Today, after the crappy week I've had and especially after the stressful last 24 hours, after six infusions (and theoretically no more...fingers crossed), my eyelashes and eyebrows almost totally fell out. Eyelashes were thinning, but just since yesterday, they are probably 80% gone and eyebrows fell out when I washed my face just now.
I really don't care, but I was hopeful that I'd not lose them all.
Do I break out the eyebrow pencil? Probably not. If I screw up, it'll look even worse.
I can't even begin to imagine who those who are vain handle this.
Thursday, November 26, 2009
Can't See the Forest For the Trees
It all makes sense now I I know my arm pain is due to Tennis Elbow. I'd been so focused on it having something to do with the chemo or port that I'd overlooked why, were it TE, it would go in cycles with my treatment. I've had problems with TE in the past and I just self treated. Tynan, the beast baby, started it when I had to lift his lard butt in and out of his car seat, and then it flared up again a few years ago with that powerless steering in the old van.
It seemed odd that something that would be caused by chemo would be better after my infusions. Being better before would make sense, but the pain goes away totally within a day or so of my infusions....
DUH....I'm so jacked on steroids I'm surprised I can even feel anything. How is TE treated? One way is through steroids.
Well, after three days and a huge bag infused yesterday, it's clear why I have no pain today.
Amazing things, steroids. This is one silver lining I don't mind. I just wish I could figure out a silver lining for swollen face, irrational food cravings, and lack of sleep.
It seemed odd that something that would be caused by chemo would be better after my infusions. Being better before would make sense, but the pain goes away totally within a day or so of my infusions....
DUH....I'm so jacked on steroids I'm surprised I can even feel anything. How is TE treated? One way is through steroids.
Well, after three days and a huge bag infused yesterday, it's clear why I have no pain today.
Amazing things, steroids. This is one silver lining I don't mind. I just wish I could figure out a silver lining for swollen face, irrational food cravings, and lack of sleep.
Wednesday, November 25, 2009
Speechless...
Wow, doctors certainly have strong personalities, especially women doctors who have risen to the top of more traditionally masculine fields.
My Onco, who I really feel is in my court, called me into her office today before chemo, asking me why my surgeon called her at home last night "freaking out" and saying that "the chemo hasn't done anything to my tumor. The onco and I know this is bullshit. The surgeon didn't even see me until after my second round of chemo, so she has no clue although she does have my films. I don't know what her deal is and that's basically what Dr. Mo said today.
Meanwhile, I've already written about how the surgeon and the plastic surgeon are disagreeing about reconstruction options. As an aside, I'm becoming more and more convinced that flap surgery is not an option, at least not in the near future. Maybe in a year or so down the road. I'm just not willing to sacrifice weeks and maybe months of time when I could start to feel good and work on regaining my health to some boobs. I'm sick of feeling sick.
So, the surgeon called me in to get an order for a breast MRI and wants it "asap." OK, I'll break the rules in chemo and call and schedule that today. Then, Dr. Mo says, "Well, that would be stupid, let's give this round of chemo a chance to work...there is a little lump there, but it could be dead cells or it could be gone after this round...regardless, Anita is nuts that the chemo hasn't been working." So she then says, "Let's get this MRI scheduled for 10-14 days after this round of chemo to give this round the optimal chance to work." I reminder her Anita, the surgeon, wants it done ASAP and Dr. Mo responds, "Well, *I'm* the primary here and I say 10 days, so I'll have my people schedule it and I'll tell Anita that's how it's going to be. Leave that up to me."
Yikes.
Then she drops the big bomb and almost made me cry. If this "little" lump is full of cancer, surgery will be delayed and I'll have at least another round of chemo. Otherwise, if they do the surgery and find active tumor, I'll have to do another full effing 18 week course of chemo.
Now, I'm feeling more vulnerable than before.
First of all, I thought we had a plan. Secondly, I'd been led to believe everything was going well. Third, it's not cool to have your doctors spatting over you. Fourth, I thought I was getting some control over my life. I can actually make plans for surgery. I like making plans. I've never been good at following them through, but I'm good at making them. Fourth, for the first time in months I heard the words, "Your best chance of survival..."
No, really, survival is my only option, yet, I can really begin to understand the whole concept of "quality of life" right now, staring another full course of chemo in the face. Possibly 18 more weeks of this shit, after surgery? It'd take more than a low dose of Lexapro to get me through. It might take more than a low dose of Lexapro to get me through the next two weeks....
Another full round of chemo will leave me positively brain dead. Louis is out of work, I'll be too dumb to ever work again if I have to go through 7 more treatments of chemo. I can barely function now. It would be interesting to know how much my IQ has dropped.
If I didn't have kids, I might consider the option of dying smart as opposed to living dumb and sick. This has been hard enough on the kids already. The only positive is that I can't beat a single member of my family at any games at this point...not even games of chance, which in the grand scheme doesn't bode well.
My Onco, who I really feel is in my court, called me into her office today before chemo, asking me why my surgeon called her at home last night "freaking out" and saying that "the chemo hasn't done anything to my tumor. The onco and I know this is bullshit. The surgeon didn't even see me until after my second round of chemo, so she has no clue although she does have my films. I don't know what her deal is and that's basically what Dr. Mo said today.
Meanwhile, I've already written about how the surgeon and the plastic surgeon are disagreeing about reconstruction options. As an aside, I'm becoming more and more convinced that flap surgery is not an option, at least not in the near future. Maybe in a year or so down the road. I'm just not willing to sacrifice weeks and maybe months of time when I could start to feel good and work on regaining my health to some boobs. I'm sick of feeling sick.
So, the surgeon called me in to get an order for a breast MRI and wants it "asap." OK, I'll break the rules in chemo and call and schedule that today. Then, Dr. Mo says, "Well, that would be stupid, let's give this round of chemo a chance to work...there is a little lump there, but it could be dead cells or it could be gone after this round...regardless, Anita is nuts that the chemo hasn't been working." So she then says, "Let's get this MRI scheduled for 10-14 days after this round of chemo to give this round the optimal chance to work." I reminder her Anita, the surgeon, wants it done ASAP and Dr. Mo responds, "Well, *I'm* the primary here and I say 10 days, so I'll have my people schedule it and I'll tell Anita that's how it's going to be. Leave that up to me."
Yikes.
Then she drops the big bomb and almost made me cry. If this "little" lump is full of cancer, surgery will be delayed and I'll have at least another round of chemo. Otherwise, if they do the surgery and find active tumor, I'll have to do another full effing 18 week course of chemo.
Now, I'm feeling more vulnerable than before.
First of all, I thought we had a plan. Secondly, I'd been led to believe everything was going well. Third, it's not cool to have your doctors spatting over you. Fourth, I thought I was getting some control over my life. I can actually make plans for surgery. I like making plans. I've never been good at following them through, but I'm good at making them. Fourth, for the first time in months I heard the words, "Your best chance of survival..."
No, really, survival is my only option, yet, I can really begin to understand the whole concept of "quality of life" right now, staring another full course of chemo in the face. Possibly 18 more weeks of this shit, after surgery? It'd take more than a low dose of Lexapro to get me through. It might take more than a low dose of Lexapro to get me through the next two weeks....
Another full round of chemo will leave me positively brain dead. Louis is out of work, I'll be too dumb to ever work again if I have to go through 7 more treatments of chemo. I can barely function now. It would be interesting to know how much my IQ has dropped.
If I didn't have kids, I might consider the option of dying smart as opposed to living dumb and sick. This has been hard enough on the kids already. The only positive is that I can't beat a single member of my family at any games at this point...not even games of chance, which in the grand scheme doesn't bode well.
Tuesday, November 24, 2009
One mystery solved
...perhaps.
I saw the nurse practitioner with my family doctor today, and all I have to say is "Thank the goddess for general practitioners!"
I went through my spiel about my forearm, how it seems to be related somehow to my chemo cycle but isn't listed as a side effect (well, muscle and joint pain is, as is swelling, but not limited to one particular area, like only a forearm. The breast surgeon, to her benefit, did say that she believed it was related to the chemo and that there are lots of unlisted side effects, especially with taxotere. She had no other suggestions, though.
Turns out it's tennis elbow, made worse by the chemo (we figure that because it gets better and worse with my chemo cycle). I've had issues in the past with my elbow more so than my forearm: when Tynan was 30 lbs and 5 months old and I used my right arm to lift him into and out of his car seat, hold him to nurse him, and carry him; when we owned that big, old, maroon van and the power steering was out. But the pain never radiated down my arm or affected my muscle.
Bad news, depending which surgery option arises, if I don't have the breast on the right side removed, this will be the arm I use for everything and, therefore, may end up needing to waste physical therapy visits on it.
Good news is I have a double mastectomy, I'll have quite some time to rest it. That's what I'm hoping for.
At least I know what it is and have some ideas for relieving the pain.
I saw the nurse practitioner with my family doctor today, and all I have to say is "Thank the goddess for general practitioners!"
I went through my spiel about my forearm, how it seems to be related somehow to my chemo cycle but isn't listed as a side effect (well, muscle and joint pain is, as is swelling, but not limited to one particular area, like only a forearm. The breast surgeon, to her benefit, did say that she believed it was related to the chemo and that there are lots of unlisted side effects, especially with taxotere. She had no other suggestions, though.
Turns out it's tennis elbow, made worse by the chemo (we figure that because it gets better and worse with my chemo cycle). I've had issues in the past with my elbow more so than my forearm: when Tynan was 30 lbs and 5 months old and I used my right arm to lift him into and out of his car seat, hold him to nurse him, and carry him; when we owned that big, old, maroon van and the power steering was out. But the pain never radiated down my arm or affected my muscle.
Bad news, depending which surgery option arises, if I don't have the breast on the right side removed, this will be the arm I use for everything and, therefore, may end up needing to waste physical therapy visits on it.
Good news is I have a double mastectomy, I'll have quite some time to rest it. That's what I'm hoping for.
At least I know what it is and have some ideas for relieving the pain.
Monday, November 23, 2009
Just when you think you have a plan...
...it all goes to shit.
I thought that we had this surgery thing worked out. I thought the plastic surgeon and I had a plan.
Today, I found out that, no indeed, there is no plan. Seems like the plastic surgeon and the breast surgeon have been having communication difficulties. Seems like no one has really taken time to explain to me the whole process for radiation. Seems like nothing can be fully decided until I meet with the radiation oncologists next Friday. Then, depending on what he says, I can re-meet with the plastic surgeon, and then the surgeon will be happy to do whatever I want her to do.
Need I mention each of these appointments costs me $35, which isn't much until you add up all the $35 appointments I've had in the last few months. About $525 worth. That's like the annual soccer fees for 1.5 children or something.
So, here are my surgery options:
Option A (what I had thought was the plan):
* bilateral mastectomy, immediate reconstruction with spacers, followed by radiation and then implants at a later date. The downside to this I thought, was that there is always a chance the radiation will damage the one spacer and it would have to be removed, thereby ruining my chance to have an implant on that side. There is also a chance that the radiation would cause the skin to contract and I'd have to have that side "fleshed out" with my own tissues, which involves micro surgery and a longer healing time, either soon or sometime in the future. If I "lose" the spacer, my only option for reconstruction is via my own tissue, and that would involve both abdominal surgery and removal of tissue from my back, then more surgeries to repair the mutilation of those areas as well as a week long hospital stay and 6-8, maybe 10 or more, weeks of recovery at home. Big time, serious, painful, significant crap, not to mention potential for abdominal problems down the line and other crap I don't want to deal with.
Option B (what the surgeon thinks the radiation Onco will advocate and what she advocates):
*complete mastectomy of the affected side, no spacer, immediate radiation, 6 weeks after radiation is finished prophylactic mastectomy of the other side with immediate reconstruction via my own tissue (see above for issues with that) on affected side and implant in my other side. In clothing I'd look balanced, but in reality, I'd have one breast that is "natural" and one that defies nature. One that would age and sag and one that wouldn't. That totally doesn't appeal to me. I have a thing about symmetry.
Option C (which no one is talking about but me and Amy):
* no reconstruction on either side and just going breastfree. I don't think I'd wear a prosthetic. I've never heard a single good thing about them.
Of course, option C is always lurking there because there is a pretty high chance that the reconstruction with my own tissue won't work and the tissue will die or part of it will die and I'll be left mutilated worse than before.
None of these options except for the first, initial plan, appeals to me. Two major surgeries isn't appealing, two different types of boobs isn't appealing, I thought I'd decided against the autologous tissue procedure. I've not read one single good thing about it. Nothing appealing there at all as far as I'm concerned. This whole thing could eat up months and months of my life and cause me lots and lots of pain, scarring, and more surgery in the future to fix the issues arising from the whole procedure....
At the same time, mutilation for the sake of boobies seems to go against some of the deepest held philosophies I have.
I haven't felt this overwhelmed since my initial diagnosis.
I thought that we had this surgery thing worked out. I thought the plastic surgeon and I had a plan.
Today, I found out that, no indeed, there is no plan. Seems like the plastic surgeon and the breast surgeon have been having communication difficulties. Seems like no one has really taken time to explain to me the whole process for radiation. Seems like nothing can be fully decided until I meet with the radiation oncologists next Friday. Then, depending on what he says, I can re-meet with the plastic surgeon, and then the surgeon will be happy to do whatever I want her to do.
Need I mention each of these appointments costs me $35, which isn't much until you add up all the $35 appointments I've had in the last few months. About $525 worth. That's like the annual soccer fees for 1.5 children or something.
So, here are my surgery options:
Option A (what I had thought was the plan):
* bilateral mastectomy, immediate reconstruction with spacers, followed by radiation and then implants at a later date. The downside to this I thought, was that there is always a chance the radiation will damage the one spacer and it would have to be removed, thereby ruining my chance to have an implant on that side. There is also a chance that the radiation would cause the skin to contract and I'd have to have that side "fleshed out" with my own tissues, which involves micro surgery and a longer healing time, either soon or sometime in the future. If I "lose" the spacer, my only option for reconstruction is via my own tissue, and that would involve both abdominal surgery and removal of tissue from my back, then more surgeries to repair the mutilation of those areas as well as a week long hospital stay and 6-8, maybe 10 or more, weeks of recovery at home. Big time, serious, painful, significant crap, not to mention potential for abdominal problems down the line and other crap I don't want to deal with.
Option B (what the surgeon thinks the radiation Onco will advocate and what she advocates):
*complete mastectomy of the affected side, no spacer, immediate radiation, 6 weeks after radiation is finished prophylactic mastectomy of the other side with immediate reconstruction via my own tissue (see above for issues with that) on affected side and implant in my other side. In clothing I'd look balanced, but in reality, I'd have one breast that is "natural" and one that defies nature. One that would age and sag and one that wouldn't. That totally doesn't appeal to me. I have a thing about symmetry.
Option C (which no one is talking about but me and Amy):
* no reconstruction on either side and just going breastfree. I don't think I'd wear a prosthetic. I've never heard a single good thing about them.
Of course, option C is always lurking there because there is a pretty high chance that the reconstruction with my own tissue won't work and the tissue will die or part of it will die and I'll be left mutilated worse than before.
None of these options except for the first, initial plan, appeals to me. Two major surgeries isn't appealing, two different types of boobs isn't appealing, I thought I'd decided against the autologous tissue procedure. I've not read one single good thing about it. Nothing appealing there at all as far as I'm concerned. This whole thing could eat up months and months of my life and cause me lots and lots of pain, scarring, and more surgery in the future to fix the issues arising from the whole procedure....
At the same time, mutilation for the sake of boobies seems to go against some of the deepest held philosophies I have.
I haven't felt this overwhelmed since my initial diagnosis.
Sunday, November 22, 2009
Yet another unwanted gift
Chemo-brain.
I mentioned on FB yesterday that assembling Thanksgiving Dinner proved a challenge with chemobrain. Quite seriously, it was a joke. It wasn't the whole "having it all finish at the same time" issue so many people have. That has never been an issue for me. I can time things quite well. Yet, the little things just kept slipping my mind or simply never crossed my mind. Quite basic things that should be second nature by this point in my life. For instance, I rinsed the turkey in the sink, went to grab the roasting pan, and realized there was no roasting pan. After I sent my husband to the garage to retrieve the roasting pan, I realized I had bought a disposable one. Then I couldn't remember where it was. Turns out, it was still in the van. I put the table clot on the table without the pad underneath. I forgot to cook the brussels sprouts. I didn't even buy the cauliflower for mashed cauliflower. I never did find the serving platter. I actually spent the better part of a minute staring at the turkey, wondering how to get it out of the roasting pan before I remembered my pointy lifting thingies. I never did manage to get around to locating the electric knife for carving. Good thing teenage boys don't care. At one point, I remember just walking in circles in the kitchen not even knowing what I needed to do.
Until fairly recently, chemobrain was only officially recognized by those who suffer from it. I find it interesting that those who have breast, ovarian, and prostate cancers report the highest incidence and most severe long term problems (probably not counting those with brain cancer). Since 2/3 of those people are women and since men are less likely to complain about something like being unable to do simple tasks like remember their dog's name, I'm sure for years the medical community chalked it up to just another "female complaint." Sexist thought is still highly prevalent in the medical community after all.
However, now there is a growing understanding of chemobrain. And it seems both unfair and otherwise pissy that it can be one of the longest lasting side effects. As if the humiliation of cancer isn't already enough, 30% or more of us get and stay stupid for a year or longer. I'm not sure I can get any more stupid. The one thing I worry the most about my last round of chemo is losing even more cognitive function.
Having a difficult time with names under normal circumstance, I'm absolutely worthless when it comes to names now. There are still students in my classes whose names I don't know. Don't even ask me to tell which Nick is which. On top of that, there are at least two kids in each class who I still can't get a name to face thing going. Even worse, I think, is that even if I can put a face to a name on a sheet of paper, I can never recall the names in class. There's a handful in each class, and that's it. So, I call on those students over and over and over and over. Not a "best practice in teaching," that's for sure.
Short term memory is the absolute worst. For instance, I just looked at this list of symptoms and flipping back to write about it here, I forgot the list. Given what is on the list and given that I experience every single symptom, you'd think I could remember some of them. All I could remember was "forgetfulness," which isn't even on the list!
Tasks do take longer and I find the most basic things mentally exhausting, which contributes to physical fatigue. I totally forget conversations I've had, sometimes within moments of having them. Worse yet is the inability to remember things from the past. It's like my past is being wiped away. As if my brain is a dry erase board that is being wiped clean. I'm totally stymied by simple mental math to the point where my nine year old can not just beat me, but do problems I can't even begin to do. It as if I forget what I'm solving in the middle of the problem. Grading seems hugely insurmountable. I lose my train of thought in the middle of an essay. I forget what I'd intended to say in a comment while writing the comment. By the end of the essay, I can't remember whose essay it is sometimes! It is taking me nearly as long to grade essays as it did when I first started teaching. Spelling has never been my forte, but now, I'm atrocious at it. Words don't look right, my fingers don't move right, and I'm clueless. Sure, I have spell check, but still, I should be able to spell "embarrassed," but I couldn't on the first try earlier today.
This cognitive impairment is clearly affecting my quality of life. There are certain books I'd like to read, but really just can't. I'm not talking anything super-duper challenging here. I'm talking The Time Traveler's Wife. I'm talking Three Cups of Tea. I have difficulty following certain television shows. Again, I don't mean Nova. I'm talking NCIS and Law and Order. I can watch Monk but seem to lose my train of thought with (shit, I've forgotten the name of the show....must go google it)...White Collar. Even worse is my inability to hold a thought in my head. Just now, my husband left to run to WalMart. Right before he announced he was leaving, I had been thinking of something we needed. By the time he left, I'd forgotten. I still can't remember what it was.
One of the areas chemobrain is most obvious is my blog. It's embarrassing how I wander off topic between the title of a post and the end. For evidence, see my most previous entry. What is that mess? I had something all thought out about non-harm and the military, but it disappeared as I started to write and I never was able to get it together again.
So, why is this post titled "Yet Another Unwanted Gift?" I'd almost forgotten. I chose that title because, in my search for silver lining (and I'm damn tired of that search), I suppose I am gaining perspective and understanding for those, especially my students, who struggle cognitively. Once again, I think I had a pretty good handle on that, though. I didn't need to qualify for special ed myself to empathize with my students with learning disabilities.
Meanwhile, I just get dumber by the day.
I mentioned on FB yesterday that assembling Thanksgiving Dinner proved a challenge with chemobrain. Quite seriously, it was a joke. It wasn't the whole "having it all finish at the same time" issue so many people have. That has never been an issue for me. I can time things quite well. Yet, the little things just kept slipping my mind or simply never crossed my mind. Quite basic things that should be second nature by this point in my life. For instance, I rinsed the turkey in the sink, went to grab the roasting pan, and realized there was no roasting pan. After I sent my husband to the garage to retrieve the roasting pan, I realized I had bought a disposable one. Then I couldn't remember where it was. Turns out, it was still in the van. I put the table clot on the table without the pad underneath. I forgot to cook the brussels sprouts. I didn't even buy the cauliflower for mashed cauliflower. I never did find the serving platter. I actually spent the better part of a minute staring at the turkey, wondering how to get it out of the roasting pan before I remembered my pointy lifting thingies. I never did manage to get around to locating the electric knife for carving. Good thing teenage boys don't care. At one point, I remember just walking in circles in the kitchen not even knowing what I needed to do.
Until fairly recently, chemobrain was only officially recognized by those who suffer from it. I find it interesting that those who have breast, ovarian, and prostate cancers report the highest incidence and most severe long term problems (probably not counting those with brain cancer). Since 2/3 of those people are women and since men are less likely to complain about something like being unable to do simple tasks like remember their dog's name, I'm sure for years the medical community chalked it up to just another "female complaint." Sexist thought is still highly prevalent in the medical community after all.
However, now there is a growing understanding of chemobrain. And it seems both unfair and otherwise pissy that it can be one of the longest lasting side effects. As if the humiliation of cancer isn't already enough, 30% or more of us get and stay stupid for a year or longer. I'm not sure I can get any more stupid. The one thing I worry the most about my last round of chemo is losing even more cognitive function.
Having a difficult time with names under normal circumstance, I'm absolutely worthless when it comes to names now. There are still students in my classes whose names I don't know. Don't even ask me to tell which Nick is which. On top of that, there are at least two kids in each class who I still can't get a name to face thing going. Even worse, I think, is that even if I can put a face to a name on a sheet of paper, I can never recall the names in class. There's a handful in each class, and that's it. So, I call on those students over and over and over and over. Not a "best practice in teaching," that's for sure.
Short term memory is the absolute worst. For instance, I just looked at this list of symptoms and flipping back to write about it here, I forgot the list. Given what is on the list and given that I experience every single symptom, you'd think I could remember some of them. All I could remember was "forgetfulness," which isn't even on the list!
Tasks do take longer and I find the most basic things mentally exhausting, which contributes to physical fatigue. I totally forget conversations I've had, sometimes within moments of having them. Worse yet is the inability to remember things from the past. It's like my past is being wiped away. As if my brain is a dry erase board that is being wiped clean. I'm totally stymied by simple mental math to the point where my nine year old can not just beat me, but do problems I can't even begin to do. It as if I forget what I'm solving in the middle of the problem. Grading seems hugely insurmountable. I lose my train of thought in the middle of an essay. I forget what I'd intended to say in a comment while writing the comment. By the end of the essay, I can't remember whose essay it is sometimes! It is taking me nearly as long to grade essays as it did when I first started teaching. Spelling has never been my forte, but now, I'm atrocious at it. Words don't look right, my fingers don't move right, and I'm clueless. Sure, I have spell check, but still, I should be able to spell "embarrassed," but I couldn't on the first try earlier today.
This cognitive impairment is clearly affecting my quality of life. There are certain books I'd like to read, but really just can't. I'm not talking anything super-duper challenging here. I'm talking The Time Traveler's Wife. I'm talking Three Cups of Tea. I have difficulty following certain television shows. Again, I don't mean Nova. I'm talking NCIS and Law and Order. I can watch Monk but seem to lose my train of thought with (shit, I've forgotten the name of the show....must go google it)...White Collar. Even worse is my inability to hold a thought in my head. Just now, my husband left to run to WalMart. Right before he announced he was leaving, I had been thinking of something we needed. By the time he left, I'd forgotten. I still can't remember what it was.
One of the areas chemobrain is most obvious is my blog. It's embarrassing how I wander off topic between the title of a post and the end. For evidence, see my most previous entry. What is that mess? I had something all thought out about non-harm and the military, but it disappeared as I started to write and I never was able to get it together again.
So, why is this post titled "Yet Another Unwanted Gift?" I'd almost forgotten. I chose that title because, in my search for silver lining (and I'm damn tired of that search), I suppose I am gaining perspective and understanding for those, especially my students, who struggle cognitively. Once again, I think I had a pretty good handle on that, though. I didn't need to qualify for special ed myself to empathize with my students with learning disabilities.
Meanwhile, I just get dumber by the day.
Saturday, November 21, 2009
(long and rambling) Ahimsa and Veteran's Day
Veteran's Day was my last yoga class at Stillwaters with Kathie. I'm forever thankful to Amy for turning me on to Kathie and this practice. It has been quite transformative. I will go back after surgery.
On Veteran's Day, we discussed the precept of Ahimsa, which is the practice of non-injury. That seemed like a very appropriate topic for Veteran's day. Without realizing it, ahimsa is something I've been exploring for awhile in my efforts to eliminate stress as much as possible and to focus only on what I must. Ahimsa means non-injury in thought, word, and deed. In my reading, I've discovered that, indeed, I have, unintentionally, been attempting this this semester. Early on, shortly after my diagnosis and when I was being encouraged to take the whole semester (and even the year) off, I decided that I could use the energy in my students in a positive way; therefore, I decided to teach.
Frankly, I've been teaching for quite a while. And there have been semesters (and probably times in each semester) when I've been discouraged, negative, and really quite down on my students. In general, though, I really do enjoy being with them. I derive the same type of good energy from my teens and their friends these days, hence the fact that even on chemo-crash weekends there are usually extra teens around here.
So, in August, I made a conscious decision to be positive about teaching and my students this semester. I vowed to not take their foibles personally and to view them as paths to student success. On the surface, perhaps not much has changed. However, I can honestly say that I've had a lot more patience and derived a lot more enjoyment from those individuals. Viewing them as individuals has also made a difference. But first I had to change my actions and approach, which led to a change in my words and tone, and finally in my thoughts.
In changing my thoughts, I've found it even easier to change my words and tone with my students. All of which has made an even larger change in my actions...all leading to a HUGE reduction in my personal stress level. Sure, not all of them are passing, but I no longer find that frustrating. And I'm incredibly pleased with the progress they've all made. I don't even know if I can put the change into words. I guess it is similar to what I've been telling my children forever: it's about YOUR reaction not HIS action. In taking control of my thoughts and words, I've taken control of my actions, making it easier to develop and enforce boundaries as well as finding it easier to allow for flexibility.
I will admit that I'm a good teacher. But I think I'm jacking it up to a whole new level now. It's not just about getting my students to pass, it's helping them develop into better people as well as better thinkers, students and writers. I want them to leave my class believing that someone at BGSU cares about them as individuals and humans and not just PID numbers and tuition checks or empty vessels waiting to be filled with knowledge and skills. And that's actually quite liberating to me.
What does this have to do with ahimsa? In retrospect, I know that I have harmed individual students, by engendering in them negative feelings, anger, frustration (negative frustration--frustration can also be used positively), feelings of hopelessness and helplessness. This is not to say that the student who emailed me yesterday, basically telling me he is dropping out of BGSU and fears he will fail my class, isn't frustrated and angry, but my role in that is minimal. A year ago, my underlying approach would have been different. I'd have, in essence, looked upon the whole situation differently. And, for the first time in a long time...maybe in forever...I'm not upset, frustrated, or stressed by the students not doing well. Yet, at this point in the semester more of them are doing well than in past semesters. Attendance in two of my three classes is booming. If I leaved "things" tiny, they don't expand into something big which then becomes a negative feedback loop.
But back to ahimsa...one part, it seems to me, of non-injury is also the thoughtful pause. If controlling my thoughts is mindfulness, then controlling my words would be restraint. Clearly, anyone who knows me knows that this is one of my utmost weaknesses. I shoot off my mouth, thoughtlessly, numerous times a day. Chemo-brain hasn't helped much in this regard. Heck, half the time by the time something is out of my mouth, I've forgotten what I've even said, let alone what prompted me to say it. It's like there is a huge disconnect between my brain and my mouth. Regardless, I haven't mastered control of my mouth, but with a less negative thought-life, my mouth has been less harmful to others, I think.
I've just made a conscious decision to not get my knickers in a twist, especially about things over which I have no control. Believe me, this has made the many, many hours I've spent in waiting rooms recently much more tolerable. I'm learning to enjoy the quiet solitude of public spaces, to find a centeredness in clearing my mind and just being, even if it is being in a waiting or examining room. If I don't let it get to me, I don't engage in violent or negative thinking. There's nothing I can do about it, any way. If I don't get worked up, then I look at the nurses, technicians, and doctors with more compassion.
The world would be a much saner place if we could all work on this practice. Imagine if the world leaders would just practice "being" and not be in constant, restless pursuit of exerting control over others?
Better yet, what if we all learned to be practice non-harm with ourselves? We can't truly not harm others if we continually show our selfs a lack of respect. No one has been in an waiting room of any sort without seeing some treacly magazine article about "taking care of yourself" by eating right and exercising, blah blah blah. Um hum...whatever. Sure we all know that, and some of us practice it. But what is our excuse for not doing so? Usually lack of time, over commitment, business, other responsibilities. I'm starting to realize that in over-extending myself, in not having clear boundaries that protect ME and my family, I'm committing self-harm, which leads to harming others. How many times, because I'm stressed out by schoolwork, have I pushed one of my children away? Harm done twice. Stress to myself, abandonment of my child. Or, how often have I lost sleep because of procrastination, which then harms me, lowers my ability to practice restraint, and therefore permits me to more easily use my mouth to harm others? How can I teach my boys to treat women well if the main woman in their life doesn't treat herself well?
Yet, our culture makes it really difficult to learn to practice non-harm to ourselves because non-harm does not necessarily mean being self-indulgent. It might mean pampering oneself at times, but if doing so harms others--either in commission or omission--then the purpose is self defeating, I think. I could be full of crap, but if I use family, community, or environmental resources in a way that makes me feel good but is unwise or harmful, then I'm being self-indulgent, not taking care of myself. It's quite a balancing act. I think many people in nurturing roles (teachers, parents, nurses, doctors, social workers, etc) tend to find striking this balance quite difficult. But if we look at ourselves gently, I think that we'd all agree that perhaps it would be easier to take care of ourselves if we'd think of doing so as practicing non-harm
Yesterday, my husband found out his position at the university was eliminated. What that means in the short term is still unclear. It's complicated by the fact that BGSU outsourced food service, forced my husband to take a job in food service when his last position was eliminated in March, and the new company would never have accepted him and isn't required to keep him since they are not part of the "state system." So, he's been tossed back to BGSU and is, sort of, in the same position he was in in March...looking for a bump, which probably doesn't exist at this point. So, at least he wasn't fired. He might be able to stay on Family Medical Leave...none of which is here nor there...but seven months ago, I'd have been much more worked up, much more upset, much more stressed than I am right now. You'd think that I'd be beside myself...and don't get me wrong, I will be at some point. At some point, I'm sure I'll break down and totally lose it.
But there isn't much I can do about any of it. It is what it is. If I take my focus off getting well, if I let stress negatively affect my health, physical and mental, I'll be engaging in self-harm. I can't control what BGSU does. I can control what I do. That's the best I can do. BGSU isn't worth the negative energy that I'm tempted to give it right now. Instead, I try to just do ujjaya pranayama...breathe in, breathe out, in, out, in, out....
And try not to kill someone.
See, I'm still the old Dawn....just more contemplative these days.
On Veteran's Day, we discussed the precept of Ahimsa, which is the practice of non-injury. That seemed like a very appropriate topic for Veteran's day. Without realizing it, ahimsa is something I've been exploring for awhile in my efforts to eliminate stress as much as possible and to focus only on what I must. Ahimsa means non-injury in thought, word, and deed. In my reading, I've discovered that, indeed, I have, unintentionally, been attempting this this semester. Early on, shortly after my diagnosis and when I was being encouraged to take the whole semester (and even the year) off, I decided that I could use the energy in my students in a positive way; therefore, I decided to teach.
Frankly, I've been teaching for quite a while. And there have been semesters (and probably times in each semester) when I've been discouraged, negative, and really quite down on my students. In general, though, I really do enjoy being with them. I derive the same type of good energy from my teens and their friends these days, hence the fact that even on chemo-crash weekends there are usually extra teens around here.
So, in August, I made a conscious decision to be positive about teaching and my students this semester. I vowed to not take their foibles personally and to view them as paths to student success. On the surface, perhaps not much has changed. However, I can honestly say that I've had a lot more patience and derived a lot more enjoyment from those individuals. Viewing them as individuals has also made a difference. But first I had to change my actions and approach, which led to a change in my words and tone, and finally in my thoughts.
In changing my thoughts, I've found it even easier to change my words and tone with my students. All of which has made an even larger change in my actions...all leading to a HUGE reduction in my personal stress level. Sure, not all of them are passing, but I no longer find that frustrating. And I'm incredibly pleased with the progress they've all made. I don't even know if I can put the change into words. I guess it is similar to what I've been telling my children forever: it's about YOUR reaction not HIS action. In taking control of my thoughts and words, I've taken control of my actions, making it easier to develop and enforce boundaries as well as finding it easier to allow for flexibility.
I will admit that I'm a good teacher. But I think I'm jacking it up to a whole new level now. It's not just about getting my students to pass, it's helping them develop into better people as well as better thinkers, students and writers. I want them to leave my class believing that someone at BGSU cares about them as individuals and humans and not just PID numbers and tuition checks or empty vessels waiting to be filled with knowledge and skills. And that's actually quite liberating to me.
What does this have to do with ahimsa? In retrospect, I know that I have harmed individual students, by engendering in them negative feelings, anger, frustration (negative frustration--frustration can also be used positively), feelings of hopelessness and helplessness. This is not to say that the student who emailed me yesterday, basically telling me he is dropping out of BGSU and fears he will fail my class, isn't frustrated and angry, but my role in that is minimal. A year ago, my underlying approach would have been different. I'd have, in essence, looked upon the whole situation differently. And, for the first time in a long time...maybe in forever...I'm not upset, frustrated, or stressed by the students not doing well. Yet, at this point in the semester more of them are doing well than in past semesters. Attendance in two of my three classes is booming. If I leaved "things" tiny, they don't expand into something big which then becomes a negative feedback loop.
But back to ahimsa...one part, it seems to me, of non-injury is also the thoughtful pause. If controlling my thoughts is mindfulness, then controlling my words would be restraint. Clearly, anyone who knows me knows that this is one of my utmost weaknesses. I shoot off my mouth, thoughtlessly, numerous times a day. Chemo-brain hasn't helped much in this regard. Heck, half the time by the time something is out of my mouth, I've forgotten what I've even said, let alone what prompted me to say it. It's like there is a huge disconnect between my brain and my mouth. Regardless, I haven't mastered control of my mouth, but with a less negative thought-life, my mouth has been less harmful to others, I think.
I've just made a conscious decision to not get my knickers in a twist, especially about things over which I have no control. Believe me, this has made the many, many hours I've spent in waiting rooms recently much more tolerable. I'm learning to enjoy the quiet solitude of public spaces, to find a centeredness in clearing my mind and just being, even if it is being in a waiting or examining room. If I don't let it get to me, I don't engage in violent or negative thinking. There's nothing I can do about it, any way. If I don't get worked up, then I look at the nurses, technicians, and doctors with more compassion.
The world would be a much saner place if we could all work on this practice. Imagine if the world leaders would just practice "being" and not be in constant, restless pursuit of exerting control over others?
Better yet, what if we all learned to be practice non-harm with ourselves? We can't truly not harm others if we continually show our selfs a lack of respect. No one has been in an waiting room of any sort without seeing some treacly magazine article about "taking care of yourself" by eating right and exercising, blah blah blah. Um hum...whatever. Sure we all know that, and some of us practice it. But what is our excuse for not doing so? Usually lack of time, over commitment, business, other responsibilities. I'm starting to realize that in over-extending myself, in not having clear boundaries that protect ME and my family, I'm committing self-harm, which leads to harming others. How many times, because I'm stressed out by schoolwork, have I pushed one of my children away? Harm done twice. Stress to myself, abandonment of my child. Or, how often have I lost sleep because of procrastination, which then harms me, lowers my ability to practice restraint, and therefore permits me to more easily use my mouth to harm others? How can I teach my boys to treat women well if the main woman in their life doesn't treat herself well?
Yet, our culture makes it really difficult to learn to practice non-harm to ourselves because non-harm does not necessarily mean being self-indulgent. It might mean pampering oneself at times, but if doing so harms others--either in commission or omission--then the purpose is self defeating, I think. I could be full of crap, but if I use family, community, or environmental resources in a way that makes me feel good but is unwise or harmful, then I'm being self-indulgent, not taking care of myself. It's quite a balancing act. I think many people in nurturing roles (teachers, parents, nurses, doctors, social workers, etc) tend to find striking this balance quite difficult. But if we look at ourselves gently, I think that we'd all agree that perhaps it would be easier to take care of ourselves if we'd think of doing so as practicing non-harm
Yesterday, my husband found out his position at the university was eliminated. What that means in the short term is still unclear. It's complicated by the fact that BGSU outsourced food service, forced my husband to take a job in food service when his last position was eliminated in March, and the new company would never have accepted him and isn't required to keep him since they are not part of the "state system." So, he's been tossed back to BGSU and is, sort of, in the same position he was in in March...looking for a bump, which probably doesn't exist at this point. So, at least he wasn't fired. He might be able to stay on Family Medical Leave...none of which is here nor there...but seven months ago, I'd have been much more worked up, much more upset, much more stressed than I am right now. You'd think that I'd be beside myself...and don't get me wrong, I will be at some point. At some point, I'm sure I'll break down and totally lose it.
But there isn't much I can do about any of it. It is what it is. If I take my focus off getting well, if I let stress negatively affect my health, physical and mental, I'll be engaging in self-harm. I can't control what BGSU does. I can control what I do. That's the best I can do. BGSU isn't worth the negative energy that I'm tempted to give it right now. Instead, I try to just do ujjaya pranayama...breathe in, breathe out, in, out, in, out....
And try not to kill someone.
See, I'm still the old Dawn....just more contemplative these days.
Friday, November 20, 2009
for those not following along on facebook...
BGSU eliminated my husband's position today. Again. We might have some, minimal, recourse. At least it looks like he will qualify for unemployment. Happy Holidays!
I feel like I'm in the popular clique now.
I feel like I'm in the popular clique now.
I don't get it...
The other day, I was trapped in the Onco's waiting room for a long, long, long time. I'm not complaining, just whining. She's a great onco and never, ever has made me feel rushed. She's always running behind. We all know that. We all go prepared to wait. That's just how it is. It's not like people are there for frivolous happenstance. No one goes to her to hear, "It's just a virus, wait it out" or "take two aspirin and call me in the morning" or "it's just a cold" or "heat rash, not measles."
Anyway, there I was waiting waiting waiting. The only good thing about the waiting room there and the registration area is that there are always people around who make me feel healthy. This last time, there was a man registering next to me and he was as grey as a Crayola crayon. I could hear his every breath, and all I could think was, "He is NOT healthy..." and the woman next to me who had had breast cancer five years ago and was back with leukemia now. It really makes me think that life could be worse (and make me shake my fist at fate and promise it a good ass kicking if it gets worse).
Eventually, though, I had to break one of my cardinal rules about public places: "Do not, under any circumstances, pick of reading material." Even though most cancer patients are actually quite healthy when it comes to contagious illnesses (thanks to Neulasta and the fact that when we are sick we are pretty considerate of others or hospitalized), who knows about caregivers and family members? There are probably very few things crawling with more germs than reading material in public places.
::shudder::
Not surprisingly, most of the reading material pertains to cancer.
Flipping through a magazine called Coping, I ran across an article about Sylvia McNair (a Grammy winner who is also a breast cancer survivor). In one section, the article says, "Now, three years on the other side of that 'failure' called cancer, Sylvia views it more as a gift than a setback." Then, McNair is quoted as saying, "Cancer is one of the best things that's ever happened to me."
Excuse me, but this just yanks my chain.
It's not like I'm all about looking for the silver lining. Without a silver lining (and the help of anti-depressants), I'd be one highly depressed individual.
But one of the best things that's ever happened to her? I get really tired of this attitude. In fact, next to the "be a good girl and wear pink, shut up, be pretty, and remain happy--full of gratitude anyway" attitude, about breast cancer in particular....this "best thing that has happened to me" crap really pisses me off.
No, unless your life has really, really sucked--and I mean sucked to the point that a movie has been made about it--cancer is not a best thing. That is pretty demeaning to the people who love you. Cancer is better than the love from your spouse? The birth of your children? Your place with your family, friends, and community?
Cancer sucks.
Can you imagine someone really believing, "The best thing that ever happened to me was the day that the psycho-sadist put out my eyes with a burning poker because it gave me the opportunity to learn to smell?"
Some might call people who can really believe that saints or prophets. I call them crazy mo'fo's who need some perspective.
I'm not denying that anything (especially something that induces suffering) can provide new perspective, provoke appreciation, and even provide learning opportunities and the development of compassion. In fact, McNair goes on to say, "Cancer is a perspective giver like nothing else I've ever experienced. It has given me so much more than it has taken away. And it has taken away a lot....My body is forever altered. But so is my spirit...and my spirit is now living with much more clarity and gratitude. I'm living larger than I have ever lived....Cancer has given me that gift." I am experiencing much the same, at 3.5 months in even (as opposed to her 3 years out).
But it's not a "gift" any more than when your dog shits in your living room and you learn a new technique to remove the stain and odor you've gotten a "gift." I don't look back at the time a box of crayons went through the dryer along with all the RENTED uniforms for a soccer team and I had to learn how to get melted crayon out of fabric and think, "Gosh, what a gift that was." Sure, I gained perspective, I learned new skills, and now, I can even look back and muster up a chortle.
My friends are a gift. The support I get from friends, family, and colleagues is a gift. The friendships that have deepened in the last 3.5 months and the re-connecting I've done with friends from the past are all gifts. But those gifts were there before. They are things that I could have discovered if I'd taken the time to slow down, to focus on what really is important instead of being swept along in the stream that had become my life. The fact that I've found all those wonderful gifts since my diagnosis is proof that they were there all along.
Just for the record, I do not think cancer is a gift. Nor do I think it is one of the "best things that has ever happened to me."
And if I ever start to talk like that each and every one of you has permission to set me straight. YOU are gifts and I'd never disrespect my family and friends by putting cancer on your level.
Nope. No way.
People said many of the same things after the still births of our babies. Or better yet, "Without those losses you wouldn't be blessed with the wonderful children you have." Wonderfully illogical, yet heartfelt, thinking, that is. No, I'd have other wonderful children. And the ones I have now could still turn out to be serial killers, spouse abusers, the next Hitler, or Republicans. Drat, If Jeffry Dahmer's mother had just NOT HAD THAT MISCARRIAGE....
I'm pretty sure I could have learned all of the lessons I've learned without cancer, too.
Anyway, there I was waiting waiting waiting. The only good thing about the waiting room there and the registration area is that there are always people around who make me feel healthy. This last time, there was a man registering next to me and he was as grey as a Crayola crayon. I could hear his every breath, and all I could think was, "He is NOT healthy..." and the woman next to me who had had breast cancer five years ago and was back with leukemia now. It really makes me think that life could be worse (and make me shake my fist at fate and promise it a good ass kicking if it gets worse).
Eventually, though, I had to break one of my cardinal rules about public places: "Do not, under any circumstances, pick of reading material." Even though most cancer patients are actually quite healthy when it comes to contagious illnesses (thanks to Neulasta and the fact that when we are sick we are pretty considerate of others or hospitalized), who knows about caregivers and family members? There are probably very few things crawling with more germs than reading material in public places.
::shudder::
Not surprisingly, most of the reading material pertains to cancer.
Flipping through a magazine called Coping, I ran across an article about Sylvia McNair (a Grammy winner who is also a breast cancer survivor). In one section, the article says, "Now, three years on the other side of that 'failure' called cancer, Sylvia views it more as a gift than a setback." Then, McNair is quoted as saying, "Cancer is one of the best things that's ever happened to me."
Excuse me, but this just yanks my chain.
It's not like I'm all about looking for the silver lining. Without a silver lining (and the help of anti-depressants), I'd be one highly depressed individual.
But one of the best things that's ever happened to her? I get really tired of this attitude. In fact, next to the "be a good girl and wear pink, shut up, be pretty, and remain happy--full of gratitude anyway" attitude, about breast cancer in particular....this "best thing that has happened to me" crap really pisses me off.
No, unless your life has really, really sucked--and I mean sucked to the point that a movie has been made about it--cancer is not a best thing. That is pretty demeaning to the people who love you. Cancer is better than the love from your spouse? The birth of your children? Your place with your family, friends, and community?
Cancer sucks.
Can you imagine someone really believing, "The best thing that ever happened to me was the day that the psycho-sadist put out my eyes with a burning poker because it gave me the opportunity to learn to smell?"
Some might call people who can really believe that saints or prophets. I call them crazy mo'fo's who need some perspective.
I'm not denying that anything (especially something that induces suffering) can provide new perspective, provoke appreciation, and even provide learning opportunities and the development of compassion. In fact, McNair goes on to say, "Cancer is a perspective giver like nothing else I've ever experienced. It has given me so much more than it has taken away. And it has taken away a lot....My body is forever altered. But so is my spirit...and my spirit is now living with much more clarity and gratitude. I'm living larger than I have ever lived....Cancer has given me that gift." I am experiencing much the same, at 3.5 months in even (as opposed to her 3 years out).
But it's not a "gift" any more than when your dog shits in your living room and you learn a new technique to remove the stain and odor you've gotten a "gift." I don't look back at the time a box of crayons went through the dryer along with all the RENTED uniforms for a soccer team and I had to learn how to get melted crayon out of fabric and think, "Gosh, what a gift that was." Sure, I gained perspective, I learned new skills, and now, I can even look back and muster up a chortle.
My friends are a gift. The support I get from friends, family, and colleagues is a gift. The friendships that have deepened in the last 3.5 months and the re-connecting I've done with friends from the past are all gifts. But those gifts were there before. They are things that I could have discovered if I'd taken the time to slow down, to focus on what really is important instead of being swept along in the stream that had become my life. The fact that I've found all those wonderful gifts since my diagnosis is proof that they were there all along.
Just for the record, I do not think cancer is a gift. Nor do I think it is one of the "best things that has ever happened to me."
And if I ever start to talk like that each and every one of you has permission to set me straight. YOU are gifts and I'd never disrespect my family and friends by putting cancer on your level.
Nope. No way.
People said many of the same things after the still births of our babies. Or better yet, "Without those losses you wouldn't be blessed with the wonderful children you have." Wonderfully illogical, yet heartfelt, thinking, that is. No, I'd have other wonderful children. And the ones I have now could still turn out to be serial killers, spouse abusers, the next Hitler, or Republicans. Drat, If Jeffry Dahmer's mother had just NOT HAD THAT MISCARRIAGE....
I'm pretty sure I could have learned all of the lessons I've learned without cancer, too.
Monday, November 16, 2009
Mystery
I've had pain and swelling in my right arm for 6 weeks or so now. It appears to be related to my chemo cycles, somehow, as it appears to diminish, nearly totally, a few days before I get chemo and then increases in the days after each infusion.
It is improved by yoga.
The muscle in my forearm feels tight. And the pain is nearly all in my forearm. It feels like my hand and wrist should be weak, but they aren't.
The infusion nurses suggested perhaps it was a side-effect of one of the chemo drugs.
Today, Dr. Mo said that wasn't an option. She suggested perhaps it was a blood clot. Oh, joy.
Off for a vascular ultrasound (interestingly, her HUSBAND was the vascular doctor in the clinic today).
No blood clot.
However, Dr. Mo and I ended up discussing life with teenage boys (she has three sons, too) and I totally walked out of the office without discussing with her what it might be were it not a blood clot and what could be done because the discomfort is quite severe at times, to the point that it wakes me up at night.
So, what the hell is wrong with my arm? Now, I have to call the office again and then wait on pins and needles for the call back, ready to drop whatever I'm doing to take the call, which is rather inconvenient during a week of intense teaching and conferencing...I've only once had to say to a class, "I'm sorry, I have to take this call from my oncologist...."
I guess that's one time it's OK to play the cancer card?
I really don't think cancer has read Miss Manners.
It is improved by yoga.
The muscle in my forearm feels tight. And the pain is nearly all in my forearm. It feels like my hand and wrist should be weak, but they aren't.
The infusion nurses suggested perhaps it was a side-effect of one of the chemo drugs.
Today, Dr. Mo said that wasn't an option. She suggested perhaps it was a blood clot. Oh, joy.
Off for a vascular ultrasound (interestingly, her HUSBAND was the vascular doctor in the clinic today).
No blood clot.
However, Dr. Mo and I ended up discussing life with teenage boys (she has three sons, too) and I totally walked out of the office without discussing with her what it might be were it not a blood clot and what could be done because the discomfort is quite severe at times, to the point that it wakes me up at night.
So, what the hell is wrong with my arm? Now, I have to call the office again and then wait on pins and needles for the call back, ready to drop whatever I'm doing to take the call, which is rather inconvenient during a week of intense teaching and conferencing...I've only once had to say to a class, "I'm sorry, I have to take this call from my oncologist...."
I guess that's one time it's OK to play the cancer card?
I really don't think cancer has read Miss Manners.
Thursday, November 12, 2009
Comfort
Well, I wrote a 12K entry. Pasted it into word to spell check. Now I can't paste it back here. Either this entry will have to wait until I figure this out or until I decide to retype it. Drat.
----woo hoo....opening up google chrome fixed the problem.
I haven't written much this past week. I simply haven't had the energy. Apparently, I have enough energy to either teach or conference, but clearly not for both activities. Just one of those two activities compels at least a two hour nap. I'm not sure how it works, but I'm pain free during the day, and as the sun sets, the pain increases, until it's enough to keep me from falling asleep by bedtime. However, the pain is nowhere near the intensity as last cycle and the new pain meds either put me asleep or take it away, I'm not sure which. Regardless, it doesn't wake me up, so that's good. Basically, I'm just wiped out. I get tired standing. I can't muster the energy to go grill my brussels sprouts. I got them cleaned, cut, and marinating. Just. Can't. Do. That. Last. Step.
Sigh. I've never been what I would consider "high energy," but this is ridiculous. It is what it is.
I am working hard to find pleasure in simple things. And the most recent simple things are comfortable clothes, most specifically, warm things.
I've clearly never been fixated on how I dress. Some would say comfort has always been my imperative, which is a pretty good description of my jeans/t-shirt/jacket/sweater/mostly natural fiber approach. I don't do heels. I don't do panty hose. I rarely wear 100% unnatural fiber. I own very little that needs special laundering. Heck, I rarely even buy brand new clothing...I prefer others to have broken my clothes in for me already.
However, recently I've become quite attached to warm, soft fibers. Or would that be soft, warm fibers. I think soft is more important right now. I guess my nerve endings are more sensitive than normal.
I practically live in my Smartwool socks. If I'm not wearing Smartwool, I'm wearing fleece socks, and my favorites are the ones that are "aloe infused." Unfortunately, I have large feet and most fleece socks (the fuzzy fleece, which I just discovered is called "plush" fleece) are just a little too small and tend to slide off, but they still rock my world. I imagine that the more shaped, more expensive ones would fit a little better, but there you have it. I'm cheap and am willing to make do in this one instance.
Where I'm not willing to make do though is pajama pants. Oh my gosh. The little bit of heaven I bought at Wal*Mart on Wednesday still makes me happy. Mine are plain blue, but otherwise are just like these. Needless to say, in planning in advance for next semester when I won't be working, I think I will be getting a couple more pair. They are soft; they are warm; they are soft; they are not overly warm; they are soft; they are comfortable; most importantly, they are soft. That they cost less than $10 is a huge bonus.
I do have quite a large collection of pajama pants, most of which I've purchased at Goodwill. Gotta love Goodwill. Gotta love people who buy expensive pajamas and then donate them to Goodwill. If you are one of those people, God Bless you. My family thanks you. I have silk pajama pants. I have flannel pajama pants. I have super soft cotton pajama pants. In general, I don't do artificial fiber pajama pants. However, I decided to take a risk on these plush, fleece pants because I heart my plush fleece robes so much.
I'm not a "lounge in a bathrobe" type, but in the past, we've kept our house on the chill side...and robes are big, roomy, comfy, and warm. Lately, as I can't get warm, I I've been wearing my two fleece robes as clothing in the house, just like normal people might wear a light jacket or sweater or sweatshirt. The only difference is that I have a sweater or jacket or sweatshirt on under my robe.
Anything soft. That is what makes me happy these days. Soft.
Right now, it's 70F in my house, which is warm for us. I'm wearing plush pajama pants, smartwool socks, thick long sleeve cotton t-shirt, plush robe, soft wool hat, and am covered with a big, soft quilt. I'm not hot. I shouldn't need the quilt with the robe. But I do.
Regardless, everything is soft.
You may have noticed that I haven't said anything about pajama tops. In a nutshell, nothing works well. I prefer t-shirts: long sleeve for colder weather; short sleeve for warmer weather; tank tops for hot weather. Peri-menopause partly accounts for the lack of fleece on the upper half of my body. Fleece, sleep, and hot flashes aren't an ideal mix. However, I have been looking for shirts that are comfortable for sleep (and casual day wear at home) that button all the way up the front and are long enough not to scootch up in bed. I have to wear something after surgery next month. All recommendations are for things that button, due to limited arm mobility. Some people have recommended shirts that can be stepped into; however, I don't see how stepping into a shirt would be any less painful than pulling one over my head, except that I won't be able to lift my arms over my head for a period of time. I fail to see how I'll comfortably be able to pull a shirt up, over my hips and waist and get my arms in the sleeves and get the shirt onto my shoulders. Maybe I'll surprise myself.
So, I'm looking for t-shirt type, front closure, soft shirts suitable for pajamas. The ideal would be things I can wear out in public as well, in December and January. It is imperative that they be comfortable.
So far, I've come up with nothing ideal.
I have identified comfortable "street" pants that are non-plush double sided fleece...elastic waist, wide legged, and not looking like pajama pants. Someday soon, maybe they will be on sale and I will buy another pair in a different color. Meanwhile, I wear them several times a week. Warm, comfortable. Comfortable, warm. Wearing them is almost like teaching in my pajamas. Since I wear the same shirts to sleep in that I also wear to teach in some days (I do change between bed and work, don't panic...I mean they serve double duty), today wearing my fleece street pants was like teaching in my pajamas. If I weren't so paranoid about germs and, therefore, change my clothes when I come home from work, I'd sleep in the shirt I wore to school. It's one of my faves.
I've identified comfortable hats and scarves (none of which are "cancer" hats and scarves, by the way). I've identified comfortable pajama pants and robes. I have wonderful bedding and a plethora of pillows with super soft pillow cases (once again, Wal-Mart surprised me...Their Egyptian cotton pillow cases, which I found for $4 each are some of the nicest I've used, especially for the price). I have a wonderful, plush fleece electric blanket someone recently gave me that is phenomenal at reducing leg pain. I have quilts, which I've decided are better than comforters. I have a plethora of Smartwool and fleece socks. I have shoes that don't need to be tied after surgery. I have pull on winter boots. I have 'street' shirts for wearing after surgery, none of which will be good for sleeping. Adequate, but not good. Workable, but not ideal. I want ideal.
Suggestions?
Friday, November 6, 2009
My Cocktail
For those of you who have asked:
(Hopefully, I'll do the Herceptin until July, but the other two just once more....(: )
Herceptin
Taxotere
Carboplatin
(Hopefully, I'll do the Herceptin until July, but the other two just once more....(: )
Herceptin
Taxotere
Carboplatin
Thursday, November 5, 2009
Infusion #5, part 3
More bad news...apparently, according to the nurse I saw today for my Neulasta shot, my MUGA last month, indicated that my heart function has dropped "slightly" from my baseline before I started chemo. You might be thinking, "Well, you are almost done" and that's true, except that the drug that damages hearts is the one that I have to be on for a year (aka "chemo lite") and it is the one that is most effective on my type of cancer at keeping recurrences at bay. Without it, the chance of recurrence is quite high, actually, and this form of cancer without Herceptin is quite aggressive. So, later this month, I get an echo cardiogram. If it shows worse results, I'll have to delay Herceptin. I'm hoping to get in my last round of regular chemo and then get the echo cardiogram, since I'd have to probably take a break anyway due to surgery, so that might help.
Shit.
Also got the great news that the blood draw I had done yesterday shows my hemoglobin is now below 8.0, so I got an extra shot today, to hopefully help me produce more red blood cells--Procrit. Not really a fun shot. Ow! And it's still OW!
Check out these potential side effects. I refuse to allow them.
I'm really feeling a little overwhelmed tonight.
Once again, I'm feeling like it is time to quit work...but to what end? To sit around and fret over my health and my husband's job? If I could teach but not grade...teach but not conference....basically, the play part of work, not the work part of work. If I ever win the lottery, I'll hire a teaching assistant.
Shit.
Also got the great news that the blood draw I had done yesterday shows my hemoglobin is now below 8.0, so I got an extra shot today, to hopefully help me produce more red blood cells--Procrit. Not really a fun shot. Ow! And it's still OW!
Check out these potential side effects. I refuse to allow them.
I'm really feeling a little overwhelmed tonight.
Once again, I'm feeling like it is time to quit work...but to what end? To sit around and fret over my health and my husband's job? If I could teach but not grade...teach but not conference....basically, the play part of work, not the work part of work. If I ever win the lottery, I'll hire a teaching assistant.
Wednesday, November 4, 2009
Infusion #5, part 2
Infusion Days are long;however, thanks to steroids, I have not a sleepy bone in my body.
Chemo is working, really really well. However, my body does not like chemo. My hemoglobin is 8.2, which is more than one full point lower than last time, which does not bode well for next time. Bilirubin is up. A couple of other systems aren't doing so well, either. Infusion nurses claimed that they were only willing to infuse me today because my doctor insisted that for me these numbers aren't as bad as they look on paper. Good thing I trust her, because I'm rather attached to my liver, kidneys, pancreas, red blood cells.
At least these side effects only make me more and more exhausted and fatigued. The bone, joint, and muscle pain is projected to be worse this time around, and has started already.
It's sadly ironic that that which cures cancer makes me sicker than I've ever been in my life and may leave me with life-long, life threatening complications, which in and of themselves may shorten my life.
On the bright side, I went to yoga tonight with ever intention of blowing off the practice and just lying in Savasana and listening. But I didn't. I completed the practice and actually started to feel some energy by the midway point. It was a good practice, and I'm happy I sucked it up and did it all.
Chemo is working, really really well. However, my body does not like chemo. My hemoglobin is 8.2, which is more than one full point lower than last time, which does not bode well for next time. Bilirubin is up. A couple of other systems aren't doing so well, either. Infusion nurses claimed that they were only willing to infuse me today because my doctor insisted that for me these numbers aren't as bad as they look on paper. Good thing I trust her, because I'm rather attached to my liver, kidneys, pancreas, red blood cells.
At least these side effects only make me more and more exhausted and fatigued. The bone, joint, and muscle pain is projected to be worse this time around, and has started already.
It's sadly ironic that that which cures cancer makes me sicker than I've ever been in my life and may leave me with life-long, life threatening complications, which in and of themselves may shorten my life.
On the bright side, I went to yoga tonight with ever intention of blowing off the practice and just lying in Savasana and listening. But I didn't. I completed the practice and actually started to feel some energy by the midway point. It was a good practice, and I'm happy I sucked it up and did it all.
Tuesday, November 3, 2009
Infusion #5
Even more significant than tomorrow being the fifth of six infusion, it marks the 15th week of treatment.
I've always said I can do anything for 15 weeks, which has enabled me to withstand some pretty strenuous teaching schedules--such as teaching at 8 am and then again at 6 and 7:30 pm. This is not to say that I didn't choose those schedules, but 8 am is NOT an ideal time for me to teach. I am not a morning person.
However, I also believe my internal calendar is set to 15 week blocks...just like the year starts with the academic calendar. When I say, "Next year" I mean late next August not after January 1st.
What this means is that I'm over this chemo shit. I'm over this cancer shit. I'm over being a member of this club. I hit the wall this week. I know I've said this before, but I'm tired of being tired, specifically. I walk around feeling like I could fall asleep at any moment, but then when I try to sleep, it's hard. Yet, getting up each morning is harder and harder. I'm over my legs, hips, knees, ankles and arm hurting. I'm over having to "take something" so that the pain doesn't wake me up and so that I can fall asleep. I'm over having to remember to take something before I get into bed, not to mention trying to decide what and how much pain reliever I should take.
Yet, in three weeks I do this all again.
Plus, no matter how hard I've tried, my syllabus just won't let me put myself in a position where I'm not having conferences with students in the days and week after chemo and I'm madly grading the weekend before, during, and day after. The thought of collecting essay #4 right before my last chemo is overwhelming. Actually, thinking about finishing the semester is overwhelming right now.
The only thing I'm not over is actually being in the classroom actually teaching. I'm really enjoying my students this semester. I think knowing that at any time I could throw in the towel and walk away has been quite liberating in that sense.
I'm also not over making new and deepening old friendships.
But otherwise, if I didn't know I didn't have a choice, I'd be wondering if I can make it through the next five weeks. Not making it isn't an option. I'd like to go into surgery in six weeks with a little more energy, though. I've experienced big rebounds in the past, but not this time around. At this point in the semester, while a strong rebound would be appreciated, I'm normally wiped out, so I can't even imagine the next two weeks, with conferences most every day. I really hope for a rebound after treatment 6. I'd like to feel good before surgery. It only seems fair. Yet, as we all know, life isn't fair.
But enough of this. The chemo is working, I'm managing the side effects well, and so far I've avoided H1N1 or other illness. And I guess that has to be good enough for now.
I do have to say that I couldn't do this without dvr. Just couldn't. My hat is off to anyone who has done this without cable tv, let alone dvr. Being able to sit and watch episode after episode of House has saved me.
I've always said I can do anything for 15 weeks, which has enabled me to withstand some pretty strenuous teaching schedules--such as teaching at 8 am and then again at 6 and 7:30 pm. This is not to say that I didn't choose those schedules, but 8 am is NOT an ideal time for me to teach. I am not a morning person.
However, I also believe my internal calendar is set to 15 week blocks...just like the year starts with the academic calendar. When I say, "Next year" I mean late next August not after January 1st.
What this means is that I'm over this chemo shit. I'm over this cancer shit. I'm over being a member of this club. I hit the wall this week. I know I've said this before, but I'm tired of being tired, specifically. I walk around feeling like I could fall asleep at any moment, but then when I try to sleep, it's hard. Yet, getting up each morning is harder and harder. I'm over my legs, hips, knees, ankles and arm hurting. I'm over having to "take something" so that the pain doesn't wake me up and so that I can fall asleep. I'm over having to remember to take something before I get into bed, not to mention trying to decide what and how much pain reliever I should take.
Yet, in three weeks I do this all again.
Plus, no matter how hard I've tried, my syllabus just won't let me put myself in a position where I'm not having conferences with students in the days and week after chemo and I'm madly grading the weekend before, during, and day after. The thought of collecting essay #4 right before my last chemo is overwhelming. Actually, thinking about finishing the semester is overwhelming right now.
The only thing I'm not over is actually being in the classroom actually teaching. I'm really enjoying my students this semester. I think knowing that at any time I could throw in the towel and walk away has been quite liberating in that sense.
I'm also not over making new and deepening old friendships.
But otherwise, if I didn't know I didn't have a choice, I'd be wondering if I can make it through the next five weeks. Not making it isn't an option. I'd like to go into surgery in six weeks with a little more energy, though. I've experienced big rebounds in the past, but not this time around. At this point in the semester, while a strong rebound would be appreciated, I'm normally wiped out, so I can't even imagine the next two weeks, with conferences most every day. I really hope for a rebound after treatment 6. I'd like to feel good before surgery. It only seems fair. Yet, as we all know, life isn't fair.
But enough of this. The chemo is working, I'm managing the side effects well, and so far I've avoided H1N1 or other illness. And I guess that has to be good enough for now.
I do have to say that I couldn't do this without dvr. Just couldn't. My hat is off to anyone who has done this without cable tv, let alone dvr. Being able to sit and watch episode after episode of House has saved me.
Monday, November 2, 2009
Who Knew????
In the past, I've not been highly successful at sending cards to people, even holiday greetings. I buy them; I rarely send them. However, I've ever so much appreciated the cards and greetings and little things people have sent me since July, that I've vowed to do better. In that regard, I've been at Gen's Hallmark twice now within the last week.
Ever tried to find a non-sappy, yet meaningful card for a 16 year old boy? Yeh, not as easy as you might think. What I did discover is that there is now a plethora of card categories ("appropriate for job loss;" "struggling with depression"). As I was searching for one, guess what I found? Yes, leave it to Hallmark. There is an entire section of cards specifically for people with cancer and undergoing treatment. Seriously, I never would have thought to look for a card specifically for someone undergoing cancer treatment.
Who knew? I think I need to spend more time in card shops in the future. I had no idea that I could find cards for people with empty nest syndrome? One thing I do know, there are still too many cards with pictures of puppies and kittens on them.
Ever tried to find a non-sappy, yet meaningful card for a 16 year old boy? Yeh, not as easy as you might think. What I did discover is that there is now a plethora of card categories ("appropriate for job loss;" "struggling with depression"). As I was searching for one, guess what I found? Yes, leave it to Hallmark. There is an entire section of cards specifically for people with cancer and undergoing treatment. Seriously, I never would have thought to look for a card specifically for someone undergoing cancer treatment.
Who knew? I think I need to spend more time in card shops in the future. I had no idea that I could find cards for people with empty nest syndrome? One thing I do know, there are still too many cards with pictures of puppies and kittens on them.
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