Wednesday, June 27, 2012
Gimme a break
Dear friends,
I will be taking a break from this until I get the cancer and everything under control. Meanwhile, feel free to subscribe to my caring bridge site: www.caringbridge.org/visit/rachelmasters to keep up with my diagnosis and treatment.
Wednesday, June 20, 2012
Terrible news, Good news and EXCITING news!
Sorry for the delay in posting in a while, I've had quite a roller coaster of a month so far.
Mom and dad came in to town 2 weeks ago and I got to spend some time with them. That Friday we (including Jon) went to Plano to what we thought was going to be a consultation for back surgery. After visiting with the scoli surgeon and his assistant, they were convinced that with some core strengthening I could live with the curve and it would help lessen the pain. Jon spoke up at that point and said that it wasn't just some "mild discomfort" and began describing the pain to him, which made the doctors go back to the x-ray. When they came in the room he wasn't so optimistic. "We found a shadow...." then he led us into the room to view the x-ray, where he showed us what he was talking about. He wasn't sure what it was but due to the size of it, wanted to have it checked out immediately. So he called over to Baylor (next door) and sent me in for a CT scan. They did the CT scan and then called us all into the viewing room. The scoli surgeon was there as well (even though by now, it was about 5:15 on Friday evening and I was really no longer his concern). He told us that while we had hoped we wouldn't have anything to worry about over the weekend, we now had a LOT to worry about. He then introduced us to the radiologist who went on to explain the image. As soon as I heard the words, "tumor" and "malignant" my mom latched on to me and I grabbed Jon's hand. Everything else after that just became white noise. The radiologist explained what he thought it was and gave us next steps and said he would burn the images to a disc. While we waited for the disc, I broke down. I started crying and all anyone could do was just hug me. As we were going out to the car, the scoli surgeon stopped us and said he had set up an appointment with an oncologist for Monday morning at 8:30. He would go over the images with us further and discuss next steps from there. The ride back to my sisters was quiet, other than the occasional ding from a text message on my phone.
On Monday, we confirmed with the oncologist that it is cancer. He said that I would be referred to MD Anderson for a biopsy and then could do chemo up here. So as of right now, I'm still waiting on that appointment. As for the scoliosis....it is not the cause of my pain, the tumor is. And it is possible that the way the tumor is growing, it is the cause for the curve in my spine. I don't have any back pain so having back surgery is no longer in the cards for me.
Now for the exciting news. Jon had said that he was going to have a guys night this past Friday. Shortly after that I got a text from my friend Shelley who suggested we have a girls night, which normally wouldn't cause any suspicion, except she mentioned 1) picking me up and 2) getting "gussied up". I didn't mention my suspicions to them, just went along with it. Got my hair cut Friday and got ready for dinner. Shelley and I went to Carrabba's and halfway through our meal, she got a call from one of our friends who works at church wanting Shelley to come up and take care of moving a table for the fundraiser the next night. So we went up to church after dinner and wandered around for a bit until Shelley got a text from our friend saying to go to the chapel to look at a table. So we went to the chapel and as soon as the doors were opened, I saw candles lit the entire length of the aisle and across the stage. On stage were 4 of our friends with guitars and drums and Jon with a mic. They started playing "Calling You" by Blue October (our song) and Jon sang the second verse. There was an interlude where Jon came down off the stage and gave his speech, how much he loves me, how he wants to wake up next to me, how I'm his best friend (and some other stuff)...then he got down on one knee and proposed.
OF COURSE I SAID YES!!!!!
So now we get to do all the fun things like registering for gifts and planning a honeymoon and oh yeah....deciding who has to leave Cook Children's. :( The HR Policy here states that if you work in IT, HR or Finance you can't have any relative working at the hospital. Of course our boss is going to try to fight it, but it's not a guarantee. We're still working on a date, but are very excited.
Mom and dad came in to town 2 weeks ago and I got to spend some time with them. That Friday we (including Jon) went to Plano to what we thought was going to be a consultation for back surgery. After visiting with the scoli surgeon and his assistant, they were convinced that with some core strengthening I could live with the curve and it would help lessen the pain. Jon spoke up at that point and said that it wasn't just some "mild discomfort" and began describing the pain to him, which made the doctors go back to the x-ray. When they came in the room he wasn't so optimistic. "We found a shadow...." then he led us into the room to view the x-ray, where he showed us what he was talking about. He wasn't sure what it was but due to the size of it, wanted to have it checked out immediately. So he called over to Baylor (next door) and sent me in for a CT scan. They did the CT scan and then called us all into the viewing room. The scoli surgeon was there as well (even though by now, it was about 5:15 on Friday evening and I was really no longer his concern). He told us that while we had hoped we wouldn't have anything to worry about over the weekend, we now had a LOT to worry about. He then introduced us to the radiologist who went on to explain the image. As soon as I heard the words, "tumor" and "malignant" my mom latched on to me and I grabbed Jon's hand. Everything else after that just became white noise. The radiologist explained what he thought it was and gave us next steps and said he would burn the images to a disc. While we waited for the disc, I broke down. I started crying and all anyone could do was just hug me. As we were going out to the car, the scoli surgeon stopped us and said he had set up an appointment with an oncologist for Monday morning at 8:30. He would go over the images with us further and discuss next steps from there. The ride back to my sisters was quiet, other than the occasional ding from a text message on my phone.
On Monday, we confirmed with the oncologist that it is cancer. He said that I would be referred to MD Anderson for a biopsy and then could do chemo up here. So as of right now, I'm still waiting on that appointment. As for the scoliosis....it is not the cause of my pain, the tumor is. And it is possible that the way the tumor is growing, it is the cause for the curve in my spine. I don't have any back pain so having back surgery is no longer in the cards for me.
Now for the exciting news. Jon had said that he was going to have a guys night this past Friday. Shortly after that I got a text from my friend Shelley who suggested we have a girls night, which normally wouldn't cause any suspicion, except she mentioned 1) picking me up and 2) getting "gussied up". I didn't mention my suspicions to them, just went along with it. Got my hair cut Friday and got ready for dinner. Shelley and I went to Carrabba's and halfway through our meal, she got a call from one of our friends who works at church wanting Shelley to come up and take care of moving a table for the fundraiser the next night. So we went up to church after dinner and wandered around for a bit until Shelley got a text from our friend saying to go to the chapel to look at a table. So we went to the chapel and as soon as the doors were opened, I saw candles lit the entire length of the aisle and across the stage. On stage were 4 of our friends with guitars and drums and Jon with a mic. They started playing "Calling You" by Blue October (our song) and Jon sang the second verse. There was an interlude where Jon came down off the stage and gave his speech, how much he loves me, how he wants to wake up next to me, how I'm his best friend (and some other stuff)...then he got down on one knee and proposed.
Sunday, June 3, 2012
Twist and shout (literally!)
well friends, this blog is temporarily being hijacked for the next year as an outlet of sorts to help me process and deal with my scoliosis.
My first appointment is in 5 days. There's a lot of emotions going on right now - apprehension, anxiety, impatience, a little bit of excitement and a LOT of nervousness.
A little back story about my scoliosis: I was diagnosed with scoliosis when I was in 6th grade (you know during one of those awkward moments when everyone's mom comes and you have to bend over in the locker room)- it was an extremely mild curve which I told my parents about and we chose to ignore for the time being. I never experienced any pain until I was a senior in high school. It was very mild and very infrequent. My mom and I found out that my curve had progressed to 23 degrees. The doctor was not concerned at all and said that for most people it would correct itself on its own. By that point, I was too old and my bones had already started to set for a back brace to be of any help. The doctor said to come back in 5 years. Well, 5 years came and went, I didn't have much if any pain and didn't think about it at all until I moved to Texas. 2 years ago out of the blue I noticed I couldn't sleep on my left side anymore. It hurt too much. So I gradually had to adjust to sleeping on my stomach or my back. I also noticed I started leaning a LOT to the left at work and when I was standing or sitting. Initially a heating pad or ibuprofen helped and I could still function pretty normally. But gradually heating pads, ice, and any sort of over the counter pain medicine stopped working. I noticed walking becoming more painful requiring me to put my left hand on my hip to aleviate some of the pain while walking. In January of this year I woke up in the middle of the night with an intense burning sensation on my left side. It hurt so bad I was not able to sleep. I ended up going for a walk at 4:30 in the morning just for something to do to hopefully help clear my head. I finally set up a woman's exam the day before my birthday and started doing some research on scoliosis. The second my doctor walked in the room she asked me if my scoliosis caused me any pain. I didn't have to say a word about it. I explained the kind of pain I was having and she prescribed a muscle relaxer. I took it for a while, but it didn't really do anything to help with the intense burning sensation I experienced a couple times a month. I finally called and requested a referral to a spine specialist. My appointment was in April. I had to fill out at least 20 pages of paperwork detailing my pain, medical history and all that fun stuff. They took me back for x-rays and I peeked around the corner after the first one and my jaw nearly hit the floor when I saw it. My curve had progressed. My upper back looked like a 'c' with the curve of it being on my left side. They took one more and sent me back to my room. I got dressed and continued filling out the paperwork until the doctor came in. He showed me the x-rays and said my curve was over 50 degrees. I had done enough reading at that point to know anything over 50 would require surgery. No ifs, ands, or buts. He told me there was also rotation and that curve had rotated under my left shoulder blade pinching nerves causing the burning sensation. It was also pressing my ribcage outward. He said the curve would only get worse and that surgery was my only option of correcting this and getting rid of the pain. He told me he would refer me to Baylor for the surgery. I asked a few more questions and then left. Talk about an overload. Hearing that kind of news by yourself is enough to make any person freak out. I talked with my parents, told them the results. We spent the rest of the day praying and doing research. My parents called me later that night to pray over me. A week later, I got in touch with Baylor and scheduled the initial consultation. My parents wanted to be there for it, which meant waiting 6 weeks to see someone. I had to have the doctor call in a prescription for pain because it got so severe. I'm still having a lot of pain, even with taking the medicine.
It's 5 days away. I have visited with the folks at Baylor to see how quickly the surgery might be scheduled. Their answer: it depends. However, the doctor I'm seeing has a lot of openings. 5 days until I find out. 5 days until questions are answered. 5 days until I can set a date and begin counting down the days. 5 days....it seems like such a long time, especially with pain.
6 days until the boyfriend talks with the parentals about popping the question :) That too will happen this month along with my parents moving to Wisconsin.
Crazy busy month. Can use all the prayers I can get!!!
My first appointment is in 5 days. There's a lot of emotions going on right now - apprehension, anxiety, impatience, a little bit of excitement and a LOT of nervousness.
A little back story about my scoliosis: I was diagnosed with scoliosis when I was in 6th grade (you know during one of those awkward moments when everyone's mom comes and you have to bend over in the locker room)- it was an extremely mild curve which I told my parents about and we chose to ignore for the time being. I never experienced any pain until I was a senior in high school. It was very mild and very infrequent. My mom and I found out that my curve had progressed to 23 degrees. The doctor was not concerned at all and said that for most people it would correct itself on its own. By that point, I was too old and my bones had already started to set for a back brace to be of any help. The doctor said to come back in 5 years. Well, 5 years came and went, I didn't have much if any pain and didn't think about it at all until I moved to Texas. 2 years ago out of the blue I noticed I couldn't sleep on my left side anymore. It hurt too much. So I gradually had to adjust to sleeping on my stomach or my back. I also noticed I started leaning a LOT to the left at work and when I was standing or sitting. Initially a heating pad or ibuprofen helped and I could still function pretty normally. But gradually heating pads, ice, and any sort of over the counter pain medicine stopped working. I noticed walking becoming more painful requiring me to put my left hand on my hip to aleviate some of the pain while walking. In January of this year I woke up in the middle of the night with an intense burning sensation on my left side. It hurt so bad I was not able to sleep. I ended up going for a walk at 4:30 in the morning just for something to do to hopefully help clear my head. I finally set up a woman's exam the day before my birthday and started doing some research on scoliosis. The second my doctor walked in the room she asked me if my scoliosis caused me any pain. I didn't have to say a word about it. I explained the kind of pain I was having and she prescribed a muscle relaxer. I took it for a while, but it didn't really do anything to help with the intense burning sensation I experienced a couple times a month. I finally called and requested a referral to a spine specialist. My appointment was in April. I had to fill out at least 20 pages of paperwork detailing my pain, medical history and all that fun stuff. They took me back for x-rays and I peeked around the corner after the first one and my jaw nearly hit the floor when I saw it. My curve had progressed. My upper back looked like a 'c' with the curve of it being on my left side. They took one more and sent me back to my room. I got dressed and continued filling out the paperwork until the doctor came in. He showed me the x-rays and said my curve was over 50 degrees. I had done enough reading at that point to know anything over 50 would require surgery. No ifs, ands, or buts. He told me there was also rotation and that curve had rotated under my left shoulder blade pinching nerves causing the burning sensation. It was also pressing my ribcage outward. He said the curve would only get worse and that surgery was my only option of correcting this and getting rid of the pain. He told me he would refer me to Baylor for the surgery. I asked a few more questions and then left. Talk about an overload. Hearing that kind of news by yourself is enough to make any person freak out. I talked with my parents, told them the results. We spent the rest of the day praying and doing research. My parents called me later that night to pray over me. A week later, I got in touch with Baylor and scheduled the initial consultation. My parents wanted to be there for it, which meant waiting 6 weeks to see someone. I had to have the doctor call in a prescription for pain because it got so severe. I'm still having a lot of pain, even with taking the medicine.
It's 5 days away. I have visited with the folks at Baylor to see how quickly the surgery might be scheduled. Their answer: it depends. However, the doctor I'm seeing has a lot of openings. 5 days until I find out. 5 days until questions are answered. 5 days until I can set a date and begin counting down the days. 5 days....it seems like such a long time, especially with pain.
6 days until the boyfriend talks with the parentals about popping the question :) That too will happen this month along with my parents moving to Wisconsin.
Crazy busy month. Can use all the prayers I can get!!!
Sunday, May 27, 2012
Challenges
This past week has proved to be very challenging for me both physically and emotionally. I was able to go the entire week without taking any pain medications (partially because I didn't need it and partially because I wanted to have enough to last until my appointment). But because of that, I didn't sleep very well at ALL this week. I did go out to IKEA with my sister and nephew and then to Grapevine Mills Mall, and I think with all the walking I might have overdone it. I was exhausted by the time I got home and feeling extremely dizzy and weak. Tried to take a nap but sleep wouldn't come. I met my friend LeighAnn for dinner and barely ate anything (and for those of you that know me know this is not me at all!) Towards the end of the meal, I began to feel really nauseous and ended up throwing up on the way to my car :( Spent all day Saturday in bed trying to recover. Still don't have my appetite back and still feeling nauseous with a headache. I did look up the side effects of the pain medication I'm taking and all these symptoms I'm having are side effects. :( 12 more days then hopefully the doctor I see will prescribe a new medication.
I've also had a really hard time with being selfish lately. This was something I asked for prayers for at home church on Thursday night - just not feeling myself, feeling irritable and wanting things to be about me. I've had a hard time also with trying to make everyone happy with regards to my appointments and all that - it's not easy considering the schedules of people at work, Jon, my parents and all the while enduring the pain and sleeplessness. I became really overwhelmed this week with the frustration of it all and just broke down. Luckily I have been blessed with an INCREDIBLY caring group of friends and an amazing boyfriend who just listened to me.
Since I was feeling under the weather yesterday, I stayed at home and watched church services via stream. Rick's lesson was amazing as usual and it prompted Jon to go forward for prayers for us and my surgery. The elder he talked to was very understanding and had found out about the fundraiser in a couple weeks and since he was not going to be able to make it, he donated right then and there. $200!!!! When Jon told me, I was blown away. Talk about God providing! I know this will be an incredibly difficult season for me to accept monetary gifts and the help of friends and family when there are things I can't do for myself. I know God is using this to demonstrate His power and to show me that it's okay to depend on people and that He will carry me through all this. It's easy to forget that sometimes and think that I'm on this journey alone - it's hard to explain to people the type and intensity of the pain that I'm having, it's hard to be honest without sounding needy or like I'm complaining or even bitter.
The journey is far from over and I can use all the encouragement I can get!!!
I've also had a really hard time with being selfish lately. This was something I asked for prayers for at home church on Thursday night - just not feeling myself, feeling irritable and wanting things to be about me. I've had a hard time also with trying to make everyone happy with regards to my appointments and all that - it's not easy considering the schedules of people at work, Jon, my parents and all the while enduring the pain and sleeplessness. I became really overwhelmed this week with the frustration of it all and just broke down. Luckily I have been blessed with an INCREDIBLY caring group of friends and an amazing boyfriend who just listened to me.
Since I was feeling under the weather yesterday, I stayed at home and watched church services via stream. Rick's lesson was amazing as usual and it prompted Jon to go forward for prayers for us and my surgery. The elder he talked to was very understanding and had found out about the fundraiser in a couple weeks and since he was not going to be able to make it, he donated right then and there. $200!!!! When Jon told me, I was blown away. Talk about God providing! I know this will be an incredibly difficult season for me to accept monetary gifts and the help of friends and family when there are things I can't do for myself. I know God is using this to demonstrate His power and to show me that it's okay to depend on people and that He will carry me through all this. It's easy to forget that sometimes and think that I'm on this journey alone - it's hard to explain to people the type and intensity of the pain that I'm having, it's hard to be honest without sounding needy or like I'm complaining or even bitter.
The journey is far from over and I can use all the encouragement I can get!!!
Sunday, May 6, 2012
Blessings
I am incredibly lucky blessed! After opening up to home church on Thursday night, I have received SO many blessings since. My best friend Shelley, has offered to help me with some housework and washing my hair tomorrow. She has also been working with my boyfriend Jon to plan a fundraiser to help pay for my surgery! When I was in a LOT of pain last night, Jon prayed over me and read scriptures to me. I also had several friends join Jon and I in the lounge last night for church since I can't sit in the chairs with the rest of the assembly. While this may be a very difficult experience, I could not have asked for a better group of friends to support me and encourage me.
This has kind of thrown a kink in my 28 by 28 goals. I know there's still about 9 months left and that's plenty of time to do things, but that all depends on when the surgery is. It's hard to keep a positive attitude when so much of what I want to do is going to be put on hold with this surgery. But it's like Jon said last night, this is all temporary; what I've got to do is look for ways that God's glory can be shown through all this. That's not easy sometimes. It's a lot easier to throw a pity party and want sympathy from people than to be strong and trust in the Lord.
This has kind of thrown a kink in my 28 by 28 goals. I know there's still about 9 months left and that's plenty of time to do things, but that all depends on when the surgery is. It's hard to keep a positive attitude when so much of what I want to do is going to be put on hold with this surgery. But it's like Jon said last night, this is all temporary; what I've got to do is look for ways that God's glory can be shown through all this. That's not easy sometimes. It's a lot easier to throw a pity party and want sympathy from people than to be strong and trust in the Lord.
Friday, May 4, 2012
Waiting sucks!
Well, I've got the initial consult appt scheduled - June 8. Now the waiting period begins. I got a call today confirming they got my x-rays. I've got a LOT of paperwork to do before then. I've talked with my boss to get things rolling in terms of HR and leave and all that.
But what really sucks is when you have to have other people do things for you because you can't do them anymore because of the pain. It feels like you lose a little bit of yourself; your independence and even a little bit of zest for life. Luckily I have amazing friends (and boyfriend) who are helping me through this and an amazing family who is incredibly supportive. It's going to be a struggle for me to lay down my pride and ask for help when I need it instead of suffering.
But what really sucks is when you have to have other people do things for you because you can't do them anymore because of the pain. It feels like you lose a little bit of yourself; your independence and even a little bit of zest for life. Luckily I have amazing friends (and boyfriend) who are helping me through this and an amazing family who is incredibly supportive. It's going to be a struggle for me to lay down my pride and ask for help when I need it instead of suffering.
Monday, April 23, 2012
You dropped a bomb on me....
Ever have one of those moments where you get some news and you wish you could be anywhere but there? I had said moment on Thursday.
As some of you know, I have scoliosis and the pain has progressed over the past 2 years. I finally went to an orthopedist (read: back specialist) on Thursday. I had been to see a specialist when I was 18 and he didn't see any cause for concern, said to come back in 5 years. Well, 5 years came and went, I didn't have any pain - so no real reason for another visit. The last time I had seen x-rays of my back it was a 23 degree curve. Kinda freaky, but I could live with it with the hope that it would correct itself over time. Fast forward to Thursday. The second I saw the x-ray I started freaking out. So I go back to the exam room, and spend the next 45 minutes waiting for the doctor to show me the x-rays and talk about them. So he comes in all serious puts up the x-rays and says that my curve is now over 50% and that not only is there a curve but there is a rotation as well that part of my spine has rotated under my left scapula, causing the pain in my shoulder blade. *queue panic* So then he mentions the only way to correct this is with surgery - rods and pins *panic increases*, So we talk a little bit more and he says he's going to refer me to a spine surgery specialist. So now, I'm waiting for them to contact me regarding an appointment so I can in turn tell my parents who want to be there for this next consultation - it's when we'll talk about surgery, costs, recovery times, all that fun stuff. And possibly get it scheduled. So prayers through this whole ordeal will be GREATLY appreciated.
On a lighter note, the 5 pound increment weight loss goal/reward list I made for myself is doing its job - I am close to yet another 5 pound mark.
As some of you know, I have scoliosis and the pain has progressed over the past 2 years. I finally went to an orthopedist (read: back specialist) on Thursday. I had been to see a specialist when I was 18 and he didn't see any cause for concern, said to come back in 5 years. Well, 5 years came and went, I didn't have any pain - so no real reason for another visit. The last time I had seen x-rays of my back it was a 23 degree curve. Kinda freaky, but I could live with it with the hope that it would correct itself over time. Fast forward to Thursday. The second I saw the x-ray I started freaking out. So I go back to the exam room, and spend the next 45 minutes waiting for the doctor to show me the x-rays and talk about them. So he comes in all serious puts up the x-rays and says that my curve is now over 50% and that not only is there a curve but there is a rotation as well that part of my spine has rotated under my left scapula, causing the pain in my shoulder blade. *queue panic* So then he mentions the only way to correct this is with surgery - rods and pins *panic increases*, So we talk a little bit more and he says he's going to refer me to a spine surgery specialist. So now, I'm waiting for them to contact me regarding an appointment so I can in turn tell my parents who want to be there for this next consultation - it's when we'll talk about surgery, costs, recovery times, all that fun stuff. And possibly get it scheduled. So prayers through this whole ordeal will be GREATLY appreciated.
On a lighter note, the 5 pound increment weight loss goal/reward list I made for myself is doing its job - I am close to yet another 5 pound mark.
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