I was speaking with my friend for a few minutes last week ( hi Melissa!!!) and I realized that she did not know most of my cancer "history" I guess you can call it. And why would she, we just me when I started my new job in May. Then I started to realize most of my friends don't know the whole story. Of course my college friends do, because they were there from the beginning. I had to go over my medical history for the clinical trial team the other day and even I was getting confused. Until a few years ago I had it down, but now it's been 10 years and I think it will just be better to have a compiled list. So for anyone who is interested on catching up, here it goes. I will elaborate more on this one than the one I will keep for myself.
This March will be 10 years since my initial cance diagnosis.
-In the fall of 2002 I was a college sophomore. I started playing flag football with my dorms team. During one game I was knocked down by a guy onto my butt. The fall did not cause the cancer. Over the next few days I noticed something that felt like a bruised area on my left buttock. For 5 months!!! I saw an idiot doctor who said it was a muscle contusion and was enjoying taking my money for physical therapy. I also saw another doctor in the winter who said it was just a muscle contusion. Fortunately in March 2003 my mom took me to a doctor who immediately did a biopsy.
-March 2003, 20 years old, still a sophmore. The same day I found out I was got an interview for nursing school was the same day I found out I had cancer. My parents were living in El Paso at the time because of my dad's job. I was in college in Arlington at UTA. My dad told me over the phone. I cried so loudly the the girl next door came over to see what was happening. I told her and she said that she would go with me to the doctor that I had been refereed to the next morning, My parents made it in the next evening.
-At diagnosis I had a grapefruit size tumor in my left buttock. It didn't seem that big to me, still seemed like a really big bruised area because most of the tumor was up in my lower pelvis. I found out it was cancer on Monday, Thursday learned that I had lung metastasis and Friday I had my first surgery ever, a thoracotomy to remove 2 lung lesions.
- One month after that I started chemo, this would last for a year with one break for surgery. I had to leave college and move home.
-June 2003, left buttock tumor is removed after a few months of chemo. Chemo worked well and most of the tumor was dead. This was my hardest surgery to date, I was in the hospital for weeks and had to relearn how to walk.
- Spring 2004, finished chemo, went back to college. Reapplied to nursing school and got in.
-at this point I'm being scanned, buttock and lungs every 3 months. Later in 2004, there is a new lung nodule on my left lung. I have thoracotomy #2
-2005 another lung nodule on my right side. I have thoracotomy #3. I am able to stay in school through all of these. My fastest turn around time was surgery on Friday, back in class by Tuesday. It was hard and I was sore, but worth it. I wanted to graduate!
2007- another lesion is seen on the right lung. Thoracotomy #4
2008- this was a scary one. I had a softball size tumor show up under my sternum with in 3 months. At the time of finding it is not operable because it's so close to my heart. I immediately start chemo. This chemo will last for one year with a break for surgery. The chemo is successful in shrinking the tumor making it operable.
-July 2009 While looking at the tumor during a ct it is hard for the radiologist to find my right coronary artery. It is discovered that I have had a heart defect since birth. Absolutely asympotomatic, I did sports all through high school. The tumor is removed and the heart defect are fixed in one 8 hour surgery at Texas Children's. I needed to be there because of the cardiologist.
Oct 2009- finished chemo and went back to working
Feb 2010- met the love of my life and married him exactly one year later in 2011 : )
Dec 2012- Thought I had a sinus infection.....
Dec 27- Right side brain tumor removal
Tuesday, January 15, 2013
Monday, January 14, 2013
Watch and wait
I have been accepted into the clinical trial and was chosen by the computer for watch and wait. So for now (hopefully never) no radiation. I will get my first MRI with the trial in a few weeks.
At first I didn't care which one was picked, I really liked that I did not have to decide. But as soon as I heard "observation" from the nurse I just melted into the couch. I hadn't been that relaxed in weeks. I started to have a much harder time with the steroids on Thursday than I thought might happen. And the idea that I may have to have radiation in a few days involving more steroids was making me a little nervous.
On Thursday I flew back to Dallas. I was a little nervous to be by myself that long, I guess because I have had someone with me for almost 4 weeks now. But I just tried to relax and read. Everything was fine on the flight. I was worried how my head would feel with the pressure. I had no pain. Definitely some weird pressure and gurgling still going up in there, but it was a very comfortable flight.
About mid day before I left I noticed my swelling start to increase. Even though I'm tapering off the cumulative effects of being on dexamethasone for 4 weeks just caught up with me and it's like overnight the swelling was everywhere and worse. Extended steroid use also causes your body to start transferring fat pockets to weird places, like you torso. I was pretty uncomfortable, the worst being my abdomen because I felt like I wasn't able to take a deep breath and that just makes me feel anxious. I have a pretty small frame so I just felt like I had so much weight on me. I have also started to have muscle atrophy. I knew this could happen with long term use but I guess with me it's at 4 weeks. My legs felt so heavy Thursday and everyday since it just gets harder and harder to use my legs. I can still walk and do everything I need to do but it's definitely a noticeable difference, especially trying to get up or kneel. The increase in the taper caused horrible joint pain. I had no idea that this was something that happened and woke up Friday morning around 3am feeling like I had been hit in the knees with hammers. It's worse at night, I'm not sure what it is about 3-4am that it wants to kick in. But I can usually get it to ease up by getting up and walking around. I was so scared when it happened, I was thinking all kind of crazy reasons why I would be having joint pain. Fortunately I found a great on line forum of patients using dexamethasone. It had a lot of helpful information and a lot of people have this joint pain when they are tapering so that made me feel better.
I've been really surprised that I have been feeling worse 2 weeks after surgery than right after, it's normally the opposite for me.
Other than all the craziness from the steroids I have REALLY enjoyed being at home with Melvinn. We had a really nice weekend.
I will go back to Houston later this week for my Pet ct and then the next week meet with my oncologist. We still need to discuss if chemo is an option. Hopefully we will be discussing this over negative pet ct results!
At first I didn't care which one was picked, I really liked that I did not have to decide. But as soon as I heard "observation" from the nurse I just melted into the couch. I hadn't been that relaxed in weeks. I started to have a much harder time with the steroids on Thursday than I thought might happen. And the idea that I may have to have radiation in a few days involving more steroids was making me a little nervous.
On Thursday I flew back to Dallas. I was a little nervous to be by myself that long, I guess because I have had someone with me for almost 4 weeks now. But I just tried to relax and read. Everything was fine on the flight. I was worried how my head would feel with the pressure. I had no pain. Definitely some weird pressure and gurgling still going up in there, but it was a very comfortable flight.
About mid day before I left I noticed my swelling start to increase. Even though I'm tapering off the cumulative effects of being on dexamethasone for 4 weeks just caught up with me and it's like overnight the swelling was everywhere and worse. Extended steroid use also causes your body to start transferring fat pockets to weird places, like you torso. I was pretty uncomfortable, the worst being my abdomen because I felt like I wasn't able to take a deep breath and that just makes me feel anxious. I have a pretty small frame so I just felt like I had so much weight on me. I have also started to have muscle atrophy. I knew this could happen with long term use but I guess with me it's at 4 weeks. My legs felt so heavy Thursday and everyday since it just gets harder and harder to use my legs. I can still walk and do everything I need to do but it's definitely a noticeable difference, especially trying to get up or kneel. The increase in the taper caused horrible joint pain. I had no idea that this was something that happened and woke up Friday morning around 3am feeling like I had been hit in the knees with hammers. It's worse at night, I'm not sure what it is about 3-4am that it wants to kick in. But I can usually get it to ease up by getting up and walking around. I was so scared when it happened, I was thinking all kind of crazy reasons why I would be having joint pain. Fortunately I found a great on line forum of patients using dexamethasone. It had a lot of helpful information and a lot of people have this joint pain when they are tapering so that made me feel better.
I've been really surprised that I have been feeling worse 2 weeks after surgery than right after, it's normally the opposite for me.
Other than all the craziness from the steroids I have REALLY enjoyed being at home with Melvinn. We had a really nice weekend.
I will go back to Houston later this week for my Pet ct and then the next week meet with my oncologist. We still need to discuss if chemo is an option. Hopefully we will be discussing this over negative pet ct results!
Wednesday, January 9, 2013
Jan 9th Dr. Appointment update
Hello!! Thank you to everyone who has called or text today. I'm so sorry that I was not able to explain everything to text for everyone but it is just really too much information to text and for my mental health, it really is best for me to just say it once. That's why I love this blog!
The staples are out. It was easy, painless and I feel so much better, The scar is so nice and thin, it's not going to be noticeable once my hair comes back, which it has already started to grow in. I knew I could wash my hair tomorrow, but was very disappointed to learn that I can only use baby shampoo for two weeks. This will be interesting, but at least my hair will be clean. I seriously feel like Willow Smith with my asymmetric haircut. I'm so happy it's not as bad as I thought it would be! I have most of my hair.
The pathology report shows that it was rhabdomyosarcoma, meaning same thing I had before. So I guess good news.... it's not a weird new cancer!
Treatment options: Since rhabdo normally doesnt go to the brain, there is not a clear cut treatment protocol. Whole brain radiation is an option. The thinking behind that is if there is one tumor there may be other cancer cells in the brain lurking, nuke them all. But with that you are also risking life long cognitive issues. For now this is not an option. Especially at MD Anderson. Outside of MDA it's standard, but the highly skilled surgeons at MDA have better succcess rates than outside so luckily for me this option has been taken off the table.
The other options are watch/wait or gamma knife radiation to empty cavity. Because the tumor was in the brain, there is no way to get really nice big clean margins because then you are taking brain tissue. So there is always a risk of there being a few cells left behind. Do you wait and see if another tumor starts to grow, or radiate the tiny area, possibly causing problems when not needed. There is no clear answer. But fortunately MDA has a clinical trial focusing on that right now that I am almost accepted into pending one or two more things. I met the team today and I love them! I have always heard such great things about clinical trials from other patients. You are followed so closely. Best part about it for me is I don't have to make the decision. A computer will decide if I get radiation or watch and wait. Either way I will be very closely monitored. If I do radiation, it will be next week, one day treatment. If I do watch and wait I will have MRI in one month. And if I am on the watch and wait, this does not remove me from treatment. If ever they suspect something may be growing, I get the gamma radiation. I'm sure that would drive some people crazy not getting to choose, but it's good for me.
I did not get to see my medical oncologist today. I have a PET ct next Friday, just to be sure nothing else is going on. I will then meet with him the next week to see what he thinks about chemo. We have been basically told that chemo is really not best for this because many don't cross the blood brain barrier. But he did have some ideas last time, so I'm very interested to see what he has to say.
As soon as my neuro surgeon saw me he said something about my "chipmunk cheeks" and then said I could speed up the taper on my steroids. So I will be off 3 days earlier and he said all this puffiness should go away with in a week or two after stopping. I still have to take seizure meds for 3 more months. I have been cleared for most activity, but still need to remember I just had surgery 2 weeks ago. And I have been cleared for yoga!!! Of course I got the listen to my body talk and I will. If all I can do is a few postures and then lay in the hot room for 60 minutes on my towel, then that's all I will do, happily and without shame! I'm just happy I'm cleared to go.
Because January is filled with so many what ifs and scans I will not be attempting to come back to work this month. I need to get all of this cleared up first.
I have been cleared to fly and will be coming home tomorrow. It may only be for a few days but I'm so happy! I really need a few days to just act like this isn't happening, clean my house (yes, yes, light cleaning, i know), watch all my dvr shows (Dexter and Homeland finales!!!!)))) and spend time with my best friend, I've really missed him.
Apologies now if I'm not my usual social self when I'm at home. I am so embarrassed by how I look. Seriously, I look like I have Cushings!!! And I need to rest. Also, steroids greatly depress your immunity so if you want to see me and I quiz you, which i will, about your health history over the last 2 weeks don't be offended. The last thing I need is a cold right now.
I really hope I can stay at least through Tuesday. I have been trying to see a new gyn and I have had an appointment waiting for almost 3 months!! 3 months!!! I would hate to have to re schedule, but if I'm picked for radiation it may have to be that day.
Again, thank you to everyone who checked on me today. I am feeling a little overwhelmed from today but I think a visit home will be just what I need to feel better.
The staples are out. It was easy, painless and I feel so much better, The scar is so nice and thin, it's not going to be noticeable once my hair comes back, which it has already started to grow in. I knew I could wash my hair tomorrow, but was very disappointed to learn that I can only use baby shampoo for two weeks. This will be interesting, but at least my hair will be clean. I seriously feel like Willow Smith with my asymmetric haircut. I'm so happy it's not as bad as I thought it would be! I have most of my hair.
The pathology report shows that it was rhabdomyosarcoma, meaning same thing I had before. So I guess good news.... it's not a weird new cancer!
Treatment options: Since rhabdo normally doesnt go to the brain, there is not a clear cut treatment protocol. Whole brain radiation is an option. The thinking behind that is if there is one tumor there may be other cancer cells in the brain lurking, nuke them all. But with that you are also risking life long cognitive issues. For now this is not an option. Especially at MD Anderson. Outside of MDA it's standard, but the highly skilled surgeons at MDA have better succcess rates than outside so luckily for me this option has been taken off the table.
The other options are watch/wait or gamma knife radiation to empty cavity. Because the tumor was in the brain, there is no way to get really nice big clean margins because then you are taking brain tissue. So there is always a risk of there being a few cells left behind. Do you wait and see if another tumor starts to grow, or radiate the tiny area, possibly causing problems when not needed. There is no clear answer. But fortunately MDA has a clinical trial focusing on that right now that I am almost accepted into pending one or two more things. I met the team today and I love them! I have always heard such great things about clinical trials from other patients. You are followed so closely. Best part about it for me is I don't have to make the decision. A computer will decide if I get radiation or watch and wait. Either way I will be very closely monitored. If I do radiation, it will be next week, one day treatment. If I do watch and wait I will have MRI in one month. And if I am on the watch and wait, this does not remove me from treatment. If ever they suspect something may be growing, I get the gamma radiation. I'm sure that would drive some people crazy not getting to choose, but it's good for me.
I did not get to see my medical oncologist today. I have a PET ct next Friday, just to be sure nothing else is going on. I will then meet with him the next week to see what he thinks about chemo. We have been basically told that chemo is really not best for this because many don't cross the blood brain barrier. But he did have some ideas last time, so I'm very interested to see what he has to say.
As soon as my neuro surgeon saw me he said something about my "chipmunk cheeks" and then said I could speed up the taper on my steroids. So I will be off 3 days earlier and he said all this puffiness should go away with in a week or two after stopping. I still have to take seizure meds for 3 more months. I have been cleared for most activity, but still need to remember I just had surgery 2 weeks ago. And I have been cleared for yoga!!! Of course I got the listen to my body talk and I will. If all I can do is a few postures and then lay in the hot room for 60 minutes on my towel, then that's all I will do, happily and without shame! I'm just happy I'm cleared to go.
Because January is filled with so many what ifs and scans I will not be attempting to come back to work this month. I need to get all of this cleared up first.
I have been cleared to fly and will be coming home tomorrow. It may only be for a few days but I'm so happy! I really need a few days to just act like this isn't happening, clean my house (yes, yes, light cleaning, i know), watch all my dvr shows (Dexter and Homeland finales!!!!)))) and spend time with my best friend, I've really missed him.
Apologies now if I'm not my usual social self when I'm at home. I am so embarrassed by how I look. Seriously, I look like I have Cushings!!! And I need to rest. Also, steroids greatly depress your immunity so if you want to see me and I quiz you, which i will, about your health history over the last 2 weeks don't be offended. The last thing I need is a cold right now.
I really hope I can stay at least through Tuesday. I have been trying to see a new gyn and I have had an appointment waiting for almost 3 months!! 3 months!!! I would hate to have to re schedule, but if I'm picked for radiation it may have to be that day.
Again, thank you to everyone who checked on me today. I am feeling a little overwhelmed from today but I think a visit home will be just what I need to feel better.
Monday, January 7, 2013
Just waiting....
Patience has never been a virtue of mine and the waiting this past week coupled with all these meds has been hard. Honestly I'm just really bored too. I'm used to moving around a lot and being busy. Fortunately I have been able to get out a little, went to Barnes and Noble to get some books, ordered some from Amazon that got here really fast. I have always loved learning about nutrition but have definitely become a little obsessed these last few days, finding new blogs and books on certain diets....paleo/primal vs. vegan. It's just all so interesting how everyone thinks they are right! I've just decided to read, enjoy and take what information I need for myself and family to make smart eating choices.
Saturday was hard. For some reason I thought it would be a good idea to take my AM steroid dose with a big glass of fresh veggie juice instead of my normal protein/carb including meal. BIG MISTAKE. I don't believe that I received any of that dose and seemed to be having withdrawal symptoms all day. It was terrible! Lesson learned. I'm being much more careful at how I take my medicine.
Other than that things have been ok. Not much pain, sleeping better and continuing to taper off meds. I even did a little light exercise this morning. Went up and down the stairs about 10 times. It felt really good. May go out for a walk later today.
Saturday was hard. For some reason I thought it would be a good idea to take my AM steroid dose with a big glass of fresh veggie juice instead of my normal protein/carb including meal. BIG MISTAKE. I don't believe that I received any of that dose and seemed to be having withdrawal symptoms all day. It was terrible! Lesson learned. I'm being much more careful at how I take my medicine.
Other than that things have been ok. Not much pain, sleeping better and continuing to taper off meds. I even did a little light exercise this morning. Went up and down the stairs about 10 times. It felt really good. May go out for a walk later today.
Monday, December 31, 2012
New years eve
Well, this is definitely not how I had planned to spend today but I'm happy to at least be home and not in the hospital.
Let me first start off by saying thank you to you all. I have felt every single beam of love that has been sent my way. I have not been alone once since the start of this. My husband, parents, in laws, and sister have gone above and beyond to care for me and make sure I have wanted for nothing. Friends I am so blessed. I am exploding with gratitude right now. Thank you. Thank you for supporting me.
I'm going to try to answer a few questions I've gotten in the last 2 days in one place. I know my sister and honey have been ministers of info so hopefully this is just a second update.
- physically: mild to no pain. I'm on very high doses of steroids to help prevent brain swelling. This is making me feel the most uncomfortable. Facial swelling, abdominal swelling, huge increase in appetite, mood swings and the not sleeping. Sleep is usually my refuge so it's been hard to not be able to escape. And sleep aides don't work. The steroids are too high at this point. I do have a xanax but the effect is really laughable at this point. They prepared me for this, it's just going to be uncomfortable for a while. But I'll take it. I do know there are a lot of people who would love to only have some steroid discomfort post op. My dose tomorrow will start a slow taper through jan 19
-Emotionally: it still hasn't completely kicked in what is really happening. It was less than 2 weeks from discovery to surgery so I didn't really have time to process it. I've been very hard on myself. Last night when I was awake I laid very quietly in bed and basically mentally beat myself up for a few hours. Maybe if I had eaten this, tried this eating plan, taken this supplement, not eaten that cupcake, used only natural cleansers in the house, done more yoga, been nicer, had better karma. blah, blah, blah. At the end of it I had decided that I just didn't do enough, i failed and obviously i didn't deserve it. Which is terrible and crazy and I know it's not true but my head just went there last night. So i cried a little this morning, just got all that crap out of my system and decided I'm not doing that again. I'm going to leave a book out in the kitchen for when I can't sleep and I will get up and read.
-Mel is still here with me at my parents in Houston. He will most likely be going back tomorrow to Dallas because he needs to work. His job allows for me to have insurance, so this is very necessary for him to get back. The thought of him leaving makes me want to just throw myself down and start crying and whining but I'm not going to. No tears tomorrow, I'm not going to make him leaving any harder than necessary. I know that when dealing with stuff like this we have to maximize PTO and vacation hours. Houston friends have asked when they can come visit. This is week. This is the week I will need to see your beautiful faces. Anytime just text me first. SWSC friends: if y'all are going to have a drink or anything fun after work or on the weekend, would you all please invite my honey. He loves y'all and I hate to think of him being up there all by himself. Just text me and I will send his number.
-I have no info on further treatment. I do know that the prelim look at tumor in the OR did look like what I had before. Official report will not be back until jan 9ish. The tumor was completely removed and had not tried to attach to skull so the surgeon was able to take it out with great care, touching no other part of my brain. Therefor lessening the spread of cells. Treatment could include chemo, radiation, watch and wait. I should have a better idea about what will happen by mid January. I have apparently said something that have caused concern over the last few years involving chemo. I am not going to refuse treatment but really who is ever excited to get back on chemo. So no worries, if I need treatment I will get it.
-I will be down here until at least jan 10. As much as I would love to roll back to Plano tomorrow, I know its best to be somewhere where there is someone at home at all times at least for the the first week post op.
-I don't do certain things like numbers or talk about prognosis. I know that is how a lot of people operate, but it drives me crazy. So if you ask me anything like that and I just look at you blankly that is why. I don't have a date stamp on the bottom of my foot and so I don't act like it. And I know that is never what is being meant by anyone who asks about chances and numbers and such, this is just how my brain works. You will never catch me going over numbers with my doctor like that. I've always admired people who can get in there look at clinical trials, crunch out all these percentages that it may work, it may not, get in there and look at the prognosis and not have it freak them out. I'm not one of those people. I can get all the information I need without having to talk about certain things. I'm not in denial, this is just how I process things and for me there are just certain words that make me feel the need to get out of the room. If you find some numbers you want to share by all means tell me and I will give you my dads email. He loves that stuff. And please don't ever be afraid to ask me anything. I just wanted to explain why some questions may get a certain response from me.
-It's OK to not know what to say. Hell, I don't even know what to say about all this. And that's OK.
Today has been good so far. I made Melvinn breakfast this morning. Nothing special just some eggs but it just felt so normal and therapeutic to cook something. Its really the most normal I have felt in several days. I'm off to feed the steroid monster again. I swear I have never eaten this much in my life!!!
Let me first start off by saying thank you to you all. I have felt every single beam of love that has been sent my way. I have not been alone once since the start of this. My husband, parents, in laws, and sister have gone above and beyond to care for me and make sure I have wanted for nothing. Friends I am so blessed. I am exploding with gratitude right now. Thank you. Thank you for supporting me.
I'm going to try to answer a few questions I've gotten in the last 2 days in one place. I know my sister and honey have been ministers of info so hopefully this is just a second update.
- physically: mild to no pain. I'm on very high doses of steroids to help prevent brain swelling. This is making me feel the most uncomfortable. Facial swelling, abdominal swelling, huge increase in appetite, mood swings and the not sleeping. Sleep is usually my refuge so it's been hard to not be able to escape. And sleep aides don't work. The steroids are too high at this point. I do have a xanax but the effect is really laughable at this point. They prepared me for this, it's just going to be uncomfortable for a while. But I'll take it. I do know there are a lot of people who would love to only have some steroid discomfort post op. My dose tomorrow will start a slow taper through jan 19
-Emotionally: it still hasn't completely kicked in what is really happening. It was less than 2 weeks from discovery to surgery so I didn't really have time to process it. I've been very hard on myself. Last night when I was awake I laid very quietly in bed and basically mentally beat myself up for a few hours. Maybe if I had eaten this, tried this eating plan, taken this supplement, not eaten that cupcake, used only natural cleansers in the house, done more yoga, been nicer, had better karma. blah, blah, blah. At the end of it I had decided that I just didn't do enough, i failed and obviously i didn't deserve it. Which is terrible and crazy and I know it's not true but my head just went there last night. So i cried a little this morning, just got all that crap out of my system and decided I'm not doing that again. I'm going to leave a book out in the kitchen for when I can't sleep and I will get up and read.
-Mel is still here with me at my parents in Houston. He will most likely be going back tomorrow to Dallas because he needs to work. His job allows for me to have insurance, so this is very necessary for him to get back. The thought of him leaving makes me want to just throw myself down and start crying and whining but I'm not going to. No tears tomorrow, I'm not going to make him leaving any harder than necessary. I know that when dealing with stuff like this we have to maximize PTO and vacation hours. Houston friends have asked when they can come visit. This is week. This is the week I will need to see your beautiful faces. Anytime just text me first. SWSC friends: if y'all are going to have a drink or anything fun after work or on the weekend, would you all please invite my honey. He loves y'all and I hate to think of him being up there all by himself. Just text me and I will send his number.
-I have no info on further treatment. I do know that the prelim look at tumor in the OR did look like what I had before. Official report will not be back until jan 9ish. The tumor was completely removed and had not tried to attach to skull so the surgeon was able to take it out with great care, touching no other part of my brain. Therefor lessening the spread of cells. Treatment could include chemo, radiation, watch and wait. I should have a better idea about what will happen by mid January. I have apparently said something that have caused concern over the last few years involving chemo. I am not going to refuse treatment but really who is ever excited to get back on chemo. So no worries, if I need treatment I will get it.
-I will be down here until at least jan 10. As much as I would love to roll back to Plano tomorrow, I know its best to be somewhere where there is someone at home at all times at least for the the first week post op.
-I don't do certain things like numbers or talk about prognosis. I know that is how a lot of people operate, but it drives me crazy. So if you ask me anything like that and I just look at you blankly that is why. I don't have a date stamp on the bottom of my foot and so I don't act like it. And I know that is never what is being meant by anyone who asks about chances and numbers and such, this is just how my brain works. You will never catch me going over numbers with my doctor like that. I've always admired people who can get in there look at clinical trials, crunch out all these percentages that it may work, it may not, get in there and look at the prognosis and not have it freak them out. I'm not one of those people. I can get all the information I need without having to talk about certain things. I'm not in denial, this is just how I process things and for me there are just certain words that make me feel the need to get out of the room. If you find some numbers you want to share by all means tell me and I will give you my dads email. He loves that stuff. And please don't ever be afraid to ask me anything. I just wanted to explain why some questions may get a certain response from me.
-It's OK to not know what to say. Hell, I don't even know what to say about all this. And that's OK.
Today has been good so far. I made Melvinn breakfast this morning. Nothing special just some eggs but it just felt so normal and therapeutic to cook something. Its really the most normal I have felt in several days. I'm off to feed the steroid monster again. I swear I have never eaten this much in my life!!!
Saturday, December 29, 2012
there is no place like home
I was just discharged and I'm now at my parents. The tumor has been removed. It does appear to be a met but still waiting on full path. This was very hard to hear, as I always had hope it was benign. But the initial look does look like rhabdo, but I will just have to be patient and wait until about Jan 9.
Feeling fuzzy, will update more later.
Feeling fuzzy, will update more later.
Wednesday, December 26, 2012
Twas the night before surgery...
Of course I should be sleeping but I'm so nervous! Mel and I had a great date night. I had the most delicious lobster tail and oysters and creme brule. I decided to eat every single thing I wanted. Just had my last delicious sips of water and now I am npo until tomorrow. I know I'm not really hungry right now but just thinking I can't eat and I'm already craving a snack.
Thank you all for the huge outpouring of love. I can feel it, I really can.
Thank you all for the huge outpouring of love. I can feel it, I really can.
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