Tomorrow I reach the quarter mark of Taxol. Yippee! I'm tired of being tired. I'm not completely exhausted most of the time, but today I reached the end of my 9 hour workday and opted out of the neighborhood watch meeting I had planned to attend because I was just too pooped. But honestly, there were days before any tumor was discovered that I would feel equally tired just from the intensity of my job. Today there were a couple of patients who were really having a hard time and suffering with high pain, and I still am new enough to the field to have to wrack my brain to be sure that I make proper choices of approach with patients who are that highly challenged. My thirty years of massage therapy have given me some experiene to fall back on, but major medical issues have a lot of associated details with which I am still gaining familiarity. To be fair to myself, so are some of my collegues who have been at physical therapy for decades. It's a big field.
But my port was giving me some pain today too. I've been doing some yoga, bouncing on my rebounder and stretching my neck and shoulders, staying very busy...maybe it's just that. But I had some occasional stabbing pains in that area today, also some aching in the right arm (the port is on the right side of my chest), and I need to remember to pass that along to my team.
I also have to remember to tell Glenda tomorrow that I had some itching after my last treatment, and to show her a funny spot at the end of my scar on my breast - a tiny scabbed-over area that seems inappropriate so late after healing. How did it scab again? I expect it's nothing to worry about, but as I hyper examine every little thing, I guess I will need to point it out or sweat it out. What's the point of having upteen doctors if you don't show them all of your boo boos?
On Thursday, I'm going to meet with a radiation oncologist at another medical facility in Nashville. I want his input on what the next step should be, what radiation would entail if I do indeed do it, when it should start, etc. I need to make a list of things to discuss with him, including his recommendations for frequency of MRIs, as my current breast doctor is not planning an MRI until next year, and doesn't even plan to talk with me about it until October. I'm feeling really uncomfortable about all this, and have emailed him to request a phone call, but no response yet. So I'm glad I'll get some outside opinions. I've found every additional medical opinion I've received has been enlightening and very helpful to allow me to feel good about my choices, to make decisions that feel informed, not rash.
Tuesday, August 10, 2010
Sunday, August 8, 2010
Sunday, Sunday...
I think I allowed myself to get dehydrated today. I went to the Y and spent half an hour on the strider, drinking a little bit of water, but not a whole lot. Then I spent about an hour and half buying groceries at 3 different stores and finally stopping at Green Thumb in Green Hills for water. I should have started drinking that water right away, because by the time I got home, I was headachy and shaky and had to lay down for a while. How did I let that happen? The constant eating and drinking and taking pills is a chore, an effort. Ah, yes, I remember the good ol' days of eating and drinking without counting every ounce, every nutrient. I miss those days.
Saturday, August 7, 2010
Saturday celebration
I had a lovely day today on into the evening. Slept late (until almost 9 am!) and after Dave left for a day of music teaching I took the dog to the West Side Farmer's Market and picked up the week's veggies. Stopped by to visit my friend Rachel, then dropped dog and veggies off at home and headed to the center for a yoga class. I did much better in yoga this week than last, feeling only slightly dizzy and, having taken my iron pill, quite well energized. I was able to stick it out through the entire class today.
Went home for lunch after class and made a cucumber/tomato/yogurt salad with the fresh veggies-so good-and then made wheatgrass juice in the vitamix (with water and ice, then strained through a fine mesh gold coffee filter) and a big pitcher of lemon/lime-aide sweetened with agave nectar. I puttered around the house and vacuumed, cleaned up and put away things that had been left out during the busy week and prepared for my boss's daughter's wedding tonight, laying out clothes and making sure all was ready to go. I finally hit the wall and laid down on the sofa to rest just as Dave was getting home. A very energetic day. I like Saturdays to be that way.
The wedding was beautiful; bi-lingual as the groom has recently moved to the US from Spain and is still learning the American English language. He and his family were charming and the bride was adorable, uncontained in her exuberance. I was honored to be there. But as the evening wore on the music became louder and, for us, it was time to go as soon as the cake was served. In the past, I have always been one of those who feels that wedding cake must be consumed for luck and in honor of tradition, and I would usually wrap a piece in a napkin to bring home...a piece of cake to dream on. But, with as few sweets as I eat these days and with how squeamish I feel about them, the piece tonight tasted off-putting, not how I remember wedding cake to taste at all. I had been planning to take some home but after sampling a bit, changed my mind. And I had mused about and looked forward to it all day. Funny how things and our tastes change.
I have not had any further itching for the past couple of days; it was odd how itchy I was Wednesday night and then again on Thursday. Mostly my face, like I'd suddenly developed an allergy to my makeup; it hasn't bothered me before this week. I'm hoping that's not an allergic reaction to chemo that will prevent me from being able to use the Claritin instead of Benedryl, but I'll tell the team about it for sure. But fortunately, as I said, I'm not having any more of it now. I'm really feeling good.
Went home for lunch after class and made a cucumber/tomato/yogurt salad with the fresh veggies-so good-and then made wheatgrass juice in the vitamix (with water and ice, then strained through a fine mesh gold coffee filter) and a big pitcher of lemon/lime-aide sweetened with agave nectar. I puttered around the house and vacuumed, cleaned up and put away things that had been left out during the busy week and prepared for my boss's daughter's wedding tonight, laying out clothes and making sure all was ready to go. I finally hit the wall and laid down on the sofa to rest just as Dave was getting home. A very energetic day. I like Saturdays to be that way.
The wedding was beautiful; bi-lingual as the groom has recently moved to the US from Spain and is still learning the American English language. He and his family were charming and the bride was adorable, uncontained in her exuberance. I was honored to be there. But as the evening wore on the music became louder and, for us, it was time to go as soon as the cake was served. In the past, I have always been one of those who feels that wedding cake must be consumed for luck and in honor of tradition, and I would usually wrap a piece in a napkin to bring home...a piece of cake to dream on. But, with as few sweets as I eat these days and with how squeamish I feel about them, the piece tonight tasted off-putting, not how I remember wedding cake to taste at all. I had been planning to take some home but after sampling a bit, changed my mind. And I had mused about and looked forward to it all day. Funny how things and our tastes change.
I have not had any further itching for the past couple of days; it was odd how itchy I was Wednesday night and then again on Thursday. Mostly my face, like I'd suddenly developed an allergy to my makeup; it hasn't bothered me before this week. I'm hoping that's not an allergic reaction to chemo that will prevent me from being able to use the Claritin instead of Benedryl, but I'll tell the team about it for sure. But fortunately, as I said, I'm not having any more of it now. I'm really feeling good.
Friday, August 6, 2010
Iron
My oncologist insists that CIA (chemo induced anemia) does not respond to iron supplementation. Well, yesterday I felt great with the Benedryl worn off and the Decadron still working, but also having taken an iron supplement. Today I started out dragging; it was a drizzly morning and that can make me sleepy, but I was also having the dizzies when I stood up from the pool side with aquatic patients today. I got home, took an iron pill, got a massage, took a bath and started feeling much better. Tonight I'm not as peppy as last night, but I am much perkier than I had been in the early part of the day. Actually, could be the massage - it was wonderful and I feel much less achy; didn't even realize I was aching. My body craves Karen's massages; they feel especially healing, grounding, and I always feel an overall improvement after a session with her. I intend to continue using the iron either way until and unless it stops giving me even the impression that it's making a difference.
We went to dinner at our local Korean restaurant tonight, Seoul Garden, with friends Billy and Grace, and then came back and sat out on the porch to visit on a lovely evening, the first in a long time that has been fit for sitting out. I have a lot to do for that back porch still-it's under-decorated and under-furnished, but it's lovely to be out there. If the weather would just calm down a bit, I could try to get the yard under control and the patio fixed up. But patience is my middle name this year; I can't hurry the household improvements any more than I can the hair regrowth or the treatment time. It all has to go at its own pace and I have to be at peace with that because the alternative is madness and that is out of the question.
We went to dinner at our local Korean restaurant tonight, Seoul Garden, with friends Billy and Grace, and then came back and sat out on the porch to visit on a lovely evening, the first in a long time that has been fit for sitting out. I have a lot to do for that back porch still-it's under-decorated and under-furnished, but it's lovely to be out there. If the weather would just calm down a bit, I could try to get the yard under control and the patio fixed up. But patience is my middle name this year; I can't hurry the household improvements any more than I can the hair regrowth or the treatment time. It all has to go at its own pace and I have to be at peace with that because the alternative is madness and that is out of the question.
Thursday, August 5, 2010
Taxol #2
yesterday: I didn't get out of the Benedryl today, but I got half the dose. It was lousy, but a lot better than last week. I'm feeling kind of generally itchy tonight, on my face and throat but am not showing a rash. It could be the heat as easily as the chemo causing it.
today: It's amazing; I feel so much better than I have in a week or so. Yesterday's hemoglobin reading was lower than the previous week, so I am not yet bouncing back out of anemia, and I am still having a bit of dizziness when I stand up too quickly, but today my energy feels good, back to normal almost. Yes, I'm anemic; I am a little less perky than usual. But I really feel good tonight, and went to the Y today and did some time on the strider before going to give a massage this evening...first massage in a month or so. I want to get back at it on a somewhat regular basis; I've missed it.
Last weeks lethargy could be explained a number of ways-there seems to be a 24 hour flu going around my office that manifests in muscle aches and mild nausea. I felt like that last Friday and early Saturday and just chalked it up to chemo. Or maybe it really was a need for a dose of iron, which I took last night and today has been so much improved. Or maybe it's a homeopathic remedy that I've returned to taking after having laid off of it for a month and a half.
Gotta go to bed now; never enough time to work on this stuff.
today: It's amazing; I feel so much better than I have in a week or so. Yesterday's hemoglobin reading was lower than the previous week, so I am not yet bouncing back out of anemia, and I am still having a bit of dizziness when I stand up too quickly, but today my energy feels good, back to normal almost. Yes, I'm anemic; I am a little less perky than usual. But I really feel good tonight, and went to the Y today and did some time on the strider before going to give a massage this evening...first massage in a month or so. I want to get back at it on a somewhat regular basis; I've missed it.
Last weeks lethargy could be explained a number of ways-there seems to be a 24 hour flu going around my office that manifests in muscle aches and mild nausea. I felt like that last Friday and early Saturday and just chalked it up to chemo. Or maybe it really was a need for a dose of iron, which I took last night and today has been so much improved. Or maybe it's a homeopathic remedy that I've returned to taking after having laid off of it for a month and a half.
Gotta go to bed now; never enough time to work on this stuff.
Tuesday, August 3, 2010
Preparing for Taxol #2
Today I spoke to Glenda about tomorrow's treatment and the plan to take a Claritin instead of doing the IV Benedryl. Apparently, it's no go. They can give me half as much, but again I was told that the risk of an allergic reaction is too great and it is Infusion Center policy to give IV antihistimines for the first 2 infusions, and to consider oral administration after that. A patient of mine who has been through this treatment told me that she had the same trouble and that they gave her the full dose the first time, half the second, oral administration of 2 pills the third, one pill the fourth and nothing after that, so I guess I will have to hang in with this and see how it goes. I do not intend to have an allergic reaction. I am not happy about the Benedryl.
I have to remember to put my Emla cream on the port 2 hours in advance of the blood draw, though; I was tardy with it last time and it was truly painful to get stuck. I will set an alarm on my phone to remind me. It may be embarrasing when the alarm goes off but I'll deal with that. The port accessing is hard enough; I don't need it to also be painful.
Today was a much better day than yesterday. I took regular walks at regular intervals, starting with a pre-work promenade with the dog, and then a couple of 15-20 minute bouts on the track at work. I've also cleaned off the rebounder I bought at a Goodwill back in LA before we moved to Tennessee and which has been gathering dust in the garage for the past 12 years and brought it onto the back porch and have spent a few minutes on it last night and this morning. It's really too bloody hot today to do anything outside, amazing that I made it out for the dog walk this morning. But the increased activity today has helped me, I think, and I do feel much less lethargic than I did yesterday. I'm hoping my energy will continue to increase now. I took some iron this morning too. I don't think I'm in danger of hemachromatosis, so I'll keep taking it.
I need to find a good book to take to the clinic with me tomorrow. They have lovely flat screen TVs with DVD players in all the treatment rooms, but not enough remotes to go around. Without that, it's useless. So no point in bringing movies to watch. Maybe I'll bring this computer and try to write or watch something on this. That's probably the ticket. Then Dave doesn't have to be inflicted with my TV junk fascinations, like Big Love or Mad Men. I don't usually watch much TV except for a couple of late night shows, but particularly during something like the infusion, it's calming to have a distraction like that. And I still have several movies on loan from my sister waiting to be watched-yeah, I'll bring the computer. Now I have to go pack some sandwiches for Dave to bring down to the center when he meets me for the treatment; we tried the food from the cafeteria last week and won't make that mistake again. We'll be happier with a brown bagger.
I have to remember to put my Emla cream on the port 2 hours in advance of the blood draw, though; I was tardy with it last time and it was truly painful to get stuck. I will set an alarm on my phone to remind me. It may be embarrasing when the alarm goes off but I'll deal with that. The port accessing is hard enough; I don't need it to also be painful.
Today was a much better day than yesterday. I took regular walks at regular intervals, starting with a pre-work promenade with the dog, and then a couple of 15-20 minute bouts on the track at work. I've also cleaned off the rebounder I bought at a Goodwill back in LA before we moved to Tennessee and which has been gathering dust in the garage for the past 12 years and brought it onto the back porch and have spent a few minutes on it last night and this morning. It's really too bloody hot today to do anything outside, amazing that I made it out for the dog walk this morning. But the increased activity today has helped me, I think, and I do feel much less lethargic than I did yesterday. I'm hoping my energy will continue to increase now. I took some iron this morning too. I don't think I'm in danger of hemachromatosis, so I'll keep taking it.
I need to find a good book to take to the clinic with me tomorrow. They have lovely flat screen TVs with DVD players in all the treatment rooms, but not enough remotes to go around. Without that, it's useless. So no point in bringing movies to watch. Maybe I'll bring this computer and try to write or watch something on this. That's probably the ticket. Then Dave doesn't have to be inflicted with my TV junk fascinations, like Big Love or Mad Men. I don't usually watch much TV except for a couple of late night shows, but particularly during something like the infusion, it's calming to have a distraction like that. And I still have several movies on loan from my sister waiting to be watched-yeah, I'll bring the computer. Now I have to go pack some sandwiches for Dave to bring down to the center when he meets me for the treatment; we tried the food from the cafeteria last week and won't make that mistake again. We'll be happier with a brown bagger.
Monday, August 2, 2010
Taxol
I'm tired. Surprisingly tired. But today was an odd day at work, and I think the slow pace prevented me from ever gearing up and getting out of my doldrums. Even started into a migraine at around 4 pm, but a couple of Excedrin Migraine tablets took care of it, thank goodness. I came home and meditated on dealing with the fatigue and actually feel better.
So, so far, the fatigue is the worst of the Taxol. I was tired over the weekend, and now again today. I sure as heck hope this is not in store for the entire 12 weeks. Or beyond...I WILL find some way to combat it. My oncologist told me that iron would not help as this is not iron-deficient anemia, but brought on by chemo. Still, be it the placebo effect or a real response, I felt a bit better when doing iron, and I will get back to it tomorrow. Also to the homeopathic remedy that had helped me earlier in my treatment. I did walk for about 20 minutes earlier today but didn't get it together to walk the dog tonight. Maybe in the morning.
I'm also hoping that Wednesday will be easier with an oral Claritin dose rather than IV Benedryl. Perhaps I will not be knocked out by that and will have Wednesday evening to do some activities, even laundry, which would be preferable to losing that entire time to a drugged out sleep.
I am taking 30 grams of Glutamine daily, 10 grams 3 times, to fight the peripherial neuropathy that is the most commonly reported side effect of Taxol. Several recent studies indicate that there is no danger and significant benefit with using this amino acid to address that side effect so I'm on it. It's pretty easy to take, a powder you dissolve in water or juice, or even sprinkle on fruit, cereal, etc. Anything I can take in a non-pill form makes me very happy as my already-present swallowing difficulty has been a bit exaggerated since beginning chemo. I'm getting physical therapy myself to address this and I do feel like I'm able to swallow a bit better, with less stuck pills in my esophogus lately, but it's still a chore to get them down and requires preparation and focus to avoid pain, coughing or hiccups. Hopefully more PT will lead to a huge reduction in this response.
Anyway, I always think of hundreds of things I want to write about here during the day when I am away from my computer, but at the moment, that's all I got. Be well. XOX.
So, so far, the fatigue is the worst of the Taxol. I was tired over the weekend, and now again today. I sure as heck hope this is not in store for the entire 12 weeks. Or beyond...I WILL find some way to combat it. My oncologist told me that iron would not help as this is not iron-deficient anemia, but brought on by chemo. Still, be it the placebo effect or a real response, I felt a bit better when doing iron, and I will get back to it tomorrow. Also to the homeopathic remedy that had helped me earlier in my treatment. I did walk for about 20 minutes earlier today but didn't get it together to walk the dog tonight. Maybe in the morning.
I'm also hoping that Wednesday will be easier with an oral Claritin dose rather than IV Benedryl. Perhaps I will not be knocked out by that and will have Wednesday evening to do some activities, even laundry, which would be preferable to losing that entire time to a drugged out sleep.
I am taking 30 grams of Glutamine daily, 10 grams 3 times, to fight the peripherial neuropathy that is the most commonly reported side effect of Taxol. Several recent studies indicate that there is no danger and significant benefit with using this amino acid to address that side effect so I'm on it. It's pretty easy to take, a powder you dissolve in water or juice, or even sprinkle on fruit, cereal, etc. Anything I can take in a non-pill form makes me very happy as my already-present swallowing difficulty has been a bit exaggerated since beginning chemo. I'm getting physical therapy myself to address this and I do feel like I'm able to swallow a bit better, with less stuck pills in my esophogus lately, but it's still a chore to get them down and requires preparation and focus to avoid pain, coughing or hiccups. Hopefully more PT will lead to a huge reduction in this response.
Anyway, I always think of hundreds of things I want to write about here during the day when I am away from my computer, but at the moment, that's all I got. Be well. XOX.
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