2012 has been an interesting year for me and my family. My brother in law got married and added his lovely wife to our family. My son, Elliot, was born. Then my Melanoma was found. A person could easily focus on the bad here. I choose instead to focus on the positive. I have a beautiful baby boy, and wonderful extended family. Now as I try to look to the future I wonder what 2013 will bring us. I have a slew of appointments (all cancer related), cut Im also looking at the positive. Elliot will walk and talk in 2013 (crazy!!). I hope for myself to be 'healthier'. I say healthier as the fight will continue. I dont want to say the typical "I plan on starting a diet/ workout routine" or something like that. I more want to say that I plan on attempting to fight this from all battle fronts. I want to eat healthier, and start to attempt to walk more. For me doing the dishes is a challenge on the physical portion. Just standing that long means a nap. So when I say I want to try to walk, it means maybe to get the mail and back at this time. Point is, I want to try to get my strength up any way possible.
So as of right now, the important dates for 2013 for me are the following-
Jan 10th- Pet Scan, MRI, and Lab work. PET scan will light up all cancer in my body. We see if anything has grown since my last scan. MRI will be of my brain to also see if there are any new masses. PET scan is hard on me. Im radioactive for 24 hours. That said they wont allow me to hold or be near Elliot for 24 hours after the scan. I have to remain a 'couch length' away.
Jan 15th- Oncologist appointment with results of the scans.
Jan 16th- First Yerboy IV treatment. Crossing fingers that I respond well! This is to treat the stuff in my lungs, and anywhere else we find pesky cancer cells.
So heres to 2013. A new year. I hope you all have a safe New years eve.
December 31, 2012
December 29, 2012
7 Months!
We have a 7 month old in the house! Its amazing how the time flies. Seems like only yesterday we brought little man home, with his tea kettle cries. Now, we have a babbling baby. Luckily he sleeps thru the night now 7pm until about 6ish. Elliot is also a people baby. Gotta let the man look around! He has 2 bottom teeth, and is working on a top tooth now. Gotta love the teething!
Quick list of his 'favorite things right now'
- Avocado
- Sweet Potatoes
- Lama the dog (its a puppy thats brightly colored)
- His new toy drum noisey little thing
- Bath time! Lavender bubbles
- Lady bug toy on his car seat
- His new stroller forward facing. He can SEE!!!!
- Daddy making him fly like an airplane
- Cheerrio's
Quick list of his 'favorite things right now'
- Avocado
- Sweet Potatoes
- Lama the dog (its a puppy thats brightly colored)
- His new toy drum noisey little thing
- Bath time! Lavender bubbles
- Lady bug toy on his car seat
- His new stroller forward facing. He can SEE!!!!
- Daddy making him fly like an airplane
- Cheerrio's
December 27, 2012
Holiday Vacay
Hello! We 3 schmits were blessed with a great holiday filled with close family. Elliot recieved many gifts inculding a walker, and awesome rocking airplane (thanks grandparents!). I truley enjoyed the company this holiday. Its always amazing getting to spend time with everyone. And the food....oh my goodness. Doctors were worried about my weight loss, not anymore! I swear I feel like Ive gained 10 pounds with all this great food.
Now for the medical update:
Im still weak and tired. Christmas day I went to bed at 5 pm and didnt wake until the next morning around 6. That is the most sleep Ive had since coming home from the hospital. My lung is still bothering me and causing some pain. Its minor, but seems like the antibiotics are helping some. The doctor is worried about me getting pnemonia so we are trying to prevent that. Currently, we are holed up at my in-laws cabin relaxing by the fire. We plan on staying here for a few days since Eric doesnt have to return to work until the new year. Mini vaycay from all the doc appointments is nice. Hes been keeping me off my feet trying to get rested and some energy back. Legs are unsteady and shakey so I have to watch it toting the baby around. New thing is for my hands to shake too. My sister in law is teaching me how to crochet, and I can only do it so long before Im shaking too bad to do it. I think thats just a part of the weakness, and getting energy back.
Last bit of good news! Im almost completely off the steroids! Last pill taken today. So one less thing to take. Now to get those side affects to go away. I may have to restart them when we start IV treatments in a few weeks, but until then the goal was to have me weaned off my new years. Yay, for the little victories!
All I can say is thank you to everyone that made our holidays happen this year. Without my family and friends would holiday could have been much different. We 3 little schmits are a truly blessed bunch. We are grateful for all the thoughts and prayers people have been throwing our way. I couldnt have asked for a better christmas. Yes I could wish the last few months didnt happen, but it makes us who we are.
Now for the medical update:
Im still weak and tired. Christmas day I went to bed at 5 pm and didnt wake until the next morning around 6. That is the most sleep Ive had since coming home from the hospital. My lung is still bothering me and causing some pain. Its minor, but seems like the antibiotics are helping some. The doctor is worried about me getting pnemonia so we are trying to prevent that. Currently, we are holed up at my in-laws cabin relaxing by the fire. We plan on staying here for a few days since Eric doesnt have to return to work until the new year. Mini vaycay from all the doc appointments is nice. Hes been keeping me off my feet trying to get rested and some energy back. Legs are unsteady and shakey so I have to watch it toting the baby around. New thing is for my hands to shake too. My sister in law is teaching me how to crochet, and I can only do it so long before Im shaking too bad to do it. I think thats just a part of the weakness, and getting energy back.
Last bit of good news! Im almost completely off the steroids! Last pill taken today. So one less thing to take. Now to get those side affects to go away. I may have to restart them when we start IV treatments in a few weeks, but until then the goal was to have me weaned off my new years. Yay, for the little victories!
All I can say is thank you to everyone that made our holidays happen this year. Without my family and friends would holiday could have been much different. We 3 little schmits are a truly blessed bunch. We are grateful for all the thoughts and prayers people have been throwing our way. I couldnt have asked for a better christmas. Yes I could wish the last few months didnt happen, but it makes us who we are.
December 25, 2012
Christmas Eve Scare
Christmas Eve morning I woke again to a bloody nose. I dont ever get bloody noses. Im on medication for brain swelling, so the site of blood was scary. I have visions of my brain trying to run away lol. Add that to the past few days I have had pain in my right lung, and the worry started to set in. I do have some spots of cancer in my right lung, but it hasnt hurt or bothered me. It may be a fluke that there is pain at all, but I cant help that nagging feeling. So we call the Doctor!
7 am- call the on call doc. He calls back and says "its winter it happens, youll be fine. You can come in if you want but Im sure its nothing."
7:10 am- Screw it calling MY oncologists personal cell that I have for emergencies. I apologize profusely when he picks up after 2 rings. Luckily, my awesome doc is indeed concerned. Hes worried enough to call my neurosurgeon as indeed it could be caused from swelling or something. He says he wants to call me right back.
(my doctor then tells me to not call the on call number again, and if ever in need just call him or his nurses phone in the future. On call doc had NO idea that I had recently had brain surgery or issues and just wouldnt listen. Luckily, my doc is going to address this with him)
8 ish- They call back and decide to get me in asap for a MRI and a chest Xray. YAY DOC!
10 am- We get in get the MRI and Chest Xray. Im the only patient scanned. Everyone is so nice. Christmas carolers show up and start singing while Im getting my chest xray. Freaky awesome and made me tear up a bit. First Ive heard any caroling this season.
11 am- Prescribe antibiotics for a possible bacterial infection. Brain MRI celan. My brain is not in fact runny away for christmas. Chest x-ray inconclusive. They are gonig to treat me for an infection.
Follow up-
It hurts to breath or more. My entire right side feels like there is a stitch in it. I cant sleep. They can treat me for pain and that is it. If its indeed the cancer we cant do anything till January anyway.
Due to radiation they cant scan me until January 10th. At that time they will be doing a PET scan, MRI, and repeat labs to see if/where the cancer has spread etc since the last scans. Then January 16th we start our IV treatments to treat said leftover cancer. So its a waiting game until then.
So heres to praying for some sleep in the next few hours....hopefully, good night.
7 am- call the on call doc. He calls back and says "its winter it happens, youll be fine. You can come in if you want but Im sure its nothing."
7:10 am- Screw it calling MY oncologists personal cell that I have for emergencies. I apologize profusely when he picks up after 2 rings. Luckily, my awesome doc is indeed concerned. Hes worried enough to call my neurosurgeon as indeed it could be caused from swelling or something. He says he wants to call me right back.
(my doctor then tells me to not call the on call number again, and if ever in need just call him or his nurses phone in the future. On call doc had NO idea that I had recently had brain surgery or issues and just wouldnt listen. Luckily, my doc is going to address this with him)
8 ish- They call back and decide to get me in asap for a MRI and a chest Xray. YAY DOC!
10 am- We get in get the MRI and Chest Xray. Im the only patient scanned. Everyone is so nice. Christmas carolers show up and start singing while Im getting my chest xray. Freaky awesome and made me tear up a bit. First Ive heard any caroling this season.
11 am- Prescribe antibiotics for a possible bacterial infection. Brain MRI celan. My brain is not in fact runny away for christmas. Chest x-ray inconclusive. They are gonig to treat me for an infection.
Follow up-
It hurts to breath or more. My entire right side feels like there is a stitch in it. I cant sleep. They can treat me for pain and that is it. If its indeed the cancer we cant do anything till January anyway.
Due to radiation they cant scan me until January 10th. At that time they will be doing a PET scan, MRI, and repeat labs to see if/where the cancer has spread etc since the last scans. Then January 16th we start our IV treatments to treat said leftover cancer. So its a waiting game until then.
So heres to praying for some sleep in the next few hours....hopefully, good night.
December 24, 2012
Radiation
Heres the scoop on the radiation. Or what I like to call my 'daily punch to the brain'. We did 18 rounds of radiation to my brain tumor site daily. The affects of the daily radiation keep working for 4 weeks after you stop the daily treatment. So, while I dont have to go daily my body still feels the 'daily punches' for 4 weeks. The other side affects can last for up to 6 months after. (we will dive into those in a few).
Everyone has different side effects. My personal effects are as follows.
- Brain swelling- Causes severe headaches, they put me on steroids to fix this.
- Extreme nausea
- Skin irritation on scalp. Feels sunburned
- Extreme fatigue- 5 minutes of dishwashing = long nap after
- Weakness
- Seizures rish WAY up. I have yet to have one but Im not allowed to be left alone.
- Dizziness- I fall over easily lol.
- Blurred vision
- Possible Eyesight loss. Jury is still out on this. My brain could have already corrected for blind spots.
- Still have the Alexia. I cant read what I write.
- Weight loss due all the meds.
- Hair loss! Giant Bald spots. Gem on this is it keeps falling out for 6 months. And randomly falls out more and more daily.
Keep in mind due to the tumor I already had the vision, alexia and seizure issures. Now that the radiation is up my highest risk of seizure is down.
The daily does of radiation was a 15 minute office visit daily. I walked in, they bolted my head to a table, and took a xray. The xray made sure I was lined up exactly in the right position for the laser to strike! The laser did 3 passes of my head. The table would move me into the right position and POW I was done. I then left and went on my day. Easy.
So here are the pictures of my mask that they bolted me to a table with. Great stuff! And as an added bonus a pic of my newest hair loss.
Everyone has different side effects. My personal effects are as follows.
- Brain swelling- Causes severe headaches, they put me on steroids to fix this.
- Extreme nausea
- Skin irritation on scalp. Feels sunburned
- Extreme fatigue- 5 minutes of dishwashing = long nap after
- Weakness
- Seizures rish WAY up. I have yet to have one but Im not allowed to be left alone.
- Dizziness- I fall over easily lol.
- Blurred vision
- Possible Eyesight loss. Jury is still out on this. My brain could have already corrected for blind spots.
- Still have the Alexia. I cant read what I write.
- Weight loss due all the meds.
- Hair loss! Giant Bald spots. Gem on this is it keeps falling out for 6 months. And randomly falls out more and more daily.
Keep in mind due to the tumor I already had the vision, alexia and seizure issures. Now that the radiation is up my highest risk of seizure is down.
The daily does of radiation was a 15 minute office visit daily. I walked in, they bolted my head to a table, and took a xray. The xray made sure I was lined up exactly in the right position for the laser to strike! The laser did 3 passes of my head. The table would move me into the right position and POW I was done. I then left and went on my day. Easy.
December 21, 2012
Lights!
On my holiday list this year I was determined to see the lights at the square. Every year they light it up, have camel rides, ponies, hot chocolate and make it special. I kept putting it off out of sheer exhaustion. Finally, we got our act together sucked it up and went.
Elliot screamed the first 5 minutes of the car ride (not like him at ALL). So we stopped, figured out he was bunched up in the car seat awkward, re-adjusted then went on our way. We get half way there and realize 'oops! parking meter money'. Luckily for us we managed to find a spot that was free...whew.
Off we go! Lights for christmas in 60 degree weather. (not very christmasy) The square wasnt very full. We managed to make our rounds. Elliot loved looking at the lights. Very happy little dude. Not as spectacular as I remember from previous years, but it was nice.
After all that, (dinner ended up ruined. The meal for some reason just didn't turn out) We stopped and got a chocolate shake from Wends, fries, and called it a night. (remind you its 60 out, just couldn't fathom the hot chocolate)
The mommy could hardly make it 2 laps in the square. lol. Radiation sure takes it out of a girl. Still on the downhill slope. Supposed to deal another 4 weeks of exhaustion, then itll get better. For now baby steps.
Once again, thank you for everything everyones done. Someone anonymously left us a gift card the other day. The sheer generosity of people amazes me. I cannot say thank you enough, and have been very humbled by the outpouring of love.
Elliot screamed the first 5 minutes of the car ride (not like him at ALL). So we stopped, figured out he was bunched up in the car seat awkward, re-adjusted then went on our way. We get half way there and realize 'oops! parking meter money'. Luckily for us we managed to find a spot that was free...whew.
Off we go! Lights for christmas in 60 degree weather. (not very christmasy) The square wasnt very full. We managed to make our rounds. Elliot loved looking at the lights. Very happy little dude. Not as spectacular as I remember from previous years, but it was nice.
After all that, (dinner ended up ruined. The meal for some reason just didn't turn out) We stopped and got a chocolate shake from Wends, fries, and called it a night. (remind you its 60 out, just couldn't fathom the hot chocolate)
The mommy could hardly make it 2 laps in the square. lol. Radiation sure takes it out of a girl. Still on the downhill slope. Supposed to deal another 4 weeks of exhaustion, then itll get better. For now baby steps.
Once again, thank you for everything everyones done. Someone anonymously left us a gift card the other day. The sheer generosity of people amazes me. I cannot say thank you enough, and have been very humbled by the outpouring of love.
December 20, 2012
A Quick Introduction
Bear with me here. A note to remember is I have alexia due to my cancer. Brain tumor causes me to be able to type, and spell, but reading is gone. Very confusing. So if I make a mistake bear with me.
Quick story-
After waking up at 2am in September 2012, I spent 3 days in agony. I thought I was having a migraine. No prior history, but my brain was screaming. Later we find out I had a brain tumor that had burst sending blood into my brain and destroying eyesight reading and much more. They then discover a golf ball sized tumor of melanoma. They took it out in October 2012. I am currently still recovering.
I somehow managed to not loose complete eyesight in one eye (which is still shocking doctors). However I cannot read due to the brain damage, nor see very well due to the damage as well. Im also now at long term risk of seizures. They laugh at the thought of me driving again.
After surgery they then put me thru 18 rounds of radiation directly to my brain. I just finished the last dose yesterday! Now Im dealing with extreme weakness, and hair falling out. Yay for bald spots! Oh and brain swelling, apparently that happens with a 'constant punch to the head'. So now we are on steroids to help the swelling go down. These are a whole new ball game. Face swelling is a result, ulcers, and no sleep. They are hoping in the next few weeks to wean me off.
Next steps you ask?
Well January 2013 is going to bring us into IV treaments! I may have forgotten to mention now they have to treat the cancer in my right lung. (yep its there TOO!!!) We are going to start a newly developed drug for melanoma called yervoy. It isnt as bad a chemo or IL2. Its more of an immune booster that tries to get your own body to fight the cancer. We start that treatment to see if it works. As with anything with melanoma it has a low sucess rate. But since the lung isnt too big it gives us time to play with less invasive options. Side effects are relatively low. Mainly skin reactions etc. During all this they will monitor me closely. Then on to the next treatment if it doesnt work.
They did discover that my melanoma was not caused my sun. Just a fluke. They tested me for the b-raf gene and it didnt pop. So I didnt qualify for the new clinical trial. We kinda already new. Just scary with all the people that tan and sun expose that it can be caused by anything. Please be careful.
So here we are. A quick update as to where we are. I will keep everyone posted on things.
As for me Im going to enjoy my holiday, and try to get some rest. Pesky steroids keep me up.
Quick story-
After waking up at 2am in September 2012, I spent 3 days in agony. I thought I was having a migraine. No prior history, but my brain was screaming. Later we find out I had a brain tumor that had burst sending blood into my brain and destroying eyesight reading and much more. They then discover a golf ball sized tumor of melanoma. They took it out in October 2012. I am currently still recovering.
I somehow managed to not loose complete eyesight in one eye (which is still shocking doctors). However I cannot read due to the brain damage, nor see very well due to the damage as well. Im also now at long term risk of seizures. They laugh at the thought of me driving again.
After surgery they then put me thru 18 rounds of radiation directly to my brain. I just finished the last dose yesterday! Now Im dealing with extreme weakness, and hair falling out. Yay for bald spots! Oh and brain swelling, apparently that happens with a 'constant punch to the head'. So now we are on steroids to help the swelling go down. These are a whole new ball game. Face swelling is a result, ulcers, and no sleep. They are hoping in the next few weeks to wean me off.
Next steps you ask?
Well January 2013 is going to bring us into IV treaments! I may have forgotten to mention now they have to treat the cancer in my right lung. (yep its there TOO!!!) We are going to start a newly developed drug for melanoma called yervoy. It isnt as bad a chemo or IL2. Its more of an immune booster that tries to get your own body to fight the cancer. We start that treatment to see if it works. As with anything with melanoma it has a low sucess rate. But since the lung isnt too big it gives us time to play with less invasive options. Side effects are relatively low. Mainly skin reactions etc. During all this they will monitor me closely. Then on to the next treatment if it doesnt work.
They did discover that my melanoma was not caused my sun. Just a fluke. They tested me for the b-raf gene and it didnt pop. So I didnt qualify for the new clinical trial. We kinda already new. Just scary with all the people that tan and sun expose that it can be caused by anything. Please be careful.
So here we are. A quick update as to where we are. I will keep everyone posted on things.
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