As Thanksgiving draws near there has been much talk on FaceBook about what we are thankful for and trying every day of November to post these thoughts. It has made me think about all the people in my life who I am thankful for especially those who made/are making my experience with cancer much more manageable. These are my supporters and Co-Survivors. They say it takes a Village to raise a Child. I think it takes a Village to Survive Cancer. So this is a big ‘Thank You’ note to my Village!
The Village consists of so many people in so many different capacities, just like a real village. There are the many families in town who I know to varying degrees that cooked us meals, walked the dog, and sent care packages with everything from peppermint candies and magazines to jammies and socks. There were phone calls and emails and letters. There were flowers and fruit baskets. And there were donations to foundations in my name. There were trips to appointments as far away as Boston. My daughter’s school supported us as well. Teachers, counselors, the librarian and many others were aware of her potential needs and always ready to help. And of course the multitude of medical staff who cared for me, my nurses, doctors, technicians, administrative staff and even the valet car parkers at Dana Farber who smiled at me every day when I arrived for radiation. And currently my Village has some new members from the world of Twitter and FaceBook. I have been fortunate to ‘meet’ many people who are always ready to support and encourage me, to laugh and cry with me.
When it was time for surgery I called my good friend Linda. Linda has a husband, 3 kids, dogs, cats, chickens and some other creatures to care for, but without hesitation she jumped on board and started taking care of me too. She stayed overnight in the hospital with me after my mastectomy. She accompanied me on 5 of my 8 chemos, driving 40 minutes to my house to pick me up and take me another 45 minutes to the hospital, spending anywhere from 5 to 8 hours with me hooked up to toxic chemicals, playing Cribbage while I was spaced out on Benadryl and watching Ellen, The View and other more dubious day time TV shows in the chemo room. She also took me on many of my trips to Boston for radiation, PET Scans, and visits with my doctors. She makes me laugh and treats me like I am the same person I have always been. That is the beauty of 25 years of loving someone I guess.
And of course there is my family. My extended family helped with visits from Virginia, many talks on the phone, trips to appointments, and humor. My Dad gave us a trip to Florida to visit him, rest and recover. My In-laws were also a huge help bringing us food and taking extra special care of Sophia. And during my first radiation treatments my Father-in-law drove me almost every day to Boston and back while my mother-in-law took care of Sophia because it was summer-time and she was out of school.
My Mom came to stay with us for my surgery and spent a week taking care of us every month for 4 months while I had chemo. She also came to help out during radiation, often driving me to Boston. She cleaned my house and made all our meals and did our laundry and generally made life so easy for us during such a difficult time. Knowing she was here allowed me to relax and know everything would be taken care of even if I didn’t lift a finger. My daughter Sophia continues to be a huge source of inspiration and motivation. It was so hard going through this with her, but without her I don’t know how I could have done it. And watching her mature and grow during my 3 years fighting cancer has been so amazing! And last but certainly not least is my husband Nick. He has struggled with my cancer in a way only your truest, loving-est life partner ever can. And he has remained and always will remain my strongest source of comfort and support. He does it in a quiet way. He sat by the bed and watched me as I slept. He took care of the business and the house and the daughter and the dog for the many months I was unable to. He came to realize in a more profound way all I am to him and now reminds me of it daily with a hug or a kiss or just holding my hand.
I am so thankful for all of these people. The list is long, and I am so grateful for that. I am one of the lucky ones. It is hard to see that in the midst of all the badness. But knowing how hard others have it because they don’t have a village to support them has made me realize how fortunate I am. Thanks so much to everyone who has supported me and continues to support me. And if anyone ever needs to start a Village for themselves please let me know, I’ll be there!
Saturday, November 14, 2009
Tuesday, October 27, 2009
Post-Treatment Stress Disorder: Healing and Dealing
So you’re done with treatment, you’ve had your last chemo, your last radiation appointment and you don’t have to go see any more doctors, nurses or hospitals for at least 3 months….now what do you do? I think that the majority of people would assume, “WOOT! WOOT! I am free and I can get back to my life now! Yea!” But I am here to tell you the reality is a bit different, at least for me. Yes there is some of that relief and excitement of being over a MAJOR hurdle. But there is also fear and anxiety, which post-treatment have been much more prevalent for me than the joy. In fact, since I was diagnosed with breast cancer almost 3 years ago I have not experienced much joy in my life, but I have experienced many days and nights and weeks filled with fear, anxiety and depression.
When I was going through treatment I have to say that I lived very much in the moment. I was focused very much on the present and getting through each day, each treatment, each appointment, one at a time. I did not look at the big picture, at least not after that initial shock of being diagnosed and jumping to a bleak future in my mind. And by staying in the present I was able to get myself through. If I could just make it one more day and then one more day eventually I would be through to the other side of this hell. And what I found in that present was that I was good at fighting cancer. And I was good at being a patient. I was strong and I had a good attitude. And people kept telling me what a good job I was doing and what an inspiration I was. My Radiation Oncologist said to me “You are and A+ patient!” And like the story goes, cancer even made me better looking because since I’ve had cancer everyone tells me how good I look, which they never told me before!
Then treatment ends. And the constant attention from your doctors and nurses and your family and friends slowly subsides. But inside you are not ready for that. My immediate reaction to “So, we’ll see you in 3 months” was “Oh crap! That’s too long!” Because even though your body is ready for a break, your mind is just getting started. Now you don’t know what to do with all this time on your hands and extra time is just what your mind starts to feed on. Every ache, twinge, soreness, pimple becomes a source of obsession and worry. You are so scared that left unattended the cancer is sure to come back. No one is watching guard anymore, except for you and your overworked mind.
As friend and Breast Cancer Survivor Marie Ennis O’Connor put it, “My days were my own again, but I was unsettled and lost. My emotional and psychological landscape had changed dramatically and I needed to find a new way to be in the world. While the battle for survival ended, a new challenge was beginning – how to make sense of the experience of cancer and integrate it into my new normal. Now the time for real healing begins.”
Friend and Breast Cancer Survivor Jody Schoger put it this way, “…I think the challenge of cancer actually begins once treatment is done, and you must adjust to a new body, an altered mind, and a sense of betrayal about the nature of life itself.”
So I am on the road to healing and dealing with life after cancer. I have lived through a diagnosis and treatment and then even through my worst nightmare…a recurrence, the words ‘metastatic disease” and more treatment. I am grappling with carrying on and fighting depression that is sometimes worse than the cancer ever was. I stand in the shower for much too long swaying back and forth under the hot water not wanting to leave the sanctuary of that tiny warm space. I want to curl up in a ball and hide. I want to lay in my bed with the covers pulled over my head and rest in the darkness. I want to wall myself off from the world and everyone in it. This is truly how it feels many days. And I am writing this to let people know that it is a reality many people face. And everyday I fight against the forces of evil. I get out of bed and go for a run. I call a friend and have lunch. I drive my daughter to school. I work with my husband. I walk the dog. I go through the motions every day. I “fake it till I make it”. Some days are easier than others of course and there are good times. But it is constant vigilance right now. I stand guard. I have hope that as time goes by the depression and anxiety and fear will diminish. And hope is a powerful thing. It is with hope, faith and love that I get through to the next day, and the next. And thankfully my family and friends are here to give me their hope, faith and love too.
To read more from Marie please visit “Journeying Beyond Breast Cancer” by clicking on the link at the right side of this page.
To read more from Jody please visit “Jody’s LiveStrong Challenge” by clicking on the link at the right side of this page.
When I was going through treatment I have to say that I lived very much in the moment. I was focused very much on the present and getting through each day, each treatment, each appointment, one at a time. I did not look at the big picture, at least not after that initial shock of being diagnosed and jumping to a bleak future in my mind. And by staying in the present I was able to get myself through. If I could just make it one more day and then one more day eventually I would be through to the other side of this hell. And what I found in that present was that I was good at fighting cancer. And I was good at being a patient. I was strong and I had a good attitude. And people kept telling me what a good job I was doing and what an inspiration I was. My Radiation Oncologist said to me “You are and A+ patient!” And like the story goes, cancer even made me better looking because since I’ve had cancer everyone tells me how good I look, which they never told me before!
Then treatment ends. And the constant attention from your doctors and nurses and your family and friends slowly subsides. But inside you are not ready for that. My immediate reaction to “So, we’ll see you in 3 months” was “Oh crap! That’s too long!” Because even though your body is ready for a break, your mind is just getting started. Now you don’t know what to do with all this time on your hands and extra time is just what your mind starts to feed on. Every ache, twinge, soreness, pimple becomes a source of obsession and worry. You are so scared that left unattended the cancer is sure to come back. No one is watching guard anymore, except for you and your overworked mind.
As friend and Breast Cancer Survivor Marie Ennis O’Connor put it, “My days were my own again, but I was unsettled and lost. My emotional and psychological landscape had changed dramatically and I needed to find a new way to be in the world. While the battle for survival ended, a new challenge was beginning – how to make sense of the experience of cancer and integrate it into my new normal. Now the time for real healing begins.”
Friend and Breast Cancer Survivor Jody Schoger put it this way, “…I think the challenge of cancer actually begins once treatment is done, and you must adjust to a new body, an altered mind, and a sense of betrayal about the nature of life itself.”
So I am on the road to healing and dealing with life after cancer. I have lived through a diagnosis and treatment and then even through my worst nightmare…a recurrence, the words ‘metastatic disease” and more treatment. I am grappling with carrying on and fighting depression that is sometimes worse than the cancer ever was. I stand in the shower for much too long swaying back and forth under the hot water not wanting to leave the sanctuary of that tiny warm space. I want to curl up in a ball and hide. I want to lay in my bed with the covers pulled over my head and rest in the darkness. I want to wall myself off from the world and everyone in it. This is truly how it feels many days. And I am writing this to let people know that it is a reality many people face. And everyday I fight against the forces of evil. I get out of bed and go for a run. I call a friend and have lunch. I drive my daughter to school. I work with my husband. I walk the dog. I go through the motions every day. I “fake it till I make it”. Some days are easier than others of course and there are good times. But it is constant vigilance right now. I stand guard. I have hope that as time goes by the depression and anxiety and fear will diminish. And hope is a powerful thing. It is with hope, faith and love that I get through to the next day, and the next. And thankfully my family and friends are here to give me their hope, faith and love too.
To read more from Marie please visit “Journeying Beyond Breast Cancer” by clicking on the link at the right side of this page.
To read more from Jody please visit “Jody’s LiveStrong Challenge” by clicking on the link at the right side of this page.
Tuesday, October 13, 2009
Sick and Tired of Feeling Sick and Tired
Sometimes having cancer seems like the ultimate insult from my own body. I mean when did my body decide to have a mind of its own?? When did it let in the enemy?? I am guessing from what I have read that the enemy has been with me for years, unbeknown to me. And perhaps I can’t blame it entirely on my body as I know it had some accomplices. My guess would be that pollution, processed food, chemicals sprayed on food, toxins in the ground water, toxins in my health and beauty products, toxins in our cleaning supplies and who knows what else, have contributed to my cancer.
One could go crazy trying to take control over all the accomplices to cancer. I have gone to all natural soaps, shampoo, and lotions. I use natural dish soap and detergents around my house. I try to buy organic foods and eat very little to almost no processed foods. I happen to live in the tailpipe of the country however, so air pollutants are hard to avoid. But we can control these variables only so much, and keep our sanity at the same time!
So with all these attempts to control the outer forces of evil in place, I then turn again to my body. How could it betray me like this?? I remember that once I was diagnosed with breast cancer I couldn’t wait to get the cancer surgically removed. Now that doesn’t mean I was excited about surgery, far from it, but what it means is that each day that I walked around with cancer in my body I felt a certain despair and disgust. I would look at the offending breast with disdain. And after quickly weighing all the treatment options I went ahead with a left side mastectomy. It felt good to have the cancer gone.
After treatment for a recurrence I find myself again in a position where I feel betrayed by my body. I feel fragile and vulnerable. I feel like my life is not my own…. and I hate that. Just last weekend I was completely depleted and had to sleep late and rest a lot and take a day off from exercise. Now I don’t mind sleeping late and resting. Those of you who know me know that I love to wake up at 11am on a Saturday morning and that the Olympic napping gene runs in my family. But I like to do these things on MY TERMS not my body’s terms, and certainly not cancer’s terms. And I realize that this isn’t just my body’s fault. It has been through a lot. It has been run through the rigors of chemo, radiation twice, and various other meds and procedures. My poor body was aged instantly and thrown into menopause. And I am here to tell you that instant menopause sucks. There is the weight gain, and the mood swings, and the hot flashes. It is all true! My eyes had trouble after chemo and my knees would get a bit achy and I would be stiff or sore. And occasionally a doctor would say, “Well you are getting older!” And I thought “Hell, this can’t all be because I am in my 40’s now!”
I know there is a fine line between kicking cancer’s butt and allowing yourself to recover. But that line is hard for me to walk down. I want to work hard and live my life and prove to cancer that I am in control. But sometimes my body, and honestly my mind too, can’t hack it. And that is when frustration sets in. And frustration doesn’t help anyone but that is where I find myself, the line between kicking butt and recovering is painted with frustration. Each day I work to erase that line. And I know some of this frustration comes from feeling like I’ve served my time and now I deserve a “Get Out of Jail Free” card. Like I should never have another ache or pain or sickness in my life. But that is not the way things work. I guess instead of being upset with my body I need to work with it. Team up and fight together against this nasty intruder. I need to use my mind, body and soul to get my life back to where I want it. Right now it feels like constant vigilance is required. Here’s hoping that the further I get from cancer the closer I get to me.
One could go crazy trying to take control over all the accomplices to cancer. I have gone to all natural soaps, shampoo, and lotions. I use natural dish soap and detergents around my house. I try to buy organic foods and eat very little to almost no processed foods. I happen to live in the tailpipe of the country however, so air pollutants are hard to avoid. But we can control these variables only so much, and keep our sanity at the same time!
So with all these attempts to control the outer forces of evil in place, I then turn again to my body. How could it betray me like this?? I remember that once I was diagnosed with breast cancer I couldn’t wait to get the cancer surgically removed. Now that doesn’t mean I was excited about surgery, far from it, but what it means is that each day that I walked around with cancer in my body I felt a certain despair and disgust. I would look at the offending breast with disdain. And after quickly weighing all the treatment options I went ahead with a left side mastectomy. It felt good to have the cancer gone.
After treatment for a recurrence I find myself again in a position where I feel betrayed by my body. I feel fragile and vulnerable. I feel like my life is not my own…. and I hate that. Just last weekend I was completely depleted and had to sleep late and rest a lot and take a day off from exercise. Now I don’t mind sleeping late and resting. Those of you who know me know that I love to wake up at 11am on a Saturday morning and that the Olympic napping gene runs in my family. But I like to do these things on MY TERMS not my body’s terms, and certainly not cancer’s terms. And I realize that this isn’t just my body’s fault. It has been through a lot. It has been run through the rigors of chemo, radiation twice, and various other meds and procedures. My poor body was aged instantly and thrown into menopause. And I am here to tell you that instant menopause sucks. There is the weight gain, and the mood swings, and the hot flashes. It is all true! My eyes had trouble after chemo and my knees would get a bit achy and I would be stiff or sore. And occasionally a doctor would say, “Well you are getting older!” And I thought “Hell, this can’t all be because I am in my 40’s now!”
I know there is a fine line between kicking cancer’s butt and allowing yourself to recover. But that line is hard for me to walk down. I want to work hard and live my life and prove to cancer that I am in control. But sometimes my body, and honestly my mind too, can’t hack it. And that is when frustration sets in. And frustration doesn’t help anyone but that is where I find myself, the line between kicking butt and recovering is painted with frustration. Each day I work to erase that line. And I know some of this frustration comes from feeling like I’ve served my time and now I deserve a “Get Out of Jail Free” card. Like I should never have another ache or pain or sickness in my life. But that is not the way things work. I guess instead of being upset with my body I need to work with it. Team up and fight together against this nasty intruder. I need to use my mind, body and soul to get my life back to where I want it. Right now it feels like constant vigilance is required. Here’s hoping that the further I get from cancer the closer I get to me.
Sunday, September 27, 2009
Twisters
No, this is not a story about tornadoes. Although the Twisters I am writing about can bring on a huge storm of support, caring and healing when times are bad…or good.
I am a social networking addict. There, I’ve said it. That is part of the recovery right? First you have to admit there is a problem and then you can move on to fixing the problem. But I’m not really that bad. I only use Facebook and Twitter. I have 50 ‘friends’ on Facebook. Yes, that’s all, just 50 friends. A very small number for a self-proclaimed social networking addict. On Twitter I have 150 followers and I follow 180 people. This may sound like a lot but these really are very small numbers, and some of my ‘followers’ are phonies. And while I do need to figure out a way to control my time spent on Facebook and Twitter I am here to explain that social networking has its good points.
I am a cancer survivor who is still in treatment and getting frequent scans to be sure that the cancer is not coming back. This is a very stressful time for me and there are only so many ways to deal with this stress. I jog, take walks on the beach with my family, and listen to meditation and affirmation recordings. These are all great and very useful but they are not very interactive.
That’s where Twitter and Facebook come into play. But there is a dilemma. Do I post about my upcoming cancer tests or not? I debated this issue for a while in my mind. I really wasn’t sure what to do. It seems like a very private thing to post on such a seemingly public forum. And I sometimes worry that posting it on Facebook or Twitter looks like a desperate plea for attention. It feels a bit like airing your dirty laundry in public, like showing up on the Maury Povich show to reveal some dirty little secret. I guess this is how cancer wants us to feel. It wants us to stay isolated so it can beat us. I guess this is why there is a stigma associated with cancer, because sometimes it does feel like a dirty little secret.
But my experience with the men and women I know on Facebook and Twitter is unique and invaluable. In fact I have coined a phrase with the women I know on Twitter. They are my Twitter Sisters or as I now call them…my Twisters.
My Twisters give me unending support, encouragement, and positive energy. They post songs that make me want to sing along. They light candles for me in tiny, beautiful churches in Ireland and post pictures of these churches. They post links to very funny You-Tube videos that make me laugh. They remind me of how strong I am and how strong I can remain. They tell me things I want to hear. They make me feel better, it actually works. I came home on Tuesday, after my most recent PET Scan (which was all clear!), to Twitter and Facebook and all sorts of positive comments from my Twisters. And it helped me feel so much more positive, so much less stressed. I felt so much more like things were going to be okay, no matter what, but mostly I just felt a sigh of relief, contentment, a belonging. My Twisters were rallying around me, they were circling the wagons. I was being cradled in their supportive cyber-arms from all around the world and it felt so good. So say what you will about the evils of technology and social networking, but I am sticking with my Twisters. They know how to make a girl feel wanted, needed, supported and loved, all through a blinking computer screen. Power to the Twisters!
I am a social networking addict. There, I’ve said it. That is part of the recovery right? First you have to admit there is a problem and then you can move on to fixing the problem. But I’m not really that bad. I only use Facebook and Twitter. I have 50 ‘friends’ on Facebook. Yes, that’s all, just 50 friends. A very small number for a self-proclaimed social networking addict. On Twitter I have 150 followers and I follow 180 people. This may sound like a lot but these really are very small numbers, and some of my ‘followers’ are phonies. And while I do need to figure out a way to control my time spent on Facebook and Twitter I am here to explain that social networking has its good points.
I am a cancer survivor who is still in treatment and getting frequent scans to be sure that the cancer is not coming back. This is a very stressful time for me and there are only so many ways to deal with this stress. I jog, take walks on the beach with my family, and listen to meditation and affirmation recordings. These are all great and very useful but they are not very interactive.
That’s where Twitter and Facebook come into play. But there is a dilemma. Do I post about my upcoming cancer tests or not? I debated this issue for a while in my mind. I really wasn’t sure what to do. It seems like a very private thing to post on such a seemingly public forum. And I sometimes worry that posting it on Facebook or Twitter looks like a desperate plea for attention. It feels a bit like airing your dirty laundry in public, like showing up on the Maury Povich show to reveal some dirty little secret. I guess this is how cancer wants us to feel. It wants us to stay isolated so it can beat us. I guess this is why there is a stigma associated with cancer, because sometimes it does feel like a dirty little secret.
But my experience with the men and women I know on Facebook and Twitter is unique and invaluable. In fact I have coined a phrase with the women I know on Twitter. They are my Twitter Sisters or as I now call them…my Twisters.
My Twisters give me unending support, encouragement, and positive energy. They post songs that make me want to sing along. They light candles for me in tiny, beautiful churches in Ireland and post pictures of these churches. They post links to very funny You-Tube videos that make me laugh. They remind me of how strong I am and how strong I can remain. They tell me things I want to hear. They make me feel better, it actually works. I came home on Tuesday, after my most recent PET Scan (which was all clear!), to Twitter and Facebook and all sorts of positive comments from my Twisters. And it helped me feel so much more positive, so much less stressed. I felt so much more like things were going to be okay, no matter what, but mostly I just felt a sigh of relief, contentment, a belonging. My Twisters were rallying around me, they were circling the wagons. I was being cradled in their supportive cyber-arms from all around the world and it felt so good. So say what you will about the evils of technology and social networking, but I am sticking with my Twisters. They know how to make a girl feel wanted, needed, supported and loved, all through a blinking computer screen. Power to the Twisters!
Friday, September 18, 2009
Cancer is a Full-Time Job
I have said many times that Cancer diagnosis, treatment and recovery is a full-time job for patients and caregivers. So I tried to imagine what the write up in the newspaper would look like.
Job Description: Cancer: seeking people of all ages to participate in long-term full-time job opportunity.
Tasks and Responsibilities:
Will be required to change your life course instantly to begin the job.
Will be required to communicate with physicians, nurses and insurance providers on a daily basis.
Will be responsible for orienting and mentoring new staff members.
Applicant Qualifications:
Must be willing to change your appearance as needed for the job - for example; lose your hair, lose weight, gain weight, body parts removed, body parts adjusted, body parts rebuilt.
Must be capable of translating foreign languages such as medical jargon, insurance codes and bureaucratic paperwork.
Must be willing to travel on a daily basis and attend meetings frequently.
Must have good organizational skills including; filling out and handling medical history forms, making frequent calls to various medical staff and medical institutions and scheduling appointments without overbooking.
Must be a hard worker, willing to put in overtime.
Must be of sound mental, emotional and physical abilities as all will be severely tested.
Must be tough as nails.
Must be made of Fortitude, Courage and have an Indomitable Spirit.
Caregiver Applicants must also have the following qualifications:
Chauffeur, Cook, Babysitter, Counselor, Dog Walker and Back Scratcher.
Benefits:
No Pay, No Vacation time, You MUST show up when you are sick.
Benefits for Caregiver Position same as above but also include:
Unending Love and Gratitude
Experience is helpful but not necessary; there will be plenty of on-the-job training.
Cancer is an Equal Opportunity Employer. Cancer does not discriminate based on age, sex, race or social status.
Please address your resumes to Hell, Attention Satan.
I did not apply for this job but was drafted against my will. I was wishing there was a trial period and the boss would decide to fire me, but apparently I am really good at this job, so they promoted me to Stage 4. I guess the boss figures I can handle the really tough customers. So now my job is to tell cancer where it can go if it wants to make a return. Our company policy is no returns!
Job Description: Cancer: seeking people of all ages to participate in long-term full-time job opportunity.
Tasks and Responsibilities:
Will be required to change your life course instantly to begin the job.
Will be required to communicate with physicians, nurses and insurance providers on a daily basis.
Will be responsible for orienting and mentoring new staff members.
Applicant Qualifications:
Must be willing to change your appearance as needed for the job - for example; lose your hair, lose weight, gain weight, body parts removed, body parts adjusted, body parts rebuilt.
Must be capable of translating foreign languages such as medical jargon, insurance codes and bureaucratic paperwork.
Must be willing to travel on a daily basis and attend meetings frequently.
Must have good organizational skills including; filling out and handling medical history forms, making frequent calls to various medical staff and medical institutions and scheduling appointments without overbooking.
Must be a hard worker, willing to put in overtime.
Must be of sound mental, emotional and physical abilities as all will be severely tested.
Must be tough as nails.
Must be made of Fortitude, Courage and have an Indomitable Spirit.
Caregiver Applicants must also have the following qualifications:
Chauffeur, Cook, Babysitter, Counselor, Dog Walker and Back Scratcher.
Benefits:
No Pay, No Vacation time, You MUST show up when you are sick.
Benefits for Caregiver Position same as above but also include:
Unending Love and Gratitude
Experience is helpful but not necessary; there will be plenty of on-the-job training.
Cancer is an Equal Opportunity Employer. Cancer does not discriminate based on age, sex, race or social status.
Please address your resumes to Hell, Attention Satan.
I did not apply for this job but was drafted against my will. I was wishing there was a trial period and the boss would decide to fire me, but apparently I am really good at this job, so they promoted me to Stage 4. I guess the boss figures I can handle the really tough customers. So now my job is to tell cancer where it can go if it wants to make a return. Our company policy is no returns!
Friday, August 28, 2009
Twitter Breaks the Silence
Twitter has become my own personal private secret cancer fighting support group. It is like this entirely separate thing that is happening in my life. I feel like I’m on the lamb or bootlegging or something else very lawless. But it is wonderful. So please keep it a secret for me.
It is wonderful because I have found all these people who know how bad it sucks to have cancer so you don’t even have to go there with them, but it is okay if you do because they totally get it. We share information and ideas. We share moments of triumph and sorrow. We share the latest medical news and the latest grassroots efforts to fight the disease. We share support and hope and strength. We come from all walks of life and live all over the world but we manage to come together on Twitter. And perhaps the anonymity helps too. I can put my soul out there in a way I might not with someone face to face. Or maybe it’s just the writing. Ideas spread and you get swept up in it and you feel like you are a part of something much bigger than yourself. Like my name on a beam at Dana-Farber that will be covered with metal and no one will see but I know it is there and I am a part of something tall and strong and powerful.
But really it has been much easier to talk to people on twitter about cancer than almost anyone else. I mean I can talk to my husband, my dear friend Linda and to my therapist. There is my sister-in-law who is a breast cancer survivor and some women in town who are also cancer survivors. So really I am lucky, I have a handful of people who can help me out when I need it. But beyond that you can’t really talk about it with just anyone.
Perhaps it is related to that whole stigma and silence thing addressed in the video I watched recently from LiveSTRONG that I found through one of my new Twitter Friends, who happens to be featured in the documentary. (Go to You Tube and type in Stigma and Silence) There is a stigma that comes with a cancer diagnosis. People equate cancer with death. And no one wants to face death in any way, shape or form. Even if it is in the form of a friend who is suffering. Some people are just too scared, because it brings up their own mortality. And lets face it…it’s awkward to talk about death. It’s awkward to stand in the line waiting to pick up your kid from school and look death in the face and talk about baking cookies for the class Valentine Party.
And I can’t put all the blame on others for the silence because it was hard for me to talk about too. I remember when I was trying to figure out how to tell people I had breast cancer how uncomfortable I felt. I mean how do you say it?? I mean you are talking with some other moms in town about the usual, your kids, the next PTO meeting, good dinner recipes to swap, and the carpool schedule when you all of a sudden interject, ”Oh, by the way, did I tell you I have breast cancer?” I mean there is never a good way to say it and there is never a good time. So sometimes you just have to come out and get it over with. Luckily, in a small town news travels fast so telling one or two people meant the whole town knew quickly…my problem solved.
Sometimes when I talk to people I feel I am wearing a flashing neon sign across my chest that says “Caution: Cancer” with a skull and cross bones. And I feel them looking at that sign instead of me and then I see the wheels turning in their minds as they try to figure out what to say and what not to say and how to show they care but not to get too personal and how to get away before the “C” word enters the conversation. And sometimes I want to wear a different sign that says “Amazing Cancer Warrior Princess”. I want people to know. I want them to look at me and know I have been through hell and back but here I stand. I want them to know so I can help them or someone they know. I want them to know so they can be like, “Wow, you are so strong and rad dude!” But mostly I just want us to talk like there is no sign. We are just normal people on a normal day doing normal things.
I have been very fortunate. I live in a community where people really help each other. Many people did so much for me and my family and I am so grateful for that. Trying to get through cancer diagnosis and treatment is so unbelievably hard, and every kindness feels like a lifeline being gently tossed your way on the turbulent sea. Even a card or email, some flowers or a call can mean so much. If you know someone who is dealing with cancer don’t let them suffer in silence. Reach out to them in any way you can. Even if it is in 140 characters or less. Tweet!
It is wonderful because I have found all these people who know how bad it sucks to have cancer so you don’t even have to go there with them, but it is okay if you do because they totally get it. We share information and ideas. We share moments of triumph and sorrow. We share the latest medical news and the latest grassroots efforts to fight the disease. We share support and hope and strength. We come from all walks of life and live all over the world but we manage to come together on Twitter. And perhaps the anonymity helps too. I can put my soul out there in a way I might not with someone face to face. Or maybe it’s just the writing. Ideas spread and you get swept up in it and you feel like you are a part of something much bigger than yourself. Like my name on a beam at Dana-Farber that will be covered with metal and no one will see but I know it is there and I am a part of something tall and strong and powerful.
But really it has been much easier to talk to people on twitter about cancer than almost anyone else. I mean I can talk to my husband, my dear friend Linda and to my therapist. There is my sister-in-law who is a breast cancer survivor and some women in town who are also cancer survivors. So really I am lucky, I have a handful of people who can help me out when I need it. But beyond that you can’t really talk about it with just anyone.
Perhaps it is related to that whole stigma and silence thing addressed in the video I watched recently from LiveSTRONG that I found through one of my new Twitter Friends, who happens to be featured in the documentary. (Go to You Tube and type in Stigma and Silence) There is a stigma that comes with a cancer diagnosis. People equate cancer with death. And no one wants to face death in any way, shape or form. Even if it is in the form of a friend who is suffering. Some people are just too scared, because it brings up their own mortality. And lets face it…it’s awkward to talk about death. It’s awkward to stand in the line waiting to pick up your kid from school and look death in the face and talk about baking cookies for the class Valentine Party.
And I can’t put all the blame on others for the silence because it was hard for me to talk about too. I remember when I was trying to figure out how to tell people I had breast cancer how uncomfortable I felt. I mean how do you say it?? I mean you are talking with some other moms in town about the usual, your kids, the next PTO meeting, good dinner recipes to swap, and the carpool schedule when you all of a sudden interject, ”Oh, by the way, did I tell you I have breast cancer?” I mean there is never a good way to say it and there is never a good time. So sometimes you just have to come out and get it over with. Luckily, in a small town news travels fast so telling one or two people meant the whole town knew quickly…my problem solved.
Sometimes when I talk to people I feel I am wearing a flashing neon sign across my chest that says “Caution: Cancer” with a skull and cross bones. And I feel them looking at that sign instead of me and then I see the wheels turning in their minds as they try to figure out what to say and what not to say and how to show they care but not to get too personal and how to get away before the “C” word enters the conversation. And sometimes I want to wear a different sign that says “Amazing Cancer Warrior Princess”. I want people to know. I want them to look at me and know I have been through hell and back but here I stand. I want them to know so I can help them or someone they know. I want them to know so they can be like, “Wow, you are so strong and rad dude!” But mostly I just want us to talk like there is no sign. We are just normal people on a normal day doing normal things.
I have been very fortunate. I live in a community where people really help each other. Many people did so much for me and my family and I am so grateful for that. Trying to get through cancer diagnosis and treatment is so unbelievably hard, and every kindness feels like a lifeline being gently tossed your way on the turbulent sea. Even a card or email, some flowers or a call can mean so much. If you know someone who is dealing with cancer don’t let them suffer in silence. Reach out to them in any way you can. Even if it is in 140 characters or less. Tweet!
Monday, August 17, 2009
Help
I was talking with my sister-in-law recently (who is a 7 year Breast Cancer Survivor) about someone she knows who recently was diagnosed with breast cancer. This person was looking for some help and advice and support. It is one of the first things I did after my initial shock wore off.
I was lucky enough to have my sister-in-law to talk with. (Lucky in an unfortunate way, for both of us, if you know what I mean) I remember before my mastectomy I was very scared. I had mistakenly started to read about mastectomies in Dr Susan Love’s Breast Book. This book is called “the bible” for breast cancer patients and I understand why. It is a great book and I mean nothing negative when I tell you that it just isn’t the right book for me. There is so much information in the book that you can find the answers to all your questions. But I quickly realized that I am the kind of person who doesn’t need absolutely every detail of certain situations. I began to read about the procedure for a mastectomy and got no farther than the beginning of the description for anesthesia and getting a tube down my throat when I found that I was getting dizzy, short of breath and thought I might faint. Nick gently encouraged me to close the book and breathe. The next day I called Sue and spoke with her about her experience and she put me at ease. She didn’t say it would be easy or anything, she just told me how it was for her and that she knew I would be okay. I guess it was perhaps her calm manner that encouraged me to be calm.
And then before chemo started I was even more scared so I called Sue again and once more she helped calm me down. She made me laugh about things you might not really find funny but are so absurd that you have no choice but to laugh. Like when she told me about her chemo nurse coming toward her wearing heavy duty, clean-your-bathroom-type rubber gloves and a full face mask, carrying a bag full of meds that was going into Sue’s body. On the bag were all sorts of toxic warning labels that if this gets on your skin they take you to the “haz-mat” room and hose you down with special solutions and keep you quarantined for 5 days (not really but something like that). And it made me laugh and I knew I would be scared but I would be okay too.
I also, like many other people, turned to the Internet where there is so much information it can easily be overwhelming. Even though I know that there is such a thing for me as "too-much-info" I sometimes couldn't help myself. I remember when I was first diagnosed and looked on the internet for some info. I was completely sucked in to the search. And not all the info out there is helpful or reliable or factual. I would sit in front of the computer and get dizzy, short of breath and feel like I might faint and Nick would come and gently suggest that I turn off the computer and remember to breathe. I often went to the computer to look up info about the chemo drugs I would be taking, or side effects of the other meds I was given. And I would look for other people who were going through the same thing as me. But no one is going through the same thing as me. There are many of us who suffer with life-threatening illness but we all have our own story to tell. There may be similarities but just as no two people are exactly alike neither are our illnesses, treatments, or reactions to treatments.
I found the Internet to be a place where my deepest fears could be realized in someone else’s horror stories. I had to remind myself that it wasn’t necessarily going to be that way for me. I’m not saying the Internet is terrible or that you should never look for info there, I’m just saying READ WITH CAUTION! And use a timer that beeps really loudly so you don’t spend more than 30 minutes at a time online! I would also suggest just hitting the most reputable sites; such as breastcancer.org or the Dana Farber website or debbiescancerblog.blogspot.com.
Finding the right kind of support in trying times is important. Don’t give up. Try the big places like the American Cancer Society or Komen for the Cure and ask your Doctor for help and suggestions. Read if that works for you but remember to take everything with a grain of salt. Try support groups if you want but be sure you are getting what you need and not getting in deeper. Go to a good therapist. Talk to your family and friends. And if you think I can help then please contact me. I will try my best to be calm, intelligent and funny and not tell any horror stories.
I was lucky enough to have my sister-in-law to talk with. (Lucky in an unfortunate way, for both of us, if you know what I mean) I remember before my mastectomy I was very scared. I had mistakenly started to read about mastectomies in Dr Susan Love’s Breast Book. This book is called “the bible” for breast cancer patients and I understand why. It is a great book and I mean nothing negative when I tell you that it just isn’t the right book for me. There is so much information in the book that you can find the answers to all your questions. But I quickly realized that I am the kind of person who doesn’t need absolutely every detail of certain situations. I began to read about the procedure for a mastectomy and got no farther than the beginning of the description for anesthesia and getting a tube down my throat when I found that I was getting dizzy, short of breath and thought I might faint. Nick gently encouraged me to close the book and breathe. The next day I called Sue and spoke with her about her experience and she put me at ease. She didn’t say it would be easy or anything, she just told me how it was for her and that she knew I would be okay. I guess it was perhaps her calm manner that encouraged me to be calm.
And then before chemo started I was even more scared so I called Sue again and once more she helped calm me down. She made me laugh about things you might not really find funny but are so absurd that you have no choice but to laugh. Like when she told me about her chemo nurse coming toward her wearing heavy duty, clean-your-bathroom-type rubber gloves and a full face mask, carrying a bag full of meds that was going into Sue’s body. On the bag were all sorts of toxic warning labels that if this gets on your skin they take you to the “haz-mat” room and hose you down with special solutions and keep you quarantined for 5 days (not really but something like that). And it made me laugh and I knew I would be scared but I would be okay too.
I also, like many other people, turned to the Internet where there is so much information it can easily be overwhelming. Even though I know that there is such a thing for me as "too-much-info" I sometimes couldn't help myself. I remember when I was first diagnosed and looked on the internet for some info. I was completely sucked in to the search. And not all the info out there is helpful or reliable or factual. I would sit in front of the computer and get dizzy, short of breath and feel like I might faint and Nick would come and gently suggest that I turn off the computer and remember to breathe. I often went to the computer to look up info about the chemo drugs I would be taking, or side effects of the other meds I was given. And I would look for other people who were going through the same thing as me. But no one is going through the same thing as me. There are many of us who suffer with life-threatening illness but we all have our own story to tell. There may be similarities but just as no two people are exactly alike neither are our illnesses, treatments, or reactions to treatments.
I found the Internet to be a place where my deepest fears could be realized in someone else’s horror stories. I had to remind myself that it wasn’t necessarily going to be that way for me. I’m not saying the Internet is terrible or that you should never look for info there, I’m just saying READ WITH CAUTION! And use a timer that beeps really loudly so you don’t spend more than 30 minutes at a time online! I would also suggest just hitting the most reputable sites; such as breastcancer.org or the Dana Farber website or debbiescancerblog.blogspot.com.
Finding the right kind of support in trying times is important. Don’t give up. Try the big places like the American Cancer Society or Komen for the Cure and ask your Doctor for help and suggestions. Read if that works for you but remember to take everything with a grain of salt. Try support groups if you want but be sure you are getting what you need and not getting in deeper. Go to a good therapist. Talk to your family and friends. And if you think I can help then please contact me. I will try my best to be calm, intelligent and funny and not tell any horror stories.
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