When in radiation therapy wednesdays are doctor days. Every wednesday we meet with our radiology oncologist for a check up. He checks on side effects, and an overall well being check. (the radiation therapists check daily as well). So today we met with the doc. We are going to try a heavier dose of steroids to help my headaches. Im not looking forward to it to be honest. Steroids give me insomnia. It doesnt matter when I take them, I will not sleep. So bring on the joy of no sleep for me. Other than that Im doing okay.
We also took Elliot to see the dermatologist today. Little man had a mole on his foot that concerned us. I know Im more paranoid about melanoma than the average person, but come on. I was worried. The doctor was not worried at all at his foot. Its a perfect little mole. Nothing abnormal about it. Shes not worried about him at all. We will go back in 6 months to take another look at it, but as of right now everything is good! So that is a bit of good news for us, and one less thing to worry about.
July 31, 2013
July 30, 2013
Tuesday Update
Radiation went as expected today. Same ole same ole. Nothing new to report on that front. We did however see my oncologist today. He talked to us about the plan for after radiation. As of right now we have a few drug options. Everything hinges on what my next set of scans show. We are going to have the scans September 3rd, and see the doctor September 4th. Depending on if my mets have grown, stayed the same, or if cancer has spread to other areas of my body will decide on our next course of treatment.
We had calls in for a second and third opinion on my case. We heard back on those opinions today. Basically, no one can touch me until radiation is done. Once we get the results from scans it will decide on what they can do. Right now we dont qualify for any clinical trials, or anything. Everything our doctor is doing is what they would do too. They have my case files, and we will keep in touch with them, but as of right now they cant do anything for me. We are following the standard treatment here in NWA. That helps us feel more confident in our doctors treatment plan. Still sucks, but ehh at least we tried other opinions.
We have now transitioned into a period of simply stalling the cancer. There is no cure, this isnt going away. All we are doing is buying time. My goal is to get as much time as possible. We dont have a number, a date, or anything like that. More will be known in september, and we will have a better idea at that time. The clock is ticking right now, but to put it in perspective? Everyones clock is ticking. It just makes us put things into perspective about whats important in life.
So now we wait. We wait to see what the scans show, and work thru the upcoming radiation treatments.
We had calls in for a second and third opinion on my case. We heard back on those opinions today. Basically, no one can touch me until radiation is done. Once we get the results from scans it will decide on what they can do. Right now we dont qualify for any clinical trials, or anything. Everything our doctor is doing is what they would do too. They have my case files, and we will keep in touch with them, but as of right now they cant do anything for me. We are following the standard treatment here in NWA. That helps us feel more confident in our doctors treatment plan. Still sucks, but ehh at least we tried other opinions.
We have now transitioned into a period of simply stalling the cancer. There is no cure, this isnt going away. All we are doing is buying time. My goal is to get as much time as possible. We dont have a number, a date, or anything like that. More will be known in september, and we will have a better idea at that time. The clock is ticking right now, but to put it in perspective? Everyones clock is ticking. It just makes us put things into perspective about whats important in life.
So now we wait. We wait to see what the scans show, and work thru the upcoming radiation treatments.
July 29, 2013
All About Elliot!
My little man is officially 14 months old. Its been crazy lately. Hes growing up so fast. This past week hes learned quite a few new things. He runs around the house like he owns the place (which he kinda does) lol. We got him a teddy bear, as we felt it was important for a kid to have a real bear. He didnt have one, and we felt that every kid needs one. Once he got the bear in his little hands he refused to let it go. He loves the thing! So far he drags it around everywhere.
We had an awesome couple send Little man a gift of colored body paint for his bath. He loved it! Turned himself blue, and smelled fruity good. (paints smelled like fruit). Luckily, they were washable and didnt stain him blue. That would be quite the sight! Tried to get pictures of the fun, but its really hard to control a baby, and paint in a tub. Let alone add a camera into the fun.
Here are some new tricks baby has up his sleeve-
- learned how to climb up onto the couch. Now no where is safe!
- loves to steal Da Da' s hat and wear it running around.
- Started picking up stuff off the floor and bringing it to me. Fuzz etc.
- Is going to turn into a gold fish. His new fav snack is gold fish.
- Points at everything wanting to know what it is. Then he tries to repeat.
Baby is growing up fast... I cant wait to see what he learns in this next month. Hes gotta keep us on our toes!
We had an awesome couple send Little man a gift of colored body paint for his bath. He loved it! Turned himself blue, and smelled fruity good. (paints smelled like fruit). Luckily, they were washable and didnt stain him blue. That would be quite the sight! Tried to get pictures of the fun, but its really hard to control a baby, and paint in a tub. Let alone add a camera into the fun.
Here are some new tricks baby has up his sleeve-
- learned how to climb up onto the couch. Now no where is safe!
- loves to steal Da Da' s hat and wear it running around.
- Started picking up stuff off the floor and bringing it to me. Fuzz etc.
- Is going to turn into a gold fish. His new fav snack is gold fish.
- Points at everything wanting to know what it is. Then he tries to repeat.
Baby is growing up fast... I cant wait to see what he learns in this next month. Hes gotta keep us on our toes!
Monday Monday...
Treatment went as usual today. In and out no fuss. My headache is already started back. Treatment seems to cause the headaches to be much worse. Dont get me wrong, my head always hurts, just it significantly increases on treatment day. Im a bit fuzzy/loopy today as well. Im having a hard time focusing. That could be due to the headache or just another side effect. My scalp is also getting tender again. Back in December it felt this way before my hair fell out, then for a while afterwards while it healed. Seems that the radiation dries my skin out badly.
Tomorrow we have another doctors appointment with my oncologist. Im not sure what we are going to talk about. Hopefully the second opinions he was trying to get. We cant start much of anything until we know how radiation is doing. Im looking forward to what he may or may not say.
Im doing pretty good compared to how it sounds. Loads of naps happening. It seems the only way to keep the headaches down is to nap. My grandmother made me a quilt and gave it to me this weekend. Its the perfect napping quilt! Elliot even loves curling up on it. Hes recently learned how to get onto the couch. (my new nightmare) For now, Im going to go take a nap. I will update tomorrow once I get more info.
Tomorrow we have another doctors appointment with my oncologist. Im not sure what we are going to talk about. Hopefully the second opinions he was trying to get. We cant start much of anything until we know how radiation is doing. Im looking forward to what he may or may not say.
Im doing pretty good compared to how it sounds. Loads of naps happening. It seems the only way to keep the headaches down is to nap. My grandmother made me a quilt and gave it to me this weekend. Its the perfect napping quilt! Elliot even loves curling up on it. Hes recently learned how to get onto the couch. (my new nightmare) For now, Im going to go take a nap. I will update tomorrow once I get more info.
July 27, 2013
Lazy Saturday
We didnt do much today. Eric had to work so I hung around the house with Elliot. We napped, and did some basic housework. I also managed to get some baby stuff around to give to my sister. (shes pregnant, and due in october). So a basic lazy day. Dinner was at my parents house. They made me a veggie option, along with steak and fish. YUMMY!!
Today was a nice break from radiation. My headache is still here, but less intense. It always seems to get worse after my radiation treatment, so today was a nice break. Im still tired but thats to be expected. My vision is slightly worse. It seems to be getting more blurry, but nothing I cant handle. My reading comprehension hasnt changed. As of right now Im exhausted and ready for bed. Overall its been an uneventful day.
Today was a nice break from radiation. My headache is still here, but less intense. It always seems to get worse after my radiation treatment, so today was a nice break. Im still tired but thats to be expected. My vision is slightly worse. It seems to be getting more blurry, but nothing I cant handle. My reading comprehension hasnt changed. As of right now Im exhausted and ready for bed. Overall its been an uneventful day.
July 26, 2013
TGIF! 5th Radiation treatment!
My awesome kiddo decided to wake me up at 5am this morning. Apparently, he decided it was time to get up and play! So I drug my butt out of bed and we played. Once Eric got up we swapped baby duty, and I went back to bed. I managed to take a 2 hour nap before time to go to my radiation treatment.
Todays treatment was at a different time. Normally I go in at 840, but today they were updating the systems/equipment or something, so they moved my appt to 11. It really helped with my extra nap. Once radiation was done, we came home, had lunch then back to bed for me! Elliot and I took a nice long afternoon nap. What else are you supposed to do on rainy days?
Im doing pretty good with the treatments so far. However, its early so most side effects are still a ways off. My headaches are consistent, and sometimes worse at different parts of the day. Im also sleepy, and all around more tired.
I dont have treatment on the weekends, so now we get a 2 day break. Im planning on napping, and just being lazy. :)
Todays treatment was at a different time. Normally I go in at 840, but today they were updating the systems/equipment or something, so they moved my appt to 11. It really helped with my extra nap. Once radiation was done, we came home, had lunch then back to bed for me! Elliot and I took a nice long afternoon nap. What else are you supposed to do on rainy days?
Im doing pretty good with the treatments so far. However, its early so most side effects are still a ways off. My headaches are consistent, and sometimes worse at different parts of the day. Im also sleepy, and all around more tired.
I dont have treatment on the weekends, so now we get a 2 day break. Im planning on napping, and just being lazy. :)
July 24, 2013
Vacation Wrap Up
Our vacation was wonderful. A dream come true. We left around midnight, arrived Tuesday, and were back home early Monday morning. Almost an entire week on the beautiful sandy beach. We were blessed with a privately owned beach house to borrow for the week. Not a rental, just a kind heart willing to let us use the place. Private neighborhood, private beach, anything a girl could ask for. Their kindness brings me to tears. They helped me have the vacation of a lifetime.
We watched Elliot experience his first beach adventure. The sand, the ocean was all too much to take in. He loved playing in the sand. He hated the ocean. He would run up to the waters edge, point, and scream. Then would promptly run off, then repeat the whole thing again. Up higher on the beach he was fine. Just give the boy a bucket and shovel, and he was happy.
Our sad sandcastle was built a few days later. Sad that 4 adults helped create a pitiful castle. Lets admit, we had no idea what we were doing. Our castle ended up looking like a run down fortress. Or "burial mound" as my husband would say. I guess we are not castle builders.
Eric and I took long walks to the beach each night. My parents watched the baby while we went out to walk. It may be cliche but I love walking the beach at night. Watching the sunset on the water, seeing the stars come out. We took pictures, talked, played in the sand just the two of us. A few moments alone to forget everything happening. Our nights walking were bliss.
Now all that said, we did have time to shop! Mom and I would sneak out while Elliot napped (Paw Paw, and Dad on baby duty) and go out to the outlet/malls. I think Elliot got an entire new wardrobe! We also got a few goodies for ourselves. I managed to get a new outfit, and some comfy clothes for around the house. Me finding anything is always a treat.
To sum it up, it was the perfect get away. We had some wonderful food, shopping, and playtime. I think it helped take our minds off everything thats going on, and whats to come. For a few days it helped us feel normal. We were truly blessed that my parents were able to accompany us and arrange the entire vacation for us. It allowed us to have some much needed family time together. Ill admit that there were times tears were shed, but for the most part we kept positive outlooks. I cannot begin to thank the people that allowed this to happen. I am forever in their debt, and truly blessed at the sheer kindness people have shown me and my family.
Now for the good stuff...Pictures!
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| Elliot and Paw Paw |
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| Picture of our walk to the beach |
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| Car ride home...no makeup. Baby ready to get out! |
Day 3- Radiation
Today was fairly easy. My headaches we got pretty much under control with the help of mild steroids. I get the headaches approx 2-3 hours after treatment. At that time I also get sleepy. Its a side effect of the radiation. Today I came home and napped for about 3 hours, which greatly helped. The steroids really mess with my tummy. It makes it difficult to eat. Last time I developed ulcers, so that brought on a bunch more medication. Ive started the meds to help my tummy, but so far no such luck. So its eat what I can, and drink lots of fluids.
Even with the new side effects I think Im doing pretty good. Hair is still intact. That wont likely start falling out for another few treatments. Maybe another week or so. It really just depends. It will fall out though. Just now is the time to take bets as to when.
My radiation therapist was asking me about my eyesight today. So far so good. No real changes. They never know what may happen with it. Heck, they dont know why I can see out of one eye at all right now! My vision in my right eye should be gone. We've beat the odds so far. For now Im a walking mystery. Sometimes I feel like a time bomb waiting to go off. Will I wake up and still have eyesight? No one knows. They keep saying Im a special case. Its true. Too bad it leaves so much up in the air. Eric keeps telling me to focus on right now. Right now? I can see, Im getting the side effects under control, and happy. So for right now, I am good.
Even with the new side effects I think Im doing pretty good. Hair is still intact. That wont likely start falling out for another few treatments. Maybe another week or so. It really just depends. It will fall out though. Just now is the time to take bets as to when.
My radiation therapist was asking me about my eyesight today. So far so good. No real changes. They never know what may happen with it. Heck, they dont know why I can see out of one eye at all right now! My vision in my right eye should be gone. We've beat the odds so far. For now Im a walking mystery. Sometimes I feel like a time bomb waiting to go off. Will I wake up and still have eyesight? No one knows. They keep saying Im a special case. Its true. Too bad it leaves so much up in the air. Eric keeps telling me to focus on right now. Right now? I can see, Im getting the side effects under control, and happy. So for right now, I am good.
Radiation day 2 wrap up
Day 2 of radiation is complete. Yesterday it was a quick in and out appointment. I run in, and approx 10 minutes later Im done and out the door headed home. The one perk about brain radiation is I dont have to get undressed. They cant have anything covering the area, so lucky me! The only thing Im not allowed to wear to treatment is earrings, or anything bulky around my neck.
Now, when I walk in there are 2 waiting rooms. One initial staging. This is where the family waits. I then go back into patient waiting. Its where we all sit in a row ready for treatment. Most people at this point are in gowns. (not me! ) Down side to no gown? Other patients look at you odd, but I get over it. Once my hair starts falling out in patches they get the idea. It seems to take the other patients a while to warm up to talking to each other. In my first round of radiation, I was blessed with a bunch of nice ladies to speak with. This time its a bunch of gentlemen, they arent chatty at all :).
The mornings are my best times of day. Very little to no pain. Granted I tend to be up 2am isn, due to them putting me back on steroids for pain. It helps the brain swelling, which is causing the headaches. Only so much room up there ya know? The headaches start about 2 hours after treatment. This is the time patients start feeling the side effects. Tiredness, nausea etc. Me? Its massive, painful headaches. It feels like my brain is trying to escape thru my nose, eyes, and ears. The steroids seem to be helping, so hopefully today wont be as bad.
Yesterday, after treatment my Mom took me for a pedicure! I know in my lovely age of 28, I have never had one before. Shocking right!? I loved it! Im ticklish, so Ive always been hesitant to get one. But, the nice foot massage, foot soak, and new paint was a fun experience. Talk about feeling pampered. Now I know why people go get them so often. Shortly after the pedi, the headache started in. Apparently I was done for the day. I did get time however, to visit with my dad, and sister in law. Both of which stopped by to say hello, and drop a few goodies off. I am very blessed to have such a wonderful support team and strong family helping me.
Now, when I walk in there are 2 waiting rooms. One initial staging. This is where the family waits. I then go back into patient waiting. Its where we all sit in a row ready for treatment. Most people at this point are in gowns. (not me! ) Down side to no gown? Other patients look at you odd, but I get over it. Once my hair starts falling out in patches they get the idea. It seems to take the other patients a while to warm up to talking to each other. In my first round of radiation, I was blessed with a bunch of nice ladies to speak with. This time its a bunch of gentlemen, they arent chatty at all :).
The mornings are my best times of day. Very little to no pain. Granted I tend to be up 2am isn, due to them putting me back on steroids for pain. It helps the brain swelling, which is causing the headaches. Only so much room up there ya know? The headaches start about 2 hours after treatment. This is the time patients start feeling the side effects. Tiredness, nausea etc. Me? Its massive, painful headaches. It feels like my brain is trying to escape thru my nose, eyes, and ears. The steroids seem to be helping, so hopefully today wont be as bad.
Yesterday, after treatment my Mom took me for a pedicure! I know in my lovely age of 28, I have never had one before. Shocking right!? I loved it! Im ticklish, so Ive always been hesitant to get one. But, the nice foot massage, foot soak, and new paint was a fun experience. Talk about feeling pampered. Now I know why people go get them so often. Shortly after the pedi, the headache started in. Apparently I was done for the day. I did get time however, to visit with my dad, and sister in law. Both of which stopped by to say hello, and drop a few goodies off. I am very blessed to have such a wonderful support team and strong family helping me.
July 22, 2013
We are back!
This is going to be a very quick post. We got back from Florida early this morning. The trip went well, just long and exhausting. I will have more on our vacation at a later time.
This morning I had my first radiation treatment. Whole brain radiation to be exact. This radiation was different from the radiation I had before christmas. Its more intense as its focused on my entire head, vs just one area. As of 1-2 hours after my treatment one of the worst headaches of my life hit. (this is a side effect) Eric put me to bed to see if sleep would help. Its very close to the same headache I had when my tumor ruptured back in september. Nothing helps. I even broke out the steroids at the advice of my radiology-oncologist. They gave me the option to take them to see if they would help the headaches, if they started. So far they dose I took hasnt helped. We just brought out the big guns and added heavy duty pain killers to it. Im in bed and planning on going back to sleep ASAP. Nothing is helping so far, and I simply feel like my brain is trying to escape thru my head and ears. This is due to radiation causing brain swelling, add that to the fact the tumors/mets cause swelling as is. I have a lovely combo of awful pain.
I truly didnt think this pain would start this early. Last round it took 5 treatments or so for the pain and side effects to start. Im really disappointed right now that they started so early. Thats all I have right now. I cant quite see straight so Im going back to bed. Thank you for all your thoughts and prayers.
This morning I had my first radiation treatment. Whole brain radiation to be exact. This radiation was different from the radiation I had before christmas. Its more intense as its focused on my entire head, vs just one area. As of 1-2 hours after my treatment one of the worst headaches of my life hit. (this is a side effect) Eric put me to bed to see if sleep would help. Its very close to the same headache I had when my tumor ruptured back in september. Nothing helps. I even broke out the steroids at the advice of my radiology-oncologist. They gave me the option to take them to see if they would help the headaches, if they started. So far they dose I took hasnt helped. We just brought out the big guns and added heavy duty pain killers to it. Im in bed and planning on going back to sleep ASAP. Nothing is helping so far, and I simply feel like my brain is trying to escape thru my head and ears. This is due to radiation causing brain swelling, add that to the fact the tumors/mets cause swelling as is. I have a lovely combo of awful pain.
I truly didnt think this pain would start this early. Last round it took 5 treatments or so for the pain and side effects to start. Im really disappointed right now that they started so early. Thats all I have right now. I cant quite see straight so Im going back to bed. Thank you for all your thoughts and prayers.
July 18, 2013
Where in the world....
Where in the world are the Schmits?? Today we were in the white sandy beaches of Miramar, FL. We left monday night for the long car journey here. My parents joined Eric and I on this adventure. We were blessed to find a beach home last minute. A friend offered up their lovely home for us to use for the week. It came with a private beach, 2 pools, cabana boy that put up beach chairs and umbrellas! They have spoiled us. I cannot even begin to voice my thanks. It really does bring tears to my eyes to think how blessed we are with friends, and family offereing their help.
We've spent the past days on the beach and shopping. Elliot hates the beach. He loves the sand, but the sounds of the water scare him. He ran along the beach and loved it. My parents sat with him while we swam in the ocean. Elliot has been fun to watch during this experience. I cannot quite put into words this trip. It has been utterly amazing.
Now for the latest news. I spoke to the radiation group today. I start radiation Monday morning at 10:30. They are going to do 16 rounds of radiation. It really depends on how I do as to how much more I get. Its been interesting on the phone calls Ive gotten lately. The oncologist had a chaplin call me and attempt to talk to me. (I was at the beach, missed the call). I was shocked that they had her call. With the fun here its been taking our mind off my situation. We have a few more days to keep our minds off of this until we go back to reality.
I will try to update the blog over the next couple of days with our beach adventure.
We've spent the past days on the beach and shopping. Elliot hates the beach. He loves the sand, but the sounds of the water scare him. He ran along the beach and loved it. My parents sat with him while we swam in the ocean. Elliot has been fun to watch during this experience. I cannot quite put into words this trip. It has been utterly amazing.
Now for the latest news. I spoke to the radiation group today. I start radiation Monday morning at 10:30. They are going to do 16 rounds of radiation. It really depends on how I do as to how much more I get. Its been interesting on the phone calls Ive gotten lately. The oncologist had a chaplin call me and attempt to talk to me. (I was at the beach, missed the call). I was shocked that they had her call. With the fun here its been taking our mind off my situation. We have a few more days to keep our minds off of this until we go back to reality.
I will try to update the blog over the next couple of days with our beach adventure.
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| My little family |
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| Elliot running on the beach |
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| My parents!! Awww..... |
July 15, 2013
Radiation watch continues
Many are asking me today about my impending radiation treatments. So far we still dont know anything new. I spoke to the radiation nurse today. She informed me that the doctor and his team are still putting together the programming for my treatments. (its really quite a process that involves a team of people) They did say that I would for sure start treatment on Monday, 1 week from today. Its not like this is something we want them to rush. This is my brain and all. :)
Besides waiting to hear on the next doctors appoint, we have had a normal Monday. Had a lunch date with a friend, when shopping and did housework. This weekend was about the same. Girls night with dinner and a movie. No reason for life to come to a halt for some crummy news. At least thats my philosophy. So thats where we are. I dont expect any new news until later this week. That will just be when and how much radiation is needed. We already know Ill start next week... now its just a matter of how much.
Besides waiting to hear on the next doctors appoint, we have had a normal Monday. Had a lunch date with a friend, when shopping and did housework. This weekend was about the same. Girls night with dinner and a movie. No reason for life to come to a halt for some crummy news. At least thats my philosophy. So thats where we are. I dont expect any new news until later this week. That will just be when and how much radiation is needed. We already know Ill start next week... now its just a matter of how much.
July 12, 2013
Information Overload (read at your own risk)
I don't even know what to say. There isnt much to say really. Throughout this entire ordeal I never really thought it would get to this point. Hope? Denial? The point is here we are, and I just dont know what or how to think about it.
We met with my radiation oncologist today. He slowly walked us through what the other doctor had already told us. The cancer is back, and its bad. yes, yes... Its worse than we originally thought. I have 9 tumors/mets in my brain. However, the sack around my brain also has cancer, and the fluid is cancerous. The tumors/mets are spread out all over. Chemo doesnt reach the brain due to the blood/brain barrier so that option is out. The only thing to do is radiation. The trick with radiation? Ive already had high doses of it to my brain. The problem is melanoma is stubborn and hard to kill. High doses of radiation are needed to eradicate it. That said, parts of my brain cant take that much radiation, so we are at a problem area.
What is the plan? The plan is to have 10-18 doses of all over brain radiation. At some point they will be protecting the part of my brain thats already have radiation. This will be radiation every day until we reach our limit. After this radiation session, radiation will no longer be an option for me in the future. My brain will have all it can take. (this is the bad news) Along with that, the likely-hood of this working is slim. It may erase, slow down, or shrink some of the tumors. It may even get most, but the likely hood of them coming back is high. They are also inoperable. So to sum this up, this treatment is just buying us time. It is not a cure.
The side effects are pretty bad. However, these effects could happen due to tumor growth just as easily as the radiation. They are as follows-
-stroke
-personality changes or loss of personality
-memory loss
-paralysis
-vision loss/ blindness
-cognitive slow down (everything takes longer to form thoughts/ideas)
-seizures
-hair loss (again going to rock the bald look)
-risk of tumor bursting (like what happened to my first one)
- and many other brain related issues
Its a bad situation no matter what route we chose. I choose to fight. Im taking the radiation as long as I can. If it buys me more time with my family, then thats what Im going to do. Some ask me if its worth it. To me it is. I would rather try to fight, then just sit here and do nothing.
There is a slim chance that all of this works. But its very very slim. The 6 month outlook with this diagnosis is 13% survival. Now, that said Ive already surpassed the last 'statistics'. According to them for my first brain tumor with lung involvement, I shouldnt be alive. So far Im still here. So that just tells you Im a "special case". The doctors when asked refuse to give me a time line. They simply say they cannot say just yet, and that we have today. I honestly think they are waiting to see how I respond to the radiation. That is what is going to tell us what to expect. As for me and my family, we are praying for the best, but preparing ourselves for the worst.
To sum up this epic long post, I have hope. Im still fighting. This is the worst news a person could get. All I could do was take a deep breath and think "that sucks", and proceed to try and crack jokes to make my husband laugh. I laugh to keep from crying. There is no use in crying, there is plenty of time for that later.
We met with my radiation oncologist today. He slowly walked us through what the other doctor had already told us. The cancer is back, and its bad. yes, yes... Its worse than we originally thought. I have 9 tumors/mets in my brain. However, the sack around my brain also has cancer, and the fluid is cancerous. The tumors/mets are spread out all over. Chemo doesnt reach the brain due to the blood/brain barrier so that option is out. The only thing to do is radiation. The trick with radiation? Ive already had high doses of it to my brain. The problem is melanoma is stubborn and hard to kill. High doses of radiation are needed to eradicate it. That said, parts of my brain cant take that much radiation, so we are at a problem area.
What is the plan? The plan is to have 10-18 doses of all over brain radiation. At some point they will be protecting the part of my brain thats already have radiation. This will be radiation every day until we reach our limit. After this radiation session, radiation will no longer be an option for me in the future. My brain will have all it can take. (this is the bad news) Along with that, the likely-hood of this working is slim. It may erase, slow down, or shrink some of the tumors. It may even get most, but the likely hood of them coming back is high. They are also inoperable. So to sum this up, this treatment is just buying us time. It is not a cure.
The side effects are pretty bad. However, these effects could happen due to tumor growth just as easily as the radiation. They are as follows-
-stroke
-personality changes or loss of personality
-memory loss
-paralysis
-vision loss/ blindness
-cognitive slow down (everything takes longer to form thoughts/ideas)
-seizures
-hair loss (again going to rock the bald look)
-risk of tumor bursting (like what happened to my first one)
- and many other brain related issues
Its a bad situation no matter what route we chose. I choose to fight. Im taking the radiation as long as I can. If it buys me more time with my family, then thats what Im going to do. Some ask me if its worth it. To me it is. I would rather try to fight, then just sit here and do nothing.
There is a slim chance that all of this works. But its very very slim. The 6 month outlook with this diagnosis is 13% survival. Now, that said Ive already surpassed the last 'statistics'. According to them for my first brain tumor with lung involvement, I shouldnt be alive. So far Im still here. So that just tells you Im a "special case". The doctors when asked refuse to give me a time line. They simply say they cannot say just yet, and that we have today. I honestly think they are waiting to see how I respond to the radiation. That is what is going to tell us what to expect. As for me and my family, we are praying for the best, but preparing ourselves for the worst.
To sum up this epic long post, I have hope. Im still fighting. This is the worst news a person could get. All I could do was take a deep breath and think "that sucks", and proceed to try and crack jokes to make my husband laugh. I laugh to keep from crying. There is no use in crying, there is plenty of time for that later.
July 10, 2013
The Fight Continues.
I had my scans done yesterday. We were not supposed to get the results until next week. Shockingly, they gave them to us same day. Its never a good sign when they rush you into the doctor after scans, and tell you to call your husband. I called Eric and waited for him in the office. Once he arrived the doctor was in the room within seconds. Then they broke the news.
The radiologist called with the results before the scans were even complete. They found changes in my brain, and the reason for my headaches. I have 9 new tumors/mets in my brain. They are not in any cluster, they are all over. Luckily we caught them early. They are small, but they are many. We got to see the scans ourselves. There were 9 flagged spots. I felt like the floor fell out from under us. 1 tumor I was okay with, 9 not so much.
We dont have much information right now. We have an appointment friday with our radiologist. We are going to do whole brain radiation to hopefully help the tumor situation. After that? We dont know. My oncologist is getting another opinion from a melanoma specialist in Tampa. My case is so unique that another opinion is certainly welcome. As of right now all we know is appt with radiologist friday. On friday we will find out the details: how much radiation, how often etc. My oncologist is looking into the plan for after radiation is complete. Watch and wait? Chemo? Clinical trial? We have no idea. We are taking it a day at a time.
To sum it up we just dont know. As soon as we find out we will share. This is a sensitive topic. Its really crummy news. The fight continues....
The radiologist called with the results before the scans were even complete. They found changes in my brain, and the reason for my headaches. I have 9 new tumors/mets in my brain. They are not in any cluster, they are all over. Luckily we caught them early. They are small, but they are many. We got to see the scans ourselves. There were 9 flagged spots. I felt like the floor fell out from under us. 1 tumor I was okay with, 9 not so much.
We dont have much information right now. We have an appointment friday with our radiologist. We are going to do whole brain radiation to hopefully help the tumor situation. After that? We dont know. My oncologist is getting another opinion from a melanoma specialist in Tampa. My case is so unique that another opinion is certainly welcome. As of right now all we know is appt with radiologist friday. On friday we will find out the details: how much radiation, how often etc. My oncologist is looking into the plan for after radiation is complete. Watch and wait? Chemo? Clinical trial? We have no idea. We are taking it a day at a time.
To sum it up we just dont know. As soon as we find out we will share. This is a sensitive topic. Its really crummy news. The fight continues....
July 8, 2013
Big Day Tomorrow
Tomorrow is the day. A full day of scans, sitting still, no food, and no babies. Im ready to get it over with. Being poked and prodded most of the day isnt exactly my favorite thing to do. So while Im dreading it, Im also looking forward to it. Im ready to know what the heck is going on if anything. Or if we have another few months of calmness.
Today I spent the day keeping busy. It was a lovely day for errands, and house cleaning. We finally took the tags off a new shirt my sister in law got for Elliot. Its pretty awesome if I do say so myself. It just so happens to have a superhero cape attached by velcro to the back. It was quite comical watching him run around. (granted he has no idea what the cape really is at this age) I got a few fun pictures.
Today I spent the day keeping busy. It was a lovely day for errands, and house cleaning. We finally took the tags off a new shirt my sister in law got for Elliot. Its pretty awesome if I do say so myself. It just so happens to have a superhero cape attached by velcro to the back. It was quite comical watching him run around. (granted he has no idea what the cape really is at this age) I got a few fun pictures.
July 6, 2013
Lazy Saturdays
What a day. I didnt sleep very well last night. Up multiple times during the night, and Elliot woke up at 4 am ready to go. We all had to take naps today! Im not sure why I havent been sleeping well. I still have the normal pain, and headaches. I guess in the bigger scheme of things Im worrying about the upcoming scans. What they will or will not show. The waiting game stinks.
I managed to get my walking to a more intense pace. I couldnt keep the brisk walk very long. Every huff and puff felt like knives in my lung. It was if I could feel the pain where the missing lung was. It didnt take long before I had to go slower so my breathing wasnt as hard. Hey, they told me it could be a long time to work up to anything strenuous. Ill accept walking for now.
After naps today we got Elliot outside for a bit in his pool. (best $20 we've spent! ) It was a bit chilly as we had to fill it back up after rinsing grass out of it. He still played in it for a while before getting cold. I sat back and watched him enjoy it. Hes quite the little water baby.
Thats it for now. Im off to bed early tonight. I have sleep to catch up on!
I managed to get my walking to a more intense pace. I couldnt keep the brisk walk very long. Every huff and puff felt like knives in my lung. It was if I could feel the pain where the missing lung was. It didnt take long before I had to go slower so my breathing wasnt as hard. Hey, they told me it could be a long time to work up to anything strenuous. Ill accept walking for now.
After naps today we got Elliot outside for a bit in his pool. (best $20 we've spent! ) It was a bit chilly as we had to fill it back up after rinsing grass out of it. He still played in it for a while before getting cold. I sat back and watched him enjoy it. Hes quite the little water baby.
Thats it for now. Im off to bed early tonight. I have sleep to catch up on!
July 4, 2013
Happy July 4th!
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| Loves playing in the ice |
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| Hanging out with Uncle Mike |
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| Asleep before fireworks. |
July 1, 2013
Just 9 Days
They finally called with the date for my next set of scans! July 9th bright and early. They are doing lab work, CT/ MRI and Pet scans. It will be a lovely day of siting and waiting. We wont get the official results until July 16th. (one week later). Im glad to finally have a date to put down on the calendar. It does worry me a bit that they ordered another CT scan. I just had one a couple weeks ago. (if you remember it was due to a odd looking chest x-ray, that we still arnt sure about)
Im a bit anxious. I left the office upset last time I was in. The chest x-ray scare ended with a lot of loose ends. This PET scan will officially determine if there is anything new in my lung. This will tell us 100% if its truly just surgical scarring, or new tumors. Im ready to know one way or another.
Other than that, Im doing okay. Ive decided for sure my toe is broken. (still hurts, but nothing can be done about it) Im having my daily headaches, and still the nerve pain. I know the list seems long, but its the same ole same ole stuff. The docs a bit concerned with my headaches, but so far hasnt found any cancer related issue to them. However, the normal headache remedies are not helping. Basically, Im just taking everything a day at a time.
Im a bit anxious. I left the office upset last time I was in. The chest x-ray scare ended with a lot of loose ends. This PET scan will officially determine if there is anything new in my lung. This will tell us 100% if its truly just surgical scarring, or new tumors. Im ready to know one way or another.
Other than that, Im doing okay. Ive decided for sure my toe is broken. (still hurts, but nothing can be done about it) Im having my daily headaches, and still the nerve pain. I know the list seems long, but its the same ole same ole stuff. The docs a bit concerned with my headaches, but so far hasnt found any cancer related issue to them. However, the normal headache remedies are not helping. Basically, Im just taking everything a day at a time.
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