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.
Sunday, September 30, 2012
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.
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