In 2008 I received a facebook message from my cousin. My cousin, whom I will call Sue, was someone I could safely refer to as a "facebook acquaintance". We hadn't seen each other since her grandmother's funeral a decade before and for several years prior to that. Our childhoods were intertwined with shared memories of shared people but our own adult relationship was very limited.
This facebook message was brief and to the point. Sue was dying of kidney failure and needed a transplant and if anyone of her friends or family wished to be considered a transplant donor, please call this number at the hospital for a donor interest package.
I am not sure what prompted me to pick up the phone and all the Transplant Unit that day but I did. There was that organ donor sticker that had been on my license since I first learned to drive and my personal horror of the idea that two little girls were facing a future without a mother but no matter what I picked up the phone and called. Of the two hundred people she sent that message to, only two of us did and the other never completed the process.
Becoming an organ donor is no easy feat. There are multiple medical tests to complete and more paperwork than applying for college. Every glitch in your family history is examined and the health of your parents and siblings reported and discussed. (An adoption note: An adoptee without birth parent contact would not even be considered). Everything from wanting to have more children to trying to predict your genetic predispositions for a variety of diseases is examined.
On top of that, I have yet to meet a potential donor that hasn't met a lot of resistance from family and friends. Other than from my husband who was unfailingly supportive of his nutty wife's plan, EVERYONE I spoke to questioned my decision and repeatedly asked me why. WHY? It wasn't like Sue was part of my life regularly? Why put my own health at risk? What about recovery? Why? Why? Why?
My only answer? I knew I had to. I knew deep in my soul I was supposed to walk this journey out. Deeply and with assurance I knew God was asking me to simply be willing. I do not say that lightly or flippantly. It was something outside of my own desires or plan and I knew, very peacefully, that I needed to be willing was to continue with the tests, fill out the forms and make my way to Vancouver for more invasive tests. Was it easy? No way! It took time I didn't really have and money that was tight. At times it was overwhelming and at times I questioned my own sanity. But I did it.
Most of you know how this story ends, at least for me. In that final test to be a kidney donor it was discovered I had kidney cancer. No symptoms and no signs. I would have never, ever known. The average life expectancy for those who are diagnosed with my form of kidney cancer? 4 months. FOUR MONTHS. You know why that is? It is because normally you don't find out you have kidney cancer until you have symptoms, and if you have symptoms, usually it is too late. Being willing to be a donor, that deep, calm knowing that I had to walk through the door saved my own life. Listening to that still small voice saved my life.
I have laid awake at night and wondered what would have happened if I had just not picked up the phone? What would have happened if I had forgotten to fill out the hundreds of pages of forms? What if the delay in booking an ultra sound turned into forever? What if I had been rejected because of my family history of diabetes? Sometimes the "what ifs" sneak in but mostly I am thankful I listened and obeyed.
At the very last step of the process, at literally the very last moment, I was eliminated from being a donor. Hearing the word "Cancer" that April day was not just devastating to me, but also to my cousin Sue and her family. What was blip (ok a giant speed bump) in my life was a death sentence for her. No transplant. No donor. No back ups.
Sue and her family were unfailingly gracious to me. Thankful that my life was saved. Thankful I had been willing to even try. I am sure they were devastated and scared for their own loved one, but they never ever placed any blame on to me. Life went back to normal for them as they waited and hoped for a donor while Sue had daily dialysis and struggled with ever failing health.
I came home and prepared for and then recovered from the surgery that saved my own life. Through it all I had the support of my friend Colleen. One day Colleen asked me for the number of the Transplant Unit. My response was very similar to that which my own friends and family had said to me.
"ARE YOU NUTS?"
Colleen had never met Sue and in fact had never even seen a picture of her. There was no connection, no obligation, no REASON. No reason except that Colleen too was hearing that still small voice that told her to walk through the door.
Yesterday Colleen gave her kidney to Sue. Within minutes that little one pound organ that brought me so much angst gave life again to Sue. Her willingness has given two little girls a mommy to raise them. Her willingness has given health to a woman who has not felt healthy in years.
And so I am thankful that I can write an end to this story that goes beyond myself. What is that still small voice asking you to do today? Are you willing? What will happen if you obey? What will happen if you don't?
Showing posts with label kidney cancer. Show all posts
Showing posts with label kidney cancer. Show all posts
Tuesday, January 12, 2010
Thursday, November 12, 2009
Would have been money well spent!
So there was the cancer. Then there was the surgery. Then there was the follow up CT Scan.
Now my Most Amazing Kidney Surgeon had asked me to do the follow up CT Scan in Vancouver back at the same hospital that my original was taken. That hospital is 7 hours away. I have alot of kids and alot of juggling to get there. There were gas costs that I can't afford right now and well, it was just easier to have my CT Scan done up five minutes down the road at our local hospital with a different radiologist and have my family doctor take a look at the results.
So I took the path of least resistance and had it done last Friday, here.
Then there was the heart stopping phone call from the doctor's office that they had found a 2 cm lesion on my liver. And of course the reassurance "not to worry, but please go for further tests as soon as possible".
THAT is not the sort of news you want to get. Especially when you know way, way, way too much about how horrible, awful, and most importantly terminal any sort of cancerous lesion on your liver is. And you have just watched someone you love go through a brutal session of chemo to treat their own liver cancer. And you have a sister who has to deal with a reality of a father and a sister with liver cancer issues.
Needless to say the last few days have been ROUGH. R-O-U-G-H.
We didn't tell the kids. I really just could not until we knew more. Which is probably a good thing.
A miss-read of the original CT Scan Report meant that my family doctor missed the fact that this "lesion" was ALREADY on my liver back before the cancer surgery. This lesion that I have been FREAKING THE HECK OUT ABOUT was already examined and determined to be absolutely nothing of any significance. It's the same dang lesion. And they didn't figure it out until a rather weepy me asked my doctor in his office TODAY to double check.
Ooooops.
Future lesson: The $150 in gas would have been a SMALL price to pay for the absolute terror I have been living in the last few days.
For those of you that knew what was going on and picked up the jiggling pieces of terrified me. THANK YOU.
Now my Most Amazing Kidney Surgeon had asked me to do the follow up CT Scan in Vancouver back at the same hospital that my original was taken. That hospital is 7 hours away. I have alot of kids and alot of juggling to get there. There were gas costs that I can't afford right now and well, it was just easier to have my CT Scan done up five minutes down the road at our local hospital with a different radiologist and have my family doctor take a look at the results.
So I took the path of least resistance and had it done last Friday, here.
Then there was the heart stopping phone call from the doctor's office that they had found a 2 cm lesion on my liver. And of course the reassurance "not to worry, but please go for further tests as soon as possible".
THAT is not the sort of news you want to get. Especially when you know way, way, way too much about how horrible, awful, and most importantly terminal any sort of cancerous lesion on your liver is. And you have just watched someone you love go through a brutal session of chemo to treat their own liver cancer. And you have a sister who has to deal with a reality of a father and a sister with liver cancer issues.
Needless to say the last few days have been ROUGH. R-O-U-G-H.
We didn't tell the kids. I really just could not until we knew more. Which is probably a good thing.
A miss-read of the original CT Scan Report meant that my family doctor missed the fact that this "lesion" was ALREADY on my liver back before the cancer surgery. This lesion that I have been FREAKING THE HECK OUT ABOUT was already examined and determined to be absolutely nothing of any significance. It's the same dang lesion. And they didn't figure it out until a rather weepy me asked my doctor in his office TODAY to double check.
Ooooops.
Future lesson: The $150 in gas would have been a SMALL price to pay for the absolute terror I have been living in the last few days.
For those of you that knew what was going on and picked up the jiggling pieces of terrified me. THANK YOU.
Thursday, November 5, 2009
Facing the Beast
That is a picture of my kidney taken in March of this year. If you know what you are looking for you can apparently see the cancer.Tomorrow I go back in to have another picture taken. My first since surgery removed the cancer.
My life is so busy I actually almost forgot about the appointment until this minute. But I never, ever REALLY forget. Always, every single day it's at the back of my mind. Every ache, ever pain, every twinge. I trusted my body and it betrayed me and now I can't trust it at all.
Please God, please let it be clear. It just can't have come back. It just can't.
Thursday, September 3, 2009
And Your World Stops
I was asked to be a beta tester on a new Cancer Support site (I will tell you about it more later) and to share my story. Here is the little article I wrote about my experience with diagnosis.
And Your World Stops - Cancer. ME?
by Jensboys
Spring Break 2009. Life was normal. Our old normal anyways. I am not sure I will ever forget that week. My husband and I took our four sons to a hockey tournament our oldest was playing in. My sister, her sons, my mother, our two dogs all crammed into a couple of hotel rooms. Silliness, jokes, long walks on a beach between games.
When the tournament was over we returned to my sister’s home, over tired and with lots of laundry, we were surprised by the unexpected visit of my dad. He took my sister and I out for supper, alone. The first time in the entire 15 years I had been married that I was alone with my sister and my father. We ate and laughed and shared crazy stories about our sons, my father’s beloved grandchildren. As we drove away from the restaurant my dad pulled over, and with tears in his eyes told us he had been diagnosed with terminal colon cancer in his liver. 9 months. N-I-N-E months.
We hugged, we sobbed. We questioned. We recoiled in horror. We had to tell our husbands, our children. My dad, my precious, young father with CANCER? I could not, I cannot imagine life without him.
That was a Friday, and the next Wednesday I dragged my emotional, exhausted self into the hospital for the final stage of kidney donation testing. Many months before I had begun the process to donate my kidney to my cousin. I explained the situation to the surgeons, social workers and nurses sent to examine me. I told them about my dad and his cancer. I said I didnt know if I could still proceed with the donation process, but I did want to finish the testing. They agreed to proceed and I had a CT Scan and a Nuclear Renalgram the next day.
My family and I left my sister’s home exactly one week after hearing about my father’s cancer. Its a long drive with 4 kids, over six hours and there was so much to process, so many tears to shed. The next day my beloved grandmother, my support, my friend, the rock of my world, died.
In one week I had heard I would be probably losing my father within the year, and lost the woman who had been my biggest support and cheer leader. I shattered. Sobbing, I held my husband and said I could handle no more. No more. My world was falling apart.
I returned to my sister’s home alone, leaving my 4 sons with my husband. We were responsible for planning my grandmother’s funeral and the executors of her will. There were 10,000 details to plan. Pictures for the video, music to be selected, family to call, eulogies to write. It was overwhelming and sad. Clinging to each other, my sister and I relied on each other in a way only sisters can.
Donating my kidney was far from my mind in the midst of this trauma and loss. Grief and fear were consuming my thoughts. Thursday morning, as my sister and I drove to the lawyer’s office my surgeon called and left a message on my cell phone. I listed to the voice mail as we pulled into the parking lot. It was urgent, he needed to speak with me immediately. I returned his call.
My sister frantically called our mother as she listened to my half of the phone call. Tumor in my kidney. Cancer. Come into the hospital as soon as possible.
I slid into shock. There I sat in the lawyer’s office signing documents for the death of my grandmother. My dad was dying and I had cancer. CANCER. Me? Only a week before that same surgeon had said I was in “ideal health” and a “perfect donor”.
Between signing papers as the lawyer ran out of the room to make photocopies I called my husband. I called my dad. I called a friend. Unemotional, calm, and totally in shock.
My husband left work, grabbed our sons from school and made the 6 hour drive in 5. I really could not even talk about it, and I certainly could not process it.
8 am Friday morning my husband and I entered the hospital doors. We ran into the surgeon in the elevator. You know its not good when they don’t make eye contact and although agknowledging us, he never once smiled. My palms dripped with sweat as I clung to my husband’s hand.
I sat in that office chair, where I had sat only a week before as the “Healthy Donor”. I sat there as the patient. The patient with cancer. My CT image on the screen over his shoulder he explained that the tests had discovered a tumor on my left kidney. A small tumor, but cancer none the less.
“Renal Cell Carcinoma”. I am not sure I had ever heard those words before, but they became ingrained in my mind at that moment. I don’t remember much except that the doctor kept saying he was sorry. Sorry it was there, sorry I was dealing with this, so, so sorry.
There are no real treatment options for RCC other than surgery, or so I was told. We left that office with the knowledge that I would be shortly scheduled for surgery.
The next day I buried my grandma. The next day I read her eulogy. The next day I told my extended family I too had cancer. Too raw to really feel, I ached to connect with this act of saying goodbye to a woman I would miss every day the rest of my life, well at the same time fearing for my own death with every breath.
There is no greater horror I have experienced as a parent than I did the day I sat my sons down to tell them that I too had cancer. The same 14 year old who had just been told his grandfather was seriously ill, the same 13 year old who was scared beyond belief at the changes happening around him, the same 11 year old who had held his dying great grandmother’s hand to tell her he loved her, and my precious 8 year old who wiped my tears as his own fell into his lap. My sons, eyes filled with fear, being told that their mother had cancer too.
We made it sound like it was slightly more serious than your common cold. “Mommy will be fine”. “Mommy will be fine”. “Mommy WILL be fine”. But kids know what cancer means. The Terry Fox run they participate in every year has taught them enough. People with cancer are sick. People with cancer die. And truly a part of me died that day along with their innocence that parents live forever and really bad things never happen to us.
My tumor came out on May 11. Stage 1 Grade 2 RCC. I am extremely lucky. An asymptomatic cancer was in me, a 35 year old woman with absolutely no risk factors. I would have never, ever, ever known until it was too late except for the fact I decided to try to donate my kidney. That act to safe another, saved my own life.
Life has gone on. One week after getting home from the hospital we very unexpectedly added two baby girls to our family, then aged 2 months and 12 months. 6 kids have forced me to keep on, to heal, to move forward and to leave the kidney cancer behind me.
My dad responded beyond our wildest dreams to the chemo offerred to him. His doctor suddenly is talking in years versus months.
I have a 90% chance of being alive in 5 years, maybe more if you factor in my age and health. And still, late at night, or with every new ache I wonder. Growing old is no longer my right, I realize, but hopefully, God willing, it will be my privilege.
Thanks for reading,
Jen
And Your World Stops - Cancer. ME?
by Jensboys
Spring Break 2009. Life was normal. Our old normal anyways. I am not sure I will ever forget that week. My husband and I took our four sons to a hockey tournament our oldest was playing in. My sister, her sons, my mother, our two dogs all crammed into a couple of hotel rooms. Silliness, jokes, long walks on a beach between games.
When the tournament was over we returned to my sister’s home, over tired and with lots of laundry, we were surprised by the unexpected visit of my dad. He took my sister and I out for supper, alone. The first time in the entire 15 years I had been married that I was alone with my sister and my father. We ate and laughed and shared crazy stories about our sons, my father’s beloved grandchildren. As we drove away from the restaurant my dad pulled over, and with tears in his eyes told us he had been diagnosed with terminal colon cancer in his liver. 9 months. N-I-N-E months.
We hugged, we sobbed. We questioned. We recoiled in horror. We had to tell our husbands, our children. My dad, my precious, young father with CANCER? I could not, I cannot imagine life without him.
That was a Friday, and the next Wednesday I dragged my emotional, exhausted self into the hospital for the final stage of kidney donation testing. Many months before I had begun the process to donate my kidney to my cousin. I explained the situation to the surgeons, social workers and nurses sent to examine me. I told them about my dad and his cancer. I said I didnt know if I could still proceed with the donation process, but I did want to finish the testing. They agreed to proceed and I had a CT Scan and a Nuclear Renalgram the next day.
My family and I left my sister’s home exactly one week after hearing about my father’s cancer. Its a long drive with 4 kids, over six hours and there was so much to process, so many tears to shed. The next day my beloved grandmother, my support, my friend, the rock of my world, died.
In one week I had heard I would be probably losing my father within the year, and lost the woman who had been my biggest support and cheer leader. I shattered. Sobbing, I held my husband and said I could handle no more. No more. My world was falling apart.
I returned to my sister’s home alone, leaving my 4 sons with my husband. We were responsible for planning my grandmother’s funeral and the executors of her will. There were 10,000 details to plan. Pictures for the video, music to be selected, family to call, eulogies to write. It was overwhelming and sad. Clinging to each other, my sister and I relied on each other in a way only sisters can.
Donating my kidney was far from my mind in the midst of this trauma and loss. Grief and fear were consuming my thoughts. Thursday morning, as my sister and I drove to the lawyer’s office my surgeon called and left a message on my cell phone. I listed to the voice mail as we pulled into the parking lot. It was urgent, he needed to speak with me immediately. I returned his call.
My sister frantically called our mother as she listened to my half of the phone call. Tumor in my kidney. Cancer. Come into the hospital as soon as possible.
I slid into shock. There I sat in the lawyer’s office signing documents for the death of my grandmother. My dad was dying and I had cancer. CANCER. Me? Only a week before that same surgeon had said I was in “ideal health” and a “perfect donor”.
Between signing papers as the lawyer ran out of the room to make photocopies I called my husband. I called my dad. I called a friend. Unemotional, calm, and totally in shock.
My husband left work, grabbed our sons from school and made the 6 hour drive in 5. I really could not even talk about it, and I certainly could not process it.
8 am Friday morning my husband and I entered the hospital doors. We ran into the surgeon in the elevator. You know its not good when they don’t make eye contact and although agknowledging us, he never once smiled. My palms dripped with sweat as I clung to my husband’s hand.
I sat in that office chair, where I had sat only a week before as the “Healthy Donor”. I sat there as the patient. The patient with cancer. My CT image on the screen over his shoulder he explained that the tests had discovered a tumor on my left kidney. A small tumor, but cancer none the less.
“Renal Cell Carcinoma”. I am not sure I had ever heard those words before, but they became ingrained in my mind at that moment. I don’t remember much except that the doctor kept saying he was sorry. Sorry it was there, sorry I was dealing with this, so, so sorry.
There are no real treatment options for RCC other than surgery, or so I was told. We left that office with the knowledge that I would be shortly scheduled for surgery.
The next day I buried my grandma. The next day I read her eulogy. The next day I told my extended family I too had cancer. Too raw to really feel, I ached to connect with this act of saying goodbye to a woman I would miss every day the rest of my life, well at the same time fearing for my own death with every breath.
There is no greater horror I have experienced as a parent than I did the day I sat my sons down to tell them that I too had cancer. The same 14 year old who had just been told his grandfather was seriously ill, the same 13 year old who was scared beyond belief at the changes happening around him, the same 11 year old who had held his dying great grandmother’s hand to tell her he loved her, and my precious 8 year old who wiped my tears as his own fell into his lap. My sons, eyes filled with fear, being told that their mother had cancer too.
We made it sound like it was slightly more serious than your common cold. “Mommy will be fine”. “Mommy will be fine”. “Mommy WILL be fine”. But kids know what cancer means. The Terry Fox run they participate in every year has taught them enough. People with cancer are sick. People with cancer die. And truly a part of me died that day along with their innocence that parents live forever and really bad things never happen to us.
My tumor came out on May 11. Stage 1 Grade 2 RCC. I am extremely lucky. An asymptomatic cancer was in me, a 35 year old woman with absolutely no risk factors. I would have never, ever, ever known until it was too late except for the fact I decided to try to donate my kidney. That act to safe another, saved my own life.
Life has gone on. One week after getting home from the hospital we very unexpectedly added two baby girls to our family, then aged 2 months and 12 months. 6 kids have forced me to keep on, to heal, to move forward and to leave the kidney cancer behind me.
My dad responded beyond our wildest dreams to the chemo offerred to him. His doctor suddenly is talking in years versus months.
I have a 90% chance of being alive in 5 years, maybe more if you factor in my age and health. And still, late at night, or with every new ache I wonder. Growing old is no longer my right, I realize, but hopefully, God willing, it will be my privilege.
Thanks for reading,
Jen
Tuesday, August 11, 2009
An Anniversary of Sorts
It's three months since my surgery. The scars across my belly look fresh, but not swollen.
Sometimes I forget they are there until my hand brushes against my stomach and I feel the bumps, or I catch a glimpse of my naked self in the mirror. There they are - the lines that look like a toddler played a random game of connect the dots with a red marker across me.
And I remember. Cancer. That's right you awful beast, you were in me. Cancer.
Because most days I forget. My life is so full, so busy, there is no time to think and worry. The what ifs are chased from my mind by the present concerns of diapers and toys, dinners and hockey.
And then I am reminded.
Last week the mother of a child my son plays hockey against died. Mother of 4. Cancer.
Two weeks ago another online blogger friend died. Mom of 10. Cancer.
I am half way to knowing. 6 months post surgery I will get a CT Scan. A Scan that determines so much. If it comes back, survival rates are not high. If it stays away, I should be fine.
But today I will remember. I will remember those that lost this battle, and the ones that love them. I will remember with gratitude that mine was caught early, and the miracle that was. I will remember my fellow kidney cancer survivors. I will think of my dad and his battle. I will hug my kids closer and appreciate my husband more.
Three months ago a doctor gave me a gift. He gave me the gift of time. My scars might be ugly, and a reminder of a horrible experience, but they will also remind me of the gift of today.
Sometimes I forget they are there until my hand brushes against my stomach and I feel the bumps, or I catch a glimpse of my naked self in the mirror. There they are - the lines that look like a toddler played a random game of connect the dots with a red marker across me.
And I remember. Cancer. That's right you awful beast, you were in me. Cancer.
Because most days I forget. My life is so full, so busy, there is no time to think and worry. The what ifs are chased from my mind by the present concerns of diapers and toys, dinners and hockey.
And then I am reminded.
Last week the mother of a child my son plays hockey against died. Mother of 4. Cancer.
Two weeks ago another online blogger friend died. Mom of 10. Cancer.
I am half way to knowing. 6 months post surgery I will get a CT Scan. A Scan that determines so much. If it comes back, survival rates are not high. If it stays away, I should be fine.
But today I will remember. I will remember those that lost this battle, and the ones that love them. I will remember with gratitude that mine was caught early, and the miracle that was. I will remember my fellow kidney cancer survivors. I will think of my dad and his battle. I will hug my kids closer and appreciate my husband more.
Three months ago a doctor gave me a gift. He gave me the gift of time. My scars might be ugly, and a reminder of a horrible experience, but they will also remind me of the gift of today.
Sunday, June 14, 2009
Relay for Life
Last night I attended the Relay for Life. And I cried. I cried without being able to stop.
I cried for me. For how scared I was, for the reality of cancer in my life.
I cried for my dad, for the battle his is facing and how scared I am for him, and for us, as he faces this battle.
I cried because I was so angry. I don't want to celebrate or even remember, I just want to fight back.
I cried because of how my life has changed because of this. I cried for my fellow survivors, and those that are lost. I cried for the joy around me, for the life that was there. For those that walked and walked in honor of loved ones. For those that were there because of me.
I cried for me. For how scared I was, for the reality of cancer in my life.
I cried for my dad, for the battle his is facing and how scared I am for him, and for us, as he faces this battle.
I cried because I looked around I saw a sea of yellow shirts, all of us with our blue "Survivor" ribbons. Because this disease has touched too many lives.
I cried because I was so angry. I don't want to celebrate or even remember, I just want to fight back.
I cried because of how my life has changed because of this. I cried for my fellow survivors, and those that are lost. I cried for the joy around me, for the life that was there. For those that walked and walked in honor of loved ones. For those that were there because of me. Tuesday, June 9, 2009
Pay It Forward
There are no real words to express how loved and cared for I have felt during this journey of the last few months. We went through a series of horrible things, some of which continue, and each of them individually were almost too much to bear, and certainly collectively they were. And yet we did not carry them alone. Alongside came friends, who really are the absolute definition of family. Friends that listened to me, cried with me and comforted me. We have received gifts that each and every time were beyond our wildest expectations, and always unexpected . . . but I am getting ahead of myself.
First, I have my girl-friends. These ladies came have known me since my childhood days, through those high-school years and stood beside me at my wedding. We have been through loss, joy, grief, pain, adoption, illness, divorce, death and many successes. We are as different as can be; from right wing traditionalist to left wing tree hugger; from single and independent to stay at home mom; from rich and famous to quiet and reserved. Yet at the heart of it we are the same - sisters of the heart.
When they heard of my cancer battle and pending surgery each and everyone of "My Girls" as they are commonly referred to in our house, dropped when they were doing and supported me. Pam (not pictured), famous lawyer, an incredibly busy and important woman with two children of her own, booked an entire week off work (an incredibly important and well paying job I might add) just to sit by my hospital side on the other side of the continent in another country and dammit if she had to kick an airline attendant's desk and driving an extra 4 hours when they messed up her flight, she was going to be there! She also made it her day's work to provide me with play lists on her Iphone and Frisk Mints procured from the gift shop. How do I ever repay that type of love?
Shannon, fighting her own battle against a horrible disease, hosted us in her home the night before my surgery, and the night before she left town to travel to her own specialist appointment. She was willing to sacrifice her own health to be a support to me, how do I ever repay that type of love?
Tamara still dealing with her own grief after the loss of her mother to a brief and horrid battle with cancer less than a year ago, paused her attempts to pack up her mothers home and also took a week off of work to play nursemaid to me as I lay on her couch. She fed me, clothed me and ensured my every need was met. How do I repay that type of love?
Alison and Christine, both willing to drag kith and kin across the countryside to visit me repeatedly in the hospital. Bearing thoughtful, amazing gifts of food, pajamas, creams and encouraging words they supported me through a very scary time. All 5 girls came together to put together a "Yes We Can" box of encouragement for me that they gave to me the night before my surgery. I can never, ever express what their thoughtfulness meant to me as I went into the evening scared, terrified and feeling very alone, and left feeling loved, encouraged and knowing I would be ok. How do I repay that type of love?
Orange is the Kidney Cancer Color!
After surgery, our house was filled with meals from our church "family". People I may have only known in passing spent the time to tell my husband and children how much we meant to them, or that my presence at church was missed. I still have casseroles in the freezer, and one for supper tonight.
The unexpected gifts surprise even the most hard hearted in our family. When Shel lost his job, he also lost his gym membership. Squash is Shel's release, his fun, his time away that he cherishes. But the membership was a luxury and paid for by the company he worked for. There was no way to justify a membership in these tough economic times, and so, he gave up what he loved without complaint. Out of the blue the owner of the gym called one night last week to say they are restoring Shel's account. He has strung some rackets for them over the years and they wanted to say thanks, and let us know they were thinking of us, and to please come play anytime. An unexpected gift.
And then there is our Harambee Family. Harambee is a camp we have attended every year for 10 years. It is for families (adoptive or biological, although most are adoptive) raising children of African Heritage. When news of my cancer diagnosis spread to the organizers they not only waived our fees for this year, they offered me access to a house on the property so I could rest, if need be. Privately, one camp friend sent us gas money to make sure we could come, another sent food money. Its humbling, its overwhelming, its hard to receive, and yet we do. How do I repay that type of love?
And then this week we heard of a family in need of a vehicle. We were so INCREDIBLY lucky to be able to replace our van with a truck that seats us all (baby girls included), blessed in fact because of the love and generosity of my grandmother who in her death made sure I, and "her boys" would be provided for. So we gave our van away, paying forward even in some small way the blessings we have been shown. And on this day that we would give away our van, I received a cheque from a friend. This friend is also from camp, a woman I have shared laughter and tears with over the years, but have never seen outside that precious one week a summer. We know we are "family" but this I did not expect because the cheque matched the amount we would have received for selling the van. She said it was her way to "Pay It Forward" for the generosity of friends when she needed it years ago. I am overwhelmed to the point of being unable to even formulate the words to say thank-you. How do I repay that type of love?
There is no way to repay, except to pay it forward. And so this is my promise to you that we will. We will. When we can, as we are able, we will. This is my promise and when we do it will be in honor of each and everyone of you and your encouraging words, thoughtful gifts, kind emails, generous hearts and your love. I can never say thankyou enough. Cancer may suck, but it has openned my eyes to the amount of love and goodness in the world.
THANK YOU.
Saturday, May 30, 2009
The Cancer Recap - Post Surgery Update
My pathology report and I made our way to the doctor's office yesterday for my post-surgical appointment. Shel would have come too, but well ... he was in the van with the babies. THE BABIES!!! (if case you wonder, I am still in shock ... but back to cancer)
So, my tumor was clear cell carcinoma, that we already knew. The "Furhman Grade" was also higher than I expected and as such it has caused me some stress. This means it was a more aggressive form of cancer than we (ok I) had anticipated.
However, the tumor was also tiny, and well positioned. The actual tumor had a diameter of 1 cm and was resting on the edge of my kidney. Instead of losing a large percentage of my kidney as was expected, I lost only about 8%. The function of my kidney (or at least the cleanliness of my blood) has not been affected. All pathology of all other areas (lymph nodes, renal capsule, vessels, ureter, hilum and adrenal gland, pelvis, and fat tissue surrounding kidney) came back clear.
The tumor is considered fully encapsulated. As the doctor explained to me yesterday, it doesn't matter what kind of horses you have in the corral as long as they can't get out to wreck the fields (you can tell I live in ranch country?). In English that means my cancer was there, but was small enough to still be held in by the capsule around it. The doctor said I got the jackpot of cancers. Oh goody?!?
The final word came through as far as follow up as well. I will not have to see an oncologist again, instead I will have CT scans twice a year for the next little while, and yearly ultra sounds and blood work the rest of my life. Officially, according to the doctors, I am now a NED (No Evidence of Disease). All good news.
Emotionally? Its a different ball game. I want to know what I did to CAUSE this. I want to know what I can do to PREVENT this. I have never smoked. Ever, not once. And still I get a smoker's cancer? I am relatively healthy and in good shape. I get an cancer correlated with obesity? I logically know there is NO reason, or at least no reason I will ever KNOW as to why I got this cancer; that even if I had smoked that doesn't mean THATS the reason this cancer started.
The doctor called this "Health Confidence". He said it will return in a couple years of living well. I wonder if that's so? I wonder if I want to even forget how fragile life truly is? If I live to 86, I now understand that its NOT given. I want to appreciate old age because I hope I never forget how close I came to not seeing it.
So, my tumor was clear cell carcinoma, that we already knew. The "Furhman Grade" was also higher than I expected and as such it has caused me some stress. This means it was a more aggressive form of cancer than we (ok I) had anticipated.
However, the tumor was also tiny, and well positioned. The actual tumor had a diameter of 1 cm and was resting on the edge of my kidney. Instead of losing a large percentage of my kidney as was expected, I lost only about 8%. The function of my kidney (or at least the cleanliness of my blood) has not been affected. All pathology of all other areas (lymph nodes, renal capsule, vessels, ureter, hilum and adrenal gland, pelvis, and fat tissue surrounding kidney) came back clear.
The tumor is considered fully encapsulated. As the doctor explained to me yesterday, it doesn't matter what kind of horses you have in the corral as long as they can't get out to wreck the fields (you can tell I live in ranch country?). In English that means my cancer was there, but was small enough to still be held in by the capsule around it. The doctor said I got the jackpot of cancers. Oh goody?!?
The final word came through as far as follow up as well. I will not have to see an oncologist again, instead I will have CT scans twice a year for the next little while, and yearly ultra sounds and blood work the rest of my life. Officially, according to the doctors, I am now a NED (No Evidence of Disease). All good news.
Emotionally? Its a different ball game. I want to know what I did to CAUSE this. I want to know what I can do to PREVENT this. I have never smoked. Ever, not once. And still I get a smoker's cancer? I am relatively healthy and in good shape. I get an cancer correlated with obesity? I logically know there is NO reason, or at least no reason I will ever KNOW as to why I got this cancer; that even if I had smoked that doesn't mean THATS the reason this cancer started.
The doctor called this "Health Confidence". He said it will return in a couple years of living well. I wonder if that's so? I wonder if I want to even forget how fragile life truly is? If I live to 86, I now understand that its NOT given. I want to appreciate old age because I hope I never forget how close I came to not seeing it.
Monday, May 25, 2009
Accepting Help
I am a do'er. An administrator. A helper. A person who enjoys being busy. Need someone to organize a meeting? Write a brochure? Teach a class? Take over the social events for half a camp ground? I am HAPPY to do that.
What I am NOT is someone used to accepting help for myself. Although I am so grateful for the kindness and generosity of friends and family its hard to shake of the embarrassment of NEEDING help.
Somethings are easier to understand embarassment wise. My MOTHER bathed me. Twice. Why? Well it was either accept help or stay dirty, so help in the form of my mother was required. If you know me (or heck know my mother!) you know what a stretch this was.
But its also embarrsing to admit that my family is enjoying the food from the tables of others. Many others. My freezer is like a catalogue of casseroles as friends, co-workers, neighbours and virtual strangers drop off food to feed an army, and satisfy my sons. I am so grateful because the idea of being required to cook for the masses right now is exhausting, the reality would be worse. But still, I wish I could just DO IT.
A friend went grocery shopping for me yesterday. I ASKED her to. Its embarassing to admit that "we" are stretched too thin, but also wise to be honest. My pain levels are high, my energy levels are low. I had been back in the hospital with some minor, although painful, complications this weekend and I am tired, Shel is exhausted and we simply needed help.
Another friend spent a free morning helping with the house work. It's an impossibility for me to try to vacuum right now, and well, although very well intentioned, the men around here just don't SEE dirt the same way as me.
I called a counsellor to get help for a son that is struggling with all the stress. I am not enough to solely help him through this difficult time. He needs help, and I need help to help him.
Hopefully learning some humility, graciousness in expressing gratitude and a huge stack of thank you cards will pull me through until I can return the favor.
In the mean time I am going to go lay on the couch and practice doing nothing. It's far harder than it sounds!
What I am NOT is someone used to accepting help for myself. Although I am so grateful for the kindness and generosity of friends and family its hard to shake of the embarrassment of NEEDING help.
Somethings are easier to understand embarassment wise. My MOTHER bathed me. Twice. Why? Well it was either accept help or stay dirty, so help in the form of my mother was required. If you know me (or heck know my mother!) you know what a stretch this was.
But its also embarrsing to admit that my family is enjoying the food from the tables of others. Many others. My freezer is like a catalogue of casseroles as friends, co-workers, neighbours and virtual strangers drop off food to feed an army, and satisfy my sons. I am so grateful because the idea of being required to cook for the masses right now is exhausting, the reality would be worse. But still, I wish I could just DO IT.
A friend went grocery shopping for me yesterday. I ASKED her to. Its embarassing to admit that "we" are stretched too thin, but also wise to be honest. My pain levels are high, my energy levels are low. I had been back in the hospital with some minor, although painful, complications this weekend and I am tired, Shel is exhausted and we simply needed help.
Another friend spent a free morning helping with the house work. It's an impossibility for me to try to vacuum right now, and well, although very well intentioned, the men around here just don't SEE dirt the same way as me.
I called a counsellor to get help for a son that is struggling with all the stress. I am not enough to solely help him through this difficult time. He needs help, and I need help to help him.
Hopefully learning some humility, graciousness in expressing gratitude and a huge stack of thank you cards will pull me through until I can return the favor.
In the mean time I am going to go lay on the couch and practice doing nothing. It's far harder than it sounds!
Monday, May 18, 2009
Thoughts From the Couch
Here I lie, side mildly aching, feeling like I should feel guilty for being so lazy except that I am too tired to actually do anything about it. My battle with effective pain medications continue as everything that helps the pain makes me sick, and being sick is worse than the pain so here I sit.
And so I give you my thoughts from the couch. I might be lazy but I am not too lazy to blog.
#1) Thinking you are going to die in surgery is normal, apparently. This was my innermost, deepest fear. The reason for the family photos, the reason for the sleepless nights, the reason I was mostly scared about going to the hospital. You know how when you are pregnant everyone around you is pregnant? Or when you're in love every song on the radio is about being in love? Or when you are fighting every song reminds you of your anger?
When when you are "sick" there are ALOT of songs out there about life, and final choices, and dying, and missing a loved one. Apparently this was NOT God's way of passing on a secret message to me that I was going to die. I know this NOW because, you know, I didn't.
Everyone - from the front desk nurse to my extremely amazing surgeon - took it upon themselves to reassure me that being nervous was normal. I wish I would have voiced this fear earlier because maybe reassurances from others would have helped me. Instead, I just imagined that God was using Top 10 Hits to let me know my time was short. Which brings me to my next point ...
#2) No shame in using medications to get through. (I realize based on my previous list that some might think I CONTINUE to need additional medications, but please remember I am posting while under the influence of pain meds and cannot be held legally responsible for what I say. SO THERE). Sleep medications = good. Ativan = good. Maybe it's a pride thing, but relief did come when I finally caved into the fact I had these little pills hopping around in my purse and shaking for eight hours straight is no fun so TAKE THE MEDICATIONS. Apparently there is no shame in this. Who knew?
#3) My two BEST items at the hospital were ear plugs and eye shades (I have no idea what they are actually called but you know the soft, silky eye things that you imagine Divas wear when they sleep until noon.) Hospitals are NOT the best places to sleep and these two items when finally acquired gave me two good nights. Of course, I was also robbed of all my cash my last night in the hospital and its a bit freaky to me to realize that SOMEONE ill-intentioned was in my hospital room during the night going through my drawers and I didn't notice, but you know with the amount of pain meds I was on, I wouldn't have stopped him anyways.
#4) Some friends rock. Some friends suck. You just never know who is who until push comes to shove. Many of my friends (and family) were absolutely unbelievably supportive through it all, before, during and now after as I sit on a friend's couch and ruin her May Long Weekend as she waits on me. On the other hand, I have a friend I know cares deeply about me and would probably give their life for me if need be. This friend disappeared the week before surgery and during the week of surgery leaving me shocked and reeling from their notable absence at a time when I expected their support. Reappearing only, tearfully, regretfully, after I survived. The reasons for how people react to stress are complicated and my friend now carries more guilt than I could have ever heaped upon their head.
#5) Pathology results suck, even when you think you are prepared. There is no easy way to say this and no matter my brave face and stoic attitude, the words "renal cell carcinoma" written down on a piece of paper sent me reeling. I still am actually. I KNOW I am lucky. I KNOW my chances are very, very good. I KNOW others face worse every day. But still, it's cancer and it's me. ME. Jen. Cancer. Real cancer. There is no answer to the why questions I have. I have NO RISK FACTORS. Not one. How then can I keep myself safe? How can I prevent it from coming back?
It was growing in me. A bright orange little ball of lethal cells trying to kill me and I did not know. Growing, spreading and caught, but still was there. So secretive and lethal.
Everyone else took this news in stride, not remotely shocked because we knew, chances were, it was cancer. But for me that ever present hope that the tumor was benign was carrying me through. I was forced to process the reality of "CANCER" alone in a hospital room. If you are ever in a position of expecting pathology results, it would be best to not be alone. Ask my very supportive nurse, she will concur.
#6) Back to the pills. Stool Softeners have dosage guidelines for a reason. It is not wise to quadruple this number because you think its a good idea. Remember when making such decisions that the anesthetic makes you COGNITIVELY IMPAIRED. Be wise. Trust me. Just trust me.
#7) I am not super human. Despite my personal expectations, surgery does HURT. I am TIRED. Recovery has not happened in a week. Duh.
Back to the couch to take a nap.
And so I give you my thoughts from the couch. I might be lazy but I am not too lazy to blog.
#1) Thinking you are going to die in surgery is normal, apparently. This was my innermost, deepest fear. The reason for the family photos, the reason for the sleepless nights, the reason I was mostly scared about going to the hospital. You know how when you are pregnant everyone around you is pregnant? Or when you're in love every song on the radio is about being in love? Or when you are fighting every song reminds you of your anger?
When when you are "sick" there are ALOT of songs out there about life, and final choices, and dying, and missing a loved one. Apparently this was NOT God's way of passing on a secret message to me that I was going to die. I know this NOW because, you know, I didn't.
Everyone - from the front desk nurse to my extremely amazing surgeon - took it upon themselves to reassure me that being nervous was normal. I wish I would have voiced this fear earlier because maybe reassurances from others would have helped me. Instead, I just imagined that God was using Top 10 Hits to let me know my time was short. Which brings me to my next point ...
#2) No shame in using medications to get through. (I realize based on my previous list that some might think I CONTINUE to need additional medications, but please remember I am posting while under the influence of pain meds and cannot be held legally responsible for what I say. SO THERE). Sleep medications = good. Ativan = good. Maybe it's a pride thing, but relief did come when I finally caved into the fact I had these little pills hopping around in my purse and shaking for eight hours straight is no fun so TAKE THE MEDICATIONS. Apparently there is no shame in this. Who knew?
#3) My two BEST items at the hospital were ear plugs and eye shades (I have no idea what they are actually called but you know the soft, silky eye things that you imagine Divas wear when they sleep until noon.) Hospitals are NOT the best places to sleep and these two items when finally acquired gave me two good nights. Of course, I was also robbed of all my cash my last night in the hospital and its a bit freaky to me to realize that SOMEONE ill-intentioned was in my hospital room during the night going through my drawers and I didn't notice, but you know with the amount of pain meds I was on, I wouldn't have stopped him anyways.
#4) Some friends rock. Some friends suck. You just never know who is who until push comes to shove. Many of my friends (and family) were absolutely unbelievably supportive through it all, before, during and now after as I sit on a friend's couch and ruin her May Long Weekend as she waits on me. On the other hand, I have a friend I know cares deeply about me and would probably give their life for me if need be. This friend disappeared the week before surgery and during the week of surgery leaving me shocked and reeling from their notable absence at a time when I expected their support. Reappearing only, tearfully, regretfully, after I survived. The reasons for how people react to stress are complicated and my friend now carries more guilt than I could have ever heaped upon their head.
#5) Pathology results suck, even when you think you are prepared. There is no easy way to say this and no matter my brave face and stoic attitude, the words "renal cell carcinoma" written down on a piece of paper sent me reeling. I still am actually. I KNOW I am lucky. I KNOW my chances are very, very good. I KNOW others face worse every day. But still, it's cancer and it's me. ME. Jen. Cancer. Real cancer. There is no answer to the why questions I have. I have NO RISK FACTORS. Not one. How then can I keep myself safe? How can I prevent it from coming back?
It was growing in me. A bright orange little ball of lethal cells trying to kill me and I did not know. Growing, spreading and caught, but still was there. So secretive and lethal.
Everyone else took this news in stride, not remotely shocked because we knew, chances were, it was cancer. But for me that ever present hope that the tumor was benign was carrying me through. I was forced to process the reality of "CANCER" alone in a hospital room. If you are ever in a position of expecting pathology results, it would be best to not be alone. Ask my very supportive nurse, she will concur.
#6) Back to the pills. Stool Softeners have dosage guidelines for a reason. It is not wise to quadruple this number because you think its a good idea. Remember when making such decisions that the anesthetic makes you COGNITIVELY IMPAIRED. Be wise. Trust me. Just trust me.
#7) I am not super human. Despite my personal expectations, surgery does HURT. I am TIRED. Recovery has not happened in a week. Duh.
Back to the couch to take a nap.
Friday, May 15, 2009
Simple Words
"Thank You"
Thank you 1000 times over for praying, for supporting, for loving on me and my family this week.
For those of you that sent flowers thank you. My hospital room truly looked as if a greenhouse had exploded. The nursing station actually KEPT some of my arrangements as there was simply no more room to put them. Flowers would arrive on the floor and the nursing station would simply point in my direction.
For the meals, words of encouragement, the friends and the family that were supportive in more ways than I can ever possibly list, thank you. Your love, your kindness, your thoughtfulness and your encouragement were ever so appreciated. For Jess that ran herself off her feet keeping her own family going, running my blog and trying not to worry herself sick, a HUGE thank you. She is my sister by chance but my friend by choice. And she is amazing, in case you ever wondered.
For my sister-friends who went so far as to fly ACROSS THE CONTINENT to be at my bedside words are not enough either. So T, A, P, C and S thank you for the amazing box, the amazing in hospital facial (seriously there is nothing like a facial while attached to IV meds), the dinner, the tears, the hugs and the support. And I sit here in T's home resting while she cooks me food and serves me snacks and brings me my medications. I am blessed beyond measure with the best friends anyone could imagine.
And I am out. Sprung free. The doctor gave me a choice this morning, out today or in until Tuesday waiting for my complication to clear up. EASY CHOICE - no offense hospital as the treatment they gave me was great, but I am ready, very, very, very ready to be out of a hospital bed.
The family is doing great. Shel has kept things on the home front going in the right direction. He had a minor breakdown yesterday (lol hope he doesnt mind me sharing) as us being so far apart when I was facing sickness and complications was very hard on both of us, but the good news this morning has put things back into perspective for him. We will be ok. I will survive and I will be home in a week. Not quite raring to go, but better - and heck - now cancer FREE.
My biggest issue right now is nausea which I assume is from the pain meds. Doctor has informed me that (not so sadly) I would make a terrible drug addict as my body rejects all narcotics. Right now I puke ever so suddenly, ever so frequently. It's not pleasant and my incisions ache which makes me tired. But heh, a I AM cancer free so its all a matter of perspective right?
I had dreams I clung to of being able to shout from the blog rooftop that my tumor was benign, but sadly, that is not to be. I have stage 2, clear, renal cell carcinoma. Catching this really did save my life. The margins are all clear, the lymph nodes too. There was no sign of it spreading and I am going to be ok. They will check me every 6 months for a while.
And so, again, thank you. Back to the couch to surf and make Tamara bring me cold drinks.
Thank you 1000 times over for praying, for supporting, for loving on me and my family this week.
For those of you that sent flowers thank you. My hospital room truly looked as if a greenhouse had exploded. The nursing station actually KEPT some of my arrangements as there was simply no more room to put them. Flowers would arrive on the floor and the nursing station would simply point in my direction.
For the meals, words of encouragement, the friends and the family that were supportive in more ways than I can ever possibly list, thank you. Your love, your kindness, your thoughtfulness and your encouragement were ever so appreciated. For Jess that ran herself off her feet keeping her own family going, running my blog and trying not to worry herself sick, a HUGE thank you. She is my sister by chance but my friend by choice. And she is amazing, in case you ever wondered.
For my sister-friends who went so far as to fly ACROSS THE CONTINENT to be at my bedside words are not enough either. So T, A, P, C and S thank you for the amazing box, the amazing in hospital facial (seriously there is nothing like a facial while attached to IV meds), the dinner, the tears, the hugs and the support. And I sit here in T's home resting while she cooks me food and serves me snacks and brings me my medications. I am blessed beyond measure with the best friends anyone could imagine.
And I am out. Sprung free. The doctor gave me a choice this morning, out today or in until Tuesday waiting for my complication to clear up. EASY CHOICE - no offense hospital as the treatment they gave me was great, but I am ready, very, very, very ready to be out of a hospital bed.
The family is doing great. Shel has kept things on the home front going in the right direction. He had a minor breakdown yesterday (lol hope he doesnt mind me sharing) as us being so far apart when I was facing sickness and complications was very hard on both of us, but the good news this morning has put things back into perspective for him. We will be ok. I will survive and I will be home in a week. Not quite raring to go, but better - and heck - now cancer FREE.
My biggest issue right now is nausea which I assume is from the pain meds. Doctor has informed me that (not so sadly) I would make a terrible drug addict as my body rejects all narcotics. Right now I puke ever so suddenly, ever so frequently. It's not pleasant and my incisions ache which makes me tired. But heh, a I AM cancer free so its all a matter of perspective right?
I had dreams I clung to of being able to shout from the blog rooftop that my tumor was benign, but sadly, that is not to be. I have stage 2, clear, renal cell carcinoma. Catching this really did save my life. The margins are all clear, the lymph nodes too. There was no sign of it spreading and I am going to be ok. They will check me every 6 months for a while.
And so, again, thank you. Back to the couch to surf and make Tamara bring me cold drinks.
Saturday, May 9, 2009
Capturing My Family
It's been a few years since we have had family "portraits" taken but for some reason, with all this new talk of cancer and surgery I felt a NEED to capture the moments of us together. My friend Laureen generously, amazingly, and overwhelmingly offered her services to do a photo shoot. 
Now if you know teenagers, you know that this sort of thing is not high on their priority list of fun things to do. You add to that fact that our photo shoot was done DURING a Canucks Playoff Game which is at the absolute top of the fun things to do list at our house, and well, let it hereby be known that Laureen Carruthers is a MIRACLE WORKER.
These are a few of the pictures she took, go to her blog to check out some more. Go to her site if you ever need a photographer. Her work is a amazing.
Because not only did she take some amazing pictures of my family but Laureen (and the magic of her camera) managed to make me NOT look like the tired and stressed mom I am. Thank you Laureen for giving me this opportunity to reflect on the beauty of my family. The joy these pictures have brought me is enormous!
Friday, May 8, 2009
How are those boys?
This has been a time of emotional ups and downs in our house, as I am sure you can well imagine. The boys have each acted very, very different and I thought I would share in case anyone else ever faces similar circumstances one day.
Son #1 - 14 Let's just say the child has driven me to drink on more than one occasion. His way to cope with a sick mom and the big, scary "C" word is to push me away. When you think about it, this makes alot of sense. Greg has already lost two moms (one birth, one foster) and NOW his mom, the supposed-to-be-forever-one is sick. It's alot easier to push me away, stay angry and convince yourself that life would be almost BETTER without her than admit how very scared you are. We are talking this through, and I know it makes sense to him too that maybe, just maybe I haven't suddenly turned into the Witch of the West. When I left yesterday to make my way down for surgery in Vancouver, I got a hug, an "I love you mom" and a big smile. I love that kid so much, and seeing how scared he is makes me want to fight this all the more.
Son #2 - 13 This reaction has surprised me because Eric's world must stay safe and that is what he clings to always, as I have talked about extensively on here. Eric has matured about 8 years in 2 months. He is being helpful and considerate, sweet and silly. He is holding his temper (for the most part) and trying, I think in his own way, to pretend everything is all right by keeping it all right for himself. Add to that, the drama of the older brother, and Eric's new role as the "well behaved child" makes life much easier. I know, always, that there will be fall out with Eric when the stress of this time is done, his "pretend everything is perfect" response will crack with the weight of the emotion he is feeling, but for now all is ok. He loves me, and shows me how much with this gigantic effort.
Son #3 - 11 Tanner is about as problem and conflict avoidant of a child as you can generate. You add that dynamic to a child that is complaint to the extreme and you have a child that is under severe stress. Tanner is my child struggling the most and attempting to hide it the best. He has developed a nervous habit of picking at his finger cuticles, they are now all bleeding and raw. He is failing every single class in school - this a child that was labeled "highly gifted" by the school system two years ago. He has forged (repeatedly, as I discovered yesterday) my signature on school papers and notes home from the teacher. All this in an attempt to pretend everything is alright. I am not supposed to know about missing homework because "I have cancer", I am not supposed to know about the detentions because "I have cancer", I am not supposed to know that he is struggling because "I have cancer". The difficult part here is that he is SO sensitive and acts completely fine at home. We would never know that his school life is falling apart. He is cuddly and happy and wants to chat. He hides it all. You would never know. He thinks he is making the problem go away and poor kid, doesn't know how to cope. I wish I could gather up my little man, trying so hard to be a big man, and take away his fear.
Son #4 - 8 Caden is scared. Caden will tell you, the guy at the grocery store and mention it to your dog for good measure. Caden is here with me because he wants to see me in the hospital and being at home is not an option. Probably, he is handling it the best. Apparently he is single handily praying for a league or two of angels to be with me and sending along "Theo" his treasured stuffed puppy to accompany me into surgery. He wants to be brave and see me "with the tubes", and to his mind being here means he has some control over the outcome. I love, especially right now, that he wants to cuddle because lots of times, right now, I need to snuggle.
Husband - 38 Calm, cool, collected. And totally faking it! But that's ok, we both know that acting strong and brave and competent right now is what we need to do for our kids.
Today I spend in the hospital getting more tests, meeting the drug doctors and last round of consultations with the surgeon. I am at the hospital Monday morning at 6:30am, under the knife by 8 am. Out of surgery, if all goes well, by 1 pm and on my ward by 4 or 5 pm.
Son #1 - 14 Let's just say the child has driven me to drink on more than one occasion. His way to cope with a sick mom and the big, scary "C" word is to push me away. When you think about it, this makes alot of sense. Greg has already lost two moms (one birth, one foster) and NOW his mom, the supposed-to-be-forever-one is sick. It's alot easier to push me away, stay angry and convince yourself that life would be almost BETTER without her than admit how very scared you are. We are talking this through, and I know it makes sense to him too that maybe, just maybe I haven't suddenly turned into the Witch of the West. When I left yesterday to make my way down for surgery in Vancouver, I got a hug, an "I love you mom" and a big smile. I love that kid so much, and seeing how scared he is makes me want to fight this all the more.
Son #2 - 13 This reaction has surprised me because Eric's world must stay safe and that is what he clings to always, as I have talked about extensively on here. Eric has matured about 8 years in 2 months. He is being helpful and considerate, sweet and silly. He is holding his temper (for the most part) and trying, I think in his own way, to pretend everything is all right by keeping it all right for himself. Add to that, the drama of the older brother, and Eric's new role as the "well behaved child" makes life much easier. I know, always, that there will be fall out with Eric when the stress of this time is done, his "pretend everything is perfect" response will crack with the weight of the emotion he is feeling, but for now all is ok. He loves me, and shows me how much with this gigantic effort.
Son #3 - 11 Tanner is about as problem and conflict avoidant of a child as you can generate. You add that dynamic to a child that is complaint to the extreme and you have a child that is under severe stress. Tanner is my child struggling the most and attempting to hide it the best. He has developed a nervous habit of picking at his finger cuticles, they are now all bleeding and raw. He is failing every single class in school - this a child that was labeled "highly gifted" by the school system two years ago. He has forged (repeatedly, as I discovered yesterday) my signature on school papers and notes home from the teacher. All this in an attempt to pretend everything is alright. I am not supposed to know about missing homework because "I have cancer", I am not supposed to know about the detentions because "I have cancer", I am not supposed to know that he is struggling because "I have cancer". The difficult part here is that he is SO sensitive and acts completely fine at home. We would never know that his school life is falling apart. He is cuddly and happy and wants to chat. He hides it all. You would never know. He thinks he is making the problem go away and poor kid, doesn't know how to cope. I wish I could gather up my little man, trying so hard to be a big man, and take away his fear.
Son #4 - 8 Caden is scared. Caden will tell you, the guy at the grocery store and mention it to your dog for good measure. Caden is here with me because he wants to see me in the hospital and being at home is not an option. Probably, he is handling it the best. Apparently he is single handily praying for a league or two of angels to be with me and sending along "Theo" his treasured stuffed puppy to accompany me into surgery. He wants to be brave and see me "with the tubes", and to his mind being here means he has some control over the outcome. I love, especially right now, that he wants to cuddle because lots of times, right now, I need to snuggle.
Husband - 38 Calm, cool, collected. And totally faking it! But that's ok, we both know that acting strong and brave and competent right now is what we need to do for our kids.
Today I spend in the hospital getting more tests, meeting the drug doctors and last round of consultations with the surgeon. I am at the hospital Monday morning at 6:30am, under the knife by 8 am. Out of surgery, if all goes well, by 1 pm and on my ward by 4 or 5 pm.
Wednesday, May 6, 2009
Saying Good-bye
Today was my last day of work. My last day with the little girl I have been matched with all school year. My last day in my class room of 29 students and an amazing young teacher who started as a stranger, then my a co-worker and became a friend.It's hard to remember back to those stressful first days in September and how nervous we ALL were. First year Teacher, First year Teacher's Assistant and TWENTY NINE 11 to 13 year olds. Someone thought it was wise to abandon us alone together in a room and leave us to our devices for a year.
And it's been good; actually, its been great.
In seven months I have endured an entire life time of experiences through the eyes of these kids. I have walked beside them through parent death, abuse, divorce, separation, foster care, adoption, medical crisis, pets dying and arriving. In fact its been an innumerable series of successes and struggles. I have had parents angry at me and parents who think I am the best T. A. EVERrrrrr. I've frozen on the playground in minus twenty degree weather doing recess supervision. I've marched scared kids into the Principal's office and wiped away more tears than I can count. I've celebrated helping a learning disabled child get it and explaining to a know-it-all why they don't.
Surgery and recovery will take me away from the class until school is long finished for the year and so over the last few days we prepared for my departure. A party and cake, gifts and cards, flowers and candy, hand written notes and my very own "World's Best Teacher" Build-A-Bear.
After over 11 years of being at home, I knew I working would be an adjustment. I knew I would enjoy the pay cheque. I knew I would enjoy getting out of the house. I knew I would make new friends.
What I didn't know is how my heart would grow to include 28 very special kids on whose life I hope I made an impact. The crazy ones, the silly ones, the snotty ones, the hyper ones, the hormonal ones, the rude ones, the happy ones, the weepy ones, the confident ones, the sad ones, the talented ones, the struggling ones. They are all the loved ones.
Good-bye kids. I will miss you.
And to Eric, my sweet son, thank you for putting up with having your M-O-M in class with you. I know some days were yucky and some days were good and I know I expected the very most from you. Enjoy your last six weeks of mom free class time, just don't enjoy it too much because you know? Now that I am off work, I COULD home-school you again!
Thursday, April 16, 2009
More of me than you ever wanted to see!
Although some may complain about the Canadian Medical System, I want you to know that I have NO complaints about it at all.
None. Zero. Zilch.
Currently, my family is reaping the benefits of a medical system that will help the poor guy down the road or the rich guy up the street. It is saving my life. It is giving my sons a mother for many more years and I pray to God a grandfather too. I dont have to worry about paying for A-N-Y-T-H-I-N-G. My house isn't in jeopardy, only my health, and that's just the way it should be. I will happily, HAPPILY pay my taxes this month and realize that I love my Country and I love our Universal Medical Program. I LOVE IT.
Now, for an example of how they aren't saving any money, the doctor sent me a copy of my CT Scan and a computer program to read it. And for your reading pleasure, I am about to share more of myself than I ever thought I would.
Ladies and Gentlemen .... I present to you my skeletan.
Don't get all excited, I am wearing a gown!
The rude and offending kidney whom I will love and cherish in THREE MORE WEEKS, until then it scares the crap out of me (yes so much for long waits for surgery in Canada EH!)
And then, finally - IT. Or at least what I think it is because, well I am not a doctor nor do I pretend to be on in real life. And you now, CT scans are really, really difficult to read when you don't know what you are doing or what you are looking for. But, if I remember correctly, that's the cancer there at the end of my left kidney. Its about the size of a grape. I am one very, very lucky woman. I talked to a lady today who had a kidney tumor removed from her that was the size of a human head! A HUMAN HEAD. She was asymptomatic except for flank pain. I am very, very lucky.
Whole lot of fuss for something so tiny, eh?
Friday, April 10, 2009
Survival Rates
Survival Rates
Why must I read them? Why must the be so different?
40-45%
90%
over 75%
aproximately 80%
None of them say I am guaranteed to be alive in 5 years. I want that guarantee. And yes I know, no guarantees in life, but at 35 I feel like I have a bit of a cushion. Or I felt like I did.
Even at 90% which is the number I cling to, why are 10% of the people dying? Nothing says. Does the cancer come back? Are they old? Are 10% dead because they had something else wrong? Were they young too? Were they mothers?
It's horrible. I feel awful for even thinking that because I know I don't deserve life anymore than anyone else. Just because I am young-ish and because I am a mother doesn't mean that this is any worse for me than anyone else.
I just don't want this. I don't want to be a statistic. I liked denial. I want to go back to feeling young and invincible.
I wait now. May 11th is my day. My day of surgery. My cure? And then I will wait again, a week or two to find out my pathology.
For some reason I am craving chocolate like you wouldn't believe.
Why must I read them? Why must the be so different?
40-45%
90%
over 75%
aproximately 80%
None of them say I am guaranteed to be alive in 5 years. I want that guarantee. And yes I know, no guarantees in life, but at 35 I feel like I have a bit of a cushion. Or I felt like I did.
Even at 90% which is the number I cling to, why are 10% of the people dying? Nothing says. Does the cancer come back? Are they old? Are 10% dead because they had something else wrong? Were they young too? Were they mothers?
It's horrible. I feel awful for even thinking that because I know I don't deserve life anymore than anyone else. Just because I am young-ish and because I am a mother doesn't mean that this is any worse for me than anyone else.
I just don't want this. I don't want to be a statistic. I liked denial. I want to go back to feeling young and invincible.
I wait now. May 11th is my day. My day of surgery. My cure? And then I will wait again, a week or two to find out my pathology.
For some reason I am craving chocolate like you wouldn't believe.
Wednesday, April 8, 2009
The Low-Down on My Cancer
So Jen, are you SURE you have cancer?
I have a tumor. A tumor with a blood supply that the surgeon says looks to him like a malignant cancer. There IS a chance, however small, that upon removal we will find out that the tumor is benign. However, the course of treatment is the same and there is no way to determine if it is benign or malignant prior to removal so the point at this time is moot. Kidney Tumor = Removal. Benign vs Malignant simply affects my chances of recurrence long term.
So Jen, what type of cancer do you have?
Primary kidney cancer, also called renal cell cancer, refers to a malignant tumor that originates in the kidney. The most common type of kidney cancer in adults is renal cell carcinoma, which arises from the small tubes within the kidneys.
So Jen, why did you get it?
Although no one knows all the causes of kidney cancer, the following factors can also increase the risk of developing this disease:
I have a tumor. A tumor with a blood supply that the surgeon says looks to him like a malignant cancer. There IS a chance, however small, that upon removal we will find out that the tumor is benign. However, the course of treatment is the same and there is no way to determine if it is benign or malignant prior to removal so the point at this time is moot. Kidney Tumor = Removal. Benign vs Malignant simply affects my chances of recurrence long term.
So Jen, what type of cancer do you have?
Primary kidney cancer, also called renal cell cancer, refers to a malignant tumor that originates in the kidney. The most common type of kidney cancer in adults is renal cell carcinoma, which arises from the small tubes within the kidneys.
So Jen, why did you get it?
Although no one knows all the causes of kidney cancer, the following factors can also increase the risk of developing this disease:
- being male
- being obese
- being over the age of 60
- smoking
- high blood pressure
- a genetic risk
- being on dialysis
- being an iron worker
In other words I HAVE NO FREAKIN' IDEA WHY I GOT IT. Read that list - I don't have a single risk factor on it. Last week, the transplant team told me I was in "ideal health". Before this news, my blood pressure was (and I quote!) "that of a child". In other words finding out I had cancer in my kidney's was the shock of the doctor's life, and mine as well.
So Jen, what are the treatment options?
There are a couple of options. I am choosing, so far at least, to opt for a partial nephrectomy. Partial nephrectomies are relatively new in the treatment of kidney cancer, and what it means is that I will have the tumor, and surrounding kidney tissue removed but the majority of my kidney will remain. The cancer is in my left kidney, which also happens to be my STRONG kidney (oh the things you find out when you are donating a kidney!) and because there is a chance of recurrence I want to retain as much kidney function as I can for future options, if they are needed. At this point in time it is assumed that I will not need follow up chemo unless the tumor turns out to be severely aggressive, which is highly doubtful, although possible. Surgery will be sooner rather than later - what that means in reality I have no idea.
So Jen, are you going to live?
Hell yes. Am I freaking out? Yes. Have I have written my own eulogy, planned the music and got myself dead and buried? Yes, admittedly I have had those moments. For goodness sakes its only been 5 days allow me to freak out a little! Google slays me at the moment and has brought on more than one panic attack. I am praying for a "peace that passes all understanding" right now. This cancer IS curable through surgery. My chances of survival at the 5 year mark are, as far as I can tell, above 90%. The overall chances (since I know you are all going to go off and google) is around 45% with this type of cancer HOWEVER I am young, healthy, with a VERY early diagnosis. The odds are in my favor.
More than ANY of that though, I have 4 little boys that desperately need me. I will fight and do anything - absolutely ANYTHING to beat this.
Ah Jen, is this going to turn into a cancer blog? What happened to your musings on adoption and life as a multi-racial family?
Yes, cancer is now part of my life - and the lives of my children. But I know (Thanks Judy) that by no means am I the only adoptive parent dealing with her own mortality, while trying to be there for her children who have faced way too much loss in their lives already. Telling my boys was the hardest part of this journey. Maybe, in someway it will help someone else. Right now I have to figure out how to support my kids and promise to them that despite the fact they have lost two mothers before me, that I intend to be here a long, long time.
So Jen, how can we help?
This is where I want to say thank you to my friends and family; Meals, flowers, thoughts, prayers, holding my hand, crying with me - or crying for me because I am not shedding very many tears right now. To those of you who commented or sent emails, I thank you. To those of you who have added me, my dad, my family to your prayer chains, I thank you. I suppose the chance to be heard through this means the most. If you still choose to read, despite the fact I might get obsessed and boring, if you give my kids an extra hug, or drop off a casserole, listen to Shel's talk it through. To understand that right now, my life is absolutely insane and I might forget the odd birthday or cry unexpectedly and to also understand that my life must go on, and if I seem "happy" that's ok too.
So Jen, how are you feeling?
I am OK. I am overwhelmed by how this has affected those whom I love, and whom love me. Go read here http://ticksandtrust.blogspot.com/ This is written by a long time, best, sister friend from my youth who faces a struggle WAY bigger than mine, and yet she cries for me. I am scared for my husband and my boys. I am scared for me. I worry about my sister and my dad. I now understand however what hearing that "C" word does. The clock stopping, the world shrinking, the overwhelming horror that overtakes your life. Mostly though, I am trying to remember I Am Blessed. It was found. I will be free of it. Why me? Why am I so lucky?
So Jen, what about your cousin?
She is currently off the transplant list right now due to another health complication but she will need a kidney. Soon. I trust that she is in God's hand but would ask that you pray for her too. Please. I don't know why I was asked to walk this journey that in turn gave her and her family some hope, only to have it shattered in a way we could have never anticipated for both of us. Am I thankful for myself? Not yet. Just pray for her.
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