Every survivor knows the butterflies that occur in the days and nights leading up to the quarterly then semi-annual and later annual visits with the oncologist. The what-ifs and the listing of abnormalities that precede the appointment. I knew that I must be coming on to good news, as I really feel great despite the phenomenal stress that I'm under at the moment. But it was elating to hear Dr. M say, "You look great; you've lost weight" and "Perfect blood work", and to congratulate me for being wise enough to implement her most important survival advice, "Three hours of sweaty exercise a week", by going in to work early each day and pounding it out on the stationary bike. "You work in a fitness center; you have no excuse!" she told me when I whined about it at the previous visit. She also said that my recent loss of the need to nap frequently could be attributed to those morning rides. But then she told me something I didn't expect, that as a participant in a clinical trial, one that has now been unblinded and for which I know I was not a recipient of the experimental drug, I will need to have follow up visits every 3 months, despite also showing a continued relationship with Ned (No Evidence of Disease). I have to admit as she was apologizing for the disruption this will cause, I found myself feeling pleased with the news. I hope the pre-visit trepidation I experienced this time will decrease as time goes on with future sessions, but I like getting to see the doc frequently.
Wednesday, July 25, 2012
Monday, July 23, 2012
Wow....
written late at night 4/28/12-I couldn't get it to publish, I don't know why, and it's been gone when I've looked for it her over the past couple of months, but here it is again...funny....
The past few months have been a whirlwind. Moving Mom here from California in October, trying to get her hooked up into the Vanderbilt medical system as I know it is the best and she has had such fragmented care in CA. I thought I had time, I thought the surgery to revise her ventriculo-peritoneal shunt on Thursday was the right thing to do and although I know that ALL surgery holds the risk of death, she seemed so vital, so tenacious, that I never even pondered that she would die of this experience. She seemed appropriately groggy after the surgery, a little less oriented the next day but I really never even thought that this could be her end. Ah Mommy....you always kept me on my toes. You gave me gifts that I love about myself and you allowed me to see shining examples of what and who I do and do not wish to be. I am in shock. I miss my mother, but I have been missing her for months now...missing the phone calls that used to be sure to irritate me. Missing the over-identification with my life and the over-enthusiasm for my activities that freaked me out. Her insatiable desire to surround herself with the things she loved even as she become more and more isolated from people. I have given a large portion of myself to trying to champion her needs and on attempting to intervene in situations that so frequently left her in need of assistance, unable to help herself out of a tight spot. Heck, I'm sure that's something that can happen to anyone but it started happening to me when I was a little kid and there was no other adult in the house so I felt it my duty to try to grow up fast. I've never been able to shake it. And now, I will have to reinvent myself as a girl who does not have an ill mother who is also a force of nature, a creative dervish and a magnetic spirit. I'm on my own now as far as that goes. Lucky to still have my other mother to comfort me, my father to counsel and console me. My sister to share my grief, my dear husband to shepherd me and commiserate. My friends to gather round me. I'm a sad and lucky girl in mourning for Charmaine. 1/21/38-4/28/12.
The past few months have been a whirlwind. Moving Mom here from California in October, trying to get her hooked up into the Vanderbilt medical system as I know it is the best and she has had such fragmented care in CA. I thought I had time, I thought the surgery to revise her ventriculo-peritoneal shunt on Thursday was the right thing to do and although I know that ALL surgery holds the risk of death, she seemed so vital, so tenacious, that I never even pondered that she would die of this experience. She seemed appropriately groggy after the surgery, a little less oriented the next day but I really never even thought that this could be her end. Ah Mommy....you always kept me on my toes. You gave me gifts that I love about myself and you allowed me to see shining examples of what and who I do and do not wish to be. I am in shock. I miss my mother, but I have been missing her for months now...missing the phone calls that used to be sure to irritate me. Missing the over-identification with my life and the over-enthusiasm for my activities that freaked me out. Her insatiable desire to surround herself with the things she loved even as she become more and more isolated from people. I have given a large portion of myself to trying to champion her needs and on attempting to intervene in situations that so frequently left her in need of assistance, unable to help herself out of a tight spot. Heck, I'm sure that's something that can happen to anyone but it started happening to me when I was a little kid and there was no other adult in the house so I felt it my duty to try to grow up fast. I've never been able to shake it. And now, I will have to reinvent myself as a girl who does not have an ill mother who is also a force of nature, a creative dervish and a magnetic spirit. I'm on my own now as far as that goes. Lucky to still have my other mother to comfort me, my father to counsel and console me. My sister to share my grief, my dear husband to shepherd me and commiserate. My friends to gather round me. I'm a sad and lucky girl in mourning for Charmaine. 1/21/38-4/28/12.
Last Friday
I am writing practically nonstop these days, but obviously not much of it here. I have so many projects on my plate-too many! I'm managing to stay fairly calm behind all of it, and remind myself of the need for inner peace every day. Forgoing yoga at the moment to avoid public emotional evisceration, I have found a wonderful QiGong/Tai Chi class at the local YMCA, taught by an acupuncturist who discusses the traditional Chinese Medicine aspects of our activities during the exercises; right up my alley! That will help me on the way to becoming ready to return to yoga, and I hope I will continue with both.
Last Friday was a very nice day, hectic but rewarding at work and then I met up for dinner with a fascinating woman I met at a breast cancer support group. I don't do much of that support group thing, but this one, for the ABC program which stands for After Breast Cancer at the YMCA is one that I support in my work and I have been the beneficiary of for its free personal training and nutritional counseling, and the meeting that I attended when I met my new friend was "spa night" and well worth going. The best part though was S. who is a woman in the middle of her journey through treatment, a physician herself, beautiful, fit, smart, and with basically the very same diagnosis as I had. Triple negative, early stage, left sided. So much in common although so far apart culturally. She a Caribbean, I a California Jew. It was gratifying to me to have some opportunity to offer some experience, to hopefully smooth some of the challenges facing my new friend. It's amazing how soothing it is to be able to, from time to time, offer someone a tip that makes their experience just a tiny bit easier. And when it's a person that you really want to get to know, it's that much better. It didn't even occur to me to suggest that she might want to read this blog, but I will next time I talk to her. That was the impetus for starting this anyway, the idea that someone sometime might have a similar path to walk and need a bit of a road map. I wish I could have found one when I was initially facing my health challenges.
Later on Friday night, we went to a birthday party at the home of a friend who travels so much that we never get to see her. Lots of our old pals were in attendance, and it was amazing to meet up with the crew, and sadly unsurprising to hear of many newly diagnosed cancer survivors among them, and to hear of those who have not made it while we have been busy working on our own survival. Every day another miracle; waking up is one.
Last Friday was a very nice day, hectic but rewarding at work and then I met up for dinner with a fascinating woman I met at a breast cancer support group. I don't do much of that support group thing, but this one, for the ABC program which stands for After Breast Cancer at the YMCA is one that I support in my work and I have been the beneficiary of for its free personal training and nutritional counseling, and the meeting that I attended when I met my new friend was "spa night" and well worth going. The best part though was S. who is a woman in the middle of her journey through treatment, a physician herself, beautiful, fit, smart, and with basically the very same diagnosis as I had. Triple negative, early stage, left sided. So much in common although so far apart culturally. She a Caribbean, I a California Jew. It was gratifying to me to have some opportunity to offer some experience, to hopefully smooth some of the challenges facing my new friend. It's amazing how soothing it is to be able to, from time to time, offer someone a tip that makes their experience just a tiny bit easier. And when it's a person that you really want to get to know, it's that much better. It didn't even occur to me to suggest that she might want to read this blog, but I will next time I talk to her. That was the impetus for starting this anyway, the idea that someone sometime might have a similar path to walk and need a bit of a road map. I wish I could have found one when I was initially facing my health challenges.
Later on Friday night, we went to a birthday party at the home of a friend who travels so much that we never get to see her. Lots of our old pals were in attendance, and it was amazing to meet up with the crew, and sadly unsurprising to hear of many newly diagnosed cancer survivors among them, and to hear of those who have not made it while we have been busy working on our own survival. Every day another miracle; waking up is one.
Sunday, July 1, 2012
Yoga for the soul-I need a break
I've been absent lately as I have been processing both emotionally and business-wise my mother's death. Having held her hand as she left her body, I feel a strange peace about the dying process, but a profound sense of loss that encompasses my life totally; grief for lost loved ones, for lost body-parts, career and life focus, ambition....a laundry list of loss. And I thought the loss of time to practice and attend yoga class was one of those griefs, but I find now that every time I try to go, I end up feeling as if I've been cracked open like a soft-boiled egg and my insides are slowly sliding out, tears flowing, sobs unable to be contained. It's embarassing and then also draining and interferes with further plans for the day. Today it was crushing; I could barely drive home for the sobs wracking me after the class. And I realized that I have to stop. I need to refocus, try a different approach to mental and physical fitness, at least for now. I feel such a weight of responsibility this summer, with my financial commitments to my mother's estate, my own home finances, my upcoming presentation at the conference I will attend in early September...I will wait until after that to return to yoga classes. And I'll hope that approach will reset the feedback loop and I'll be able to have a new response. Because I don't want my yoga practice to be another loss to grieve.
Monday, February 20, 2012
Nausea and frustration
Boy am I ever tired of this one-thing-after-the-other mild illness. When I was feeling slow and punky this morning, I assumed that it was due to having a bit too much fun last night with friends who came for dinner, giving me the chance I've missed for so long now to cook for friends. We drank 2 bottles of Spanish Cava between the two of us girls, the guys sticking to beer, and I don't think I drank a whole bottle myself, but maybe, and that would certainly hang me over after not drinking that much in a long time. I did notice my belly actually hurting a couple of times yesterday, feeling a bit "knotted up" and tight, not nauseous but not as hungry as I had expected to be for the Paella I made. This morning, after my workout which I had to really work at in an unusual way, I found myself feeling woozy and during my first patient, I was genuinely afraid that I was going to have to excuse myself to vomit. Had that hyper-salivation, starting-to-heave feeling that usually preceeds hurling in my experience. Somehow, I managed to fight it down. I focused on drinking hot strong Irish Breakfast tea in between patients and skipped lunch save a white roll that the guy at Dunkin' Donuts gave me for free when I looked a bit green at the prospect of a "cheezy bagel twist" upon the news that they were out of plain bagels. Tonight, a piece of cold chicken breast and some cold plain pasta made dinner. I was hungry while still nauseous. Go figure. My belly is making some pretty odd noises. We'll see how the night goes.
I wonder if it has anything to do with the news that a friend from my days as a singing waitress, a woman who was diagnosed with triple negative breast cancer about a year or two before me, passed away yesterday. C didn't do chemo at first, when she was originally diagnosed, and tried some experimental treatments. I called her the night before I was to start chemo and her stories of her experiences freaked me out. I was happy that she reached out to me but unable to bravely stand up and woman up and continue talking with her. Can't even remember now what exactly she said that was so upsetting to me. And when she had her recurrance I couldn't bear to follow her journey as it was a bit too close. I think she was stage 3 at original diagnosis, I was stage 2, I did chemo asap, she didn't, so there are differences. I'm holding on to that and sending good thoughts and heartfelt wishes out into the world for support to her family and loved ones, and for my own continued survival.
I wonder if it has anything to do with the news that a friend from my days as a singing waitress, a woman who was diagnosed with triple negative breast cancer about a year or two before me, passed away yesterday. C didn't do chemo at first, when she was originally diagnosed, and tried some experimental treatments. I called her the night before I was to start chemo and her stories of her experiences freaked me out. I was happy that she reached out to me but unable to bravely stand up and woman up and continue talking with her. Can't even remember now what exactly she said that was so upsetting to me. And when she had her recurrance I couldn't bear to follow her journey as it was a bit too close. I think she was stage 3 at original diagnosis, I was stage 2, I did chemo asap, she didn't, so there are differences. I'm holding on to that and sending good thoughts and heartfelt wishes out into the world for support to her family and loved ones, and for my own continued survival.
Thursday, February 16, 2012
All's well
The survivorship struggle includes a lot of features, some beautiful, some very bleak. Among the beauties are the deep appreciation of small treats, like the taste and texture of a fine chocolate or the dazzle of a full moon, greatly enhanced over the pre-diagnosis experience, and the relishing of sensory delights including hot baths, tempting aromas, the soft warm sensation of my dog's head resting on my leg. The less lovely aspects that one carries are the fears that can be elicited by every little bump, or new skin growth, or a series of minor health such as I've gone through over the last 3 months, challenges that might be interpretted as a recurrance, a metastisis, or a new cancer. Well, this afternoon the docs agreed that the bump on the right breast, palpable by all but undetectible on ultrasound, is just a feature of the implant. Nothing, nothing at all, to worry about. And with that news, my energy rises like the response to a blast of an illegal drug. It's Thursday night, tomorrow TGIF. My cold is waning, my friends are coming for dinner on Sunday, all is right with the world. In my home, anyway.
Long hard day at work
Written 2/15/12
It didn't look like a hard day just by glancing at the schedule. We even had a break for MBSR training and had a chance to relax, do some Qi Gong, and I got to eat lunch at the Indian Buffett, which was a treat. But the afternoon just basically fell apart, with a no-show, a conference call that at least went as planned, and then lastly a patient who had not been in for a month who was agitated and responded very poorly to my attempts to elicit some plans for improvement in her condition. I tried to employ some of the techniques that we've worked on in Health Coaching and it really backfired on me, with the patient getting off the table before treatment began and walking out stating that she's not sure if she will come back.
I could go on and on about the details of the visit and examine every question I posed to the patient and every response on either side, and I've certainly done that in my mind all night and with no satisfactory revelations, so there is no point in focusing on that here. But I'm going to have to figure out how to respond to this-who is to contact the patient, what are we to offer her, how do I handle the documentation-and I must sythesize the lessons there for me to learn from this, unclear as they are at the moment.
The most difficult factor for me in the situation is that I REALLY LIKE this patient and had hoped that we would become friends. I feel quite fond of her and sympathetic to what it must be like to go through the cancer expereience as she has while raising 3 kids. I guess I'll figure out the lessons soon, but I'm mourning the experience today.
I have also found a small bump on the medial aspect of my right reconstructed breast and have to go in to have it looked at today. Although I'm mostly very calm about that and am quite sure that it is benign, whatever it is, I'm going to feel a lot better about that this evening, and can't help anticipating a long day at the breast center. And the beat goes on....
It didn't look like a hard day just by glancing at the schedule. We even had a break for MBSR training and had a chance to relax, do some Qi Gong, and I got to eat lunch at the Indian Buffett, which was a treat. But the afternoon just basically fell apart, with a no-show, a conference call that at least went as planned, and then lastly a patient who had not been in for a month who was agitated and responded very poorly to my attempts to elicit some plans for improvement in her condition. I tried to employ some of the techniques that we've worked on in Health Coaching and it really backfired on me, with the patient getting off the table before treatment began and walking out stating that she's not sure if she will come back.
I could go on and on about the details of the visit and examine every question I posed to the patient and every response on either side, and I've certainly done that in my mind all night and with no satisfactory revelations, so there is no point in focusing on that here. But I'm going to have to figure out how to respond to this-who is to contact the patient, what are we to offer her, how do I handle the documentation-and I must sythesize the lessons there for me to learn from this, unclear as they are at the moment.
The most difficult factor for me in the situation is that I REALLY LIKE this patient and had hoped that we would become friends. I feel quite fond of her and sympathetic to what it must be like to go through the cancer expereience as she has while raising 3 kids. I guess I'll figure out the lessons soon, but I'm mourning the experience today.
I have also found a small bump on the medial aspect of my right reconstructed breast and have to go in to have it looked at today. Although I'm mostly very calm about that and am quite sure that it is benign, whatever it is, I'm going to feel a lot better about that this evening, and can't help anticipating a long day at the breast center. And the beat goes on....
Friday, January 6, 2012
Is it hot in here, or is it just me?
Written Wednesday January 4th
I realized shortly after my mother's stroke that I would be in danger if I allowed myself to continue as high-anxiety over the various property dealings and stresses surrounding her care as I initially allowed myself to be, and I thought that I had gotten it under control. But ever since I returned from California, I've been plagued with health blips, one on the heels of the other. First, tonsillitis that came home with me from L.A. and wouldn't leave, then the flu, and now this recurrent bout of pelvic pain. Despite my Zen aspirations, I remain very frightened every time I have any kind of persistent new symptom. My fear of anything indicating a possible recurrence or metastasis drives my anxiety despite my attempts to tell myself to be in the present, focusing on what is right and well and functioning normally, and expect to heal normally. To see these recent health dips as just part of the rhythm of life. Gotta stop freaking out and live the way I envision myself living, the way the me-in-my-mind lives.
I never used to like medication, but I'm glad to have some tonight. It's probably either a bladder infection or a kidney stone. Either way, it's a lot better with meds.
I realized shortly after my mother's stroke that I would be in danger if I allowed myself to continue as high-anxiety over the various property dealings and stresses surrounding her care as I initially allowed myself to be, and I thought that I had gotten it under control. But ever since I returned from California, I've been plagued with health blips, one on the heels of the other. First, tonsillitis that came home with me from L.A. and wouldn't leave, then the flu, and now this recurrent bout of pelvic pain. Despite my Zen aspirations, I remain very frightened every time I have any kind of persistent new symptom. My fear of anything indicating a possible recurrence or metastasis drives my anxiety despite my attempts to tell myself to be in the present, focusing on what is right and well and functioning normally, and expect to heal normally. To see these recent health dips as just part of the rhythm of life. Gotta stop freaking out and live the way I envision myself living, the way the me-in-my-mind lives.
I never used to like medication, but I'm glad to have some tonight. It's probably either a bladder infection or a kidney stone. Either way, it's a lot better with meds.
Monday, January 2, 2012
Happy Freaking New Year
I am so glad to welcome 2012. Ready for a great year, and always trying to become more calm, more Zen, more able to appreciate the wonderful things in my life that often get overlooked while trying to just keep up with everyday details.
I started having some really intense bladder pain on Friday evening; not the usual burning on urination that usually accompanies a bladder infection but spasms and pressure and actual pain. I think it was an exacerbation of interstitial cystitis, which hasn't bothered me in ages, but after eating lots of chocolate and drinking far too little water and more coffee than usual over the holidays, I assume I aggravated my bladder. Spent the day Saturday preparing for our party and drinking tons of Evian and a homeopathic remedy and the strategy seemed to work for me, but I didn't do the midnight champagne thing. I felt enough better by yesterday to enjoy a little wine at my party but am ready to back off the celebratory eating and drinking and get back to my usual constraints anyway. Up early and off to work again tomorrow.
Seems like there is so much illness all around me...every time I take any time to peruse Facebook, which is rare, I find that some friend of mine has had a major health event or has passed away. This time of year it seems that the reports increase. It's hard to keep my spirits up over the holidays, and I'm trying not to fall into an expectation of bad news when the season rolls around. This time, I'm feeling really grateful that although my father has been recently diagnosed with Lymphoma, his pathology indicates a form of the disease that people generally manage well and that doesn't require treatment. That's my attempt to make lemonade here, and to try to focus on the positive. I know Dad is scared, and of course I know first hand how hard it is to reconcile that news that Cancer of any form is now part of one's health history. It's a shock, and an emotional experience that requires several stages of assimilation, like grief. I hope that he is able to achieve some peace about the diagnosis and not to focus on the fear-factor. So many of us are surviving with cancer and living quality lives. I just hate for him that he had to join the survival team of our family; guess he couldn't stand to be left out!
I took lunch to my mother in the nursing home today. She seemed to enjoy the meal and the visit. I had a lot of sadness this weekend, missing being able to call her to chat, even though those conversations were often frustrating. During those calls, at least we were able to converse with ease, which is no longer possible, and phone calls these days are almost pointless for me; as I am nearby and able, it's much better to visit in person. These days, both on the phone and in person, she doesn't say much, but she says that she is happy. Lord knows that makes me happy. Happy New Year, everyone.
I started having some really intense bladder pain on Friday evening; not the usual burning on urination that usually accompanies a bladder infection but spasms and pressure and actual pain. I think it was an exacerbation of interstitial cystitis, which hasn't bothered me in ages, but after eating lots of chocolate and drinking far too little water and more coffee than usual over the holidays, I assume I aggravated my bladder. Spent the day Saturday preparing for our party and drinking tons of Evian and a homeopathic remedy and the strategy seemed to work for me, but I didn't do the midnight champagne thing. I felt enough better by yesterday to enjoy a little wine at my party but am ready to back off the celebratory eating and drinking and get back to my usual constraints anyway. Up early and off to work again tomorrow.
Seems like there is so much illness all around me...every time I take any time to peruse Facebook, which is rare, I find that some friend of mine has had a major health event or has passed away. This time of year it seems that the reports increase. It's hard to keep my spirits up over the holidays, and I'm trying not to fall into an expectation of bad news when the season rolls around. This time, I'm feeling really grateful that although my father has been recently diagnosed with Lymphoma, his pathology indicates a form of the disease that people generally manage well and that doesn't require treatment. That's my attempt to make lemonade here, and to try to focus on the positive. I know Dad is scared, and of course I know first hand how hard it is to reconcile that news that Cancer of any form is now part of one's health history. It's a shock, and an emotional experience that requires several stages of assimilation, like grief. I hope that he is able to achieve some peace about the diagnosis and not to focus on the fear-factor. So many of us are surviving with cancer and living quality lives. I just hate for him that he had to join the survival team of our family; guess he couldn't stand to be left out!
I took lunch to my mother in the nursing home today. She seemed to enjoy the meal and the visit. I had a lot of sadness this weekend, missing being able to call her to chat, even though those conversations were often frustrating. During those calls, at least we were able to converse with ease, which is no longer possible, and phone calls these days are almost pointless for me; as I am nearby and able, it's much better to visit in person. These days, both on the phone and in person, she doesn't say much, but she says that she is happy. Lord knows that makes me happy. Happy New Year, everyone.
End of year blues
written on Friday, 12/30/11
It was a beautiful morning, and wonderful to sleep in at least a little and have a day off of work, at least at the office...there was plenty of work to do around here preparing for New Year's Day and our almost-annual open house. And trying to tie up some loose ends with my mother's needs, working on her Medicare elections for next year and finding myself preoccupied thinking about her health status after a call from the doctor at the facility yesterday telling me that her kidneys are declining. I myself am due for a colonoscopy but will have to reschedule the appointment coming up in January so that I can miss no more than one work day as I need to save my sick days to deal with Mom's doctor appointments. It all ganged up on me while navigating the traffic during shopping and I really started feeling anxious and blue. The pressure of needing to get things done by a certain time, of dealing with bureaucracies and worrying whether anyone will show up for our party.
It was a beautiful morning, and wonderful to sleep in at least a little and have a day off of work, at least at the office...there was plenty of work to do around here preparing for New Year's Day and our almost-annual open house. And trying to tie up some loose ends with my mother's needs, working on her Medicare elections for next year and finding myself preoccupied thinking about her health status after a call from the doctor at the facility yesterday telling me that her kidneys are declining. I myself am due for a colonoscopy but will have to reschedule the appointment coming up in January so that I can miss no more than one work day as I need to save my sick days to deal with Mom's doctor appointments. It all ganged up on me while navigating the traffic during shopping and I really started feeling anxious and blue. The pressure of needing to get things done by a certain time, of dealing with bureaucracies and worrying whether anyone will show up for our party.
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