I got my energy back yesterday and it was still present today. Oh yeah...it feels good to be back. I hope it is not a temporary reprieve and that I will continue to experience a increase in umph, and that I've truly gotten my mojo back.
This morning I sold the hand-cranked wheatgrass juicer my folks sent to me at the beginning of the chemical treatment phase of this journey and then made myself a glass of wheatgrass/apple and assorted greens juice in the Omega electric. I traded stainless steel man-powered for plastic and polycarbonate plugin. I prefer stainless in principle, but just couldn't deal with the constant falling off of the counter, not to mention the amount of exercise required to turn the crank. Much better for me to use the machine that I'm using and get the juice than to be off put by the requirements and not end up getting the elixer. It's like the question about organic brocoli-better to eat organic than conventional, but better to eat conventional than none at all.
Spent the early afternoon with my friend Sandy who is a long time breast cancer survivor; she was kind enough to take me out to lunch and to tour the Country Music Hall of Fame. I've been there before, in fact I play there with Dave in an educational presentation about twice a year, but I haven't toured the exhibits in several years. It's always inspiring, always interesting. It's also meloncholy, looking at the artifacts associated with so many people I've known personally and some who are gone now, who I miss desperately. It also just in general sends me down memory lane, reviewing so many great moments in my life as an unknown musician. I had a damn good time back in my former life, and today.
Took the dog-girl for a walk by the lake in the late afternoon, with perfect fall weather and the trees still dropping red and golden leaves. Xena shines on walks like that-she loves them, the smells, the critters and all the admiration she gets from passers-by. I did too, but am so out of practice that my feet were sore afterward despite having worn my sneakers. I still had the energy to make dinner afterward, and am now relaxing and watching TV. A really nice day. The front lights are off and we are not participating with the few trick-or-treaters who are roaming the neighborhood. We are cuddled up, hunkered down and staying in. I wish I had some apple cider to heat up.
Saturday, October 30, 2010
Friday, October 29, 2010
Great Day
Today was the first Friday in a long time that I didn't crash. I actually had pretty normal energy today. It is 10:30 at night and I have been out to celebrate my end of chemo with the office crowd who wouldn't let me pay for a thing...too sweet of them as I really feel as if I should've treated them. It's humbling how generous and supportive my coworkers have been, and I know they have made things soft on me, but working has been so helpful to me. I'm sure this would have been a rougher road to travel if I hadn't been able to work. Now that I feel myself coming out of the fog, I just don't want to expect myself to do so much more that I become as worn out as I was at the time that I was diagnosed.
I've also been out to hear some friends play at Brown's Diner and sit with Dave as he ate his dinner and I nursed a beer to be justified in taking my space at the bar. It was nice to be out in the kind of environment in Nashville that charmed me from the start. And to have the energy required to be spontaneous and to jump on a chance to go out and spend time with my husband.
I've spent so little time out aside from going to work that I am not unrecognized frequently; I don't see much of anybody I know. But tonight a friend I hadn't seen in a long time introduced himself to me. I tried to stop him from being embarrassed about it, but he was. How could he know? I had very distinctive hair b.c. (before chemo), and the boy-cut I've got now, all silver-and-gunmetal, is a very different look. I kinda like it. I don't mind the very short hair thought at all, but I'd like a bit more of it. Anyway, I'm sorry anyone is embarrassed if they don't recognize me, but it's kind of fun sometimes to be incognito.
I've also been out to hear some friends play at Brown's Diner and sit with Dave as he ate his dinner and I nursed a beer to be justified in taking my space at the bar. It was nice to be out in the kind of environment in Nashville that charmed me from the start. And to have the energy required to be spontaneous and to jump on a chance to go out and spend time with my husband.
I've spent so little time out aside from going to work that I am not unrecognized frequently; I don't see much of anybody I know. But tonight a friend I hadn't seen in a long time introduced himself to me. I tried to stop him from being embarrassed about it, but he was. How could he know? I had very distinctive hair b.c. (before chemo), and the boy-cut I've got now, all silver-and-gunmetal, is a very different look. I kinda like it. I don't mind the very short hair thought at all, but I'd like a bit more of it. Anyway, I'm sorry anyone is embarrassed if they don't recognize me, but it's kind of fun sometimes to be incognito.
Still In Detox Mode
Written on Tuesday:
My hair is showing evidence of a curl. Eyelashes are beginning to bud. Eyebrows still very sparse, but I think they are growing. It's all too slow; I'm ready for full-hair action. And it's weird to need a haircut with only a half inch on my head, but there are random wires sticking out all over and it's starting to look unkempt. I know there is still plenty of chemo in my system...not really sure what the half-life of those chemicals are, but I'm still pretty danged tired although getting better every day. I wonder if I'm still anemic?
Got a much-needed massage today, and have been barely functional since, requiring all my strength to make dinner, although I kept it very simple. I really do need to consult a nutritionist, I just don't know who would be appropriate. I need help with meal planning and preparation to focus on the types of foods I think we should be eating here.
Dave is working on posting some record reviews that he's written lately-all classical and baroque. I am the inadequate computer tutor and doing my best to help him navigate these confusing sites. The evenings go by too damn fast; time for personal pursuits is so precious and my energy is still so limited.
My hair is showing evidence of a curl. Eyelashes are beginning to bud. Eyebrows still very sparse, but I think they are growing. It's all too slow; I'm ready for full-hair action. And it's weird to need a haircut with only a half inch on my head, but there are random wires sticking out all over and it's starting to look unkempt. I know there is still plenty of chemo in my system...not really sure what the half-life of those chemicals are, but I'm still pretty danged tired although getting better every day. I wonder if I'm still anemic?
Got a much-needed massage today, and have been barely functional since, requiring all my strength to make dinner, although I kept it very simple. I really do need to consult a nutritionist, I just don't know who would be appropriate. I need help with meal planning and preparation to focus on the types of foods I think we should be eating here.
Dave is working on posting some record reviews that he's written lately-all classical and baroque. I am the inadequate computer tutor and doing my best to help him navigate these confusing sites. The evenings go by too damn fast; time for personal pursuits is so precious and my energy is still so limited.
Sunday, October 24, 2010
Itch, itch, itch....
One of the symptoms I was warned about was general itchiness post Taxol. Oh, yeah.... Some of it is due to dry skin and goes down with an application of lotion, but there must be a chemo-detox factor to it as well. There's a bit of contact dermatitis-looking rashiness as well as just itching with no visible reason. Very annoying. I'm drinking lots of water and have been meaning to without success get to the Y and sit in the sauna. Need to do some exercise to work up a sweat too; maybe I'll have a cancellation at work tomorrow.
Right now there is a tornado warning for the part of the state south of us. The weather man on channel 2 is naming off towns-Hoodoo, Hard Scrabble, Stringtown, Gassaway, Bug Scuffle, Defeated-the names are so great, it distracts from the severity of the situation. Right here in Nashville at the moment, all is calm, just wet.
I've been tired. Really tired a lot of the time this week. That too, I think, is a function of chemo detox, and probably a little bit because I finished chemo and immediately went into a super busy schedule of hanging out with my folks, then having a longer work schedule this past week as well as doctors appointments, and lots of general catching up to do. I've been trying to respect the fatigue, to rest well and sleep long and hard on the weekend. Spent the morning today sitting on the back porch with a book and a cup of weekly coffee; a treat and a very peaceful way to kick off the day off.
One of the things I've been learning about triple negative breast cancer is that it is thought to be responsive to insulin levels; it's suggested to keep them low and consistent. So I'm thinking about getting a nutritional certification of some sort myself, and in the meantime, visiting a nutritionist who can help me with a low fat, low carb, alkaline diet. I have no trouble with the concept of focusing on eating my fruits and veggies, but in what combination and proportions, that's a question I'm not quite able to answer at the moment. And I don't think I've ever had a fasting blood sugar level taken, nor a fasting cholesterol, so I will email my doctor and ask for this.
There is a clinical trial coming up of a drug called Metformin, used mainly to treat type 2 diabetes, testing as to whether it is useful for improving the long term prognosis for breast cancer patients. I expect to be asked to participate in it. I'm not sure about doing that-it sounds like I would really like to get the drug, and I'm not sure how I feel about taking the drug twice a day for 5 years without knowing if I've really gotten the goods or a sugar pill. This one will never be un-blinded; I would never know what I actually got. I don't feel good about that as I just think about it in advance here, but I suppose I may change my thinking as I learn more.
Today's symptoms:
Dizziness-every time I bent down today, I felt lightheaded upon standing up. Skipped yoga today because of it.
Itchiness-all over, not constant but consistent. Annoying.
Mouth pain-3/10, right side of tongue
Swallowing-pretty good.
Nose bleeds-diminishing; no major bleeding today!
Right now there is a tornado warning for the part of the state south of us. The weather man on channel 2 is naming off towns-Hoodoo, Hard Scrabble, Stringtown, Gassaway, Bug Scuffle, Defeated-the names are so great, it distracts from the severity of the situation. Right here in Nashville at the moment, all is calm, just wet.
I've been tired. Really tired a lot of the time this week. That too, I think, is a function of chemo detox, and probably a little bit because I finished chemo and immediately went into a super busy schedule of hanging out with my folks, then having a longer work schedule this past week as well as doctors appointments, and lots of general catching up to do. I've been trying to respect the fatigue, to rest well and sleep long and hard on the weekend. Spent the morning today sitting on the back porch with a book and a cup of weekly coffee; a treat and a very peaceful way to kick off the day off.
One of the things I've been learning about triple negative breast cancer is that it is thought to be responsive to insulin levels; it's suggested to keep them low and consistent. So I'm thinking about getting a nutritional certification of some sort myself, and in the meantime, visiting a nutritionist who can help me with a low fat, low carb, alkaline diet. I have no trouble with the concept of focusing on eating my fruits and veggies, but in what combination and proportions, that's a question I'm not quite able to answer at the moment. And I don't think I've ever had a fasting blood sugar level taken, nor a fasting cholesterol, so I will email my doctor and ask for this.
There is a clinical trial coming up of a drug called Metformin, used mainly to treat type 2 diabetes, testing as to whether it is useful for improving the long term prognosis for breast cancer patients. I expect to be asked to participate in it. I'm not sure about doing that-it sounds like I would really like to get the drug, and I'm not sure how I feel about taking the drug twice a day for 5 years without knowing if I've really gotten the goods or a sugar pill. This one will never be un-blinded; I would never know what I actually got. I don't feel good about that as I just think about it in advance here, but I suppose I may change my thinking as I learn more.
Today's symptoms:
Dizziness-every time I bent down today, I felt lightheaded upon standing up. Skipped yoga today because of it.
Itchiness-all over, not constant but consistent. Annoying.
Mouth pain-3/10, right side of tongue
Swallowing-pretty good.
Nose bleeds-diminishing; no major bleeding today!
Thursday, October 21, 2010
No More Mammograms/Today's symptom log
Today I went to see Dr. K for my follow up to the lumpectomy surgery done back in April. It's almost exactly 6 months since that surgery-time sure flies when you're having fun! Anyway, I had been scheduled for a mammogram today, but because I have decided on the bilateral mastectomy, we decided to hold on it. A permanent hold, I believe, as there is no plan to do them post surgery. I will continue to do self exams, and of course images will be made if anything suspicious arises, but otherwise, with no symptoms, we assume I'm healthy.
I am, but I'm tired the last few days. Came home from work today and took a nap. I think my body is so used to being jacked up on steroids on Thursdays that it didn't know how to handle a day-after-Wednesday with no Decadron to bolster my energy. The nap helped though, and I'm ready to go out and do a couple of massages this evening. Not the King Kong feeling I've had on Thursdays for the last 3 months, but quite refreshed.
The doctor told me that women who are more flexible in the pectoral region do better during rehab after surgery, so the next 6 weeks are boot camp for flexible pecs. I want that best-case-sceanario after each surgery (there are 3 involved with the mastectomy and reconstruction) and during the period while my expanders are being expanded. I intend to do some traveling during this period, and I plan to feel as great as possible during it as well.
I need to get back to keeping the symptom log, but won't get around to it tonight, so I'll include them here:
Neuropathy: still going on; the oncologist told me that all kinds of odd sensations that I've been experiencing lately are the result of Taxol-induced neuropathy. Today it's lots of itching, along with the occasionally needle-jabs of pain in my feet and hands. I've got a few rashy places particularly on my left hand, ring finger, that I'm thinking are also related, but not sure exactly how. 6/10
Swallowing: not too bad; haven't been taking many of my pills though. Burning tongue 4/10
Sleeping: mostly good; sometimes need to listen to my guided imagery on my Ipod to turn my head off, though.
Appetite: beginning to taper off. Now if I can just get this weight to start backing down again...
Looking forward to the weekend. It's right around the corner.
I am, but I'm tired the last few days. Came home from work today and took a nap. I think my body is so used to being jacked up on steroids on Thursdays that it didn't know how to handle a day-after-Wednesday with no Decadron to bolster my energy. The nap helped though, and I'm ready to go out and do a couple of massages this evening. Not the King Kong feeling I've had on Thursdays for the last 3 months, but quite refreshed.
The doctor told me that women who are more flexible in the pectoral region do better during rehab after surgery, so the next 6 weeks are boot camp for flexible pecs. I want that best-case-sceanario after each surgery (there are 3 involved with the mastectomy and reconstruction) and during the period while my expanders are being expanded. I intend to do some traveling during this period, and I plan to feel as great as possible during it as well.
I need to get back to keeping the symptom log, but won't get around to it tonight, so I'll include them here:
Neuropathy: still going on; the oncologist told me that all kinds of odd sensations that I've been experiencing lately are the result of Taxol-induced neuropathy. Today it's lots of itching, along with the occasionally needle-jabs of pain in my feet and hands. I've got a few rashy places particularly on my left hand, ring finger, that I'm thinking are also related, but not sure exactly how. 6/10
Swallowing: not too bad; haven't been taking many of my pills though. Burning tongue 4/10
Sleeping: mostly good; sometimes need to listen to my guided imagery on my Ipod to turn my head off, though.
Appetite: beginning to taper off. Now if I can just get this weight to start backing down again...
Looking forward to the weekend. It's right around the corner.
Sunday, October 17, 2010
Wonderful Weekend with the Folks
I'm having a great weekend; my folks have come to Nashville from L.A. to visit me and we have been enjoying each other's company for the past couple of days. Long walks, long talks, art exhibits and train rides, a real treat for me as I haven't seen them since my graduation a year and a half ago, and a triumph of energy as I've had the most active Friday and Saturday that I've had in a very long time. I hope I can keep it up tomorrow; I want to make it to yoga class in the afternoon, after brunch with the family before I kiss them goodbye and send them on their way to other parts of Tennessee.
It's been perfect weather, too, a rare occurance here in middle Tennessee where it is usually too hot, too cold, or too humid. We really lucked out for our train trip looking at the changing leaves and the silly train robbery skit. My friend Hunter has a coffee house in the little town where we stopped and walked around; it was great to see him, even if only for a minute-the shop was mobbed. I was tired when we got home though, crashed out for a while, then off to another yummy dinner tonight. Gotta get back on the mostly-veggie diet again tomorrow! Xena is moping today as she knows it's Saturday and I neglected my doggie duty of taking her out to a farmers market or park in our usual manner in order to spend the time usually spent with her with my parents. It's a people thing; she wouldn't understand.
I'm nervous about going back to a fuller schedule at work again. I think I'll be fine, heck, I'm not going to have a weekly poisoning session anymore, and it's only 2 additional patient hours, but this first week back I didn't realize that my schedule had reverted to my old schedule for Monday - Wednesdays (full days) and my newer schedule for Thursday and Friday (5 hour days) which for this one week will add 4 patient hours -
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Well, I crashed out yesterday in the middle of the blog. Today I was pretty whupped and took a long nap after we came home from brunch, the last family meal before the parents went on to Chattanooga. Spent the evening making soup. Aside from being so dang tired, I feel pretty good today. Wonder what the coming week will be like, with no chemical interruption. There goes that excuse....
As I celebrate another beautiful day of being on the planet, I am reminded to appreciate each nuance of life with the news that another dear friend has passed away suddenly. Years ago, after a series of losses of his crew, John Hartford told me repeatedly that you've gotta be tough to grow old; it's not for sissies. Indeed. Those we miss live on in our hearts but that is cold comfort when you just feel like sharing a story and having a laugh with them. I'm grateful to be here to mourn, sorry that mourning is in order. Farewell dear friend.
It's been perfect weather, too, a rare occurance here in middle Tennessee where it is usually too hot, too cold, or too humid. We really lucked out for our train trip looking at the changing leaves and the silly train robbery skit. My friend Hunter has a coffee house in the little town where we stopped and walked around; it was great to see him, even if only for a minute-the shop was mobbed. I was tired when we got home though, crashed out for a while, then off to another yummy dinner tonight. Gotta get back on the mostly-veggie diet again tomorrow! Xena is moping today as she knows it's Saturday and I neglected my doggie duty of taking her out to a farmers market or park in our usual manner in order to spend the time usually spent with her with my parents. It's a people thing; she wouldn't understand.
I'm nervous about going back to a fuller schedule at work again. I think I'll be fine, heck, I'm not going to have a weekly poisoning session anymore, and it's only 2 additional patient hours, but this first week back I didn't realize that my schedule had reverted to my old schedule for Monday - Wednesdays (full days) and my newer schedule for Thursday and Friday (5 hour days) which for this one week will add 4 patient hours -
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Well, I crashed out yesterday in the middle of the blog. Today I was pretty whupped and took a long nap after we came home from brunch, the last family meal before the parents went on to Chattanooga. Spent the evening making soup. Aside from being so dang tired, I feel pretty good today. Wonder what the coming week will be like, with no chemical interruption. There goes that excuse....
As I celebrate another beautiful day of being on the planet, I am reminded to appreciate each nuance of life with the news that another dear friend has passed away suddenly. Years ago, after a series of losses of his crew, John Hartford told me repeatedly that you've gotta be tough to grow old; it's not for sissies. Indeed. Those we miss live on in our hearts but that is cold comfort when you just feel like sharing a story and having a laugh with them. I'm grateful to be here to mourn, sorry that mourning is in order. Farewell dear friend.
Wednesday, October 13, 2010
Gratitude
I'll keep taking the Glutamine; apparently the side effects of the Taxol are partially delayed and long lasting, perhaps taking the next couple of years to fully wear off. The pain I've noticed along the border of my left breast, the heart palpitations and dizziness over the last couple of weeks, all of these are deemed by my oncologist to be in response to the neurotoxic factor of the Taxol of which I've now had 12 treatments. Hopefully, continued Glutamine consumption will lead to continued nerve and digestive support.
My sister and others have warned me that there is an inevitable let down after chemo is through. Suddenly, you're done, with checkups every few months, but none of the intensive attention that go on during the treatment. And you wonder and you worry about every new ache or pain and you get the blues. I will try to steel myself for this, and to consider myself forearmed by the forewarning. Besides, I have a followup appointment with my breast surgeon a week from tomorrow, and surgery to schedule and then the surgery itself and rehab afterward, Christmas/New Years off, and frequent visits to the doctor for expansions as I transition from the expanders to being large enough to accommodate the implants. I expect that if I'm going to get the "after cancer blues" they are going to hit me after I'm done rebuilding my chassis.
Today is a beautiful day. I'm excited to be alive in it.
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