Five years ago today, my life was about to change...one of several life changes occurring that year and years to follow. Five years ago today, I was undergoing a hysterectomy because there were "suspicious" cells that returned from a biopsy. Those "suspicious" cells were, in fact, undeniably cancerous. I was, unbeknownst to me, about to embark on weeks of radiation plus several months of chemotherapy. My, what a year that was!
There will be no waxing nostalgic in this post...for that you can read the blog entries for that year. This is about looking forward and living life with no regrets. From those years of life changes I became fulltime parent to a wonderfully spunky girl. With that I have years of looking forward to watching her become the tween/teen/young adult/etc. etc. etc. that she will evolve into. Fortunately for us, we get to share that journey with a wonderful woman who dropped into our lives about a year ago. Sofie and I both are looking forward to growing our family with one mom/partner and two more cats. (yes, we are crazy cat people!) Life can be full of challenges and growing pains, fortunately those also come with love and celebrations. To coin a phrase(or 80's one hit wonder), the futures so bright, I gotta wear shades.
In theory, the cancer was removed when my cervix, uterus, ovaries and fallopian tubes were removed. So do I celebrate 5 years Cancer free today...or do I wait until next March, the 5th anniversary of the end of my treatment? Maybe this can be the YEAR of 5 years Cancer free? Let's get this party started!!
Okay a little waxing nostalgic. A heartfelt thank you goes to everyone in my life, new and old, who have been here for me during the last five years of "growing pains"...couldn't be the mom, partner or friend I am without a supporting cast like you all.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Monday, July 25, 2011
Monday, June 27, 2011
Fence sitter or what I believe about the mom who is losing custody of her children "because" she has Cancer
All my life I've considered myself someone who always sees both sides to a story, a fence sitter, as it where. That trait has benefits although it doesn't make for a passionate defender. Honestly, I wish more people could see both sides, maybe our world would be a more peaceful place to live. That's why I was surprised to my initial reaction to the story of a woman who was losing custody of her kids, allegedly for having Cancer. Of course it pushed every liberal button in my body. I was outraged that such a thing was happening and it was happening in my own backyard! This was personal, too. The five people that read my blog know what the last five years of my life have been like. For those new to reading me, here it is in a nutshell:
The mom in question has some major PR backing. There's a Facebook page dedicated to the "wrongness" of the actions and much of mainstream media has jumped on the "mom was wronged because she has cancer" bandwagon. Since this is a family law type issue I don't think there's a ton of facts from either side out there. Why are we not hearing the Dad's side? Maybe he thinks the protection and privacy of his children are more important than the media show. Maybe he is a loser, although I highly doubt it since he seems to genuinely care for the well being of his children. The mom is holding onto every ounce of hope that she'll beat the cancer and I wouldn't expect anything less. Debra held on until the very end when she realized her body was riddled with cancer throughout her entire abdominal area, including her liver. It's the patients job to fight for their life! When there are children involved, it's the other parent and family to guide and prepare them through what may be the ultimate outcome...losing a parent.
When Debra and I were faced with her terminal cancer we quickly decided there was one main priority...Sofie. Not that we weren't thinking of ourselves in this situation, we were just thinking more of a little 7 year old who was about to lose a parent. We weren't living together so it took patience, understanding, collaboration and love to work through what was best for the kid...not what made either one of us feel better. We moved past our issues with the other adult and concentrated on spending quality time together and a family unit, all the while making the shift from Debra being primary parent to me being primary parent. Essentially we had 10 months from the time the recurrence occurred until Debra was arranging hospice to come assist her through the last week or so of her life.
What upsets me most about this case is the way the mother is being played the victim when actually it's the kids who are the true losers in this situation. (I am in no way insinuating she's playing the victim. Please note I said "played"...the media is really working the "because she has cancer" angle!) None of us know the full story but many folks are jumping to a conclusion (like I initially did) that may not be in the best interest of the children. As I've been pondering this case I can't help but think of how it would have affected Sofie if I weren't in the picture. Debra was really sick, especially near the end, so my condo became a place of respite for both of us. It's a time where we could spend quality time strengthening an already strong bond while others took care of Debra. There were definitely times that being around a very ill parent wore on Sofie. I couldn't imagine her having to endure that environment 24/7. I also couldn't imagine her not seeing Debra at all...thus my place firmly perched on the fence. My hope is there's a good team of people fighting for the kids in this case. A lawyer, social worker, psychologist...whoever can work together to make sure the kids get time with both parents in a way that supports their grief and growth.
What's right in this situation? Bottom line...whatever is best for the children.
- Former partner(and primary care provider to our daughter) diagnosed with Ovarian Cancer(2006) after our wonderful Primary Care doctor thought something was off with the symptoms Debra had.
- Surgery and chemo begin immediately
- Three months later, I was diagnosed with Endometrial Cancer after a hysterectomy was performed due to "suspicious cells" found during a biopsy.
- As her chemo is winding down, my treatment of surgery, radiation then chemo begins.
- Less than 6 months after completing chemo, cancer returns for Debra.
- We are simultaneously going through chemo since I had 3 treatments to go.
- Debra doesn't respond well to the chemo after the recurrence and dies December 2007.
The mom in question has some major PR backing. There's a Facebook page dedicated to the "wrongness" of the actions and much of mainstream media has jumped on the "mom was wronged because she has cancer" bandwagon. Since this is a family law type issue I don't think there's a ton of facts from either side out there. Why are we not hearing the Dad's side? Maybe he thinks the protection and privacy of his children are more important than the media show. Maybe he is a loser, although I highly doubt it since he seems to genuinely care for the well being of his children. The mom is holding onto every ounce of hope that she'll beat the cancer and I wouldn't expect anything less. Debra held on until the very end when she realized her body was riddled with cancer throughout her entire abdominal area, including her liver. It's the patients job to fight for their life! When there are children involved, it's the other parent and family to guide and prepare them through what may be the ultimate outcome...losing a parent.
When Debra and I were faced with her terminal cancer we quickly decided there was one main priority...Sofie. Not that we weren't thinking of ourselves in this situation, we were just thinking more of a little 7 year old who was about to lose a parent. We weren't living together so it took patience, understanding, collaboration and love to work through what was best for the kid...not what made either one of us feel better. We moved past our issues with the other adult and concentrated on spending quality time together and a family unit, all the while making the shift from Debra being primary parent to me being primary parent. Essentially we had 10 months from the time the recurrence occurred until Debra was arranging hospice to come assist her through the last week or so of her life.
What upsets me most about this case is the way the mother is being played the victim when actually it's the kids who are the true losers in this situation. (I am in no way insinuating she's playing the victim. Please note I said "played"...the media is really working the "because she has cancer" angle!) None of us know the full story but many folks are jumping to a conclusion (like I initially did) that may not be in the best interest of the children. As I've been pondering this case I can't help but think of how it would have affected Sofie if I weren't in the picture. Debra was really sick, especially near the end, so my condo became a place of respite for both of us. It's a time where we could spend quality time strengthening an already strong bond while others took care of Debra. There were definitely times that being around a very ill parent wore on Sofie. I couldn't imagine her having to endure that environment 24/7. I also couldn't imagine her not seeing Debra at all...thus my place firmly perched on the fence. My hope is there's a good team of people fighting for the kids in this case. A lawyer, social worker, psychologist...whoever can work together to make sure the kids get time with both parents in a way that supports their grief and growth.
What's right in this situation? Bottom line...whatever is best for the children.
Thursday, January 10, 2008
Cancerblog article
Several months ago, Debra was contacted via her blog by a writer at CR Magazine, which is published by the American Association for Cancer Research (AACR). The author writes a column in the journal entitled Cancerblogs and she wanted to do an article on Debra. Debra, being the networker that she was, suggested that there was a much bigger story here and that she should check out my blog, too. So, she did. Alanna, the author, interviewed both of us and pulled together a sweet article about how we were dealing with and teaching Sofie about death. That was a great angle to go from our blogs and really relevant based on our more recent experiences. You can view the article in it's entirety here. I'm just sorry Debra didn't get to see the finished product. I showed Sofie the article and the picture that's on the home page of the journal. Her response, "I'm in a MAGAZINE?!?! Wow!!"
Thursday, December 20, 2007
What makes a Mama proud
Yesterday I received a call from Sofie's therapist encouraging me to do a few things. First of all, move Christmas up a few days if we can. Secondly, to have "the" talk with Sofie. "The" talk included a few layers but it was "the" talk nonetheless.
After a long day at work I had an appointment with my therapist who had been out of town for a few weeks. It was great to be able to have that support before I went home to chat with Sofie.
I arrived at Debra's just as Sofie was settling in for a bath. I had planned to have the chat in her room as we were settling down for the night, but something told me to go for it while she was in the tub. That something was SO right!
I sat down beside the tub to be as close to her as I could be. First thing we talked about was why Grandma Mimi came to visit. I told her that it was because Mama Debra was getting sicker and Grandma wanted to be with her. I made sure she understood that's why there were so many people coming in and out of the house, too. That admission brought tears to both of our eyes.
The next step was THE hardest thing. First a little background. I have an angel that hangs from my rear view window that belonged to my MawMaw Bess(for the southern impaired, that's Grandma to you.) I made a beaded chain and put the angel on the end. Sofie asks about it often so we've talked about angels that were once on earth are now protectors of their loved ones. She obviously "got" it because she's used it in her own therapy sessions. So using angels as a metaphor for death was encouraged by Sofie's therapist.
After discussing Grandma Mimi's visit that was followed by little 7 year old pleas that she wished Mama Debra weren't sick and that she'd feel better. Perfect segue to the next part of the story.
"Honey, we've talked about how Mama Debra isn't going to get better. In fact, (tears are rolling down my face by this point) Mama Debra is preparing to leave us to become an angel. Which means you won't see her unless she visits you in your dreams or thoughts."
Tears are welling up and the lower lip is pooched out in Sofie. "But I want her to get better!"
"Unfortunately that's not going to happen...but once she's an angel, she won't be sick anymore. We just won't get to see that."
"Can I stay home from school tomorrow with you and Mama Debra?"
"Absolutely"
"Can I spend the night with you in the condo?"
"Of course!"
The next part is what makes this Mama so very proud of my girl.
Laurie, who's visiting from CA, came in to the bathroom and I filled her in on what had just happened.
"Mommy, can I say the "S" word?"
"Sure honey, you can say any bad word you can think of" (In our house, the bad words are stupid, dumb, hate among others. We're allowed to HATE only two things...she hates mosquitoes and bamboo...the bamboo is another story at another time)
"STUPID CANCER!!!" "STUPID DUMB CANCER! I HATE CANCER!!!" at that point, she stood up in the tub and grabbed her tub crayons. She drew a house with Debra, Sofie and me inside. Then she drew a smaller house(in yellow) with Debra in it as an angel. Then she drew Debra in a hospital bed. Above the two houses she wrote good times and beside the hospital bed she wrote, bad times.
"How to you spell stupid?" "S-T-U-P-I-D" "How do you spell Cancer?" "C-A-N-C-E-R" She wrote the words out, underlined them, crossed them out...got a lot of anger out towards them! Then she found a little piece of crayon and squished it into the side of the shower wall..."THIS is Cancer!! I HATE Cancer!!"
You can't imagine how proud and relieved I was to witness her emotions so profoundly exhibited. That interaction made me realize...she's going to be okay. Sad, but okay!
The rest of the evening was spent cuddling, talking. Me answering questions. Before we left Debra's to come to my house, she did go in and talk to Debra. Debra was awake so she got to tell her that she wished she'd get better. Debra reinforced that wasn't going to happen and to remember that she loved her more than anything. Sofie went through a litany of "I liked it better when you weren't sick because..." statements. Those reasons included, no longer getting to cuddle, no longer being able to play, and basically no longer any fun. Debra understands. Then just before we left, she gave Debra a big kiss and we told her we'd see her tomorrow.
If I haven't said it enough...I am so grateful to have a kid named Sofie as my daughter.
After a long day at work I had an appointment with my therapist who had been out of town for a few weeks. It was great to be able to have that support before I went home to chat with Sofie.
I arrived at Debra's just as Sofie was settling in for a bath. I had planned to have the chat in her room as we were settling down for the night, but something told me to go for it while she was in the tub. That something was SO right!
I sat down beside the tub to be as close to her as I could be. First thing we talked about was why Grandma Mimi came to visit. I told her that it was because Mama Debra was getting sicker and Grandma wanted to be with her. I made sure she understood that's why there were so many people coming in and out of the house, too. That admission brought tears to both of our eyes.
The next step was THE hardest thing. First a little background. I have an angel that hangs from my rear view window that belonged to my MawMaw Bess(for the southern impaired, that's Grandma to you.) I made a beaded chain and put the angel on the end. Sofie asks about it often so we've talked about angels that were once on earth are now protectors of their loved ones. She obviously "got" it because she's used it in her own therapy sessions. So using angels as a metaphor for death was encouraged by Sofie's therapist.
After discussing Grandma Mimi's visit that was followed by little 7 year old pleas that she wished Mama Debra weren't sick and that she'd feel better. Perfect segue to the next part of the story.
"Honey, we've talked about how Mama Debra isn't going to get better. In fact, (tears are rolling down my face by this point) Mama Debra is preparing to leave us to become an angel. Which means you won't see her unless she visits you in your dreams or thoughts."
Tears are welling up and the lower lip is pooched out in Sofie. "But I want her to get better!"
"Unfortunately that's not going to happen...but once she's an angel, she won't be sick anymore. We just won't get to see that."
"Can I stay home from school tomorrow with you and Mama Debra?"
"Absolutely"
"Can I spend the night with you in the condo?"
"Of course!"
The next part is what makes this Mama so very proud of my girl.
Laurie, who's visiting from CA, came in to the bathroom and I filled her in on what had just happened.
"Mommy, can I say the "S" word?"
"Sure honey, you can say any bad word you can think of" (In our house, the bad words are stupid, dumb, hate among others. We're allowed to HATE only two things...she hates mosquitoes and bamboo...the bamboo is another story at another time)
"STUPID CANCER!!!" "STUPID DUMB CANCER! I HATE CANCER!!!" at that point, she stood up in the tub and grabbed her tub crayons. She drew a house with Debra, Sofie and me inside. Then she drew a smaller house(in yellow) with Debra in it as an angel. Then she drew Debra in a hospital bed. Above the two houses she wrote good times and beside the hospital bed she wrote, bad times.
"How to you spell stupid?" "S-T-U-P-I-D" "How do you spell Cancer?" "C-A-N-C-E-R" She wrote the words out, underlined them, crossed them out...got a lot of anger out towards them! Then she found a little piece of crayon and squished it into the side of the shower wall..."THIS is Cancer!! I HATE Cancer!!"
You can't imagine how proud and relieved I was to witness her emotions so profoundly exhibited. That interaction made me realize...she's going to be okay. Sad, but okay!
The rest of the evening was spent cuddling, talking. Me answering questions. Before we left Debra's to come to my house, she did go in and talk to Debra. Debra was awake so she got to tell her that she wished she'd get better. Debra reinforced that wasn't going to happen and to remember that she loved her more than anything. Sofie went through a litany of "I liked it better when you weren't sick because..." statements. Those reasons included, no longer getting to cuddle, no longer being able to play, and basically no longer any fun. Debra understands. Then just before we left, she gave Debra a big kiss and we told her we'd see her tomorrow.
If I haven't said it enough...I am so grateful to have a kid named Sofie as my daughter.
Tuesday, December 18, 2007
Quick check in on Debra
It seems like forever since I've posted. I wanted to post about the adventures Sofie and I had over the weekend, but I feel I need to update everyone on Debra's condition. I'll post some happy post a little later.
Debra is not doing well at all. Pain seems to be controlling her life right now...so much so, they've just started her on oral Morphine. I worry that the end is much closer than any of us ever anticipated.
Please hold our little family unit in your thoughts and prayers as we help guide Debra peacefully to the next phase of her journey.
Debra is not doing well at all. Pain seems to be controlling her life right now...so much so, they've just started her on oral Morphine. I worry that the end is much closer than any of us ever anticipated.
Please hold our little family unit in your thoughts and prayers as we help guide Debra peacefully to the next phase of her journey.
Wednesday, December 12, 2007
A somewhat better day
Thanks to everyone for their support during my mini-meltdown yesterday. I have to say that writing the last blog posting was very therapeutic! After writing it, I felt tons better. Apparently all those people bugging me to write all these years were right. I just should have listened sooner.
Debra came home from the hospital today. She's still pretty weak. It'll take her a few days to get reoriented to life at home. The troops are arriving, so life will be easier for our family as we ride this roller coaster. I won't bore you with the schedule, but suffice it to say, we're covered through the New Year! We're going to try to have a great remainder of the year and create more memories.
Many are asking how Sofie's doing. I'd say today she had a major breakthrough. She apparently started sobbing at school during recess. She went over to one of her teachers and said, "I'm worried about my mommy!" sprinkled between sobs. After a bit of consoling she called Debra to check in on her. That made her feel better. Maya came and picked her up early from school, took her to Locopops for a frozen treat then to Whole Foods to get some flowers for Debra's return home. While at Locopops, Sofie informed a woman there with her dog that her mom has Cancer. The woman told her she was sorry. Sofie didn't stop there. She said my other mom had Cancer, too. And because of that I get to go to Camp Kesem! The lady said, "Well that's a way to find a silver lining out of something bad!" That's our girl.
Fortunately, Sofie had therapy tonight. Lots of good advice shared. She was encouraged to talk about stuff even if it makes her sad since the bad stuff doesn't go away even if you don't talk about it. Well that must have given her the permission she needed. After reading a few chapters in her book and turning lights out, she reached over, gave me a huge hug and said, "Mommy, I LOVE you!" and then she burst into tears and we talked for a long time about Debra. She cried, I cried. It was good. She had a bit of trouble falling asleep, but after crying, she said to me, "I got all the worries and sadness out!" Such a sweet girl she is. Her fear is that Debra will get sicker and have to go back into the hospital. She said, I miss her when she's in the hospital! Then we talked about Mama Debra and cuddling. "She won't get to cuddle and watch Jeopardy with me since she has the new little bed." Awww, poor kid. I wish I could make this all go away, but I know we've got a long road ahead of us.
Debra came home from the hospital today. She's still pretty weak. It'll take her a few days to get reoriented to life at home. The troops are arriving, so life will be easier for our family as we ride this roller coaster. I won't bore you with the schedule, but suffice it to say, we're covered through the New Year! We're going to try to have a great remainder of the year and create more memories.
Many are asking how Sofie's doing. I'd say today she had a major breakthrough. She apparently started sobbing at school during recess. She went over to one of her teachers and said, "I'm worried about my mommy!" sprinkled between sobs. After a bit of consoling she called Debra to check in on her. That made her feel better. Maya came and picked her up early from school, took her to Locopops for a frozen treat then to Whole Foods to get some flowers for Debra's return home. While at Locopops, Sofie informed a woman there with her dog that her mom has Cancer. The woman told her she was sorry. Sofie didn't stop there. She said my other mom had Cancer, too. And because of that I get to go to Camp Kesem! The lady said, "Well that's a way to find a silver lining out of something bad!" That's our girl.
Fortunately, Sofie had therapy tonight. Lots of good advice shared. She was encouraged to talk about stuff even if it makes her sad since the bad stuff doesn't go away even if you don't talk about it. Well that must have given her the permission she needed. After reading a few chapters in her book and turning lights out, she reached over, gave me a huge hug and said, "Mommy, I LOVE you!" and then she burst into tears and we talked for a long time about Debra. She cried, I cried. It was good. She had a bit of trouble falling asleep, but after crying, she said to me, "I got all the worries and sadness out!" Such a sweet girl she is. Her fear is that Debra will get sicker and have to go back into the hospital. She said, I miss her when she's in the hospital! Then we talked about Mama Debra and cuddling. "She won't get to cuddle and watch Jeopardy with me since she has the new little bed." Awww, poor kid. I wish I could make this all go away, but I know we've got a long road ahead of us.
Wednesday, December 5, 2007
Status on Debra
Many folks have written to me saying they're concerned because Debra hasn't blogged lately. I wanted to give you all a brief update on her situation. For the past few weeks, she's been fatigued beyond any one's comprehension. Hopefully it's residual from radiation treatments. Next week, she'll be seeing the oncologist for a follow-up/check-in visit. We'll know more then.
As far as blogging goes, her computer is downstairs and she's mainly upstairs. A laptop with wireless would be nice, but one hasn't magically appeared on the bedside table!! She checks email once a day...usually first thing in the morning(sometimes more if energy allows.)
Thanks for all your emails lately. It's been a tough few weeks, but we're all hanging in there.
As far as blogging goes, her computer is downstairs and she's mainly upstairs. A laptop with wireless would be nice, but one hasn't magically appeared on the bedside table!! She checks email once a day...usually first thing in the morning(sometimes more if energy allows.)
Thanks for all your emails lately. It's been a tough few weeks, but we're all hanging in there.
Tuesday, December 4, 2007
Every three months, like clockwork
Around this time last year, I had finished radiation and had just completed my first two rounds of chemotherapy. I was bald and loved wearing all the warm, cozy hats. Now I have a head full of darker hair that's possibly loosing the curls that came with regrowth(ie, chemo perm.) I hope so, I wasn't doing well with the curls...although people seemed to like them on me...just something different, I guess.
Today was my 3 month check-up with my oncologist, Dr. Valea. I alternate every three months between him and my radiation oncologist, Dr. Jones. The appointment was pretty uneventful, although I now have to have a colonoscopy to see how much damage the radiation from last year actually did to my digestive track. I've been having symptoms ever since I had radiation, but didn't really think that much about it...until today. I assumed it was something I was just going to have to live with. Well, I was wrong! Fortunately there's treatment for the condition I have...chronic radiation proctitis(or colitis)...unfortunately I have to have a colonoscopy to determine amount of damage to help decide course of treatment. On a troubling note, none of the treatment options are pleasurable! Let's just say I have to take steroids...but not by mouth. I'll leave the rest to your imagination!
If you're fascinated by the topic, please do read the Wikipedia entry on radiation proctitis...beware, there are pictures. As a librarian, it's my professional duty to provide information, yet it's up to you, the reader, to decide to read it. Don't say I didn't warn you!
Today was my 3 month check-up with my oncologist, Dr. Valea. I alternate every three months between him and my radiation oncologist, Dr. Jones. The appointment was pretty uneventful, although I now have to have a colonoscopy to see how much damage the radiation from last year actually did to my digestive track. I've been having symptoms ever since I had radiation, but didn't really think that much about it...until today. I assumed it was something I was just going to have to live with. Well, I was wrong! Fortunately there's treatment for the condition I have...chronic radiation proctitis(or colitis)...unfortunately I have to have a colonoscopy to determine amount of damage to help decide course of treatment. On a troubling note, none of the treatment options are pleasurable! Let's just say I have to take steroids...but not by mouth. I'll leave the rest to your imagination!
If you're fascinated by the topic, please do read the Wikipedia entry on radiation proctitis...beware, there are pictures. As a librarian, it's my professional duty to provide information, yet it's up to you, the reader, to decide to read it. Don't say I didn't warn you!
Tuesday, November 20, 2007
Pre-Turkey Day Thanks
It's that time of year where we pause, give thanks then eat too much food. I thought I'd try to give thanks before the food gets in the way and fogs my thoughts!
My list of things and people I'm thankful for are in no particular order, except I did save the best and most important for last!
I'm so grateful and thankful for my family of origin(that means the family I was born into)...I have the greatest, most supportive parents...ever. They love me unconditionally and accept me for who I am, quirks and all. The rest of my family, although we may have differing opinions or beliefs also love unconditionally. This family is where I learned how to laugh and that a sense of humor is vital in the world.
To my chosen family(that's the people in my life that aren't related by blood/marriage or the like, but play as an important role...if not sometimes a more important role...than my family of origin), you guys are my rock AND you all rock! (You all know who you are!!) We too, have some differences, but that's what makes the world a great place. Thank you ALL for the love and support you've given over the years and allowing me to be part of your lives.
To Cancer...thank you for your humbling experience. My life will only get better after battling you.
To all my various health care providers...you made my life more bearable this past year. A special shout out to Dr. Valea, Teri T, Dr. Bland and in GyneOnc; Dr. Marum; Dr. Jones and Jane in RadOnc; and all the cool nurses and volunteers in the Chemo Treatment room at Duke.
To everyone supporting Sofie's growth and progress a big THANK YOU. You've all loved and supported her in many ways and she's doing so well because of your influences. Special thanks to Dr Jane R, Mrs. Kelly, Mrs. Ewald and the entire team at Morehead Montessori(Sofie's wonderful elementary school) and everyone at Camp Kesem.
To everyone else, even the strangers reading this blog...thanks for showing up. I hope you've gleaned something useful or enjoyable from my heartfelt words and that you enjoy reading as much as I enjoy writing.
Now to the most important people in my life right now:
I'm thankful for the worlds greatest daughter. We are told over and over by so many different people in Sofie's life what a great kid she is. I want her to know how lucky I feel to be a part of that life. I'm looking forward to learning all she has to teach me. Thanks for putting a smile on my face each and every day.
The person that I want to give the biggest thanks to is Debra. This is the hardest, most bittersweet Thank You I'll ever do, that I am sure. I want to thank you for barreling forward with Sofie's adoption and allowing me to continue to raise and love our beautiful daughter. I feel like I've been given such a gift...and I promise I'll take care of that gift and give her all the love and support she can handle so she can grow into the fine young woman that we know she'll become.
I love you all and wish everyone a Happy Thanksgiving however you are celebrating.
My list of things and people I'm thankful for are in no particular order, except I did save the best and most important for last!
I'm so grateful and thankful for my family of origin(that means the family I was born into)...I have the greatest, most supportive parents...ever. They love me unconditionally and accept me for who I am, quirks and all. The rest of my family, although we may have differing opinions or beliefs also love unconditionally. This family is where I learned how to laugh and that a sense of humor is vital in the world.
To my chosen family(that's the people in my life that aren't related by blood/marriage or the like, but play as an important role...if not sometimes a more important role...than my family of origin), you guys are my rock AND you all rock! (You all know who you are!!) We too, have some differences, but that's what makes the world a great place. Thank you ALL for the love and support you've given over the years and allowing me to be part of your lives.
To Cancer...thank you for your humbling experience. My life will only get better after battling you.
To all my various health care providers...you made my life more bearable this past year. A special shout out to Dr. Valea, Teri T, Dr. Bland and in GyneOnc; Dr. Marum; Dr. Jones and Jane in RadOnc; and all the cool nurses and volunteers in the Chemo Treatment room at Duke.
To everyone supporting Sofie's growth and progress a big THANK YOU. You've all loved and supported her in many ways and she's doing so well because of your influences. Special thanks to Dr Jane R, Mrs. Kelly, Mrs. Ewald and the entire team at Morehead Montessori(Sofie's wonderful elementary school) and everyone at Camp Kesem.
To everyone else, even the strangers reading this blog...thanks for showing up. I hope you've gleaned something useful or enjoyable from my heartfelt words and that you enjoy reading as much as I enjoy writing.
Now to the most important people in my life right now:
I'm thankful for the worlds greatest daughter. We are told over and over by so many different people in Sofie's life what a great kid she is. I want her to know how lucky I feel to be a part of that life. I'm looking forward to learning all she has to teach me. Thanks for putting a smile on my face each and every day.
The person that I want to give the biggest thanks to is Debra. This is the hardest, most bittersweet Thank You I'll ever do, that I am sure. I want to thank you for barreling forward with Sofie's adoption and allowing me to continue to raise and love our beautiful daughter. I feel like I've been given such a gift...and I promise I'll take care of that gift and give her all the love and support she can handle so she can grow into the fine young woman that we know she'll become.
I love you all and wish everyone a Happy Thanksgiving however you are celebrating.
Tuesday, November 13, 2007
Change (from the perspective of a 7yo)
For the past 3 months, our family has been attending monthly KidsCan! meetings at Duke. These meeting are intended to provide emotional (and educational) support for kids in families where a parent(or in our case, parents) have been diagnosed with Cancer. Each month there's a new topic that is discussed separately with kids in one group and parents in another. At the end of the evening, the two groups come back together and a facilitator gives a brief synopsis of what each group discussed or activities in which they participated.
Last month, the kids got a tour of all the areas the parents might experience on a typical visit for treatment. They visited the clinic area and radiation and chemotherapy areas. They learned lots of great information and got a groovy goody bag at the end. This month, the topic was change and how it might be affecting the kids. The parents had a lively discussion of their concerns while the kids were having a "snowball" fight! Okay, it wasn't an actual snowball fight, but it sound fun, nonetheless.
Another activity the kids participated in was talking about changes that have occurred or might occur in certain age groups. They had big sheets of paper hanging up with age ranges on the top of the page. Parents were encouraged to go around and read the lists. I read with the intention of figuring out what Sofie had listed. Trust me, it wasn't hard! Under her current age, these were the two "changes" she listed: "I get to be the boss of my mom" and "I get to buy animals." What?!?! Which mom? My guess is she made the correlation of what changes have happened since Cancer entered our family...not just typical changes that have occurred in her life. I was impressed with a change she wanted to happen when she became 13...she wants to be a CIT(counselor in training)...I'm not sure if it's for Camp Kesem or Sportsplex. She's had great experiences with counselors at both, so it's hard to say. I'm just thrilled she's so into camp.
Change through the eyes of a spunky 7 year old can mean a number of things. I hope she holds onto to some of those since we're all in for more changes to come.
Last month, the kids got a tour of all the areas the parents might experience on a typical visit for treatment. They visited the clinic area and radiation and chemotherapy areas. They learned lots of great information and got a groovy goody bag at the end. This month, the topic was change and how it might be affecting the kids. The parents had a lively discussion of their concerns while the kids were having a "snowball" fight! Okay, it wasn't an actual snowball fight, but it sound fun, nonetheless.
Another activity the kids participated in was talking about changes that have occurred or might occur in certain age groups. They had big sheets of paper hanging up with age ranges on the top of the page. Parents were encouraged to go around and read the lists. I read with the intention of figuring out what Sofie had listed. Trust me, it wasn't hard! Under her current age, these were the two "changes" she listed: "I get to be the boss of my mom" and "I get to buy animals." What?!?! Which mom? My guess is she made the correlation of what changes have happened since Cancer entered our family...not just typical changes that have occurred in her life. I was impressed with a change she wanted to happen when she became 13...she wants to be a CIT(counselor in training)...I'm not sure if it's for Camp Kesem or Sportsplex. She's had great experiences with counselors at both, so it's hard to say. I'm just thrilled she's so into camp.
Change through the eyes of a spunky 7 year old can mean a number of things. I hope she holds onto to some of those since we're all in for more changes to come.
Monday, November 12, 2007
Who Dies?
I've been thinking a lot about dying lately...not my own death mind you, but dying. I've never been afraid of dying and I'm quite fascinated by the process both physically and spiritually that happens when one dies. Recently I was chatting with my very dear friend Rick. He's the coolest guy...ever...and he recommended a couple of books for me. They're both by the same author, Stephen Levine(and his wife Ondrea co-authors one of the books.) One is entitled, Who Dies? An Investigation of Conscious Living and Conscious Dying and the other is entitled, A Year to Live: How to Live This Year as If It Were Your Last. I ordered both books online and I began reading Who Dies? today.
The Table of Contents and the index of Who Dies? have me enthralled. I can't wait to dig deeper into this book and finish it so I can start the other book. The first book is to prepare me for what's to come with Debra. I'm the kind of person that likes information, so the more I have the more comfortable I'll be. The second book is more for me and how to live my life differently.
Conscious living and dying are only terms that I've encountered here and there. I've never read anything about it or even investigated it. Even though I'm not well versed in the topic, I can tell that my own beliefs include what's being discussed in this book. I'm anxious to expand on them to see where it takes me. Topics discussed include: Models of dying, Finishing Business, Grief, Heaven/Hell, Working with Pain, Approaching Death, Letting Go of Control, Stages of Dying and many more aspects. I intend to come out of the other side of this book mentally prepared for death. I know I'll still have stuff come up, but I want to be clear and full of ideas and be able to explain things to Sofie if/when she asks.
After I read it, I'll post more information, but for now, that's all I've got.
The Table of Contents and the index of Who Dies? have me enthralled. I can't wait to dig deeper into this book and finish it so I can start the other book. The first book is to prepare me for what's to come with Debra. I'm the kind of person that likes information, so the more I have the more comfortable I'll be. The second book is more for me and how to live my life differently.
Conscious living and dying are only terms that I've encountered here and there. I've never read anything about it or even investigated it. Even though I'm not well versed in the topic, I can tell that my own beliefs include what's being discussed in this book. I'm anxious to expand on them to see where it takes me. Topics discussed include: Models of dying, Finishing Business, Grief, Heaven/Hell, Working with Pain, Approaching Death, Letting Go of Control, Stages of Dying and many more aspects. I intend to come out of the other side of this book mentally prepared for death. I know I'll still have stuff come up, but I want to be clear and full of ideas and be able to explain things to Sofie if/when she asks.
After I read it, I'll post more information, but for now, that's all I've got.
Thursday, November 1, 2007
A waiting room's entertainment value
Hospital waiting rooms provide so much material for writing, it's almost not fair. Yesterday, I spent much of the day at Duke in the family waiting area for those scheduled for surgery. Posted all over the doors, entry ways and even provided in the pre-op information it is stated clearly for each patient to bring a maximum of two friends or family members...TWO. The waiting area consist of the lobby just off the elevators and a smallish waiting room. So why is it that I got stuck sitting with two families...one with SIX plus a baby and the other EIGHT family members?!?!
Let's start with the family of eight. Debra and I had moved to a room in the back of the waiting area after a woman(who by the way was having surgery) reeked of so much cigarette smoke that the already nauseous Debra was going to hurl at any moment. We were escorted by the front desk lady to a nice quiet room that only had one other person there...well at least for a few more minutes. Debra and I were quietly chatting when I looked up and in walked a small herd of what was later determined to be religious fundamentalists! Each person read the sign on the door that politely asked for their cooperation around the "no more than 2 family members" suggestion...I would say it was policy, but policy would mean that someone actually enforced it...which never happened. Each "family" member read, looked somewhat uncomfortable with the fact they were breaking a rule, then hastily retreated to the corner of our cozy room. Initially I thought it might be two or more patients, but then that all started the crosstalk that became my entertainment for the next few hours!
It was quickly made known that this "family" was from a small town south of the triangle. It's a town that, had my family been a bit less lucky, we would have been stationed after my dad finished Highway Patrol School. I could have ended up *just* like these people! Okay, that's a stretch because we did end up in a small town that's probably pretty similar to this small town and I think I escaped relatively unscathed. As I often do in group settings, I started sizing up this unit. Cultural Anthropology at it's best!
I was quite surprised that approximately 95% of their conversation centered around church. Going to church, how church has helped them, how someone is doing "so much better" because they started going to church. Singing in church, eating in church...heck for all I know these people LIVE in a church!! The oddest thing about this family...I'm about 99.9% sure two of the men there were a couple...a redneck couple, but a couple nonetheless!! How do I know...well one of them "shows" Boston Terriers...yeah, it's a stereotype but stereotypes exist for a reason!! I was just simply amazed at how much "church" was part of their life, too. I'm not talking mainstream liberal religion...I'm talking fundamentalist in the most strictest of ways. I certainly hope that I'm correct and that these two young men are accepted by their family for who they are. That would be a nice change of pace from the typical reaction of kicking family members to the curb or insisting they "straighten" out(pun intended.)
The second family really didn't give me much material. The all kind of made me laugh when the three guys in the group whipped out their laptops and proceeded to work/surf or do whatever. It was precision laptopping at it's best! Initially there were only 4 members, but apparently their preacher and two other family members and a baby were sitting in another area of the waiting room. It was crowded yesterday, so after Debra got out of surgery, I chatted with Dr. Bland and found out she was okay and what to expect, I went downstairs to the lobby...where NO one was sitting!
Debra is doing quite well from her biopsy. We won't know anything for a month or so, but that's okay. She's beginning her radiation sessions today. Thanks to everyone for continued support, love and care. Our little family needs it.
Let's start with the family of eight. Debra and I had moved to a room in the back of the waiting area after a woman(who by the way was having surgery) reeked of so much cigarette smoke that the already nauseous Debra was going to hurl at any moment. We were escorted by the front desk lady to a nice quiet room that only had one other person there...well at least for a few more minutes. Debra and I were quietly chatting when I looked up and in walked a small herd of what was later determined to be religious fundamentalists! Each person read the sign on the door that politely asked for their cooperation around the "no more than 2 family members" suggestion...I would say it was policy, but policy would mean that someone actually enforced it...which never happened. Each "family" member read, looked somewhat uncomfortable with the fact they were breaking a rule, then hastily retreated to the corner of our cozy room. Initially I thought it might be two or more patients, but then that all started the crosstalk that became my entertainment for the next few hours!
It was quickly made known that this "family" was from a small town south of the triangle. It's a town that, had my family been a bit less lucky, we would have been stationed after my dad finished Highway Patrol School. I could have ended up *just* like these people! Okay, that's a stretch because we did end up in a small town that's probably pretty similar to this small town and I think I escaped relatively unscathed. As I often do in group settings, I started sizing up this unit. Cultural Anthropology at it's best!
I was quite surprised that approximately 95% of their conversation centered around church. Going to church, how church has helped them, how someone is doing "so much better" because they started going to church. Singing in church, eating in church...heck for all I know these people LIVE in a church!! The oddest thing about this family...I'm about 99.9% sure two of the men there were a couple...a redneck couple, but a couple nonetheless!! How do I know...well one of them "shows" Boston Terriers...yeah, it's a stereotype but stereotypes exist for a reason!! I was just simply amazed at how much "church" was part of their life, too. I'm not talking mainstream liberal religion...I'm talking fundamentalist in the most strictest of ways. I certainly hope that I'm correct and that these two young men are accepted by their family for who they are. That would be a nice change of pace from the typical reaction of kicking family members to the curb or insisting they "straighten" out(pun intended.)
The second family really didn't give me much material. The all kind of made me laugh when the three guys in the group whipped out their laptops and proceeded to work/surf or do whatever. It was precision laptopping at it's best! Initially there were only 4 members, but apparently their preacher and two other family members and a baby were sitting in another area of the waiting room. It was crowded yesterday, so after Debra got out of surgery, I chatted with Dr. Bland and found out she was okay and what to expect, I went downstairs to the lobby...where NO one was sitting!
Debra is doing quite well from her biopsy. We won't know anything for a month or so, but that's okay. She's beginning her radiation sessions today. Thanks to everyone for continued support, love and care. Our little family needs it.
Tuesday, October 23, 2007
Clarity has arrived...for the time being
Sometimes I don't write because what I'm feeling or going through is intensely personal. Too personal to share, especially on a blog. If I need to share, I usually do with a few select friends in an email or conversation. I've been doing that a lot over the past few days. I had some insights and realizations over the weekend after having an appointment with one of my more spiritual advisers. I won't go into all we talked about, thus the preface in this entry. However, I will share some insights.
As I've stated recently, I've been feeling in limbo...caught between two places and not wanting to give up either. These two places consisted of two physical spaces as well as two distinct roles. The physical spaces, as you know, consist of my condo and Debra's house. Should I move in now or later...after, after? Should I keep going between two places...living in limbo? Should I figure out a happy medium that works for all of us? The two roles that I've been playing are clear, too. Caretaker of Sofie and caregiver to Debra. Both roles, even on the best of days are exhausting. Throw into the mix that I have a full time job that I'm skating on thin ice on and that just adds to the strife I sometimes feel.
As someone who tends to nurture by nature, the caregiver and caretaker roles are fulfilling and make me feel useful in a rotten situation. With that said, one important person is falling to the bottom of the to do list...ME!! To some, that may sound selfish. However if you really think about it, I need to take better care of me in order to better care for my family. Taking better care of me involves simple things like eating better, moving more and keeping tabs on my core feelings. Currently, exhaustion is a core feeling I'm having. Okay, I realize exhaustion isn't really a feeling...however it is effecting how I am in the world. So to work on the exhaustion will involve dealing with some internal feelings. Finding my clarity and purpose for the next however long we have is important not only for me, but for Debra and Sofie, too.
One bit of clarity that I had this weekend...and have discussed at length with Debra...is the role that I'm really intended for. What I realized was I'm best being utilized by being a caregiver/mother to Sofie. That's not to say that I'm not going to be a caregiver to Debra...it just means I have to prioritize better and others will have to step in as this process continues. I trust that Debra has such a deep and wide circle of friends that she will want for nothing as time progresses. I can't, nor do I want to trust that the same will happen with Sofie. She's becoming my responsibility more and more and I need to focus on her to make sure she comes out on the other side of things feeling loved, supported and cared for.
The other bit of clarity was about moving in with Debra. I don't think that will best serve anyone...especially Sofie. As time progresses I think both Sofie and I will need a place to go for respite. What better place than my condo? A haven that is already familiar and safe for both of us. As Debra's disease progresses, she'll need more assistance for her daily living. In order for that to happen, there needs to be a place where those who are visiting and assisting to rest and find their own retreat. In a house with only one extra bedroom, that extra space should be reserved for those caring for Debra. I continue to spend most evenings at Debra's house, assisting with homework, bath and bedtime. I even stay and hang out with Debra once Sofie is snug in her bed. I'll continue to do that as long as it works for all of us. Unfortunately at some point, they'll need to be others stepping in to be with Debra while I concentrate more of my energy on Sofie and her well-being.
As I've always done, I trust that the universe will provide those people to be there for Debra...allowing me to fully focus on Sofie. She and I will have our own grieving, processing and moving through all of this. I know we'll get through it and be okay on the other side of things...I'm just not necessarily looking forward to some of that journey.
As I've stated recently, I've been feeling in limbo...caught between two places and not wanting to give up either. These two places consisted of two physical spaces as well as two distinct roles. The physical spaces, as you know, consist of my condo and Debra's house. Should I move in now or later...after, after? Should I keep going between two places...living in limbo? Should I figure out a happy medium that works for all of us? The two roles that I've been playing are clear, too. Caretaker of Sofie and caregiver to Debra. Both roles, even on the best of days are exhausting. Throw into the mix that I have a full time job that I'm skating on thin ice on and that just adds to the strife I sometimes feel.
As someone who tends to nurture by nature, the caregiver and caretaker roles are fulfilling and make me feel useful in a rotten situation. With that said, one important person is falling to the bottom of the to do list...ME!! To some, that may sound selfish. However if you really think about it, I need to take better care of me in order to better care for my family. Taking better care of me involves simple things like eating better, moving more and keeping tabs on my core feelings. Currently, exhaustion is a core feeling I'm having. Okay, I realize exhaustion isn't really a feeling...however it is effecting how I am in the world. So to work on the exhaustion will involve dealing with some internal feelings. Finding my clarity and purpose for the next however long we have is important not only for me, but for Debra and Sofie, too.
One bit of clarity that I had this weekend...and have discussed at length with Debra...is the role that I'm really intended for. What I realized was I'm best being utilized by being a caregiver/mother to Sofie. That's not to say that I'm not going to be a caregiver to Debra...it just means I have to prioritize better and others will have to step in as this process continues. I trust that Debra has such a deep and wide circle of friends that she will want for nothing as time progresses. I can't, nor do I want to trust that the same will happen with Sofie. She's becoming my responsibility more and more and I need to focus on her to make sure she comes out on the other side of things feeling loved, supported and cared for.
The other bit of clarity was about moving in with Debra. I don't think that will best serve anyone...especially Sofie. As time progresses I think both Sofie and I will need a place to go for respite. What better place than my condo? A haven that is already familiar and safe for both of us. As Debra's disease progresses, she'll need more assistance for her daily living. In order for that to happen, there needs to be a place where those who are visiting and assisting to rest and find their own retreat. In a house with only one extra bedroom, that extra space should be reserved for those caring for Debra. I continue to spend most evenings at Debra's house, assisting with homework, bath and bedtime. I even stay and hang out with Debra once Sofie is snug in her bed. I'll continue to do that as long as it works for all of us. Unfortunately at some point, they'll need to be others stepping in to be with Debra while I concentrate more of my energy on Sofie and her well-being.
As I've always done, I trust that the universe will provide those people to be there for Debra...allowing me to fully focus on Sofie. She and I will have our own grieving, processing and moving through all of this. I know we'll get through it and be okay on the other side of things...I'm just not necessarily looking forward to some of that journey.
Friday, October 19, 2007
Friends of Wind River Newsletter-first edition!!
Please enjoy the first edition of the Friends of Wind River Newsletter lovingly created by Dave and Shannon, retreat facilitator's extraordinare!
This is from the folks who did the retreat I so very much enjoyed. I think you'll see a familiar face on the newsletter along with some of my words of wisdom. :-)
This is from the folks who did the retreat I so very much enjoyed. I think you'll see a familiar face on the newsletter along with some of my words of wisdom. :-)
Thursday, October 18, 2007
Overload in Pink
I've tried to hold it in, not blog about it, bite my tongue. I just can't anymore. This is not meant to offend my friends, family and others who have dealt with Breast Cancer. I respect that they have fought or are fighting this thing called Cancer, too. It's really more of a dig at the "corporatization"(is that even a word?) of a single illness. I'm guessing folks felt this way about AIDS in the 90s, but this whole pink thing is just rubbing me the wrong way!
Maybe it's because Debra is losing the battle with Ovarian Cancer. Maybe it's because there are so many other cancer's out there that need funding. Maybe it's because it's just over doing it on so many levels. I'm sure there some deeper meaning about why this is effecting me so much, but I don't have time to reflect on this. So instead, I'll just write about it.
On Tuesday, I accompanied Debra to her Gyne/Onc appointment. After standing there listening to all the things that are going wrong and listening to options to give her better quality of life and hopefully extend that life, I just blurted out to our nurse, "Are you guys as sick of the pink stuff as I am." She smiled and confirmed what I had been feeling since the end of September. You see, this all started with a little activity scheduled at work. Fortunately, I was at my retreat...with at least 4 breast cancer survivors!
Apparently, the company that makes Lee Jeans sponsored a National Denim Day to encourage folks to wear jeans(how convenient) and make a $5 donation to support breast cancer research. My employer took it even further and allowed anyone donating $20 to wear jeans the entire month of October. Initially, I was pleased that we were participating in something that was raising funds for cancer research...then I realized it was only for breast cancer research. It made me incredibly sad that breast cancer is getting so much press when Ovarian Cancer seems more likely to kill a woman.
Am I wrong to be upset? I hope not. I hope this feeling is seen as valid and not petty or bitter. Like I said, this isn't directed at the people who are affected by breast cancer, just the corporations who are trying to make a buck all in the name of a disease. I've recently been made aware of sites such as Think Before You Pink that "...calls for more transparency and accountability by companies that take part in breast cancer fundraising..." and points out corporate "pinkwashers." Pinkwashers are companies that give money to Breast Cancer causes while simultaneously make products that contribute to the disease.
Please continue to donate to whatever causes you feel are appropriate for you. Do your homework first and make sure the money is being spent wisely.
Maybe it's because Debra is losing the battle with Ovarian Cancer. Maybe it's because there are so many other cancer's out there that need funding. Maybe it's because it's just over doing it on so many levels. I'm sure there some deeper meaning about why this is effecting me so much, but I don't have time to reflect on this. So instead, I'll just write about it.
On Tuesday, I accompanied Debra to her Gyne/Onc appointment. After standing there listening to all the things that are going wrong and listening to options to give her better quality of life and hopefully extend that life, I just blurted out to our nurse, "Are you guys as sick of the pink stuff as I am." She smiled and confirmed what I had been feeling since the end of September. You see, this all started with a little activity scheduled at work. Fortunately, I was at my retreat...with at least 4 breast cancer survivors!
Apparently, the company that makes Lee Jeans sponsored a National Denim Day to encourage folks to wear jeans(how convenient) and make a $5 donation to support breast cancer research. My employer took it even further and allowed anyone donating $20 to wear jeans the entire month of October. Initially, I was pleased that we were participating in something that was raising funds for cancer research...then I realized it was only for breast cancer research. It made me incredibly sad that breast cancer is getting so much press when Ovarian Cancer seems more likely to kill a woman.
Am I wrong to be upset? I hope not. I hope this feeling is seen as valid and not petty or bitter. Like I said, this isn't directed at the people who are affected by breast cancer, just the corporations who are trying to make a buck all in the name of a disease. I've recently been made aware of sites such as Think Before You Pink that "...calls for more transparency and accountability by companies that take part in breast cancer fundraising..." and points out corporate "pinkwashers." Pinkwashers are companies that give money to Breast Cancer causes while simultaneously make products that contribute to the disease.
Please continue to donate to whatever causes you feel are appropriate for you. Do your homework first and make sure the money is being spent wisely.
Friday, October 12, 2007
It's OUT!!!
The surgery went great. The port is out without a hitch. Very easy procedure. I was barely sedated. Had a great team working on me. Very funny yet professional trio of a nurse, radiology tech and surgeon. The recovery nurse was somewhat of a hard ass, but I'm guessing that's her job!! She told me I couldn't email for 24 hours...as if!! Guess I shouldn't be blogging either?!?!
Earlier in the day I made sure Sofie knew how important and what this procedure meant. I even brought home the port to show her:
Purple extravaganza
I needed to make sure she knew how important this was and what it meant...I'm better, no longer sick! We "high fived" prior to me leaving yesterday morning so she'd "get it." I think she did!
Earlier in the day I made sure Sofie knew how important and what this procedure meant. I even brought home the port to show her:
Purple extravaganza
I needed to make sure she knew how important this was and what it meant...I'm better, no longer sick! We "high fived" prior to me leaving yesterday morning so she'd "get it." I think she did!
Wednesday, October 10, 2007
Protecting our children
With all that's going on in our lives, I've been somewhat clueless to what's happening in other people's lives. I feel pretty disconnected from many friends, especially friends with children. I've been thinking about why that is...other than the obvious time constraint issues. Are people avoiding us? Are we avoiding them?
This all became clearer for me recently after a friend was telling me how the blogs Debra and I write are affecting her relationship with her daughter. After spending nearly all day with them, I began to ponder on the drive home how all this is going to effect the children in our lives. Since focusing so much energy on how Debra's death will effect Sofie, I do understand what other parents must be going through.
Some children have already experienced a death of a family member or someone close, but most have not. So I find myself wondering, "How will this be for kids that know Debra through church, school, friends, family?" I realize it's not our responsibility to make sure your children aren't traumatized. I just wanted to acknowledge that I know it's hard for you, too. At some point there will be a lot of kids who aren't going to know how to deal with the news they've heard. I know each one of you will do what's best for your child...as I will do what's best for mine.
For those with children reading this, I have a great article that I can share that's about helping children cope with grief and loss. A well laid out article. Let me know if you're interested. (cybrarygrl at gmail dot com)
This all became clearer for me recently after a friend was telling me how the blogs Debra and I write are affecting her relationship with her daughter. After spending nearly all day with them, I began to ponder on the drive home how all this is going to effect the children in our lives. Since focusing so much energy on how Debra's death will effect Sofie, I do understand what other parents must be going through.
Some children have already experienced a death of a family member or someone close, but most have not. So I find myself wondering, "How will this be for kids that know Debra through church, school, friends, family?" I realize it's not our responsibility to make sure your children aren't traumatized. I just wanted to acknowledge that I know it's hard for you, too. At some point there will be a lot of kids who aren't going to know how to deal with the news they've heard. I know each one of you will do what's best for your child...as I will do what's best for mine.
For those with children reading this, I have a great article that I can share that's about helping children cope with grief and loss. A well laid out article. Let me know if you're interested. (cybrarygrl at gmail dot com)
Monday, October 8, 2007
A great kid named Sofie
I promise I'll write more on my retreat experience, but this isn't an entry about that. This is an entry about what a great kid Sofie is and about what a hard time she's having with Debra's illness.
Homework started this past week for our dear Sofie. She's not a big fan of having to do work at home since she works so hard during the day to get her classwork done. Being super nerd that I am, I was kind of excited about the new way homework was being organized and presented to the lower elementary kids at Sofie's school. All the kids in each grade level 1-3 were given a binder with the entire years homework enclosed. For 2nd graders, homework consists of spelling, reading and math. It gives parents the chance to prepare a little more for homework.
Purely by accident, I introduced SchoolHouse Rock to her. We were "high fiving" when I continued on with counting in FIVES. (I actually hadn't realized that this was part of her math homework!) As I was saying, "5, 10, 15, 20..." the SchoolHouse Rock segment of Fives popped into my head. Since my video collection of these are actually video tapes, I figured we could find them on You Tube. I was correct in that assumption, so we watched a few online. She enjoyed them. If she only knew how much I relied on those to learn things like the preamble to the Constitution, the reason for the American Revolution, and how a Bill is introduced and it's path to becoming a law! Now many parents of my generation are using what we loved as kids to educate our own children. It's even cooler that they get 24/7 access when we had to wait until Saturday morning. The wonders of DVDs!!
Sofie's still lacking some basic self confidence around many aspects of learning. From what I've been reading, much of this is tied to the ADHD as that is one of the "signs" in girls. She is noticing that her "concentration pill" (Debra's term, not mine!) is helping her get her work done during each day, allowing her to participate in Fun Friday. Hey, everyone's gotta have goals!
Saturday, after a long day including a play date, scootering in the park and dinner at Sharon and Tracey's Sofie and I had another one of those "Mama Jamie/Sofie moments" discussing what's going on with Debra. We're in car after leaving the dinner party when we get into a conversation about something I can't recall. The talk evolved into Sofie making the statement that included, "when Mama Debra finishes treatment." I replied, "Honey, Mama Debra is never going to be finished with treatment." (I know that's not true, but didn't want to go into the discussion of what actually will happen if and when Mama Debra stops treatment.) "Whaaat? Whhhhyy?!?!" was her emotional reply. I could literally hear the pain and confusion in her voice. I teared up thinking of the best way to answer this plea. In my strongest, most confident voice I said,
"Honey, we don't want Mama Debra to be finished with treatment. She's having treatment to try to keep the Cancer out of her body."
"Mommy, Mama Debra has had Cancer TWO TIMES!!" she replies.
"Actually honey, it's the same Cancer."
And then in a rambling that I know was too much information, I tried to explain how Mama Debra's body just isn't responding to the treatment and how most people do, but a small percentage don't. I reiterated that my body did, so I'm okay.
Sofie got really quiet. I looked in the rear view mirror and saw a sad, confused girl. I asked her if this made her sad. Quietly, she responded, "Yeah." Then in the way that kids do, she changed the subject to a benign topic.
She had a pretty fitful night of sleep that evening. I wonder what she dreamed about?
My girl is taking care of herself the best way she can. I'm doing all I can to support her in this journey. I know we'll all come out okay, I'm not looking forward to the last part of this ride.
Homework started this past week for our dear Sofie. She's not a big fan of having to do work at home since she works so hard during the day to get her classwork done. Being super nerd that I am, I was kind of excited about the new way homework was being organized and presented to the lower elementary kids at Sofie's school. All the kids in each grade level 1-3 were given a binder with the entire years homework enclosed. For 2nd graders, homework consists of spelling, reading and math. It gives parents the chance to prepare a little more for homework.
Purely by accident, I introduced SchoolHouse Rock to her. We were "high fiving" when I continued on with counting in FIVES. (I actually hadn't realized that this was part of her math homework!) As I was saying, "5, 10, 15, 20..." the SchoolHouse Rock segment of Fives popped into my head. Since my video collection of these are actually video tapes, I figured we could find them on You Tube. I was correct in that assumption, so we watched a few online. She enjoyed them. If she only knew how much I relied on those to learn things like the preamble to the Constitution, the reason for the American Revolution, and how a Bill is introduced and it's path to becoming a law! Now many parents of my generation are using what we loved as kids to educate our own children. It's even cooler that they get 24/7 access when we had to wait until Saturday morning. The wonders of DVDs!!
Sofie's still lacking some basic self confidence around many aspects of learning. From what I've been reading, much of this is tied to the ADHD as that is one of the "signs" in girls. She is noticing that her "concentration pill" (Debra's term, not mine!) is helping her get her work done during each day, allowing her to participate in Fun Friday. Hey, everyone's gotta have goals!
Saturday, after a long day including a play date, scootering in the park and dinner at Sharon and Tracey's Sofie and I had another one of those "Mama Jamie/Sofie moments" discussing what's going on with Debra. We're in car after leaving the dinner party when we get into a conversation about something I can't recall. The talk evolved into Sofie making the statement that included, "when Mama Debra finishes treatment." I replied, "Honey, Mama Debra is never going to be finished with treatment." (I know that's not true, but didn't want to go into the discussion of what actually will happen if and when Mama Debra stops treatment.) "Whaaat? Whhhhyy?!?!" was her emotional reply. I could literally hear the pain and confusion in her voice. I teared up thinking of the best way to answer this plea. In my strongest, most confident voice I said,
"Honey, we don't want Mama Debra to be finished with treatment. She's having treatment to try to keep the Cancer out of her body."
"Mommy, Mama Debra has had Cancer TWO TIMES!!" she replies.
"Actually honey, it's the same Cancer."
And then in a rambling that I know was too much information, I tried to explain how Mama Debra's body just isn't responding to the treatment and how most people do, but a small percentage don't. I reiterated that my body did, so I'm okay.
Sofie got really quiet. I looked in the rear view mirror and saw a sad, confused girl. I asked her if this made her sad. Quietly, she responded, "Yeah." Then in the way that kids do, she changed the subject to a benign topic.
She had a pretty fitful night of sleep that evening. I wonder what she dreamed about?
My girl is taking care of herself the best way she can. I'm doing all I can to support her in this journey. I know we'll all come out okay, I'm not looking forward to the last part of this ride.
Tuesday, October 2, 2007
Retreat wrap up
This past weekend I was very fortunate to be able to attend a wonderful Cancer Wellness Retreat in the foothills of NC. From my perspective, they were as much in the mountains as they needed to be. Shannon and Dave, the retreat facilitators have a beautiful home and surroundings that they lovingly shared with us. I came home with many wonderful memories that will stay with me and let me know there's more to life than chaos.
The main house surrounded by nature.
I enjoyed much time sitting by the creek.
This particular retreat was designed for those who have had or those who have cancer. We had a wonderful balance of those being treated and those who have completed treatment. On a funny side note, upon receiving my application request Shannon took a look at my blog...which is always in my email signature. She didn't read much of it and to be honest I wasn't very clear in my email, so she quickly became under the impression that I was the caregiver to Debra and not a cancer patient/survivor myself! She told me she had to figure out how to delicately tell me the retreat wasn't for caregivers, but folks who had cancer. After receiving a very kind email back from her, reminding me the retreat was for cancer patients, I responded and informed her that I had, indeed, had cancer too!! I'm so glad the clarification happened and I was treated to a wonderful weekend in nature.
One of my favorite activities was walking the grounds of their home. Dave had placed thoughtful, funny, encouraging signs for us to encounter on our outings. Sofie had asked where I was going, so I explained that I was going to an adult version of Camp Kesem. She beamed and said, so you get to play all weekend?!? So naturally I thought of her when I encountered this sign:
She was somewhat disappointed when she asked if we'd had a food fight and my answer was "No." I did tell her of my other favorite activity, painting with watercolors while sitting on rocks "in" the creek! I added that we were going to get some paints, head to the Eno River and paint ourselves silly. She was more excited for me after that! I guess I did have fun...in the eyes of a 7 year old.
Another perk that's coming out of the retreat is a possible new play date buddy. One of the attendees actually lives very close to me. She has a son who sounds like is cut from the same cloth as Sofie. We're going to try a play date and see if the kids get along as well as the moms did! We drove to the retreat together and I can honestly say we didn't stop talking until we arrived at our destination. She was amused that I "Googled" her to find out if we'd be compatible to ride 4 hours in the car. I was just making sure she hadn't published some manifesto against homosexuality or the likes. Luckily she hadn't, so we had a fun time driving and chatting. I think the kids will get along great. I'll let you know how it works out!
The main house surrounded by nature.
I enjoyed much time sitting by the creek.
This particular retreat was designed for those who have had or those who have cancer. We had a wonderful balance of those being treated and those who have completed treatment. On a funny side note, upon receiving my application request Shannon took a look at my blog...which is always in my email signature. She didn't read much of it and to be honest I wasn't very clear in my email, so she quickly became under the impression that I was the caregiver to Debra and not a cancer patient/survivor myself! She told me she had to figure out how to delicately tell me the retreat wasn't for caregivers, but folks who had cancer. After receiving a very kind email back from her, reminding me the retreat was for cancer patients, I responded and informed her that I had, indeed, had cancer too!! I'm so glad the clarification happened and I was treated to a wonderful weekend in nature.
One of my favorite activities was walking the grounds of their home. Dave had placed thoughtful, funny, encouraging signs for us to encounter on our outings. Sofie had asked where I was going, so I explained that I was going to an adult version of Camp Kesem. She beamed and said, so you get to play all weekend?!? So naturally I thought of her when I encountered this sign:
She was somewhat disappointed when she asked if we'd had a food fight and my answer was "No." I did tell her of my other favorite activity, painting with watercolors while sitting on rocks "in" the creek! I added that we were going to get some paints, head to the Eno River and paint ourselves silly. She was more excited for me after that! I guess I did have fun...in the eyes of a 7 year old.
Another perk that's coming out of the retreat is a possible new play date buddy. One of the attendees actually lives very close to me. She has a son who sounds like is cut from the same cloth as Sofie. We're going to try a play date and see if the kids get along as well as the moms did! We drove to the retreat together and I can honestly say we didn't stop talking until we arrived at our destination. She was amused that I "Googled" her to find out if we'd be compatible to ride 4 hours in the car. I was just making sure she hadn't published some manifesto against homosexuality or the likes. Luckily she hadn't, so we had a fun time driving and chatting. I think the kids will get along great. I'll let you know how it works out!
Thursday, September 20, 2007
Tears of concern
Sofie's teacher recently emailed to let us know that Sofie had been whiny, emotional and inconsolable of late. We chalked it up to being a side effect of her new ADHD medication and said we'd check in with her doctor on her next appointment. I also forwarded the information on to Sofie's therapist, to see if she could shed some light on the situation. Boy, did she enlighten me tonight.
It seems that our little miss is concerned that "something" is going to happen while she's at school. That "something" being related to mine or Debra's health. You may remember that when she was at Camp Kesem, her bunk mate's father died while she was at camp. That memory has stuck with Sofie and anxiety is building in her little psyche. Her therapist also noted that her "play" during therapy was way too organized for Sofie. She said that she's hyper-organizing to keep order in her life...a sure sign of anxiety. Her recommendation...encourage messiness in play!! I certainly don't mind that, heck I'm a great role model for clutter and chaos. Debra will probably have a harder time with that one.
The important lesson with all of this is that it's still very important for us to be as upfront and honest as we can with Sofie. Her strength, security and stability come partially from the fact that we've been so forthcoming with her. She knows that Mama Debra isn't getting better and that she may have to be treatments forever. We haven't had a more serious talk than that, yet. I'm sure we'll have many more discussions with her and help her try to make sense of it all. Hell, we need to try to help US make sense of it all. Our girl is becoming so grown up and clued into what's happening.
It seems that our little miss is concerned that "something" is going to happen while she's at school. That "something" being related to mine or Debra's health. You may remember that when she was at Camp Kesem, her bunk mate's father died while she was at camp. That memory has stuck with Sofie and anxiety is building in her little psyche. Her therapist also noted that her "play" during therapy was way too organized for Sofie. She said that she's hyper-organizing to keep order in her life...a sure sign of anxiety. Her recommendation...encourage messiness in play!! I certainly don't mind that, heck I'm a great role model for clutter and chaos. Debra will probably have a harder time with that one.
The important lesson with all of this is that it's still very important for us to be as upfront and honest as we can with Sofie. Her strength, security and stability come partially from the fact that we've been so forthcoming with her. She knows that Mama Debra isn't getting better and that she may have to be treatments forever. We haven't had a more serious talk than that, yet. I'm sure we'll have many more discussions with her and help her try to make sense of it all. Hell, we need to try to help US make sense of it all. Our girl is becoming so grown up and clued into what's happening.
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