol, which is very similar to the Abraxane, in that they're both paclitaxel, but the drug is suspended in a different solvent. That solvent is so toxic, in fact, that patients need to take a steroid and antihistimine prior to chemo to prevent allergic reactions. Also, the Taxol needs to be infused over 3 hours, instead of the 30 minutes for the Abraxane. I don't understand how this could be better than Abraxane, but ok, I'm not the oncologist. By now the blood work came back, and everything looked great. Marye's liver function is good, her bilirubin is low, and all her other numbers are fine.
So we go to the chemo lounge and they start with the Benadryl (antihistimine) and the steroid, dexamethasone. Then she goes to sleep for three hours while I go get something to eat and roam around Louisville. Fast forward to the end, and we drive home, but not before we had to run a few errands and even stopped to get something to eat. Marye ate some baked ravioli and garlic bread, and was doing very well, albeit a litlle wobbly. When we got home, she was a little tired, but had no nausea or other issues. We started to hold out some cautious hope that she wouldn't get knocked on her keister like she has been.
Well, this morning, if Marye wasn't as bald as an old man, you would never have known she had cancer, let alone had chemotherapy less than a day ago. She did laundry, sorted her clothes, put some books away, made a shopping list, and even called the doctor's office to tell them how great she felt. She was up and down the stairs and everything. I canceled the order for the stair-climber I was going to have installed. Seriously, she looked great and hadn't had a day like this since July 29. She wanted to visit some of her favorite stores that she hadn't been to in months, so I spent all day driving her around. Good stuff.
Anyway, around 3:00 she started to get worn down, and is now in her usual position on the couch, but she's not sick at all. So, I have to attribute her energy to the steroids, and that's ok. Maybe she should be on them every day. In any event, we don't know how long she'll have this much energy; it's possible that it will wear off and the chemo drugs will start to have their usual effect. But we're hopeful. Either way, that fact that she felt great today and isn't sick at all made it all worth it. Even if she loses her energy again, I'll be happy if she doesn't have the nausea. Ok, in addition to the steroids we picked up for her next treatment (in three weeks), I got a Neulasta syringe that I used to inject her today. This is similar to the Neupogen that I gave her last time, but it's only one shot instead of five. She had Neulasta in 2005 and is aware of the effects-- bone pain as it stimulates the bone marrow to grow white blood cells. So, she'll probably be kind of laid up for the next week while that goes on, and we have some pain pills to help her there.
Moving forward, barring any catastrophes (infection, etc.), she's got nothing to do until a blood draw on her nadir next Friday, then chemo on November 3rd. I've already got her dexamethasone (pills) for that treatment, so we're good to go. Dr. Riley says they want to do a CT scan after two months of treatment to check progress on the tumor, so that should be after next chemo. Down the road, we're anticipating that Dr. Vitale (remember him?) will need to change the stents in her bile duct OOA November 21.
Other than that, we're looking forward to some quiet time here. I'll post every few days to update everyone on her condition, or if there are any developments, but I'm hoping there won't be. Ha!
-Chris
Wednesday, October 5, 2011
Bald
So, Marye had her first chemo treatment less than two weeks ago, but this weekend, we noticed that her hair was coming out in pretty big clumps. Well, she didn't want to shave her head until she had some caps to wear, and they're all in Nashville. So we went down to the Brown Cancer Center Resource Center today and picked up a few things for her to wear on her head.
She got some nice things that will keep her head warm and are pretty stylish. So, when we got home, it was time to shave her head.
She got some nice things that will keep her head warm and are pretty stylish. So, when we got home, it was time to shave her head.
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| Marye's Ponytail |
Well, that's it for today. She still is very fatigued, and has a constant low-grade nausea, but she's hanging in there. Her next chemo treatment is next Thursday, so it should be fairly quiet until then. I want to say "thank you" to all of her fans who have sent cards and emails to Marye with well-wishes. She does appreciate them and it helps to know that she is loved.
-Chris
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