What a year....probably the best and the worst year of my life. So much happened--each life changing on it's own. We moved, my baby sister got married, I had our fifth, sweet, baby and, of course, you know, I was diagnosed with brain cancer. Like I said, all life changers.
Many wonderful and awful things went on in the world during 2012. A few awful: Newtown, CT, Hurricane Sandy, Wars continuing, wildfires in Utah. A few wonderful: young adults can serve a mission earlier (my personal fave of 2012), we have a living Prophet--President Thomas S. Monson, we live in a free country, miracles happen everyday.
A life changing year that will never be forgotten by anyone close to me. My last blog posts have focused a lot on the many blessings that have come from being diagnosed with brain cancer. That is why it has been the worst and the best year of my life. I have seen so many miracles I can't even count them.
Several months ago, my dad and I were talking and he mentioned this brain tumor would have happened whether or not my mom passed away. I think it is safe to say there is NOTHING in my life that would have turned out the way it did if my mom had not passed away. When he said it, it brought me comfort. It made me feel warm. It was a piece of my mom that would have happened even if she were still here.
That warmth was quickly replaced by thankfulness that she is in Heaven rather than on Earth. Because she died, High School played out the way it did, I went to SUU, I met Matt, Jess came to SUU which directed her life in the way it did, I graduated from SUU, Matt and I chose to go to dental school in AZ, to live where we did, to have our children, to be in our ward surrounded by love, support and knowledge and to live near a world renowned Brain Cancer Hospital where I am receiving care by Doctors that are in the top 1% of their fields. It has all led up to this point! So, I would have had this tumor regardless of my mom dying, but I believe it would not have gone this well. Things would not be SO good.
If someone tried to tell me, 17 years ago, I'd be very blessed by my mom's death, I would have given anything to have her back. Anything. There is no way I could have comprehended how much I needed her to die. How pivotal it was to my life.
I have gained a lot of wisdom in my years. I, actually, have gained an immense amount of wisdom in the past 4 1/2 months. I know that this Cancer is part of something bigger. I will look back 17 years from now and will be even more thankful for this trial. It will have shaped who I am. It will be the beginning of the next turn, in this short life, that will shape experiences, choices and changes that will determine the future of me and my family.
As for now, the "new year" is an awesome time full of hope and excitement. I feel it. I cannot wait to see what another year will bring. I can handle anything. I'm armed with the best weapons--determination, strength, but most of all my family and Faith. Welcome 2013, the first of many more years to come.
Monday, December 31, 2012
Thursday, December 13, 2012
A New Perspective
My Christmas Card was a special one for me this year. Many of you have received it, but I realize that there are many of you praying and thinking about me, whom I do not know personally. I thank you for those prayers. They have helped so much and they are needed. For those of you who did not receive a card from me in the mail, here are some of the pictures (beautifully captured by my friend Nicole Hammontree) included on it:
I hope all of you appreciate and enjoy this holiday season and take a moment to remember the true meaning of Christmas. My heart and my family are continually grateful for your thoughts and prayers.
The INCREDIBLE card was designed by one of my dearest friends from college, Mandi Leavitt, who missed many nights of sleep to produce a perfect product. The words were written by me:
When you are fighting for your life
He will be there.
When you are faced with the odds against you
He will be there.
When you think you aren't going to make it
He will be there
When you are in need of a miracle
He will be there.
He is always there.
Thank you for your thoughts and prayers for our family,
as we have clung to each other and our Faith through this trial.
We have felt them and we have needed them.
Christmas has a much different feel to me this year and I hope it has this "new" feel from now on. As a matter of fact, everything in my life has a new feel...a better feel.
I was talking to my dad the other day and we were discussing how blessed we are after the results of my post-radiation MRI. I don't know if it was true or not, but I felt like I was knocking on death's door the last couple weeks of radiation and until my MRI. It was the scariest few weeks of my life. I'm not dead. I'm not going to die, but I was about as close to it as I could have gotten and I am changed forever because of it.
While my dad and I were talking, he said that when my mom died, his life changed. There were many things he had to rearrange, prioritize or cut out of his new life. I told him that I have been doing the same thing, but the best part of it all is I'm still here. My dad had to figure out life after losing his wife. I get to do this without leaving or losing anyone.
My way is better. Life has been forever changed since I walked into the grocery store on August 11, 2012. I appreciate the little things, put off the dishes/phone calls/laundry, hug my kids a little longer, weed out the excess things that don't matter, thank my husband more, simplify, cut out and don't do a lot of the things I used to do. It just doesn't matter.
What can you take with you to Heaven? Answer: NOTHING! What will you get to have in Heaven? Your family. What will your family remember when you have gone to Heaven? You are the only one who can answer this.
I have a new perspective on life. I thought brain surgery brought me the new perspective, but turns out, brain surgery was the warm up, the easing into the hard stuff. Radiation is what nearly did me in. Radiation gave me a new perspective. Each night I kneeled and plead with my Heavenly Father to let me survive. To keep me here on Earth. My prayers changed very much during the course of the last 4 months as did my relationship with my Heavenly Father.
I went from begging to submitting myself to His will knowing that His will is the only right way. The only way that everyone involved would be okay. Submitting myself, but asking Him to carry me through this trial as there is no way I could do it alone. He carried me, he continues to carry me. That is what He is there for. For you and me. He doesn't do anything to us. He hurts when we hurt. The biggest reason I didn't want to die is it would cause my children pain. He watched His only Son bear the sins of all mankind and then die on a cross. He knows a pain much worse than I feel or have ever felt.
Now, each night, I thank my Father in Heaven for my new perspective. For a new chance to appreciate my life in a way I never did before. I pray to never forget this perspective especially as I continue to regain my strength and become "invincible" again.
Sunday, December 2, 2012
Prayers. Work.
I had my first post-radiation MRI last Thursday. Following my surgery and during my radiation I dreaded this scan. I kept thinking, "what if this is all for nothing. What if my tumor is the same or, worse, has already started to grow?" During one of my weekly visits with my radiation oncologist I asked him what I should expect from this scan and he told me "nothing."
My doctors expected to see "no change" in my first post-radiation scan. It took a lot of the edge off my worry and as Matt, Jess (my posse) and I drove downtown for the scan I wasn't nervous. Jess asked me if I was worried and I told her I wasn't because I knew what to expect..."no change."
We got there on time and I was escorted back by a nice radiation tech who told me he was really good at sticking people with needles for the, ever-so-dreaded, contrast. UGH...wonder when I'll get used to contrast?!
This MRI resembled some of my first MRI's--very easy and, actually, nice because the uninterrupted time of rest was welcomed. A little glimmer of what my life used to be flashed behind my closed eyes... a tired mommy whose life revolved around her babies and their activities while I tried to fit in a daily workout and dinner prep and weekly grocery shopping and dates with Matt. Ahhhh, the good ole days :).
The 35 minute scan whizzed by and the guy did a really great job with contrast. We rushed from the scan to my appointment with my radiation oncologist. He was in the middle of a gamma knife procedure and fit us in. In so many words he said the scans were status quo and exactly what he expected. I asked him if I could have possibly gotten any better news from him and he hesitated a minute (claiming he was "thinking" of anything better he could imagine) and replied, "no, results could not have been better."
The three of us left a little beaten down. Jess and Matt asked me if I was sad. I said, "Yes, I'm sad. What I have is really bad and if that is the best thing he has to say to me than I am sad."
Conversation switched back to clinical trials and anything else I can possibly do to fight against my odds. I will NOT be a statistic. What mostly made me sad about what dr. #1 said is he is my sunshine dr. He is my 26 + years guy! Why was he so blah, blah, blah? The answer: he is a human being. He has good days and bad days just like you and I. He was in the middle of a serious procedure and was probably distracted. I'm learning not to take any of this stuff personally.
I have an incredible team, but they see many patients a day and have to be strong for all of us, I have to let it go. He didn't even say anything was bad, it went as expected, but I am in search of a miracle. I want a miracle. I didn't have to wait very long for my miracle.
Next appt was with my neuro oncologist. She welcomed us in and pulled up my scans. My neuro is brilliant but not as kind as my other dr's. She is nice to me and my family, but a little harsh with her staff. She can most definitely hold her own.
As soon as my scans pulled up on her screen she started cheering--imagine Oscar the Grouch doing the happy dance and you'll get the picture. We were shocked to say the least. Stunned, even. She said, "Come on you guys...this is GREAT news!" She went on to compare my scan post-op to this one and there was significant change! Not only was there change, but A LOT of it. The part of the tumor that was left had shrunk! Many of the cancer cells were gone.
To be completely honest, I'm still in shock. Part of me wants to do my own happy dance and start my post-cancer life (not sure what that will be?) and then another part wants to protect myself from another fall. My world was devastated when I lost my mom almost 17 years ago and trust becomes an issue when you are rocked like that, especially when you're rocked again in a magnitude like this.
It really is too soon to be celebrating anything big. This is one step in my journey, but it is a BIG step in the RIGHT direction. I cannot even imagine how I would have felt if the tumor had grown. Talk about devastation!
This is how I work....I get good news and have to mull it over a little bit. I was excited, but I feel MORE excited today and will continue to feel better from here. My strength is coming back everyday and I cannot wait to RUN, exercise and grocery shop again. It is so close I can almost taste it.
Prayers. Work. Thank you. Our Heavenly Father heard our prayers and answered them. They told me to expect no change and there was. They told me I have 3-5 years to live and there is NO WAY that will happen. NO WAY!
My doctors expected to see "no change" in my first post-radiation scan. It took a lot of the edge off my worry and as Matt, Jess (my posse) and I drove downtown for the scan I wasn't nervous. Jess asked me if I was worried and I told her I wasn't because I knew what to expect..."no change."
We got there on time and I was escorted back by a nice radiation tech who told me he was really good at sticking people with needles for the, ever-so-dreaded, contrast. UGH...wonder when I'll get used to contrast?!
This MRI resembled some of my first MRI's--very easy and, actually, nice because the uninterrupted time of rest was welcomed. A little glimmer of what my life used to be flashed behind my closed eyes... a tired mommy whose life revolved around her babies and their activities while I tried to fit in a daily workout and dinner prep and weekly grocery shopping and dates with Matt. Ahhhh, the good ole days :).
The 35 minute scan whizzed by and the guy did a really great job with contrast. We rushed from the scan to my appointment with my radiation oncologist. He was in the middle of a gamma knife procedure and fit us in. In so many words he said the scans were status quo and exactly what he expected. I asked him if I could have possibly gotten any better news from him and he hesitated a minute (claiming he was "thinking" of anything better he could imagine) and replied, "no, results could not have been better."
The three of us left a little beaten down. Jess and Matt asked me if I was sad. I said, "Yes, I'm sad. What I have is really bad and if that is the best thing he has to say to me than I am sad."
Conversation switched back to clinical trials and anything else I can possibly do to fight against my odds. I will NOT be a statistic. What mostly made me sad about what dr. #1 said is he is my sunshine dr. He is my 26 + years guy! Why was he so blah, blah, blah? The answer: he is a human being. He has good days and bad days just like you and I. He was in the middle of a serious procedure and was probably distracted. I'm learning not to take any of this stuff personally.
I have an incredible team, but they see many patients a day and have to be strong for all of us, I have to let it go. He didn't even say anything was bad, it went as expected, but I am in search of a miracle. I want a miracle. I didn't have to wait very long for my miracle.
Next appt was with my neuro oncologist. She welcomed us in and pulled up my scans. My neuro is brilliant but not as kind as my other dr's. She is nice to me and my family, but a little harsh with her staff. She can most definitely hold her own.
As soon as my scans pulled up on her screen she started cheering--imagine Oscar the Grouch doing the happy dance and you'll get the picture. We were shocked to say the least. Stunned, even. She said, "Come on you guys...this is GREAT news!" She went on to compare my scan post-op to this one and there was significant change! Not only was there change, but A LOT of it. The part of the tumor that was left had shrunk! Many of the cancer cells were gone.
To be completely honest, I'm still in shock. Part of me wants to do my own happy dance and start my post-cancer life (not sure what that will be?) and then another part wants to protect myself from another fall. My world was devastated when I lost my mom almost 17 years ago and trust becomes an issue when you are rocked like that, especially when you're rocked again in a magnitude like this.
It really is too soon to be celebrating anything big. This is one step in my journey, but it is a BIG step in the RIGHT direction. I cannot even imagine how I would have felt if the tumor had grown. Talk about devastation!
This is how I work....I get good news and have to mull it over a little bit. I was excited, but I feel MORE excited today and will continue to feel better from here. My strength is coming back everyday and I cannot wait to RUN, exercise and grocery shop again. It is so close I can almost taste it.
Prayers. Work. Thank you. Our Heavenly Father heard our prayers and answered them. They told me to expect no change and there was. They told me I have 3-5 years to live and there is NO WAY that will happen. NO WAY!
Sunday, November 11, 2012
Cancer: 0 Jen: 3
I listed Cancer first, in the title, because Cancer is the "away" team. The team you rival, can't wait to leave, never want to lose to ESPECIALLY on your home turf. Cancer is losing, big time, to Jen, but not without a fight. This cancer (as most are) is a good team--the one you dream about winning--the Superbowl, World Series, World Cup, Gold Medal, you name your sport. I'm a fighter though, I had an unexpected blow with my diagnosis in August, but that was the first quarter--within the first few seconds of the game. I don't EVER back down EASY...ask anyone who knows me well (especially Matt)...my competitor most likely backs down before the end. I'm hard-wired to win.
Point Number One:
Brain surgery. Usually just speaking those two words and knowing it is going to happen to you would be too much. I'm not saying I wasn't scared out of my mind when it was me, but to win that point was so much sweeter because I was so scared. How do you know good without bad? How do you know sweet without sour?
Brain surgery was the scariest thing I have ever faced. It went SO well, I barely even remember being scared. Blessings, prayers, fasting, love and support made brain surgery, brain surgery seem easy. I continue to struggle a little bit with some side effects of the surgery, but they are minimal to what was at stake and I will take them any day to be alive.
Point Number Two:
Chemo Therapy. Many have asked how I get my chemo, most think it is through an IV. It is not in an IV. A few years ago an ultra genius person came up with "Temodar"--chemo therapy in the form of a pill. An expensive drug (because it hasn't been around long enough to have a generic), nevertheless a PILL. I took it every night of my radiation and tolerated it well.
I was on a low dose since I was taking it along with radiation, but also took a pill called "Zofran" (ring a bell pregnant mommies?) 30 minutes before taking my chemo which helped/took away the nausea. Cancer tried really hard to get a point in this area when I had to go off Chemo for a week due to a low white blood cell count (infection fighting cells.) One week and the count was back up and I was back on.
Point Number Three:
Radiation. 33 sessions, monday through friday for 6 1/2 straight weeks. This was the big point for me. I worked the longest and the hardest for this one. This point was the hardest on me physically and emotionally. I stared cancer straight in the face 5 days a week for over 6 weeks. I had 11 seizures, I lost my hair, I lost my appetite, I lost a few hours of each day traveling back and forth to the hospital, I lost my energy, I almost lost myself.
The past week and half I, really, became a "cancer patient." The person you think of when someone says "cancer." The person you know if you have had anyone close to you go through cancer. I couldn't do very much besides sleep. My dad asked me the other day how you die from a brain tumor, I didn't know so I googled it. Some advice: DO NOT GOOGLE HOW YOU DIE FROM CANCER!! I had ALL of the symptoms. My doctor's told me not to google anything (remember my post that mentioned most of the stuff on the internet is out dated?) I should have listened to my dr.'s. The last thing I needed was to couple my lack of physical strength with lack of emotional strength.
Radiation ended last Thursday and I can't believe how much better I feel since then. I am getting stronger everyday.
I feel like I have missed out on so much, but also feel like it is worth it to be here for many years to come. These past 6 weeks (especially the last 2) will not matter when I'm alive to send my baby on a mission ;).
My next MRI is scheduled for November 29th. At first I was SO nervous for this day. I kept thinking, "what if there are no changes in my tumor and this was all for nothing?" Turns out, there will be NO changes in my tumor (since my post-op scan) and that is the way it is supposed to be. I should start to see the positive effects from the chemo and radiation 4-6 months from now. My focus should be recovering from radiation, taking care of my kids, enjoying the holidays and hopefully exercising again. My radiation oncologist kept telling me there will be a day when I don't think of cancer all day, everyday...we are getting closer to that everyday!
I don't feel like I can end any post without thanking all of you for your love, thoughts, prayers, meals, notes, mail, treats, rides to radiation, rides for my kids, watching my kids and support--without that I know I wouldn't be winning my battle with cancer. A special shout out to my sweet husband. He has taken over all of the household duties and even asked me to teach him how to do Rylee's hair yesterday! Bless his heart--I'm one lucky girl!!
Point Number One:
Brain surgery. Usually just speaking those two words and knowing it is going to happen to you would be too much. I'm not saying I wasn't scared out of my mind when it was me, but to win that point was so much sweeter because I was so scared. How do you know good without bad? How do you know sweet without sour?
Brain surgery was the scariest thing I have ever faced. It went SO well, I barely even remember being scared. Blessings, prayers, fasting, love and support made brain surgery, brain surgery seem easy. I continue to struggle a little bit with some side effects of the surgery, but they are minimal to what was at stake and I will take them any day to be alive.
Point Number Two:
Chemo Therapy. Many have asked how I get my chemo, most think it is through an IV. It is not in an IV. A few years ago an ultra genius person came up with "Temodar"--chemo therapy in the form of a pill. An expensive drug (because it hasn't been around long enough to have a generic), nevertheless a PILL. I took it every night of my radiation and tolerated it well.
I was on a low dose since I was taking it along with radiation, but also took a pill called "Zofran" (ring a bell pregnant mommies?) 30 minutes before taking my chemo which helped/took away the nausea. Cancer tried really hard to get a point in this area when I had to go off Chemo for a week due to a low white blood cell count (infection fighting cells.) One week and the count was back up and I was back on.
Point Number Three:
Radiation. 33 sessions, monday through friday for 6 1/2 straight weeks. This was the big point for me. I worked the longest and the hardest for this one. This point was the hardest on me physically and emotionally. I stared cancer straight in the face 5 days a week for over 6 weeks. I had 11 seizures, I lost my hair, I lost my appetite, I lost a few hours of each day traveling back and forth to the hospital, I lost my energy, I almost lost myself.
The past week and half I, really, became a "cancer patient." The person you think of when someone says "cancer." The person you know if you have had anyone close to you go through cancer. I couldn't do very much besides sleep. My dad asked me the other day how you die from a brain tumor, I didn't know so I googled it. Some advice: DO NOT GOOGLE HOW YOU DIE FROM CANCER!! I had ALL of the symptoms. My doctor's told me not to google anything (remember my post that mentioned most of the stuff on the internet is out dated?) I should have listened to my dr.'s. The last thing I needed was to couple my lack of physical strength with lack of emotional strength.
Radiation ended last Thursday and I can't believe how much better I feel since then. I am getting stronger everyday.
I feel like I have missed out on so much, but also feel like it is worth it to be here for many years to come. These past 6 weeks (especially the last 2) will not matter when I'm alive to send my baby on a mission ;).
My next MRI is scheduled for November 29th. At first I was SO nervous for this day. I kept thinking, "what if there are no changes in my tumor and this was all for nothing?" Turns out, there will be NO changes in my tumor (since my post-op scan) and that is the way it is supposed to be. I should start to see the positive effects from the chemo and radiation 4-6 months from now. My focus should be recovering from radiation, taking care of my kids, enjoying the holidays and hopefully exercising again. My radiation oncologist kept telling me there will be a day when I don't think of cancer all day, everyday...we are getting closer to that everyday!
I don't feel like I can end any post without thanking all of you for your love, thoughts, prayers, meals, notes, mail, treats, rides to radiation, rides for my kids, watching my kids and support--without that I know I wouldn't be winning my battle with cancer. A special shout out to my sweet husband. He has taken over all of the household duties and even asked me to teach him how to do Rylee's hair yesterday! Bless his heart--I'm one lucky girl!!
Thursday, November 1, 2012
Halloween
October is, notoriously, the Roper's favorite time of year. I grew up with it this way (since Jess' bday falls in October) and I married an October bday too. My radiation put a little bit of a damper on the month, but we celebrated the best we could. The pictures are from the entire month so you will notice that I have hair in the pics from the Pumpkin Patch because we went at the beginning of October.
This place has become a Roper/Bryner tradition and we all love it every year!
The kids were so excited to make it through the "haunted corn maze."
Uncle Ben was a trooper to bounce on the enormous bouncer--there really are no words for this thing--it is enormous and you bounce on it.
Halloween PJ's for all my kiddos. Of course Case got the "pumpkin" set.
Scary faces! (Mostly because Case was crying ;).)
Pumpkin carving....
Trent looks like a ghost in the background of this pic...
My three favorite October birthday's (Jess 27, Seth 28, Matt 29.)
Halloween Costumes...Seth (Ninja), Wade (Punk Zombie), Case (Skeleton), Rylee (Princess Popstar Diva), Trent (Teenage Mutant Ninja Turtle.)
Class Parties, Trick-or-Treating until 9pm, sugar high's, hidden candy all over the house, exhausted dad, really exhausted mom (not because of Halloween), made for another great one, but hoping next year will be A LOT better! Happy Halloween!!
Monday, October 29, 2012
Seth's 7th
This sweet boy is growing up so fast! I feel like it was only yesterday that Wade was in first grade and now it's Sethie's turn! Such a sensitive and caring boy, I'm so glad he's mine. We celebrated with the family on his day and will be having a party in a few weeks.
What Seth is doing at 7:
1. 1st grade
2. CTR 7
3. Playing soccer
4. Reading
5. Adding and subtracting
6. Running Club
7. Spelling
What Seth loves to do:
1. Ride his bike
2. Play sports
3. Eat pizza
4. Play any video games
5. be silly
6. Watch "Max and Ruby"
7. Sleep in
8. Eat fruit
Tuesday, October 23, 2012
Hair is Gone
I probably should not have said anything about my hair, in my last post, because it started falling out the very next day and continued falling out in clumps. Anyone who has delivered a baby can relate. When you are 3-6 months post partum it feels like you might go bald with all the hair loss--this was that, but a hundred times worse and I really did go bald ;).
I didn't know what to expect even though my doctors and their nurses tried to tell me. It is one of those things you can't really understand until you go through it yourself. I did not think losing my hair would be a big deal, but it was. I was an emotional wreck during the days leading up to the shaving of my head. I cried. I cried hard. I grieved my hair. It might sound dramatic, but I grieved the gigantic clumps of my hair that fell out.
I think I felt so emotional about it all because it is another indication that I have brain cancer. Besides the relatively easy surgery and recovery all I have to remind me of the tumor in my brain are the seizures and hair loss. I do not enjoy my daily trips to radiation, but they are pretty harmless and not painful in the slightest. Losing my hair was painful. It literally hurt my head until it came out (think of a really sunburned scalp) and emotionally hurt my heart. A piece of me was falling out. It is really weird to look at a head and see 1/3 of it bald and realize it is MY head.
I really have a whole new awareness and sympathy towards women with breast cancer.
By the time Jess and I went wig shopping on Wednesday, I was ready to let all of my hair go. Wig shopping was fun! In a couple of seconds I went from 1/3 of my hair missing to long luxurious locks that will take 10 years to grow on my own :). I ended up with 3 really fun wigs!
The best part of the wigs is I only have to bring them into the wig shop every 6 weeks for a shampoo. Now that, my friends, is a girl's dream come true!! No hair washing?! YES!
Thursday was it...head shaving day. Matt and the boys decided to shave their heads with me. Seth and Trent were excited to do it, Wade took a little bit of persuasion ($10 bucks from Matt, under the table, that I had no clue about.) I did not want to risk a hair color change from my Rylee girl so she stayed at the length she is at :). Casey bugs is already a baldy so no need to do anything more to him!
Head shaving day was anticipated and I was ready to go. Matt did the honors and it went well.
I am still not used to the way I look bald. It is strange to look at myself in the mirror. I do know there is no way I could have left my longer hair and grow back the bald part--I have lost too much from radiation. I would have had to even it out at some point and cut my long hair REALLY short anyway.
I was really worried I might scare my kids when they saw me bald, but they have not been too affected. Case still gets the same gummy grin every time he looks at me, and the rest of them look at me the same too. Seth told me he "is worried that people will make fun of me." Bless his little heart, I told him "no one will make fun of mommy because they know I shaved my head because I am sick." He seemed satisfied with that response. I love the innocence of a child. While I'm afraid I'm going to scare him, he only cares that others are nice to me.
So, I'm adjusting. One thing that never changes is...life goes on. With or without you and your trials, it will still go on for others. It is a curse and a blessing all in one. Time heals everything. It has been 5 days since my hair has been gone and I feel like I have never had hair. It could be a lot worse--a phrase I am becoming very familiar with.
I love my family and friends. I love the ward and neighborhood I live in. I am very thankful for my doctor's. I am thankful to have brain cancer right now--a time when they make great advances everyday. Mostly, I am grateful for my Father in Heaven who knows me and carries me through each day, prompts others to be there for me when I need it and wants me to be happy. I am happy.
I didn't know what to expect even though my doctors and their nurses tried to tell me. It is one of those things you can't really understand until you go through it yourself. I did not think losing my hair would be a big deal, but it was. I was an emotional wreck during the days leading up to the shaving of my head. I cried. I cried hard. I grieved my hair. It might sound dramatic, but I grieved the gigantic clumps of my hair that fell out.
I think I felt so emotional about it all because it is another indication that I have brain cancer. Besides the relatively easy surgery and recovery all I have to remind me of the tumor in my brain are the seizures and hair loss. I do not enjoy my daily trips to radiation, but they are pretty harmless and not painful in the slightest. Losing my hair was painful. It literally hurt my head until it came out (think of a really sunburned scalp) and emotionally hurt my heart. A piece of me was falling out. It is really weird to look at a head and see 1/3 of it bald and realize it is MY head.
By the time Jess and I went wig shopping on Wednesday, I was ready to let all of my hair go. Wig shopping was fun! In a couple of seconds I went from 1/3 of my hair missing to long luxurious locks that will take 10 years to grow on my own :). I ended up with 3 really fun wigs!
Thursday was it...head shaving day. Matt and the boys decided to shave their heads with me. Seth and Trent were excited to do it, Wade took a little bit of persuasion ($10 bucks from Matt, under the table, that I had no clue about.) I did not want to risk a hair color change from my Rylee girl so she stayed at the length she is at :). Casey bugs is already a baldy so no need to do anything more to him!
Head shaving day was anticipated and I was ready to go. Matt did the honors and it went well.
I am still not used to the way I look bald. It is strange to look at myself in the mirror. I do know there is no way I could have left my longer hair and grow back the bald part--I have lost too much from radiation. I would have had to even it out at some point and cut my long hair REALLY short anyway.
I was really worried I might scare my kids when they saw me bald, but they have not been too affected. Case still gets the same gummy grin every time he looks at me, and the rest of them look at me the same too. Seth told me he "is worried that people will make fun of me." Bless his little heart, I told him "no one will make fun of mommy because they know I shaved my head because I am sick." He seemed satisfied with that response. I love the innocence of a child. While I'm afraid I'm going to scare him, he only cares that others are nice to me.
So, I'm adjusting. One thing that never changes is...life goes on. With or without you and your trials, it will still go on for others. It is a curse and a blessing all in one. Time heals everything. It has been 5 days since my hair has been gone and I feel like I have never had hair. It could be a lot worse--a phrase I am becoming very familiar with.
I love my family and friends. I love the ward and neighborhood I live in. I am very thankful for my doctor's. I am thankful to have brain cancer right now--a time when they make great advances everyday. Mostly, I am grateful for my Father in Heaven who knows me and carries me through each day, prompts others to be there for me when I need it and wants me to be happy. I am happy.
Tuesday, October 9, 2012
What I'm Hanging Hope On Today...
"If children have the ability to ignore all the odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: Give up or Fight Like Hell." --Lance Armstrong
My dear friend, Mandi, sent me the above quote which was an answer to one of my many prayers and exactly what I needed the day she sent it to me. Everyday, sometimes several times a day, I am reminded that there are many people praying, thinking and fighting right alongside me--on both sides. It sends chills down my spine to type these words. I am so blessed.
When all the odds are against me, I am somehow comforted and KNOW it is going to be OKAY. Whether or not things work out the way I want them to is pretty irrelevant, but I am not going to go easy and He knows that--perhaps I won't even "go" at all. This may just be another notch (a big one) on the "trial belt."
Someday, this will all be a memory and we will all be better people from going through this at this time. I know that to be true too.
A few weeks ago, Jess and I went to get lunch at "La Grande Orange" (or happily referred to as "LGO" by the locals.) Such a yummy place--best avocado pizza and salted chocolate chip cookies around. They also have a "store" with the cutest assortment of expensive trinket/random books you'll ever come across that somehow grab your attention and before you know it, you've spent $50 dollars on "books/notepads/calendars" you may never look at again :).
I was given some advice from a fellow cancer survivor and friend :), Lisa, to get a journal where I can write my thoughts and feelings completely unsolicited. I was just going to use a good ole spiral notebook until Jess and I came across a journal at "LGO" called "It's Gonna Be Okay" and every page, inside, is titled "What I'm Hanging Hope On Today" and lets you rate the day with a thumbs up or down. Definitely MUCH more expensive than a spiral notebook, but a lot cuter with a good message.
So, I continue to pray HARD to my Father in Heaven every night, but, as I mentioned, my prayers ARE being answered.
My radiation oncologist is also a wonderful, kind and brilliant man. I meet with him every Wednesday and went last Wednesday armed with many questions--all of which he answered with great care and consideration.
I told him 3-5 years was UNACCEPTABLE for me. There is NO WAY I'm leaving this place that soon! He told me he didn't think so either! He said the internet is a wonderful thing, but once something is out there, it's there forever. The studies that put out the statistics of 3-5 years are OLD. He has been working on a study that has been going since 1994 because the patients they are studying are STAYING ALIVE. They can't end the study.
He also told me the new average age of survival, with my particular case, is 13 years and that is based on a 60 year old male (the average person who gets my tumor.) He told me I have nothing, but to believe I will long out live 13 years. Probably double it! Now 26 years sounds a lot better to me! He also told me to keep the attitude that 3-5 is unacceptable!
Today, I'm hanging hope on 26 years!
I'm also hanging hope on:
A new friend emailed me telling me she is disease free after being diagnosed with the SAME thing as me just 2 years since diagnosis.
I haven't lost my hair yet.
I ran outside tonight.
I gave my baby a bath.
I put piggies in Rylee's hair today per her request
Trent actually listened when I asked him to put a toy away.
My, Sethie, prayed loud enough for me to hear him bless that I get better.
Matt and I told Wade that our family is forever so he never has to worry about us not being together for very long.
They changed the mission age to 18 for boys which means I will most likely be around to see all my boys go and return from their missions.
I could go on and on. Heavenly Father is very aware of me and what I'm going through. I'm going to be okay no matter what happens.
My dear friend, Mandi, sent me the above quote which was an answer to one of my many prayers and exactly what I needed the day she sent it to me. Everyday, sometimes several times a day, I am reminded that there are many people praying, thinking and fighting right alongside me--on both sides. It sends chills down my spine to type these words. I am so blessed.
When all the odds are against me, I am somehow comforted and KNOW it is going to be OKAY. Whether or not things work out the way I want them to is pretty irrelevant, but I am not going to go easy and He knows that--perhaps I won't even "go" at all. This may just be another notch (a big one) on the "trial belt."
Someday, this will all be a memory and we will all be better people from going through this at this time. I know that to be true too.
A few weeks ago, Jess and I went to get lunch at "La Grande Orange" (or happily referred to as "LGO" by the locals.) Such a yummy place--best avocado pizza and salted chocolate chip cookies around. They also have a "store" with the cutest assortment of expensive trinket/random books you'll ever come across that somehow grab your attention and before you know it, you've spent $50 dollars on "books/notepads/calendars" you may never look at again :).
I was given some advice from a fellow cancer survivor and friend :), Lisa, to get a journal where I can write my thoughts and feelings completely unsolicited. I was just going to use a good ole spiral notebook until Jess and I came across a journal at "LGO" called "It's Gonna Be Okay" and every page, inside, is titled "What I'm Hanging Hope On Today" and lets you rate the day with a thumbs up or down. Definitely MUCH more expensive than a spiral notebook, but a lot cuter with a good message.
So, I continue to pray HARD to my Father in Heaven every night, but, as I mentioned, my prayers ARE being answered.
My radiation oncologist is also a wonderful, kind and brilliant man. I meet with him every Wednesday and went last Wednesday armed with many questions--all of which he answered with great care and consideration.
I told him 3-5 years was UNACCEPTABLE for me. There is NO WAY I'm leaving this place that soon! He told me he didn't think so either! He said the internet is a wonderful thing, but once something is out there, it's there forever. The studies that put out the statistics of 3-5 years are OLD. He has been working on a study that has been going since 1994 because the patients they are studying are STAYING ALIVE. They can't end the study.
He also told me the new average age of survival, with my particular case, is 13 years and that is based on a 60 year old male (the average person who gets my tumor.) He told me I have nothing, but to believe I will long out live 13 years. Probably double it! Now 26 years sounds a lot better to me! He also told me to keep the attitude that 3-5 is unacceptable!
Today, I'm hanging hope on 26 years!
I'm also hanging hope on:
A new friend emailed me telling me she is disease free after being diagnosed with the SAME thing as me just 2 years since diagnosis.
I haven't lost my hair yet.
I ran outside tonight.
I gave my baby a bath.
I put piggies in Rylee's hair today per her request
Trent actually listened when I asked him to put a toy away.
My, Sethie, prayed loud enough for me to hear him bless that I get better.
Matt and I told Wade that our family is forever so he never has to worry about us not being together for very long.
They changed the mission age to 18 for boys which means I will most likely be around to see all my boys go and return from their missions.
I could go on and on. Heavenly Father is very aware of me and what I'm going through. I'm going to be okay no matter what happens.
Sunday, September 30, 2012
Week One of Radiation and Chemo
It has been awhile since my last post and my time has been filled with many doctor appointments to get my treatment in order, spending as much time as possible with family and friends and lots of rest. I'm still trying to grasp onto what is REALLY going on with me and that I REALLY have cancer.
It is hard to imagine how much my life has changed in just 6 weeks. I can barely remember what I used to even think or worry about before my diagnosis. That is how I talk about things now "when I was diagnosed." It is like I have just begun a new life. My family and I did the same thing when we lost my mom 16 years ago. We started a new life without her.
The hardest part of my "new" life is living day-to-day. I am a routine-oriented planner. I've said this many times. I like to "plan" for my future and that of my husband and children. The rug was pulled out from under me last week when Dr. Nakaji gave me my prognosis. He said the average life span for someone with my diagnosis is 3-5 years.
"What?!"
He COULD NOT be talking about me?! Casen will be 5 in the best scenario!
I was not expecting this statistic and, in fact, refuse to believe it. I have to, at some point though, accept the disease I have and not live in denial. On the other hand, this statistic does not take into account the power of prayer, priesthood, faith and miracles--all of which I have going for me.
So, now I have to KNOW my cancer. I have to read the advice from everyone I have received (again), research that and other areas, speak to my dr.'s differently with more questions, possibly eat differently, listen to my body and continue to pray for confirmation and comfort in all my decisions.
Not fighting hard has never been an option and it hasn't changed. I absolutely cannot leave this world in less than 5 years. My kids are WAY too little.
I have felt good about the "standard" treatment all along. Radiation and Chemo following as much removal of the tumor as possible is the standard and best treatment for my cancer. I feel good about it and the first week went well. I am on "Temodar" which is chemo in a pill form taken every night during radiation. A half hour before I take my chemo I take an anti-nausea pill. "Temodar" is well tolerated--nothing like chemo was when we were growing up.
Radiation is also going well. I make the 45+ minute trek down to St. Joseph's Hospital everyday (monday-friday.) My Radiation Oncologist had a mask made specialized for my head and face. The way the radiation beam is aimed at me is specific to my head and my tumor. It is important that the measurements are exact so they have to bolt my mask to the table while I wear it so I cannot move at all. It isn't the most pleasant 8 minutes of my day, but highly worth it as it is most definitely saving my life. I promise you that I would do A LOT worse to save my life.
At the end of Week 1, I feel really good. I'm just a little tired and think I over did it a little watching my boys play ball yesterday in the 100 degree temps (when is it going to cool down?!?!) According to the Doctor, Week 3 should bring most of the side effects which are fatigue and hair loss. I'm ready for both. Hair loss could be minor, could be major. We will have to wait and see.
I cannot believe the overwhelming amounts of generosity I have received from my family, friends, neighbors and ward. I am SO blessed! Thank you to all of you who have been there for me in any way. It has not gone unnoticed. The love, support and prayers are what have gotten me through this past 6 weeks. I love you all very much. My husband and children love you because they need me to be here a lot longer than 3-5 years and I believe I will because of you. I will continue to fight as hard as I can.
It is hard to imagine how much my life has changed in just 6 weeks. I can barely remember what I used to even think or worry about before my diagnosis. That is how I talk about things now "when I was diagnosed." It is like I have just begun a new life. My family and I did the same thing when we lost my mom 16 years ago. We started a new life without her.
The hardest part of my "new" life is living day-to-day. I am a routine-oriented planner. I've said this many times. I like to "plan" for my future and that of my husband and children. The rug was pulled out from under me last week when Dr. Nakaji gave me my prognosis. He said the average life span for someone with my diagnosis is 3-5 years.
"What?!"
He COULD NOT be talking about me?! Casen will be 5 in the best scenario!
I was not expecting this statistic and, in fact, refuse to believe it. I have to, at some point though, accept the disease I have and not live in denial. On the other hand, this statistic does not take into account the power of prayer, priesthood, faith and miracles--all of which I have going for me.
So, now I have to KNOW my cancer. I have to read the advice from everyone I have received (again), research that and other areas, speak to my dr.'s differently with more questions, possibly eat differently, listen to my body and continue to pray for confirmation and comfort in all my decisions.
Not fighting hard has never been an option and it hasn't changed. I absolutely cannot leave this world in less than 5 years. My kids are WAY too little.
I have felt good about the "standard" treatment all along. Radiation and Chemo following as much removal of the tumor as possible is the standard and best treatment for my cancer. I feel good about it and the first week went well. I am on "Temodar" which is chemo in a pill form taken every night during radiation. A half hour before I take my chemo I take an anti-nausea pill. "Temodar" is well tolerated--nothing like chemo was when we were growing up.
Radiation is also going well. I make the 45+ minute trek down to St. Joseph's Hospital everyday (monday-friday.) My Radiation Oncologist had a mask made specialized for my head and face. The way the radiation beam is aimed at me is specific to my head and my tumor. It is important that the measurements are exact so they have to bolt my mask to the table while I wear it so I cannot move at all. It isn't the most pleasant 8 minutes of my day, but highly worth it as it is most definitely saving my life. I promise you that I would do A LOT worse to save my life.
At the end of Week 1, I feel really good. I'm just a little tired and think I over did it a little watching my boys play ball yesterday in the 100 degree temps (when is it going to cool down?!?!) According to the Doctor, Week 3 should bring most of the side effects which are fatigue and hair loss. I'm ready for both. Hair loss could be minor, could be major. We will have to wait and see.
I cannot believe the overwhelming amounts of generosity I have received from my family, friends, neighbors and ward. I am SO blessed! Thank you to all of you who have been there for me in any way. It has not gone unnoticed. The love, support and prayers are what have gotten me through this past 6 weeks. I love you all very much. My husband and children love you because they need me to be here a lot longer than 3-5 years and I believe I will because of you. I will continue to fight as hard as I can.
Saturday, September 29, 2012
Life Goes On...
as it should! Despite my diagnosis, we have had some fun events and milestones occur.
Wade earned his Wolf in Cub Scouts!! Yay for him, me and his leaders--a joint effort by all :). I was able to attend his pack meeting to see him get it and I was a proud mama.
Casey bugs can sit up on his own. It isn't for very long, but he can do it! Cannot believe this sweet bug will be 6 months soon.
Fall season sports have started and are in full swing. Wade, Seth and Trent are doing soccer while Rylee continues to dance.
I love anything normal in my life right now! Matt and I have gone out a couple of times and he and I even went for a run one night. I'm hopeful for more days and nights that resemble my old life especially during chemo/radiation treatment.
Wade earned his Wolf in Cub Scouts!! Yay for him, me and his leaders--a joint effort by all :). I was able to attend his pack meeting to see him get it and I was a proud mama.
Casey bugs can sit up on his own. It isn't for very long, but he can do it! Cannot believe this sweet bug will be 6 months soon.
Fall season sports have started and are in full swing. Wade, Seth and Trent are doing soccer while Rylee continues to dance.
Wade is also doing flag football and loving every second of his wide receiver-touch down scoring position.
I love anything normal in my life right now! Matt and I have gone out a couple of times and he and I even went for a run one night. I'm hopeful for more days and nights that resemble my old life especially during chemo/radiation treatment.
Monday, September 10, 2012
The Big Day
How are you supposed to act the day before brain surgery? The surgeon's office sends you a packet filled with information on what to pack, what to eat or not eat and forms to fill out. I decided to treat the day before my surgery like any other day. If you haven't already noticed it about me--I like it when things are "normal." I like routine, order and knowing what to expect. Whenever things are not "normal" I try to get them back there as a soon as possible. On the day before my surgery, I did the laundry. It was a good activity that filled most of my day. I also fielded literally hundreds of phone calls, texts, emails, messages and visits from many of you with me and my surgery day on your minds--thank you.
The night before my surgery, I received a priesthood blessing from a dear friend, while my husband, my father and several close friends stood in the circle. The weight of their hands on my head coupled with the presence of the Spirit in my living room was so thick it was almost palpable. My Heavenly Father knew I was going into surgery Wednesday morning. He knew I was scared, He knew what I needed to hear and He was there to comfort me. Tears stream down my face and my heart burns as I type these words--I know my Heavenly Father loves me. I know that everything is going to be okay because I know this. I am a very blessed girl.
I did not sleep much Tuesday night--not because I couldn't, but because I didn't try. I should have tried, though, because when I laid down at 2:21am, it felt like one minute had passed before my alarm went off at 4:25 am.
Matt, Jess, Julie and I were in the car at 4:45am headed for Phoenix. I checked into St. Joseph's Hospital and was sent back to pre-op. I was alone for a minute while I changed and had a chance to think and pray. I kept thinking how unreal most of this felt although, I guess I don't know what I should expect to feel right before a surgery of this magnitude.
A nurse came in and gave me an IV--best one I'd ever had too! I told her so! :) Score! It's the little things that keep me jazzed which is a good thing, I guess you could say.
Everyone I met was SO nice. Warm and caring. I felt very comfortable and knew I was in the right place. Dr. Nakaji came around the corner to say hello--my heart skipped a beat :). Every time I see him, I am so comforted. He said he was ready to go and knew everything was going to go really well.
My anesthesiologist comes in and I love him from the start--a friend of a friend and the best of the best at "Barrow"--I knew I was in good hands. We laughed and talked until I said my goodbye's to Matt, my sister's and my dad. The next thing I knew was I was in recovery trying to explain to Matt and Jess that I felt like I was laying on a yellow lego :). I'm a light weight in every sense of the word and get pretty "high" when I 'm drugged up :).
They moved me to the ICU and then to a recovery room the following day. It's all a bit of a blur. I know I felt pretty much every emotion you can feel though. I know my family and close friends have too. Even though, deep down, I know its all going to be alright, I have felt hopelessness. I have been scared, I have felt angry.
Thursday (the day after surgery) was hard. I think the worst feelings were felt on this day. That night my sweet Bishop and his counselors showed up at my hospital room door telling me that he knew he had to come to see me tonight and offered to give me a blessing of comfort. Heavenly Father sent my Bishop to me that night. The blessing he gave me told me that my mom was with me and that she was of more help to me as an angel than if she was to still be alive. Oh my, I needed to hear that. How comforted I felt and still feel to know that. My mom was with me. Bishop Conway's blessing helped me immensely. I was able to sleep peacefully that night.
Pathology results came in Friday morning: Grade 3 Astrocytoma. Yes, the tumor is cancerous. I have cancer.
I have cancer.
Not sure if this has really sunk in yet--maybe it never will.
I have cancer.
Something I can grasp onto is the plan of action...in 1-2 weeks I will begin 5 days straight of radiation for 5 weeks followed by a one month break. Also 5 days of the chemo pill a month. Routine MRI's to make sure the tumor does not grow or change.
Post-op MRI results also show that Dr. Nakaji got all of the tumor he could have possibly gotten (90%) without permanently affecting my motor skills. They are affected though. I have weakness in my left hand and it doesn't do exactly what my brain tells it to do. Typing is hard, opening a pill bottle is hard, reaching for something, walking down the stairs or holding a glass is hard, BUT it is all worth it to be here. I'm frustrated, I'm struggling, but I am battling. I will not give up. The battle has just begun and me and my sweet little family are carefully picking up the pieces and putting ourselves back together.
My sweet babies who bring so much joy to my life. My sweet husband who I couldn't possibly love anymore than I do at this moment. We are trying to figure out this new journey and will do it together. Thank you for your continued thoughts and prayers--they are needed and they mean so much.
The night before my surgery, I received a priesthood blessing from a dear friend, while my husband, my father and several close friends stood in the circle. The weight of their hands on my head coupled with the presence of the Spirit in my living room was so thick it was almost palpable. My Heavenly Father knew I was going into surgery Wednesday morning. He knew I was scared, He knew what I needed to hear and He was there to comfort me. Tears stream down my face and my heart burns as I type these words--I know my Heavenly Father loves me. I know that everything is going to be okay because I know this. I am a very blessed girl.
I did not sleep much Tuesday night--not because I couldn't, but because I didn't try. I should have tried, though, because when I laid down at 2:21am, it felt like one minute had passed before my alarm went off at 4:25 am.
Matt, Jess, Julie and I were in the car at 4:45am headed for Phoenix. I checked into St. Joseph's Hospital and was sent back to pre-op. I was alone for a minute while I changed and had a chance to think and pray. I kept thinking how unreal most of this felt although, I guess I don't know what I should expect to feel right before a surgery of this magnitude.
A nurse came in and gave me an IV--best one I'd ever had too! I told her so! :) Score! It's the little things that keep me jazzed which is a good thing, I guess you could say.
Everyone I met was SO nice. Warm and caring. I felt very comfortable and knew I was in the right place. Dr. Nakaji came around the corner to say hello--my heart skipped a beat :). Every time I see him, I am so comforted. He said he was ready to go and knew everything was going to go really well.
My anesthesiologist comes in and I love him from the start--a friend of a friend and the best of the best at "Barrow"--I knew I was in good hands. We laughed and talked until I said my goodbye's to Matt, my sister's and my dad. The next thing I knew was I was in recovery trying to explain to Matt and Jess that I felt like I was laying on a yellow lego :). I'm a light weight in every sense of the word and get pretty "high" when I 'm drugged up :).
They moved me to the ICU and then to a recovery room the following day. It's all a bit of a blur. I know I felt pretty much every emotion you can feel though. I know my family and close friends have too. Even though, deep down, I know its all going to be alright, I have felt hopelessness. I have been scared, I have felt angry.
Thursday (the day after surgery) was hard. I think the worst feelings were felt on this day. That night my sweet Bishop and his counselors showed up at my hospital room door telling me that he knew he had to come to see me tonight and offered to give me a blessing of comfort. Heavenly Father sent my Bishop to me that night. The blessing he gave me told me that my mom was with me and that she was of more help to me as an angel than if she was to still be alive. Oh my, I needed to hear that. How comforted I felt and still feel to know that. My mom was with me. Bishop Conway's blessing helped me immensely. I was able to sleep peacefully that night.
Pathology results came in Friday morning: Grade 3 Astrocytoma. Yes, the tumor is cancerous. I have cancer.
I have cancer.
Not sure if this has really sunk in yet--maybe it never will.
I have cancer.
Something I can grasp onto is the plan of action...in 1-2 weeks I will begin 5 days straight of radiation for 5 weeks followed by a one month break. Also 5 days of the chemo pill a month. Routine MRI's to make sure the tumor does not grow or change.
Post-op MRI results also show that Dr. Nakaji got all of the tumor he could have possibly gotten (90%) without permanently affecting my motor skills. They are affected though. I have weakness in my left hand and it doesn't do exactly what my brain tells it to do. Typing is hard, opening a pill bottle is hard, reaching for something, walking down the stairs or holding a glass is hard, BUT it is all worth it to be here. I'm frustrated, I'm struggling, but I am battling. I will not give up. The battle has just begun and me and my sweet little family are carefully picking up the pieces and putting ourselves back together.
My sweet babies who bring so much joy to my life. My sweet husband who I couldn't possibly love anymore than I do at this moment. We are trying to figure out this new journey and will do it together. Thank you for your continued thoughts and prayers--they are needed and they mean so much.
Wednesday, August 29, 2012
Surgery Date
I am officially on the books at St. Joseph's Hospital under Dr. Nakaji's knife:
Wednesday, September 5th
5:30 am check in
7:30 am surgery
Monday, August 27, 2012
MRI Results
Dr. Nakaji's nurse practitioner called this morning with my functional MRI results (also known as "MRI mapping".) She said that a good part of the tumor is not on or near my motor strip so Doctor should have no problem removing that portion which was great news. She also had some not-so-great news: the other part of the tumor is covering much more of the motor strip than the original MRI showed which means a few things:
1. He will be leaving much more of the tumor behind than originally anticipated
2. Once the tumor goes through pathology and is considered cancerous I will be doing radiation and chemo therapy to reduce the size of the remaining tumor
On the bright side here are some other things the results confirmed:
1. I will NOT be having an awake surgery. The reason an awake surgery was considered would be so my Dr. could be extremely aggressive with the removal of the tumor. I would need to be awake in order for them to test my motor skills while he was cutting. The original MRI indicated this would be a possibility, risk of paralysis would be a little greater, but it would be potentially worth it because the entire tumor would be gone.
2. I will most likely have NO paralysis!! This is fantastic news in my opinion! The reason I run a low risk to any paralysis is the Dr. is going to be a lot less aggressive thus eliminating most of the risk of any paralysis. I will still be hooked to sensors (officially known as evoked potential monitoring) during the surgery that will alert my Dr. if he is getting too close to the motor strip so he knows to back off. The nurse said she expects me to come through the surgery with flying colors and I might even be home within 3 days!!
3. There is STILL a chance the tumor in NOT cancerous. Every doctor and radiologist that has looked at my tumor through X-ray has said it looks malignant, BUT no one can be sure until it is biopsied. If, in fact, it is NOT cancerous, I will be DONE with all of this after surgery, just routine MRI's to ensure the tumor has not grown or changed since surgery. That would be amazing!
She confirmed that I still wanted to go forward with surgery or gave me the option to meet with Dr. Nakaji again to discuss further options. I immediately told her I want the surgery and she said she'd let the scheduler know and that we are anxious to get this going. When I hung up the phone, I wondered why she would ask if I wanted to talk to the Dr. again? I mean, what more is there to talk about? My mind began to wander...
I believe a second consultation would be to discuss NOT removing the tumor at this time or simply taking a biopsy of the tumor, before removing most of it, to confirm it is cancerous. After thinking about that, I stand firm in my decision to remove as much of the tumor as possible--it seems like the only option to me. In the slim chance that it isn't malignant, it is still in there growing, changing, giving me seizures and could potentially grow into cancer anyway. Even if it isn't malignant, I think I will be glad that a good chunk of it will be gone from my brain.
One of the biggest blessings in all of this, that I haven't mentioned yet, is that my health insurance covers all of this 100% unlimited after we meet our deductible of $7000. I've already heard 100's of horror stories where people have had to fore go chemo pills, radiation treatments, or even surgery because their insurance reached the maximum. Other's who have gone bankrupt because their chemo, anti-nausea, etc pills cost $1,100.00 dollars a week. A week! I am SO blessed!
Yes, I have a brain tumor, but I have the BEST doctor at the BEST facility, wonderful insurance, and the BEST family and friends who have been rallying around me since my diagnosis. The prayers ARE working. THE PRAYERS ARE WORKING! Thank you for the prayers! I am more confident than ever that I will be back to my normal self before any of you know it :).
1. He will be leaving much more of the tumor behind than originally anticipated
2. Once the tumor goes through pathology and is considered cancerous I will be doing radiation and chemo therapy to reduce the size of the remaining tumor
On the bright side here are some other things the results confirmed:
1. I will NOT be having an awake surgery. The reason an awake surgery was considered would be so my Dr. could be extremely aggressive with the removal of the tumor. I would need to be awake in order for them to test my motor skills while he was cutting. The original MRI indicated this would be a possibility, risk of paralysis would be a little greater, but it would be potentially worth it because the entire tumor would be gone.
2. I will most likely have NO paralysis!! This is fantastic news in my opinion! The reason I run a low risk to any paralysis is the Dr. is going to be a lot less aggressive thus eliminating most of the risk of any paralysis. I will still be hooked to sensors (officially known as evoked potential monitoring) during the surgery that will alert my Dr. if he is getting too close to the motor strip so he knows to back off. The nurse said she expects me to come through the surgery with flying colors and I might even be home within 3 days!!
3. There is STILL a chance the tumor in NOT cancerous. Every doctor and radiologist that has looked at my tumor through X-ray has said it looks malignant, BUT no one can be sure until it is biopsied. If, in fact, it is NOT cancerous, I will be DONE with all of this after surgery, just routine MRI's to ensure the tumor has not grown or changed since surgery. That would be amazing!
She confirmed that I still wanted to go forward with surgery or gave me the option to meet with Dr. Nakaji again to discuss further options. I immediately told her I want the surgery and she said she'd let the scheduler know and that we are anxious to get this going. When I hung up the phone, I wondered why she would ask if I wanted to talk to the Dr. again? I mean, what more is there to talk about? My mind began to wander...
I believe a second consultation would be to discuss NOT removing the tumor at this time or simply taking a biopsy of the tumor, before removing most of it, to confirm it is cancerous. After thinking about that, I stand firm in my decision to remove as much of the tumor as possible--it seems like the only option to me. In the slim chance that it isn't malignant, it is still in there growing, changing, giving me seizures and could potentially grow into cancer anyway. Even if it isn't malignant, I think I will be glad that a good chunk of it will be gone from my brain.
One of the biggest blessings in all of this, that I haven't mentioned yet, is that my health insurance covers all of this 100% unlimited after we meet our deductible of $7000. I've already heard 100's of horror stories where people have had to fore go chemo pills, radiation treatments, or even surgery because their insurance reached the maximum. Other's who have gone bankrupt because their chemo, anti-nausea, etc pills cost $1,100.00 dollars a week. A week! I am SO blessed!
Yes, I have a brain tumor, but I have the BEST doctor at the BEST facility, wonderful insurance, and the BEST family and friends who have been rallying around me since my diagnosis. The prayers ARE working. THE PRAYERS ARE WORKING! Thank you for the prayers! I am more confident than ever that I will be back to my normal self before any of you know it :).
Wednesday, August 22, 2012
MRI Mapping
Today was a big day. Dr. Nakaji told me that MRI mapping would have to take place before surgery. MRI mapping is basically as it sounds: a MRI is done to create a map to show my doctor where he can cut my tumor without interfering with my motor strip. It is a sad, but already true statement that I feel like an old pro when it comes to MRI's even though the first one I ever had was 10 days ago. I wasn't scared, in the slightest, for today's MRI, I was actually excited to keep this ball rolling and one step closer to getting this tumor OUT of my head!
I had several wonderful friends watch my baby's while Jess drove me down to Phoenix to St. Joe's Hospital where my MRI was scheduled. We walked in and the office manager seemed a little surprised I was there.. "Is this your phone number?," she asked me and then proceeded to rattle off a number with a 928 area code (Flagstaff.) "Uhhhh, no!?," I said. "Well that explains why we couldn't confirm your appointment, yesterday." Okay, I'm starting to feel a little panicked now. Were they still going to see me? Are they going to confuse my file with this other girl's when it comes to surgery time? Why don't they organize patients by SOCIAL SECURITY NUMBERS???? Come on people!!
The lady "promised" that she entered me as a new patient and there shouldn't be a problem, but if any of you know Jess, she WAS NOT comfortable with that and re-asked her to confirm that the other Jennifer Roper would have nothing to do with my folder. I WILL be asking again though. It is my brain he's cutting into!!! I don't want to come out with my arm or something else cut off too ;).
After waiting just a minute, I was called into the back and asked to remove my belt and jewelry. Then problem #2 happened. I have a non-hormonal IUD and the nurse thought that it wouldn't be compatible with the grade of the MRI machine so we had to call my OB and confirm what type of IUD while the radiologist went and asked my Dr. if they should still go ahead with it all. 20 minutes later it's a go and I'm laying on the MRI table with my instructions.
The next hour was filled with several tests. I had all of the normal MRI gear on (refer to "Grey's Anatomy" or "House" if you are wondering what "MRI gear" is) and also some goggles that are similar to what you look through when getting an eye exam. My instructions were to wiggle my tongue while keeping my mouth shut, holding as still as possible and looking through the goggles to "stop " or "go" when it tells me to for 3 minutes. I also did the same thing, but tapped my left index finger and another time moving my left big toe. Each segment was 3 minutes and I did each one 3 times. The hardest part of it all was keeping my eyes open to follow the "stop" or "go" command. I also had to read a story and letters silently and look at pictures. I just wanted to fall asleep so bad. I kept thinking to myself "You've done things WAY harder than this, you CAN do this! Do NOT fall asleep!"
Now for problem #3...After all of that they needed to do some pictures with "contrast." Remember "contrast"? NOT my favorite thing, BUT they did do a WAY better job with it here than at Mercy Gilbert, that is AFTER they got the IV into my vein which took 5 TIMES!! Yes, 5 TIMES until they finally got the darn needle in--I felt like a pin cushion! The best part of these pictures were that I could keep my eyes shut and just relax. All they want you to do during a MRI is hold still and it was easy and nice :).
So, my 1 hour appointment was actually 3! Yikes! I'm exhausted and relieved to have it all done with. The radiologist said surgery is usually scheduled within 2-3 days of MRI mapping, but my gut is saying early next week. I will post when I know my date. Thank you again for all the comments, texts, emails, etc. I read them and appreciate them so much. Please keep prayers coming--I need those too :).
I had several wonderful friends watch my baby's while Jess drove me down to Phoenix to St. Joe's Hospital where my MRI was scheduled. We walked in and the office manager seemed a little surprised I was there.. "Is this your phone number?," she asked me and then proceeded to rattle off a number with a 928 area code (Flagstaff.) "Uhhhh, no!?," I said. "Well that explains why we couldn't confirm your appointment, yesterday." Okay, I'm starting to feel a little panicked now. Were they still going to see me? Are they going to confuse my file with this other girl's when it comes to surgery time? Why don't they organize patients by SOCIAL SECURITY NUMBERS???? Come on people!!
The lady "promised" that she entered me as a new patient and there shouldn't be a problem, but if any of you know Jess, she WAS NOT comfortable with that and re-asked her to confirm that the other Jennifer Roper would have nothing to do with my folder. I WILL be asking again though. It is my brain he's cutting into!!! I don't want to come out with my arm or something else cut off too ;).
After waiting just a minute, I was called into the back and asked to remove my belt and jewelry. Then problem #2 happened. I have a non-hormonal IUD and the nurse thought that it wouldn't be compatible with the grade of the MRI machine so we had to call my OB and confirm what type of IUD while the radiologist went and asked my Dr. if they should still go ahead with it all. 20 minutes later it's a go and I'm laying on the MRI table with my instructions.
The next hour was filled with several tests. I had all of the normal MRI gear on (refer to "Grey's Anatomy" or "House" if you are wondering what "MRI gear" is) and also some goggles that are similar to what you look through when getting an eye exam. My instructions were to wiggle my tongue while keeping my mouth shut, holding as still as possible and looking through the goggles to "stop " or "go" when it tells me to for 3 minutes. I also did the same thing, but tapped my left index finger and another time moving my left big toe. Each segment was 3 minutes and I did each one 3 times. The hardest part of it all was keeping my eyes open to follow the "stop" or "go" command. I also had to read a story and letters silently and look at pictures. I just wanted to fall asleep so bad. I kept thinking to myself "You've done things WAY harder than this, you CAN do this! Do NOT fall asleep!"
Now for problem #3...After all of that they needed to do some pictures with "contrast." Remember "contrast"? NOT my favorite thing, BUT they did do a WAY better job with it here than at Mercy Gilbert, that is AFTER they got the IV into my vein which took 5 TIMES!! Yes, 5 TIMES until they finally got the darn needle in--I felt like a pin cushion! The best part of these pictures were that I could keep my eyes shut and just relax. All they want you to do during a MRI is hold still and it was easy and nice :).
So, my 1 hour appointment was actually 3! Yikes! I'm exhausted and relieved to have it all done with. The radiologist said surgery is usually scheduled within 2-3 days of MRI mapping, but my gut is saying early next week. I will post when I know my date. Thank you again for all the comments, texts, emails, etc. I read them and appreciate them so much. Please keep prayers coming--I need those too :).
Sunday, August 19, 2012
Human Nature
Human nature is a funny thing. It's something that you are born with and have little control over. I often find myself hiding a smile when I use reverse psychology on my kiddos to get them to do anything they usually wouldn't (for example eat the rest of their dinner, clean up the toys, etc) by "allowing" one of their siblings to do the dreaded activity instead. To put it simply...we want what we cannot have.
A week ago, I was told I was going to be paralyzed on the left side of my body and in a wheel chair for the rest of my life. A week ago, I was told I might die therefore leaving all of my babies behind. Both of these things are horrifying--especially for someone who is only 33 years old. As you can imagine I have felt pretty much every emotion--in every way-- you can feel this week. And I think I have reached a point where my mind has taken a break. I'm all "emotioned" out--maybe even a little numb.
As I ponder my situation during my "break", I am left feeling the most curious about human nature. When I was told I might not be here to raise my babies, I immediately made a secret vow to spend every waking second with my children from here on out enjoying them, loving them and soaking it all up...well there is one small problem with this...my kiddos are WAY to little to get what is going on with me so they are still SUPER naughty ;)!!! They did not get the memo that mom is sick and they are supposed to be perfect angels from now on!! To put it bluntly--church was HORRIBLE today!
My kids could care less that this might be our last Sunday together at church in who knows how long and proceeded to scream, fight, cry, whine, go to the bathroom every 5 minutes, walk around like they owned the place, acted like they do every other Sunday today. They also continued this behavior at home too! Tumor or no tumor--it is REALLY HARD to be loving and patient with 5 naughty little monkey's!
Another example is running...I LOVE to run...MOST of the time. I would actually venture to say I have a love/hate relationship with running. I LOVE the results, endorphins and traveling to races with my friends that running brings to my life. I HATE waking up early to run outside and the inevitable injuries and how I cannot break 4 hours in a marathon race part of running. When the neurosurgeon told me I might not be able to run again, I was honestly devastated, BUT I wonder how much of this was human nature? How much of my devastation came from him telling me I couldn't do it made me want it that much more?
I don't do limbo well. The way my mom passed away was the best way, in my opinion. She died suddenly, without warning or sickness. It was much easier to cope with something so absolute. My family and I were able to pick up the pieces and deal with our situation because there was not any wondering, waiting or hoping--she was gone and we had to deal with it. Cancer is much more gray and messy. Lots and lots of unknown.
I have known I've had a tumor for a week--it has been there for years, but I have only known for a week and I feel like I found out this news 10 years ago. To say it has been a long week is a huge understatement. On the other hand, we have been living moment to moment from the second we found out. From appointment, to phone call, to speaking with this doctor, to taking this prescription. It is not a comfortable way of living and I'm anxious to leave it behind quickly.
Barrow called on Friday and my MRI mapping appointment is on Wednesday. I'm SO excited! Can I say that?! I'm just excited to keep the ball rolling and get this surgery over with so I know what I'm dealing with. Fingers crossed for a surgery date early next week. I will keep you posted. In the meantime, please keep the prayers coming. I'm not lying when I say I need them and I FEEL them. The goal for this week is to act as "normal" as possible. I AM going to play with my kiddos, BUT I'm also going to do the laundry, clean the kitchen, make school lunches and even try to exercise...so here's to me doing what I want to do all week long :).
A week ago, I was told I was going to be paralyzed on the left side of my body and in a wheel chair for the rest of my life. A week ago, I was told I might die therefore leaving all of my babies behind. Both of these things are horrifying--especially for someone who is only 33 years old. As you can imagine I have felt pretty much every emotion--in every way-- you can feel this week. And I think I have reached a point where my mind has taken a break. I'm all "emotioned" out--maybe even a little numb.
As I ponder my situation during my "break", I am left feeling the most curious about human nature. When I was told I might not be here to raise my babies, I immediately made a secret vow to spend every waking second with my children from here on out enjoying them, loving them and soaking it all up...well there is one small problem with this...my kiddos are WAY to little to get what is going on with me so they are still SUPER naughty ;)!!! They did not get the memo that mom is sick and they are supposed to be perfect angels from now on!! To put it bluntly--church was HORRIBLE today!
My kids could care less that this might be our last Sunday together at church in who knows how long and proceeded to scream, fight, cry, whine, go to the bathroom every 5 minutes, walk around like they owned the place, acted like they do every other Sunday today. They also continued this behavior at home too! Tumor or no tumor--it is REALLY HARD to be loving and patient with 5 naughty little monkey's!
Another example is running...I LOVE to run...MOST of the time. I would actually venture to say I have a love/hate relationship with running. I LOVE the results, endorphins and traveling to races with my friends that running brings to my life. I HATE waking up early to run outside and the inevitable injuries and how I cannot break 4 hours in a marathon race part of running. When the neurosurgeon told me I might not be able to run again, I was honestly devastated, BUT I wonder how much of this was human nature? How much of my devastation came from him telling me I couldn't do it made me want it that much more?
I don't do limbo well. The way my mom passed away was the best way, in my opinion. She died suddenly, without warning or sickness. It was much easier to cope with something so absolute. My family and I were able to pick up the pieces and deal with our situation because there was not any wondering, waiting or hoping--she was gone and we had to deal with it. Cancer is much more gray and messy. Lots and lots of unknown.
I have known I've had a tumor for a week--it has been there for years, but I have only known for a week and I feel like I found out this news 10 years ago. To say it has been a long week is a huge understatement. On the other hand, we have been living moment to moment from the second we found out. From appointment, to phone call, to speaking with this doctor, to taking this prescription. It is not a comfortable way of living and I'm anxious to leave it behind quickly.
Barrow called on Friday and my MRI mapping appointment is on Wednesday. I'm SO excited! Can I say that?! I'm just excited to keep the ball rolling and get this surgery over with so I know what I'm dealing with. Fingers crossed for a surgery date early next week. I will keep you posted. In the meantime, please keep the prayers coming. I'm not lying when I say I need them and I FEEL them. The goal for this week is to act as "normal" as possible. I AM going to play with my kiddos, BUT I'm also going to do the laundry, clean the kitchen, make school lunches and even try to exercise...so here's to me doing what I want to do all week long :).
Wednesday, August 15, 2012
McDreamy
If you know me well, you know I'm a celebrity junkie. I heart all things celebrity. I have an "US Weekly" subscription I read cover to cover each week, an "US Weekly" app on my phone, record "E News" each week--the whole bit. I talk about the Kardashian's like they are my friends. I watch reality TV. I love it. There aren't many non-reality shows I watch, but "Grey's Anatomy" is one of them.
Throughout the past few days, I have thought about several episodes of "Grey's." I mean, it really is my only knowledge of all this medical stuff going on with me. When I got my MRI, I kept thinking about when they do that on the show. When I spoke with several doctors I thought about the way they interacted with me and each other and how closely it resembles the doctors on "Grey's Anatomy." Props to the writers of that show--they do a pretty good job.
Today was more than a perfect day. I met my own, real life "McDreamy" (aka Derek Shepherd, the neurosurgeon, played by Patrick Dempsey on "Grey's.") Peter Nakaji from "Barrow Neurosurgical Institute" is going to save my life.
After speaking with the neurosurgeon at the hospital I was diagnosed at, Matt and I were left feeling pretty hopeless that I would live a completely normal life again. The surgeon was very diplomatic. He gave me all the risks and laid it on the table for Matt and I to decide. He was careful to protect himself and did not offer too much comfort. He was not the surgeon for me and I knew that almost immediately.
I get that a neurosurgeon needs to state the risks of the surgery they are about to perform--they are cutting into your brain for crying out loud, but I need a surgeon that states the risks, but couples that with confidence and encouragement. From the minute I was diagnosed, EVERYONE said I needed to be at "Barrow's." Today I found out why. "Barrow's" is the "Harvard" of Neurology. Who wouldn't want the best of the best cutting into your brain?
I had a day and half at home between being discharged from the hospital and my appointment this morning and have been flooded with hundreds and hundreds of texts, emails, comments and notes. Everyone has been praying for me and my family, many have fasted and I am here to tell you all that Miracle #1 (the first of many) has already happened this morning. I believe the Lord has answered these prayers and has been directing me and my life to this point for quite awhile now. There are so many things--LITTLE things--that have lead me to the here and now.
My appointment was early and for this I was grateful. When my alarm went off at 5:15am, I popped out of bed like it was Christmas morning. I had a date with destiny and did not want to be late! Matt, Jess, Julie and I were on the road at 6:00am. We traveled to downtown Phoenix quickly and were all nervously optimistic as we walked into the waiting room.
I filled out my paperwork and we were sent back to an examination room. In walks Tammy, Dr. Nakaji's nurse practitioner. I immediately liked her. She was so warm and nice. She asked for my "story" and her eyes filled with tears as we discussed how "rocked" our world has been these past few days especially because I have 5 small children. We then asked her opinion of Dr. Nakaji. Tammy's eyes filled with tears again as she expressed what an incredible man Dr. is. She said we will definitely see for ourselves when we meet him. A few short minutes later..."McDreamy" walked in.
Handsome, confident, kind and smart are the words to describe Dr. Nakaji. I knew when he walked in the door, he was going to fix me and he was going to do it right. It was an undeniable feeling, called the Holy Ghost, that spoke to not only me, but Matt, Jess and Julie in the same way. Before meeting Dr. Nakaji, I kept telling people that I needed a surgeon who had the perfect amount of confidence. Let's face it, if your confident enough to cut into a human's brain on a daily basis, you have to be confident, but I've met many, many OVERLY confident doctors in my day and I knew I didn't want that either.
Dr. Nakaji is confident yet comfortable. He eats craniotomies for breakfast. When he was explaining the procedure to me, it was the same way I'd tell a friend how to make a chocolate chip cookie (my specialty.) He knows what he's talking about, he does it everyday--multiple times a day and he is comfortable doing this surgery. He knows it.
Even though he does these surgeries everyday, he did not make me feel like a "number"--another notch on his belt--he was VERY sympathetic to me and my situation and wants to get as much--if not all--of this tumor out, BUT maintain a very high quality of life for me. Bottom line--he does not want me in a wheelchair and will do everything he can to prevent this.
So this is the plan...another MRI with brain "mapping" will take place early next week. Mapping will be done to determine how close this tumor is to my motor strip (which controls my movements on the left side of my body.) It will also determine whether or not I have an "awake" surgery. All of this will be done in order for Dr. to cut out as much of the tumor as possible without interfering with my motor strip. An "awake" surgery would be done so Dr. could ask me to move my arm, leg, etc during the surgery while he looks at my brain and determines how much of the tumor he can cut to , again, avoid interfering with that motor strip.
Following MRI mapping will be surgery--most likely in less than 2 weeks from now. 1 or 2 days in the ICU, a couple more in recovery and I'll be home unless I do have some paralysis in which case I will go straight to rehab and start working on regaining my strength in those affected limbs. His goal is to get me home ASAP. He believes patients do better when they get to go home and be where they are comfortable.
Dr. Nakaji spent over 30 minutes with us answering any and all of our questions. He had an answer--a good one--for everything. The four of us left the appointment beaming--does that really happen when you are talking about a brain tumor?! It was amazing!!
My spirit is so high I feel like I am flying. I already knew I'd beat this and now I have no doubt. I have felt your prayers and I have needed them. I still need them. YOUR prayers are what sent me to "Barrow's", YOUR prayers are what fit me into Dr. Nakaji's schedule, YOUR prayers are helping me to smile and laugh with my family today like it is any other day. For that, I thank you. I love you. Our Heavenly Father is blessing me immensely and I will be around to raise my babies!
Monday, August 13, 2012
The Worst News You Could Ever Get....
I needed to go to the gym. I love going to the gym. I crave the endorphins. On this particular Saturday, I especially needed the gym. The small problem with this Saturday was the varicose vein surgery I had done just two days prior. Per doctor's orders, I could not run, lift weights or do anything too strenuous, but the elliptical would be okay. The elliptical it was.
I knew I shouldn't push it so I entered in a fairly decent level and pedaled for about 30 minutes. I felt a small pain in the calf of the leg my varicose vein surgery was performed on so I decided it would be best to quit. I didn't want to overdo it. So I left.
I was in charge of Sunday dinner this week, so my plan was to go to the grocery store after the gym. I always go into the produce section first when I go to the store and this time was no different. Pushing the cart with my right hand and holding my shopping list in my left I turned the corner and headed for the cucumbers and carrots.
Suddenly my hand dropped my list. I looked over at my left hand and it was moving back and forth slowly as if it had a mind of its own. I became a little dizzy myself and knew I needed to sit down before I fell down. My brain tried to tell my left hand to grab the shopping cart so I could safely lower myself to the ground without any success. Mr. left hand had a mind of its own and kept flailing around. I used my right hand and sat on the ground. I knew I had to call Matt so I grabbed my cell phone and called him while I was swarmed by about 10 people--it isn't everyday a girl is sitting in the middle of the produce section!
I was able to get a hold of Matt and he told me to sit tight and that he'd be there in 2 minutes. A quick call to Jess and Ben to get over to our house and Matt was off, leaving Wade in charge. By the time he got to the grocery store, I felt pretty normal--a little dizzy--but normal. He said, "okay let's go the ER." I told him I didn't think it was necessary since I felt fine, but Matt wouldn't budge letting me know the only reason he didn't call 911 was that he could get me to the hospital faster than an ambulance.
Both Matt and I were pretty convinced I had had a stroke. I had just had varicose vein surgery and after a workout I felt a little dizzy and lost a little control of my left hand. I didn't pass out, so in our books it was a pretty minor stroke and everything would more than likely be fine. We got to the ER prepared to sit for a long while. Not this day. As soon as we told triage what had happened they fast tracked me back. Within an hour I had blood work, 2 CT scans and an EKG.
CT scan #1 showed an abnormal mass in my brain. We were mildly concerned, but didn't have too much time to think because I was already getting my second scan done--this time with "contrast." Contrast is when they inject you with iodine so they can see things in the x ray differently and with more detail.
"Contrast" is very uncool. It feels like you are injected with a hot liquid that spreads through your body in seconds. You also feel like you are peeing your pants. All of this while a man is telling you, over a speaker inside the machine, not to swallow and breathe shallow. Don't swallow?! I don't think I really swallow that often (unless I'm eating), but I can tell you that when someone tells you NOT to swallow, you want to! And I did--every time. I couldn't help it.
Who knows why (maybe because I was swallowing), but the results from CT scan #2 came back clear. The ER doc said we should feel relieved that the mass did not show up in the scan, but that I needed to be admitted to the hospital so I could get a MRI Sunday morning to figure out what caused my "stroke."
I have never been a hospital patient unless I'm delivering a baby. It isn't a whole lot different except for the baby part of course. The room is uncomfortable, the bed is lumpy, the temperature in the room goes from blazing hot to ice cold in minutes and worst of all, they come in to get your vitals what seems like every 5 minutes. It is torture. I also had an IV that they could not remove because of hospital policy. This particular IV was the most painful I'd ever had and I was miserable. To say in the least, I did not sleep much Saturday night.
Sunday morning started with good luck, or so I was told, because they could get my MRI done immediately--I guess, it's something you have to wait hours for on a usual basis. The MRI wasn't bad. I was pretty nervous after my CT Scan #2, but the technician was super nice and even played some 80's rock to soothe my nerves. It worked. I liked her and did not have any complaints.
Back in the room, the last thing to do was to get my EEG to rule out any seizure activity and then I'd be homeward bound. The nicest lady came in and started the EEG process. She busily stuck wires with metal ends to my head while we pleasantly chatted. While she was doing this, the Neurologist came in my room with the MRI results.
Neither Matt nor I were too concerned about the MRI results. The ER doc said the second CT scan was clear so were were expecting something minor that had to do with my varicose vein surgery. He asked me to tell him what brought me to the hospital on Saturday. I told my story focusing most of it on my varicose vein surgery. I was convinced this was why I was here. He told me he believed I had had a seizure. "A seizure?! Well, what about my varicose vein surgery?" He told me he did not feel like my surgery had had anything to do with why I was in the hospital. The MRI showed results of a tumor located on my brain.
A tumor on my brain?
I immediately began to cry. The lady doing my EEG began to cry. Matt and the Neurologist barely held it together. The questions began to flow....
What do you mean a tumor?
Do you mean cancer?
"We believe the tumor to be malignant."
THIS could not be happening to me. I am 33 years old. I have 5 babies. I run. I exercise. I eat right. I lost my mom when I was 16. I do not deserve anymore big trials, my worst fear is to leave my babies behind.
MY WORST FEAR IS TO LEAVE MY BABIES BEHIND.
In comes the neurosurgeon.
"The tumor is malignant, it is on your motor strip which means it is on the portion of your brain that controls the movement of your face, arms and legs. It is on the right side of your brain. If we are to surgically remove this tumor, there is a good chance you will lose function of the entire left side of your body and this could be permanent."
"THIS COULD BE PERMANENT."
That was all I could handle. I lost it. I screamed. I cried. I sobbed. I held on to Matt for dear life. This was the worst news ever. My life would never be the same.
I called Jess. I cried. She cried. Hard. We sobbed, we screamed. I did the same thing again with Julie and again with my dad and again with Matt.
Why?
Why is this happening to me? I cannot leave my babies. My babies have to have a mom. They HAVE to have a mom.
Matt and I decided almost immediately that I would have to get the tumor removed regardless of the risk involved. A mom is still a mom even if she is in a wheelchair.
I'm strong. I'm a fighter. I do not do anything half way. If there is a chance I could walk again, I will do it.
I WILL DO IT.
Phoenix has a renowned Neurosurgical Institute. I have an appointment with a surgeon there that specializes in my type of tumors on Wednesday. I need someone who is confident, experienced and ready to kill this thing because that is what I'm preparing to do.
My hopes are high. I have everything to live for.
I will beat this. I will beat this thing without a doubt.
Wednesday, August 8, 2012
Back to School
Back to school time is a glorious time in our house...does anyone remember that "Staples" commercial where the dad is dancing down the aisles filling the cart with school supplies while the Christmas song "It's the Most Wonderful Time of the Year" is playing? I love that commercial...so funny...so true!
When the end of each school year comes, I am always ready for no schedules, vacations and fun, but when the school year starts I am ALWAYS ready for it too. I don't do well without routine for too long so AZ summers are the perfect length--8 weeks--and routines start again!
I cannot believe these kiddos are getting so big! Wade is in 3rd, Seth is in 1st and Trent is in his 2nd year of preschool (next year kindergarten--yikes!!)
I wanted the first day of school to be special so I made the kids' favorite--eggs and bacon. We also decided to switch family scripture study to the mornings so we had that and I do not know what happened, but the morning FLEW by! WE WERE LATE FOR THE FIRST DAY! Who does that?!?!? Not me!!! Well, actually, it was me in this case, but this is NOT my usual behavior and I was sweating from every pore and a flustered mess!
I rushed the boys over and they got with their classes before the pledge was said and the kids went inside, but his was the best pic I could get since I was so flustered!
Luckily, I was MUCH more upset about being late than either of my boys so the day went just great for both of them.
Trent started a week later and is so excited to be in school with his favorite buddy, Blake.
I'm excited that he is in a 3 hour, 3 day a week preschool :). Win/win for all!
Yay, for schedules and routines!! Back to school time is here!
When the end of each school year comes, I am always ready for no schedules, vacations and fun, but when the school year starts I am ALWAYS ready for it too. I don't do well without routine for too long so AZ summers are the perfect length--8 weeks--and routines start again!
I cannot believe these kiddos are getting so big! Wade is in 3rd, Seth is in 1st and Trent is in his 2nd year of preschool (next year kindergarten--yikes!!)
I rushed the boys over and they got with their classes before the pledge was said and the kids went inside, but his was the best pic I could get since I was so flustered!
Trent started a week later and is so excited to be in school with his favorite buddy, Blake.
Yay, for schedules and routines!! Back to school time is here!
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