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The day finally arrived where they would release us and we could drive HOME. Home- a (new) place to live ... in Alabama. A place that I thought of as vacation - of comfort, relaxation, my parents - temporary. Now home. At this point I am so happy to go home I don't care or even want to think about my life and what lay ahead.
Up to this point we have been in the hospital for 2 weeks. I know that is not a long time, compared to other people, but to me - us- it seemed like FOREVER. The worst part was ... well, everything. Except - for the food. My God, the food was so good. And they would deliver it to us if we wanted to order. Not only did they provide us with a huge menu, but there were also a couple diners we could sit and eat or take out. I have never eaten so good - and so cheap.
I was in 'waiting' to leave the hospital due to my calcium and creatine numbers. They both had to be within a certain range and it was taking forever to get there. It would be good one day, then back down the next. Then it would go back up, but not enough. It was a very frustrating, daily wait and hope and pray that my numbers would be up. Because from our perspective, I was doing no-good by being in the hospital. I could do the same thing (watch tv and walk and WAIT) at HOME. Why did I need to be there? Augh. Hmm.
Somehow (probably by my crying because I was going crazy being in the hospital) we convinced my surgeon that if my numbers were at a certain point they would release me. She agreed. We drew blood that night (like every night) - and waited (tried to sleep - but impossible) to see what they were. There was a good (they better be) chance they were going to be what they needed/wanted.........But because life ISN'T easy and makes you want to laugh ... guess what happened?
The results didn't come back, for a number of unexplained reasons the tests didn't go through. So another blood test. Which meant another day to wait.
We waited until that morning to get the results. Waited. Ate breakfast. Waited. Talked to the doctor. Waited. AND then, FINALLY - she said we could go. YES. 2 weeks... out. And then we waited. Papers. Waiting. Taking IV out. Waiting. But who cares, we were on our way out.
The car ride home was weird (I don't know how else to describe it for now). Because of my drugs I didn't feel "normal" so it was a little scary being in a car and not having control. I will explain this feeling later.
Home. New home.
Now just learning to sleep.
Thursday, June 21, 2012
Tuesday, June 19, 2012
Summa Reading
One of my personal goals is to read more books. I like to
read before I go to bed at night and during the weekends. Because of what has
happened my summer reading list has tripled in size (thanks Grandma).
I have decided to list
what I am going to read here because I like lists and also incase any of you
want to know. Summer reading list
–turned into – 6 month reading list. I hope to read and finish these within the next
6 months … this might seem lofty – don’t know?
In order particular order
-Tan Twan Eng – The Gift of Rain
-Ursula Hegi – The Vision of Emma Blau
-Bret Lott – Jewel
-Jan Karon – Light from Heaven
-Isabol Allendale – Daughter of Fortune
-Malike Oufkir – Stolen Lives
Freedom
-Barbara Bickmore – East of the Sun
-Kim Chernin – In my Mother’s House
-Penina Keen Spinka – Picture Maker
-Kenneth Wishnia – The fifth Servant
-Sandra Dallas – Tall Grass
-Deborah Roban – The Olive Grove
-Anchee Min – The Last Empire
-Lorna Landvik – Angry Housewives
-Jeannelle Wells – The Glass Castle
-Peter Carey – Parrot and Oliver in America
-Barbara Kingsolver – The Bean Trees
The
Poisonwood Bible
Animal, Vegetable, Miracle
-Leon Uris – The Haj
-Diane Ackerman – The Zookeeper’s Wife
-Alexandre Dummand – 3 Cups of Tea
-Yongey Mingyur Rinpoche – The Joy of Living
BOLD- currently reading
GREEN- have read
My great/fabulous grandmother sent me these books to read. We like an assortment of reading ...
What I Know Now
What we thought and what I know now is different ... so which version should I tell? ha
I thought that I had 2 separate problems - brain cancer and hyperparathyroid - but in my reading and understanding because the doctors haven't been all that clear - my thyroid problem is probably due to my brain cancer. :) Great!
I believe it was the lack of understanding and clarity that made me feel so relaxed about my biopsy. Looking back now, I should have been scared out of pants. Everything happened so quickly that I really didn't have time to think. By the time I was understanding why I was in the hospital in the first place I went under the knife. I thought (at the time) it was a cool experience having a biopsy of my brain - I had to wear a bird-cage contraption that I found very humorous. I felt like tweety bird and made numerous comments about this I do remember.
Fortunatly I don't remember much about this surgery thanks to the great drugs they gave me ... Guess that is what they want? I remember trying really hard to "not forget" but in the end I did. There are bits and pieces I do remember and places I do recall, but overall I don't remember much.
That dang cage left scars though. Because they were preforming a biospy they had to screw (literally) the cage to my head. Therefore, there was a screw in my head (replaced after with staples) and two on the sides of my face. These sides ones did produce some blood and funny-looking scars now. I felt like Frankenstein after, I guess, because I picture him wearing that cage and having similar scars? Weird? Yes, my crazy brain ...
the marks on my face are getting darker, the tanner my face gets. Aughhhh
Recovery was fairly easy for me ... I just remember being hungry. They pumped me up with fluids 24/7 so I quickly gained weight in my stomach and face. Not.so.happy.
They were giving me steroids and vitamins and other (yummy) fluids to help with recovery and my other "problem."
The medicine they were pumping me and I was taking - BTW - I never before could swallow 2 pills at once. Being in there for 2 weeks I quickly learned how to swallow about 5-6 at once. I was so proud of myself. ha ha
----made me pee every 10 minutes (literally). Along with
super starving
super thirsty
moody in the mornings
tired
bloated
Once it was decided that I would have my other surgery before beginning my chemo treatment (that was a lovely conversation between my MANY doctors - ha) we began to prep. I had to undergo a couple of screenings which lasted several hours. It involved me laying down on HARD tables, in very nonconvertible positions for what seemed like hours. I was scheduled for the following morning, which meant a little rest for me and it gave my dad the chance to drive home and do some errands. A few hours later I came back to my room to only my mom who had the
pleasure of telling me that they had an opening and were prepping me for surgery NOW. WHAT!!??
The only good thing about this was it didn't allow much to settle in. Thank goodness I had eaten breakfast. :)
20 minutes later I was back for surgery, getting a new IV and signing waivers. I was more nervous for this surgery partly because I wasn't prepared (to think and ask tons of questions to my parents) and the other part because I was still confused. I wasn't as confused as when I first entered the hospital, but I wasn't feeling completely secure in the doctors and everything was moving so quickly. I was thankful to have done the surgery then instead of the morning, but still uneasy about the whole situation.
I was also nervous because my mom informed me that with this surgery I was going to have a breathing tube in me and they would take it out once I woke up and could breathe on my own. Secretly, I have always wanted to experience that ... but the fact that it was about to take place really frightened me. What if I couldn't breathe? What if I freaked out? How would it feel ... would it hurt?
No time to think about these questions. Once I was back getting prepped for surgery, I was out.
The only time I have been in the hospital for surgery, IV, or anesthesia was when I was 5 or 6 to have my tonsils taken out. Needless to say, I don't remember that much. Now, I was doing this twice in a madder of days.
The surgery went fine - a little longer than expected - but fine. I went into recovery, saw my mom, and fell asleep. I don't remember recovery - the only thing I remember is waking up and being wheeled to my room. I was so tired and slept the rest of the night. The next thing I remember is waking up the next morning - STARVING!
Recovery went well - I felt good. Walking was a lot harder for me for some reason. I walked so slowly ... so slowly. I enjoyed getting out of bed and walking - the feeling trapped was quickly coming back.
I still had my good appetite
Still tired
Hoping to get out of the hospital ... what do I need to do to get out???
I thought that I had 2 separate problems - brain cancer and hyperparathyroid - but in my reading and understanding because the doctors haven't been all that clear - my thyroid problem is probably due to my brain cancer. :) Great!
I believe it was the lack of understanding and clarity that made me feel so relaxed about my biopsy. Looking back now, I should have been scared out of pants. Everything happened so quickly that I really didn't have time to think. By the time I was understanding why I was in the hospital in the first place I went under the knife. I thought (at the time) it was a cool experience having a biopsy of my brain - I had to wear a bird-cage contraption that I found very humorous. I felt like tweety bird and made numerous comments about this I do remember.
Fortunatly I don't remember much about this surgery thanks to the great drugs they gave me ... Guess that is what they want? I remember trying really hard to "not forget" but in the end I did. There are bits and pieces I do remember and places I do recall, but overall I don't remember much.
That dang cage left scars though. Because they were preforming a biospy they had to screw (literally) the cage to my head. Therefore, there was a screw in my head (replaced after with staples) and two on the sides of my face. These sides ones did produce some blood and funny-looking scars now. I felt like Frankenstein after, I guess, because I picture him wearing that cage and having similar scars? Weird? Yes, my crazy brain ...
the marks on my face are getting darker, the tanner my face gets. Aughhhh
Recovery was fairly easy for me ... I just remember being hungry. They pumped me up with fluids 24/7 so I quickly gained weight in my stomach and face. Not.so.happy.
They were giving me steroids and vitamins and other (yummy) fluids to help with recovery and my other "problem."
The medicine they were pumping me and I was taking - BTW - I never before could swallow 2 pills at once. Being in there for 2 weeks I quickly learned how to swallow about 5-6 at once. I was so proud of myself. ha ha
----made me pee every 10 minutes (literally). Along with
super starving
super thirsty
moody in the mornings
tired
bloated
Once it was decided that I would have my other surgery before beginning my chemo treatment (that was a lovely conversation between my MANY doctors - ha) we began to prep. I had to undergo a couple of screenings which lasted several hours. It involved me laying down on HARD tables, in very nonconvertible positions for what seemed like hours. I was scheduled for the following morning, which meant a little rest for me and it gave my dad the chance to drive home and do some errands. A few hours later I came back to my room to only my mom who had the
pleasure of telling me that they had an opening and were prepping me for surgery NOW. WHAT!!??
The only good thing about this was it didn't allow much to settle in. Thank goodness I had eaten breakfast. :)
20 minutes later I was back for surgery, getting a new IV and signing waivers. I was more nervous for this surgery partly because I wasn't prepared (to think and ask tons of questions to my parents) and the other part because I was still confused. I wasn't as confused as when I first entered the hospital, but I wasn't feeling completely secure in the doctors and everything was moving so quickly. I was thankful to have done the surgery then instead of the morning, but still uneasy about the whole situation.
I was also nervous because my mom informed me that with this surgery I was going to have a breathing tube in me and they would take it out once I woke up and could breathe on my own. Secretly, I have always wanted to experience that ... but the fact that it was about to take place really frightened me. What if I couldn't breathe? What if I freaked out? How would it feel ... would it hurt?
No time to think about these questions. Once I was back getting prepped for surgery, I was out.
The only time I have been in the hospital for surgery, IV, or anesthesia was when I was 5 or 6 to have my tonsils taken out. Needless to say, I don't remember that much. Now, I was doing this twice in a madder of days.
The surgery went fine - a little longer than expected - but fine. I went into recovery, saw my mom, and fell asleep. I don't remember recovery - the only thing I remember is waking up and being wheeled to my room. I was so tired and slept the rest of the night. The next thing I remember is waking up the next morning - STARVING!
Recovery went well - I felt good. Walking was a lot harder for me for some reason. I walked so slowly ... so slowly. I enjoyed getting out of bed and walking - the feeling trapped was quickly coming back.
I still had my good appetite
Still tired
Hoping to get out of the hospital ... what do I need to do to get out???
Monday, June 18, 2012
Hospital
I
don’t remember a ton about going to the hospital or being there or my
surgeries (I guess that is a good thing)! I remember bits and pieces of
everything that went on during my 2-week stint in the hospital but when I
try to think about what I did all day, I have no idea? Why is this? I
slept, watched tv, played cards, walked and ate ... did that really take
up all of my day?
There were days when I had CT scans or other
types of screening ... and for the most part I remember the days went by
really fast. The nights on the other hand were real sllllooooow. The
nights were hard for me because they always involved blood tests that
took forever to draw. The nurses were good, but being in a hospital for 2
weeks - getting poked multiple times a day - leads to not so many
places on your arm to draw blood.
By the end of my stay they ended up putting a central-line in my body to draw blood. Was I so happy!!
The surgeries went fine ... clearly, because I
am at home now. I thought I would write a little about them since I
haven't yet. Warning: It will be brief and not descriptive - due to what
I remember and the time that has lapsed.
Thursday, June 14, 2012
My Story
... this is my version.
Things for me went CRAZY to say the least. I got sick while I was in
Guatemala- thought it was a head cold- flu - but thank god for my
friend Emma and Liza!!! Things are good now.. made it back home with my Dad
flying to Guate to come get me. It was weird because I thought I was
sick, I was tired and had a sore throat. Went to one doctor (joke) and
told him what I thought..I think he gave me some pills...don't know
what they were, dont remember (later found out they were anti-anxiety pills because he thought I was just having a bad day :) ). Think I took them (jahaha??) and it did
nothing. So my friend Emma told me she was going to take to me to
another doc that her boyfriend's family knows and use. Realiable. So I
went there, had an MRI- they found soemthing on my brain and that is
why I went home. They didnt know in Guate and why would I stay there
anyway?
This is where things get blury for me.. but what I have been told by
my folks (thank God for them) ...
Went to the ER in AL ( AL-Alabama -where they live) and found out that I have
brain cancer ... no, big deal. jaja Had a biospy.... to figure if that
was what it was because we were hoping it was infetion - nobody knew- I was
a medical mystery. The doctors kept saying "infection, infection" so that is why we were hopeful about that.
My symptoms were tired (lazy-jajaja), face
numbiness, head aches, and apparently I couldn't remember (I don't know--I literally
don't rem). But at the same time I was having problems with my
parathyoid and throid (family history) soo it was very confusing.. because
that can cause confusion and memory loss. Anyway went to ER in Montgomery, sent me
to another hospital in Birmingham, AL (the best of the best) and that
is where I have been/was. I spent 2 weeks in the hopital - I had 2 surgeries ...
My first was the biospy and 2nd was the parathyoid - it was removed. 3 of them and a node off of my thyroid...
Still recovering from both (I think) - but able to do a lot now. Walking a lot
more, just slow...I have side effects of both surgeries still, like
numbiness in my face, arms and feet...but no pain. I hope that it will
go away soon. But who knows..IT might be all the medicine I am taking..
6 weeks of radiation, every day (during the week) at 7am for 10 minutes. Then 4 weeks off - with no radiation and no chemo pills. The radiation is "easy" - I go into the office, lay down on a table and they put a mask on me and I get radiation for 10 minutes. It is (was) the best 10 minutes because I got to relax, no one talking to me and I just lay there.
I take my chemo pills at night so I don't get sick. Once I am done with the 4 weeks "off," I have a routine visit then a MRI in July. After that I have a routine MRI every 2 months to determine if the chemo pills are working. (pills- only take 5 days out of a month - like a birth contol pill) If it doesn't work then we have to decide what is the best course of action to take. I really don't know what this means because we are not there yet and everyone thinks this is going to work.
There is still a lot up in the air until July/Sept
I think that is the whole story..
Things for me went CRAZY to say the least. I got sick while I was in
Guatemala- thought it was a head cold- flu - but thank god for my
friend Emma and Liza!!! Things are good now.. made it back home with my Dad
flying to Guate to come get me. It was weird because I thought I was
sick, I was tired and had a sore throat. Went to one doctor (joke) and
told him what I thought..I think he gave me some pills...don't know
what they were, dont remember (later found out they were anti-anxiety pills because he thought I was just having a bad day :) ). Think I took them (jahaha??) and it did
nothing. So my friend Emma told me she was going to take to me to
another doc that her boyfriend's family knows and use. Realiable. So I
went there, had an MRI- they found soemthing on my brain and that is
why I went home. They didnt know in Guate and why would I stay there
anyway?
This is where things get blury for me.. but what I have been told by
my folks (thank God for them) ...
Went to the ER in AL ( AL-Alabama -where they live) and found out that I have
brain cancer ... no, big deal. jaja Had a biospy.... to figure if that
was what it was because we were hoping it was infetion - nobody knew- I was
a medical mystery. The doctors kept saying "infection, infection" so that is why we were hopeful about that.
My symptoms were tired (lazy-jajaja), face
numbiness, head aches, and apparently I couldn't remember (I don't know--I literally
don't rem). But at the same time I was having problems with my
parathyoid and throid (family history) soo it was very confusing.. because
that can cause confusion and memory loss. Anyway went to ER in Montgomery, sent me
to another hospital in Birmingham, AL (the best of the best) and that
is where I have been/was. I spent 2 weeks in the hopital - I had 2 surgeries ...
My first was the biospy and 2nd was the parathyoid - it was removed. 3 of them and a node off of my thyroid...
Still recovering from both (I think) - but able to do a lot now. Walking a lot
more, just slow...I have side effects of both surgeries still, like
numbiness in my face, arms and feet...but no pain. I hope that it will
go away soon. But who knows..IT might be all the medicine I am taking..
6 weeks of radiation, every day (during the week) at 7am for 10 minutes. Then 4 weeks off - with no radiation and no chemo pills. The radiation is "easy" - I go into the office, lay down on a table and they put a mask on me and I get radiation for 10 minutes. It is (was) the best 10 minutes because I got to relax, no one talking to me and I just lay there.
I take my chemo pills at night so I don't get sick. Once I am done with the 4 weeks "off," I have a routine visit then a MRI in July. After that I have a routine MRI every 2 months to determine if the chemo pills are working. (pills- only take 5 days out of a month - like a birth contol pill) If it doesn't work then we have to decide what is the best course of action to take. I really don't know what this means because we are not there yet and everyone thinks this is going to work.
There is still a lot up in the air until July/Sept
I think that is the whole story..
Sunday, June 10, 2012
Memories
A funny thing?
|
Right now … early June, my memory sucks. I wish I could tell
you the reason – but I don’t exactly know. My the most probable cause is my
cancer … but the thing about having brain cancer and having radiation and
taking chemo pills is you don’t’ know if that is because of that or the
swelling. And do I have swelling, and if so is that because of my cancer or the
radiation there are giving me? Confused yet …?
Me too!
CHANGES: A short Visit
I thought about giving up on my blog … but considering
everything that has happened over the past couple of moths I have (clearly)
decided to keep writing. I started this blog in the very beginning for me, then I
wrote it for my family (and friends- but figured not many would follow bc I
knew it would be boring) but now I guess I am writing for myself again.
Basically to remember everything and a way to express myself. Because I
probably will never look back at this unless one day I decide to write a book
about everything (which would be secretly – awesome). Although I am not a good
writer, I think I could make it work – if someone would read this. :)
So – this blog will probably be boring – and you might know
everything that I write, but it is not about you – it is about me. So my
spelling might be the best, and my commas WILL certaintly not go in the correct
places , BUT who cares. I am scarasitc and will probably crack really
inappropriate brain/mind jokes … so get ready….
THE REAL STORY
I have decided to write an account of my journey home (My
parent’s house in Alabama) in sections of what happened. My surgeries … cancer
… working and everthing in between. I am not tyring to get attention for this …
I just need to get it out and the easiest wasy for me to do this is write and
since typing is way easier than hand writing this is what I am doing. Why Blog
and publish … why not? I have nothing to hide.
The story and my experiences will be in sections … so it
won’t be the most updated for a little while until I can catch up…
I hope you enjoy!
Tuesday, June 5, 2012
Guatemala: An Expected Visit
The last time anything even remothingly exciting happened to
me that I wrote about was in early Feb when my dad and uncle, Mark, came to
vist me in Guatemala. It was my dad’s 4th time (I think) and my
uncle’s first. It was exciting for me because I love to show off Antigua –
really all of Guatemala and I knew my uncle would appreciate the country. The
plan was for them to stay a week – we were traveling to the shore to do some
fishing (of course) and Semuc Champey – a place I have been dying to go. My dad
and uncle are huge fishing people, and although the thought of fishing is
boring (mind you I have grown up fishing) – I wanted to tag along. I figured I
could catch some rays and read a book or maybe even fish myself who knows?
To sum it all up … the trip was really good. I didn’t fish
but I enjoyed every second on the boat. I can ride a boat all day long and
never get board. The wind in your hair and the smell it is so nice. The best
part of the day was when we saw dolphins – even my uncle and dad enjoyed that
more than the fishing (I think … haha). The boat crew really didn’t want to
play with them much so it was a short time spent with them but well worth it.
The next journey was to Semuc – a far-outside-community
in which we drove to … the thing is, when mdad goes anywhere he rents a car.
Usually I don’t mind, but this drive was crazy to say the least. First off, it
takes about 10 hours to get there … I think it took us over that amount. And
second, the roads suck … there are no signs and asking for directions is almost
impossoible. I mean, I can ask in Spanish – but that doesn’t mean I fully
understand the words. It was an interesting ride … but we made it and at the
end of the day that is wroth something.
Semuc is amazing – there are no words. The pictures I will
show wont’t do it justice. The water is crystal – turquiouse blue. When we went
the weather was perfect, cold – but prefect. There weren’t many people there
also… Another thing that you have to do while you are there is go diving in the
cave. We took a guided tour of a water cave where are you have is a candle!!!
It was awesome – the morning started off with a rope swige… the highest rope
swing I have ever been on. You sit on the seat and you have to jump off when
you get to the high point. It doesn’t sound bad at all… but it was scrary and I
love water and not scared of heights. We did it a couple of times before we had
to head into the cave. The worst part was after you jump off, into the flowing
river, you had to swim to get to the shore. If you hesitated for even amoment
in the water, you were down the river. So basically you were in the water and
trying with all your might to get to the side. It was funny because you were in
shock because of the jump, then the cold water hits you like a brick – then you
have to swim against the current!!!
Next was the cavern … the same cold water but at least you
are use to it now. At parts of this cave we could touch, but for the most part
we were swimming from rock to rock or ledge to ledge. The difficult portions
were trying not to let the candle go out in the water and swim at the same
time. Ha
There were only a couple of places throughout the cave that
the water flowed really hard and I had to let the candle go out just so I could
hold on to something so I woldn’t losr my balance and drift down and away.
Highly recommend!!!!! At one point we had to climb up and out of the water and
pass through – literally through- a water fall. The water was coming down so
hard and fast you lost your breathe for a second as you passed under it. Once
you were there you had to climb a short ladder to cont on the jouney. It was so
cool!!
The trip for them was short but sweet! I really enjoyed having them there.
We took tons of photos but I got my camera stolen so I will post pics not from my camera. :)
Reminiscing on the Past: Goals
I have decided that I would keep on writing even though I am
at home and not on “my journey.”
I thought I would first go back through my goals … since I
haven’t done that in a while and a LOT has changed. Let’s go ahead and take a
look …
Here are the goals I first wrote down:
Goal 1: Spanish - LEARN to a point where I can write 'proficient' in Spanish on my resume.
Goal 2: Vegetarian. (writing this while holding my breath)
Goal 3: Fix my hip
Goal 4: Travel in Guatemala
6 Months later - I can say that # 1- I can't fully do yet- BUT I can write something on there. And I plan to study more once I know my life plan and create a schedule for myself.
#2. Check.
#3. Work in progress.
#4. Check. Look for future blog - coming soon!!! :)
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