May 2017
Brain Cancer Awareness Month
It's been so long since I posted last, I barely knew how to log back into my blogger site. Thankfully when I finally figured it all out, my computer remembered by password so I was able to log in and here I am. I promised I would post sometime this month because it's Brain Cancer Awareness month and well.... I have brain cancer so that just seems logical.
I was very active during my diagnosis and treatment with my blog, for some reason my blog really helped me process things and allowed me get things off my mind and was the best therapy to keep me in a good frame of mind. My nightly postings slowly turned to weekly posts which turned to monthly posts and then kind of stopped altogether. Since it's brain cancer awareness month I decided to log back in and get a blog post up this month. A post to update those that followed my journey and have asked how we are doing, to raise awareness and to reach anyone who was recently diagnosed and is just starting their battle.
When I was first diagnosed, I searched the internet to get an idea of what was ahead of me. I wanted to know just how bad radiation and chemo would be, how it would affect my family, how much help I would need, what life would look like after treatment, etc. I found lots of articles and blogs from people that talked about diagnosis and what it was like to go through radiation and chemo but what I REALLY wanted and could not find was an update from someone who was a few years out of treatment. I wanted to hear from someone that went through the treatments and was just living life. I wanted to see a person that was diagnosed 2, 3, 5 or even 10 years ago. I wanted to hear how their experience was and what life was like for them now. I never really found that article that gave me hope and an idea of what lie would be like after the chaos of treatment settled down. So I figured I would write one myself.
If you were recently diagnosed or know someone who was, below is a quick summary of my journey and an idea of what life is like now. If you were recently diagnosed or are currently undergoing treatment please read on and know you can do this. You will make it through the surgery, through the radiation, through the chemo. After diagnosis everything happens so quickly, it's honestly a blur for me but here I am 3-1/2 years later finally sitting down to think about and share my journey. Here is a quick recap of my story and more importantly a look at my life AFTER treatment.
I was diagnosed 3-1/2 years ago in December of 2013. I had no symptoms. I woke up in the middle of the night, my left leg was numb, as I walked around my house trying to figure out what was wrong I got stuck walking in a circle in my bathroom. I knew I was walking in a circle but I could not stop and walk to my bed. I called for my husband, as he got into the bathroom I had a grand mal seizure. He lowered me to the ground so he could get his phone to call 911. I was taken via ambulance to the hospital where we were told I had a large brain tumor. I was a perfectly healthy mom in my early 30's. It was a shock. I was immediately transferred Froedtert Medical College where I underwent a ton of imaging and was immediately prepped and went in for surgery. My tumor was large, 2cm x 7cm x 3cm. Many people are able to have their tumor mostly or completely removed during surgery. My tumor was NOT removed. I think a lot of people assume my tumor was taken out during surgery or disappeared during radiation and chemo but that is not the case. I am still walking around with this big tumor in my head. The neurosurgeon would only remove the tumor if he was sure he could get at least 90% of it. During the surgery he made the call that he did not think he would be able to get 90% and it would have been to risky. I was young, healthy and had no symptoms so why poke around anymore than needed. They took what they needed to get the biopsy and they basically closed my head back up. Most people I read about were able to have most or all of their tumors removed so I was scared it wasn't the case with me. So to anyone out there that has recently gone through surgery and is worried their tumor was not removed, have faith, I am right there with you. It's strange to think that I am walking around with a big tumor up there but so far it's very well behaved. :)
Radiation and chemo were not as bad as I thought they would be. There is absolutely no pain at all involved with radiation. It's takes awhile to get you situated and your head in position and secured but the actual radiation takes about 20 seconds and it just sounds like you are next to a bug zapper. The machine turns off and you are done. The radiation kills off all fast growing cells which is the cancerous cells which is great but you also lose your hair. They don't use radiation on your entire head so it will fall out in a weird pattern. I think my hair started falling out about 2 weeks into radiation. By week 3 and 4 I started getting pretty tired and fatigued but it was manageable. I finished up my full 6 weeks and was given a short break to let my body try to recover and then we started the chemo.
Yikes... my hair was so crazy! The radiation is so precise, look how straight the line at the back of my head is. That is just how the hair naturally fell out.
It was 12 full months of oral chemo. Essentially I got 7 days of chemo and then 21 days off for a full year. Chemo was exhausting, by day 2 or 3 of my 7 days of treatment I was TIRED. I would wake up and get the boys to school and then sometimes sleep for 5 hours and get up in time to pick the boys up. I was so thankful that I had such a great support system and an amazing husband that allowed me to rest while my body tried to get through it all. During that year of chemo there was lots of MRI's, lots of bloodwork, lots of doctor appointments but the year passed pretty quickly. Although I was tired, it wasn't horrible. I stayed pretty positive through out.
chemo, chemo, chemo
Emotional blog about my last month of chemo
Chemo.... done!
My real struggles started AFTER I was done with treatment. No one really warned me how hard it was to just try and be normal again. During treatment you feel like a fighter, you are putting your body through hell but you know you are actively fighting this disease. Once I was done, I still knew I had the large brain tumor. Chemo did shrink it a little bit but it was still there. It felt like now we were just kind of throwing our hands up and just waiting for it to grow again. That is not the case, we kicked that tumor's ass for 13-1/2 months and it's not like I could be on chemo for life, that would be terrible. It just seemed eerily quiet. I thought it would be nice to get back to "normal" life but I was not the same person. After some gentle hints from Jamie I finally when in and talked with a therapist that reassured me everything I was feeling was totally normal. She said some people really struggle mentally through diagnosis and treatment and some people are really positive and strong through diagnosis and treatment but then feel lost afterwards. I obviously fit the second category. So the year or two after treatment was a struggle. Trying find myself again. Trying to get back into a regular routine. My life had revolved around chemo, doctor's appointments and exhaustion for so long. Now I was just supposed to slide back into society.
The last few years have been a journey. I think I am finally coming to terms with the fact that I am NOT the same person as before but that is okay. I was so hard on myself at first. You always hear people say things like "this will make you appreciate every moment". That is true but it also puts more pressure on you. I am sure all mom's would agree you go to bed many nights wishing you had spent more time with your kids, not lost your temper, had more patience. Now imagine feeling like that knowing you have cancer and having the added pressure of "what is wrong with you, you stared death in the face, YOU of all people should appreciate every moment". Well after so long you just have to say f*ck it. I went through some crappy stuff, yes I love and appreciate my life more than I did before but doesn't mean my world is now filled with rainbows and unicorn dust and that I have to be happy 100% of the time. I can still get annoyed when the boys are fighting all day, I can still say no to one more book at bedtime because I am exhausted and just need to veg on the couch for a minute, I can still say no to a get together because I just don't feel up to it. I don't have to seize the day every single day, why did I feel so much pressure about that? Why do I feel that I need to be an ever bigger and better person because I have cancer. Sometimes I just want to be a regular, tired and disorganized. I do want to live life to the fullest and enjoy every minute I just don't want the extra pressure of it because of a diagnosis. I just want to be me.
Another big challenge for me has been the fact that I feel like cancer took away a big part of who I am/was. I was an athlete my entire life. I was always relatively in shape and fit and always had a bit of spunk in me. I know people naturally change as they have kids and get older. However, I feel a lot of my changes were caused by stupid cancer. I gained almost 35lbs after my brain surgery from the steroids I had to take to reduce swelling in my brain so I did not have another seizure. I think went through treatment for over a year that left me weak and tired. Here I am 2 years after treatment and I am still struggling to run 3 miles. I feel a little crazy while I am out for my runs, one minute I am thinking "it's okay, just slow down you have nothing to prove you've been through a lot" and the next minute I am thinking "come on, you can do this, push yourself, don't be a wimp, run harder". I wish I would have tried to exercise more during treatment but I honestly don't think I could have, it literally took everything I had to just keep up with Owen and Jacob.
The other big struggle for me is my memory and multitasking. Jamie will be the first to tell you that multi-tasking was NEVER my strong suit but it's REALLY bad now. Poor Jamie just picks up the slack and gets things done. If it weren't so frustrating for me I would probably find it comical. Just trying to pack for a weekend away or packing the car to go to Great America and having extra clothes, a picnic lunch, etc. I am horrible at it. I find myself walking circles trying to remember what I am supposed to be doing.
SO back to the positive, as that was the reason for my post. Something to give hope to someone just diagnosed with brain cancer. Literally, it's 3-1/2 years later and my biggest complaints are being too critical of myself, not being as fit or energetic and basically being an airhead. Not much to complain about at all. I am sure lots of people feel these things and they are not dealing with cancer.
I was very active during my diagnosis and treatment with my blog, for some reason my blog really helped me process things and allowed me get things off my mind and was the best therapy to keep me in a good frame of mind. My nightly postings slowly turned to weekly posts which turned to monthly posts and then kind of stopped altogether. Since it's brain cancer awareness month I decided to log back in and get a blog post up this month. A post to update those that followed my journey and have asked how we are doing, to raise awareness and to reach anyone who was recently diagnosed and is just starting their battle.
When I was first diagnosed, I searched the internet to get an idea of what was ahead of me. I wanted to know just how bad radiation and chemo would be, how it would affect my family, how much help I would need, what life would look like after treatment, etc. I found lots of articles and blogs from people that talked about diagnosis and what it was like to go through radiation and chemo but what I REALLY wanted and could not find was an update from someone who was a few years out of treatment. I wanted to hear from someone that went through the treatments and was just living life. I wanted to see a person that was diagnosed 2, 3, 5 or even 10 years ago. I wanted to hear how their experience was and what life was like for them now. I never really found that article that gave me hope and an idea of what lie would be like after the chaos of treatment settled down. So I figured I would write one myself.
If you were recently diagnosed or know someone who was, below is a quick summary of my journey and an idea of what life is like now. If you were recently diagnosed or are currently undergoing treatment please read on and know you can do this. You will make it through the surgery, through the radiation, through the chemo. After diagnosis everything happens so quickly, it's honestly a blur for me but here I am 3-1/2 years later finally sitting down to think about and share my journey. Here is a quick recap of my story and more importantly a look at my life AFTER treatment.
I was diagnosed 3-1/2 years ago in December of 2013. I had no symptoms. I woke up in the middle of the night, my left leg was numb, as I walked around my house trying to figure out what was wrong I got stuck walking in a circle in my bathroom. I knew I was walking in a circle but I could not stop and walk to my bed. I called for my husband, as he got into the bathroom I had a grand mal seizure. He lowered me to the ground so he could get his phone to call 911. I was taken via ambulance to the hospital where we were told I had a large brain tumor. I was a perfectly healthy mom in my early 30's. It was a shock. I was immediately transferred Froedtert Medical College where I underwent a ton of imaging and was immediately prepped and went in for surgery. My tumor was large, 2cm x 7cm x 3cm. Many people are able to have their tumor mostly or completely removed during surgery. My tumor was NOT removed. I think a lot of people assume my tumor was taken out during surgery or disappeared during radiation and chemo but that is not the case. I am still walking around with this big tumor in my head. The neurosurgeon would only remove the tumor if he was sure he could get at least 90% of it. During the surgery he made the call that he did not think he would be able to get 90% and it would have been to risky. I was young, healthy and had no symptoms so why poke around anymore than needed. They took what they needed to get the biopsy and they basically closed my head back up. Most people I read about were able to have most or all of their tumors removed so I was scared it wasn't the case with me. So to anyone out there that has recently gone through surgery and is worried their tumor was not removed, have faith, I am right there with you. It's strange to think that I am walking around with a big tumor up there but so far it's very well behaved. :)
Radiation and chemo were not as bad as I thought they would be. There is absolutely no pain at all involved with radiation. It's takes awhile to get you situated and your head in position and secured but the actual radiation takes about 20 seconds and it just sounds like you are next to a bug zapper. The machine turns off and you are done. The radiation kills off all fast growing cells which is the cancerous cells which is great but you also lose your hair. They don't use radiation on your entire head so it will fall out in a weird pattern. I think my hair started falling out about 2 weeks into radiation. By week 3 and 4 I started getting pretty tired and fatigued but it was manageable. I finished up my full 6 weeks and was given a short break to let my body try to recover and then we started the chemo.
Yikes... my hair was so crazy! The radiation is so precise, look how straight the line at the back of my head is. That is just how the hair naturally fell out.
It was 12 full months of oral chemo. Essentially I got 7 days of chemo and then 21 days off for a full year. Chemo was exhausting, by day 2 or 3 of my 7 days of treatment I was TIRED. I would wake up and get the boys to school and then sometimes sleep for 5 hours and get up in time to pick the boys up. I was so thankful that I had such a great support system and an amazing husband that allowed me to rest while my body tried to get through it all. During that year of chemo there was lots of MRI's, lots of bloodwork, lots of doctor appointments but the year passed pretty quickly. Although I was tired, it wasn't horrible. I stayed pretty positive through out.
My real struggles started AFTER I was done with treatment. No one really warned me how hard it was to just try and be normal again. During treatment you feel like a fighter, you are putting your body through hell but you know you are actively fighting this disease. Once I was done, I still knew I had the large brain tumor. Chemo did shrink it a little bit but it was still there. It felt like now we were just kind of throwing our hands up and just waiting for it to grow again. That is not the case, we kicked that tumor's ass for 13-1/2 months and it's not like I could be on chemo for life, that would be terrible. It just seemed eerily quiet. I thought it would be nice to get back to "normal" life but I was not the same person. After some gentle hints from Jamie I finally when in and talked with a therapist that reassured me everything I was feeling was totally normal. She said some people really struggle mentally through diagnosis and treatment and some people are really positive and strong through diagnosis and treatment but then feel lost afterwards. I obviously fit the second category. So the year or two after treatment was a struggle. Trying find myself again. Trying to get back into a regular routine. My life had revolved around chemo, doctor's appointments and exhaustion for so long. Now I was just supposed to slide back into society.
The last few years have been a journey. I think I am finally coming to terms with the fact that I am NOT the same person as before but that is okay. I was so hard on myself at first. You always hear people say things like "this will make you appreciate every moment". That is true but it also puts more pressure on you. I am sure all mom's would agree you go to bed many nights wishing you had spent more time with your kids, not lost your temper, had more patience. Now imagine feeling like that knowing you have cancer and having the added pressure of "what is wrong with you, you stared death in the face, YOU of all people should appreciate every moment". Well after so long you just have to say f*ck it. I went through some crappy stuff, yes I love and appreciate my life more than I did before but doesn't mean my world is now filled with rainbows and unicorn dust and that I have to be happy 100% of the time. I can still get annoyed when the boys are fighting all day, I can still say no to one more book at bedtime because I am exhausted and just need to veg on the couch for a minute, I can still say no to a get together because I just don't feel up to it. I don't have to seize the day every single day, why did I feel so much pressure about that? Why do I feel that I need to be an ever bigger and better person because I have cancer. Sometimes I just want to be a regular, tired and disorganized. I do want to live life to the fullest and enjoy every minute I just don't want the extra pressure of it because of a diagnosis. I just want to be me.
Another big challenge for me has been the fact that I feel like cancer took away a big part of who I am/was. I was an athlete my entire life. I was always relatively in shape and fit and always had a bit of spunk in me. I know people naturally change as they have kids and get older. However, I feel a lot of my changes were caused by stupid cancer. I gained almost 35lbs after my brain surgery from the steroids I had to take to reduce swelling in my brain so I did not have another seizure. I think went through treatment for over a year that left me weak and tired. Here I am 2 years after treatment and I am still struggling to run 3 miles. I feel a little crazy while I am out for my runs, one minute I am thinking "it's okay, just slow down you have nothing to prove you've been through a lot" and the next minute I am thinking "come on, you can do this, push yourself, don't be a wimp, run harder". I wish I would have tried to exercise more during treatment but I honestly don't think I could have, it literally took everything I had to just keep up with Owen and Jacob.
The other big struggle for me is my memory and multitasking. Jamie will be the first to tell you that multi-tasking was NEVER my strong suit but it's REALLY bad now. Poor Jamie just picks up the slack and gets things done. If it weren't so frustrating for me I would probably find it comical. Just trying to pack for a weekend away or packing the car to go to Great America and having extra clothes, a picnic lunch, etc. I am horrible at it. I find myself walking circles trying to remember what I am supposed to be doing.
SO back to the positive, as that was the reason for my post. Something to give hope to someone just diagnosed with brain cancer. Literally, it's 3-1/2 years later and my biggest complaints are being too critical of myself, not being as fit or energetic and basically being an airhead. Not much to complain about at all. I am sure lots of people feel these things and they are not dealing with cancer.
Google told me statistically I would live for about 5 years after diagnosis. Well guess what, it's been 3-1/2 and I can tell you with certainty I have many, many MANY more years ahead of me. Yes, I am tired, yes I feel unorganized and dumb some days and yes I am not happy with how I look (did I mention the weird bald spots I STILL have on my head) BUT guess what, I am alive. Not only am I alive but I am loving life. I am not just surviving, depressingly trying to breath in every moment because I fear each day could be my last. For the most part I don't even remember I have brain cancer. I go about my day like any other person. I grocery shop, take the boys to and from school, enjoy dates with my husband, fold laundry, dance in my car, help Owen with homework, plan fun trips with the family... I just get to live a normal life. I did not expect that when I was diagnosed. I never saw anyone out there just living a regular life who had brain cancer. Most likely because they aren't some sickly looking person with a sign over their head that said "I have brain cancer". They were just a regular active person....like me.
So to anyone out there struggling or fearful. Here I am, this is what brain cancer looks like for me.
Have faith, be strong, YOU GOT THIS.
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