I've joined the "TNT" to raise fund for the LLS. I will be participating in the 2013 Chicago Marathon on Oct. 13th. Which happens to be the year mark of my sister's diagnoses.
Please stop by my page and donate if you are able! Thanks a million!
http://pages.teamintraining.org/wi/chicago13/govanessa
Wednesday, May 1, 2013
Friday, April 12, 2013
This was given to me by a man name Cameron Von St. James. Here he tells his story about being a caregiver for his wife. Enjoy!
Tough Lessons In Life And Caregiving
When Heather, my wife, was diagnosed with cancer in November of 2005, we were
about to embark on a journey that we never expected we’d have to face. In the
beginning, though, it was dead silence in the doctor's office as he told us her official
diagnosis: malignant pleural mesothelioma. We were shocked. The doctor read off
our options. She could get some treatment at a local or regional hospital, neither of
which had a developed program for her form of cancer. Our third option would be
the most difficult, but it was worth it. Dr. David Sugarbaker from Boston, a renowned
and respected mesothelioma specialist could treat Heather and give her the kind of
complete treatment she needed. While Heather sat in shocked silence, I took charge
and told the doctor to send us to Boston. I knew this would be our best shot.
Heather had to quit her job and I continued working as much as I could, while
also raising our daughter who was only three months old when we received the
diagnosis, taking care of household chores, taking care of Heather when she needed
me, and everything else that comes with cancer. At times everything became so
overwhelming I didn't know how I would ever make it through. My stubbornness
came in handy in this situation as I refused to give up. Heather felt so awful, but I
tried to stay strong, like her rock, and remind her that Lily needed her so much. She
struggled but she fought hard and I tried to take care of every other aspect of our
lives so she could focus her full attention on battling cancer.
The greatest lesson I learned through this was how to accept help form others.
At a time when I was overwhelmed and on the verge of breaking down under the
pressures and responsibilities, our community rallied around us. Friends, family and
even complete strangers came to our aid, and I had to learn to be strong enough to
let go of my stubborn pride and accept these generous offers. Once I was able to do
that, a huge weight was lifted from my shoulders.
Over the following months, Heather would undergo extensive mesothelioma
treatment in the attempt to rid her of this awful disease. Today, over seven years
since her diagnosis, Heather is cancer free and watching Lily grow into a beautiful
young lady. We fight on bravely when we need to, but for now we're enjoying a life
without cancer and the greatness of normalcy.
I decided to go back to school and study Information Technology two years after
the diagnosis. My experience as a caregiver taught me so much and gave me the
strength to attend school while working full time to support my family. I received my
degree with high honors, one of my proudest achievements, after helping my wife
beat cancer.
I was honored to give the commencement address at my graduation ceremony. I
told my fellow graduates that just a few years earlier, finding out that my wife could
die and leave me a widowed single father, I never imagined I’d be up on that stage
giving a speech as a college graduate. I told them that within each of us is the
strength to accomplish incredible, even impossible things, if we only just believe in
ourselves. Lily and her mother were in the audience to cheer me on, and that was
the greatest reward of all.
Tough Lessons In Life And Caregiving
When Heather, my wife, was diagnosed with cancer in November of 2005, we were
about to embark on a journey that we never expected we’d have to face. In the
beginning, though, it was dead silence in the doctor's office as he told us her official
diagnosis: malignant pleural mesothelioma. We were shocked. The doctor read off
our options. She could get some treatment at a local or regional hospital, neither of
which had a developed program for her form of cancer. Our third option would be
the most difficult, but it was worth it. Dr. David Sugarbaker from Boston, a renowned
and respected mesothelioma specialist could treat Heather and give her the kind of
complete treatment she needed. While Heather sat in shocked silence, I took charge
and told the doctor to send us to Boston. I knew this would be our best shot.
Heather had to quit her job and I continued working as much as I could, while
also raising our daughter who was only three months old when we received the
diagnosis, taking care of household chores, taking care of Heather when she needed
me, and everything else that comes with cancer. At times everything became so
overwhelming I didn't know how I would ever make it through. My stubbornness
came in handy in this situation as I refused to give up. Heather felt so awful, but I
tried to stay strong, like her rock, and remind her that Lily needed her so much. She
struggled but she fought hard and I tried to take care of every other aspect of our
lives so she could focus her full attention on battling cancer.
The greatest lesson I learned through this was how to accept help form others.
At a time when I was overwhelmed and on the verge of breaking down under the
pressures and responsibilities, our community rallied around us. Friends, family and
even complete strangers came to our aid, and I had to learn to be strong enough to
let go of my stubborn pride and accept these generous offers. Once I was able to do
that, a huge weight was lifted from my shoulders.
Over the following months, Heather would undergo extensive mesothelioma
treatment in the attempt to rid her of this awful disease. Today, over seven years
since her diagnosis, Heather is cancer free and watching Lily grow into a beautiful
young lady. We fight on bravely when we need to, but for now we're enjoying a life
without cancer and the greatness of normalcy.
I decided to go back to school and study Information Technology two years after
the diagnosis. My experience as a caregiver taught me so much and gave me the
strength to attend school while working full time to support my family. I received my
degree with high honors, one of my proudest achievements, after helping my wife
beat cancer.
I was honored to give the commencement address at my graduation ceremony. I
told my fellow graduates that just a few years earlier, finding out that my wife could
die and leave me a widowed single father, I never imagined I’d be up on that stage
giving a speech as a college graduate. I told them that within each of us is the
strength to accomplish incredible, even impossible things, if we only just believe in
ourselves. Lily and her mother were in the audience to cheer me on, and that was
the greatest reward of all.
Monday, December 3, 2012
Aren't you scared?
Well, we've made it to December! December is my least favorite month. Christmas isn't exactly my favorite holiday either. I never had a bad Christmas in my life, so it doesn't stem from that. I just feel that when I sit down and think about what Christmas really is "supposed" to mean it becomes depressing to me. It's like we're supposed to be happy...we have to be happy. What if I don't want to be happy...all of the time..especially Christmas time?
When I think of Christmas all the unfortunate people come to mind, the lost and departed souls, those hurting, homeless people, and students of mine/children who are less fortunate, people in hospitals, those with out family, and so on. Sure, I've always had my family, more than enough presents, my health, and good company. So, you're probably asking why am I so bitter towards Christmas? Well, this year will mark just another reason(s) why this time of month saddens me more than uplifts me. I already came into this holiday season knowing that it would be hard for my husband's family because of the recent passing of my mother-in-law, and now my family has to cope with the emotions of having a "sick" daughter, sister, spouse, and in-law.
Vanessa is due for the her fourth round of chemo on Dec. 14th or 15th. It's a short stay. It's her B Cycle. She had suffered from ocular toxicity on this round last time. I'm hoping she fairs well with this round of chemo, so she is not in any discomfort for Christmas. She will be home for Christmas though!
This past weekend I spent Saturday & part of Sunday with her at her home. My mom had stumbled upon a blog of another female, who was young, and have ALL PH+. My mom kept advising that she not read it because she feared it would scare Vanessa. Towards the end of Saturday night my mom ended up showing Vanessa the blog. Vanessa was immediately engulfed in what this girl had to say. I was reading along side her, and some of the things this other girl encountered sounded horrific. I was scared and I'm not even going through what this girl did. Trying to choke back tears I asked Vanessa, "Aren't you scared?". She replied with a firm NO and a smile! I give my sister so much credit and merit for being as brave as she is!
Once I returned home from Vanessa's house, I had a package waiting for me on my front porch. It was the book that I ordered:
When I think of Christmas all the unfortunate people come to mind, the lost and departed souls, those hurting, homeless people, and students of mine/children who are less fortunate, people in hospitals, those with out family, and so on. Sure, I've always had my family, more than enough presents, my health, and good company. So, you're probably asking why am I so bitter towards Christmas? Well, this year will mark just another reason(s) why this time of month saddens me more than uplifts me. I already came into this holiday season knowing that it would be hard for my husband's family because of the recent passing of my mother-in-law, and now my family has to cope with the emotions of having a "sick" daughter, sister, spouse, and in-law.
Vanessa is due for the her fourth round of chemo on Dec. 14th or 15th. It's a short stay. It's her B Cycle. She had suffered from ocular toxicity on this round last time. I'm hoping she fairs well with this round of chemo, so she is not in any discomfort for Christmas. She will be home for Christmas though!
This past weekend I spent Saturday & part of Sunday with her at her home. My mom had stumbled upon a blog of another female, who was young, and have ALL PH+. My mom kept advising that she not read it because she feared it would scare Vanessa. Towards the end of Saturday night my mom ended up showing Vanessa the blog. Vanessa was immediately engulfed in what this girl had to say. I was reading along side her, and some of the things this other girl encountered sounded horrific. I was scared and I'm not even going through what this girl did. Trying to choke back tears I asked Vanessa, "Aren't you scared?". She replied with a firm NO and a smile! I give my sister so much credit and merit for being as brave as she is!
Once I returned home from Vanessa's house, I had a package waiting for me on my front porch. It was the book that I ordered:
It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia
I started reading my new book when I crawled into bed last night. Certain parts are almost verbatim to what Vanessa encountered even though Dani, the patient, has AML. As I continued on reading, there were moments when I would have to take deep breathes because I was going to cry. After about 30 min of reading I put the book down, hugged Paul, and we both cried. I cried because I'm scared of what's to come. Paul cried because of what has happened...
Monday, November 26, 2012
Philly Positive
Ok-so now I am going to back track a bit and bring you back to where we left off after 4NT. I mentioned earlier that Vanessa would need to find out if she tested positive for the Philadelphia chromosome. She did, in fact, test positive. Unfortunately, this was not a good diagnosis. If she had tested negative for the PH chrom. she most likely would not have had to have a stem cell transplant. I'm sure many of you don't even know what makes the PH chrom. , let alone what it is. In simple terms it is when a person's DNA #9 and #22 split and then join each other.
After we found out this sad information the next hill to climb was to find out if I was Vanessa's match for the stem cell transplant. Being her only sibling I would have a 25% chance of being a match. Anyone else is about 1:1,000,000,00. If I was her match this would speed up the process of the actual transplant. She would undergo the transplant late Dec. early Jan. If I was not her match then because of the typing and consent of a non-related donor it would be set back to late Jan. early Feb. Sadly, we found out that I was not her match. I took this VERY hard! Luckily, she is a blonde haired, blue eyed, Caucasian female, so her chances of finding a non-related donor are very high. Her doctors have already told her they have found matches, and now they are doing all the nitty gritty work to see if and when the unrelated donor would be able help. This whole process can take up to six weeks.
It was very humbling to see how many of mine and Vanessa's friend reached out after they heard that I was not her match. Dozens of people ordered the "kit" to become part of the bone marrow registry in hopes of being a match for Vanessa. If any of you who read this would like to get on the registry to possibly help someone someday you can go to http://marrow.org/Home.aspx to find out further info. You could save someone's life! :)
Here is a medical definition of the PH chromosome:
Philadelphia chromosome (Ph): An abnormality of chromosome 22 in which part of chromosome 9 is transferred to it.
http://www.cancer.gov/PublishedContent/MediaLinks/380277.html
After we found out this sad information the next hill to climb was to find out if I was Vanessa's match for the stem cell transplant. Being her only sibling I would have a 25% chance of being a match. Anyone else is about 1:1,000,000,00. If I was her match this would speed up the process of the actual transplant. She would undergo the transplant late Dec. early Jan. If I was not her match then because of the typing and consent of a non-related donor it would be set back to late Jan. early Feb. Sadly, we found out that I was not her match. I took this VERY hard! Luckily, she is a blonde haired, blue eyed, Caucasian female, so her chances of finding a non-related donor are very high. Her doctors have already told her they have found matches, and now they are doing all the nitty gritty work to see if and when the unrelated donor would be able help. This whole process can take up to six weeks.
It was very humbling to see how many of mine and Vanessa's friend reached out after they heard that I was not her match. Dozens of people ordered the "kit" to become part of the bone marrow registry in hopes of being a match for Vanessa. If any of you who read this would like to get on the registry to possibly help someone someday you can go to http://marrow.org/Home.aspx to find out further info. You could save someone's life! :)
Here is a medical definition of the PH chromosome:
Philadelphia chromosome (Ph): An abnormality of chromosome 22 in which part of chromosome 9 is transferred to it.
http://www.cancer.gov/PublishedContent/MediaLinks/380277.html
Sunday, November 25, 2012
Heartache...
Today my heart aches especially hard. After coming off of a family filled weekend and my birthday, I am now feeling a sense of sadness and guilt. Don't get me wrong I had a wonderful time, but there was just one piece missing. People say be happy, have fun it's your birthday! Yet, they don't understand that all I want for my birthday is healthy, normal sister. It's hard to be happy and let loose because that dreaded monkey is always on my shoulder. Tap! Tap! Tap!
It's not fair that Vanessa didn't get to join in with me and my parents at my birthday dinner. It's not fair she didn't get to go shopping with me and my mom over the weekend. Why should we all get to have "fun" while Vanessa lies in her hospital bed, surrounded by sterile concrete walls, and the view of the cold November skies, while poison (that is supposed to be helping her) is being pumped into her? She doesn't deserve this, no one deserves the sentence she was given.
The feelings inside me are unexplainable. It's rage, it's sadness, it's hope all mixed into one ball that is lumped inside me. Currently, I am listening to solo piano radio on Pandora and it feels like a roller coaster ride. The ups and downs, the build up, the release, and the coasting yet it gives me a sense of calmness as tears roll down my face. I say everyday still, this should be me; I want to take it all in and away from her.
I ordered a book called "It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia" as well today. For as much as I have read over and over, I think it's time that I read something that isn't based off of stats. I think it's unfair to compare Vanessa to other cancer patients because she is her own living self that God has His own individual plan for. What do some other persons stats have to do with her? Then I catch myself saying, "Hell, someone has to be that percentage that makes it through this war zone." Not for a second would I wish the emotions that go with what my family and I are feeling upon anyone!
As I close out today I will leave you with a piece that I feel is very fitting:
It's not fair that Vanessa didn't get to join in with me and my parents at my birthday dinner. It's not fair she didn't get to go shopping with me and my mom over the weekend. Why should we all get to have "fun" while Vanessa lies in her hospital bed, surrounded by sterile concrete walls, and the view of the cold November skies, while poison (that is supposed to be helping her) is being pumped into her? She doesn't deserve this, no one deserves the sentence she was given.
The feelings inside me are unexplainable. It's rage, it's sadness, it's hope all mixed into one ball that is lumped inside me. Currently, I am listening to solo piano radio on Pandora and it feels like a roller coaster ride. The ups and downs, the build up, the release, and the coasting yet it gives me a sense of calmness as tears roll down my face. I say everyday still, this should be me; I want to take it all in and away from her.
I ordered a book called "It's Good to Know a Miracle: Dani's Story: One Family's Struggle with Leukemia" as well today. For as much as I have read over and over, I think it's time that I read something that isn't based off of stats. I think it's unfair to compare Vanessa to other cancer patients because she is her own living self that God has His own individual plan for. What do some other persons stats have to do with her? Then I catch myself saying, "Hell, someone has to be that percentage that makes it through this war zone." Not for a second would I wish the emotions that go with what my family and I are feeling upon anyone!
As I close out today I will leave you with a piece that I feel is very fitting:
Philip Glass
Metamorphosis
Thursday, November 22, 2012
Happy Thanksgiving
Going a little out of order today, but since it is Thanksgiving I will write about that today. Today marks the first major holiday that we are celebrating with out Paul's mom since she has passed. I'm sure today will be hard for Paul at times. Today also marks the first major holiday with Vanessa fighting her fight.
We are celebrating at Vanessa's new house with just the 6 of us. Vanessa's choice! :) My mom I'm sure has prepared a 100% organic feast for us. I couldn't be more grateful for the family that I have! I'm not really in the writing mood today, so this one will be short and sweet. Happy Thanksgiving!
We are celebrating at Vanessa's new house with just the 6 of us. Vanessa's choice! :) My mom I'm sure has prepared a 100% organic feast for us. I couldn't be more grateful for the family that I have! I'm not really in the writing mood today, so this one will be short and sweet. Happy Thanksgiving!
Wednesday, November 21, 2012
Thank you Sir may I have another?
So here my husband and I are, again, in the 4NT wing of Froedert. The rush of emotions hit him pretty hard since this place all too familiar to him. Vanessa was assigned to room 5. It was late in the day when we all got there. I was running on minutes of sleep, yet I wasn't fazed by it. When we walked in the room Vanessa was sitting on the middle of her "new bed", arms clutched around her knees, a half crooked smile because we were there, and a look on her face that made me want to crawl inside of her and take that nasty cancer by the balls. This was all really happening, and being the control freak that I am, I couldn't do a damn thing about it. None of my herbal remedies would work this time, nor would lots of sleep, nor would the sweet, soft, caring, loving words of our mother.
I had packed a small bag full of sentimental things that belonged to me to leave in her room because let's be honest, this wasn't the Ritz Carlton. We weren't there for long until I started putting up the pictures and knick knacks I brought for her. First was a picture of me and her on the last Caribbean vacation that we were on together. Feb. of 2006 to be exact. Vieques, Puerto Rico. Then there was the picture of me and Paul from our wedding "shower". The book Guess How Much I Love You?. Lastly, a family picture of the four of us from my wedding rehearsal dinner. They brightened up the room a bit.
Later that afternoon her main doctor came in and gave us the down low on what Vanessa had and what she was going to face. We learned that Vanessa was diagnosed with Acute Lymphoblastic Leukemia-ALL. This is the type that normally, what's normal anymore though, right, that adolescents get. It is considered a curable cancer. There was only one piece of the puzzle that we didn't have yet, and that was if she had the Philadelphia Chromosome. This little asshole would determine if she needed a stem cell transplant. She obviously would need chemo too.
Funny how being the holistic person that I am, and swearing off chemo is what I always did, I didn't think twice about the word chemo when it came to Vanessa. Do I wish there was something else that was out there that didn't pose to harm her while doing good, yes I do, but this was baby sister, a product of two people that made me too.
I had packed a small bag full of sentimental things that belonged to me to leave in her room because let's be honest, this wasn't the Ritz Carlton. We weren't there for long until I started putting up the pictures and knick knacks I brought for her. First was a picture of me and her on the last Caribbean vacation that we were on together. Feb. of 2006 to be exact. Vieques, Puerto Rico. Then there was the picture of me and Paul from our wedding "shower". The book Guess How Much I Love You?. Lastly, a family picture of the four of us from my wedding rehearsal dinner. They brightened up the room a bit.
Later that afternoon her main doctor came in and gave us the down low on what Vanessa had and what she was going to face. We learned that Vanessa was diagnosed with Acute Lymphoblastic Leukemia-ALL. This is the type that normally, what's normal anymore though, right, that adolescents get. It is considered a curable cancer. There was only one piece of the puzzle that we didn't have yet, and that was if she had the Philadelphia Chromosome. This little asshole would determine if she needed a stem cell transplant. She obviously would need chemo too.
Funny how being the holistic person that I am, and swearing off chemo is what I always did, I didn't think twice about the word chemo when it came to Vanessa. Do I wish there was something else that was out there that didn't pose to harm her while doing good, yes I do, but this was baby sister, a product of two people that made me too.
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