Finished #2. Feeling okay. Went out to dinner. Parents leave tomorrow-booooo.
Going to bed. Happy Halloween.
Wednesday, October 31, 2012
Tuesday, October 30, 2012
What is chemo??
Before all this I didn’t really know what the difference between chemo and radiation was, it all just seemed like some nondescript, horrible stuff that I hoped I never had to go through. But the world keeps spinning, and it turns out chemo and radiation are two different things. I’m still not entirely clear on what radiation is, and I’m not sure I’ll even have to go through it, so I’m happy to just discuss chemo.
I actually took most of this from someone else. It is a great description; I have updated it to apply to me... but the template is pretty much someone else's. I guess on a blog it is not plagerism, right?
Chemotherapy is a treatment for cancer that involves an IV, a lazy boy recliner, and cookies. The lazy boys at the place I go are all brown and covered in fake leather. They are lined up against a wall with dividers between them, giving the same sort of fragile privacy that similar dividers provide in the ER or other really private places - like maybe the men's bathroom.
Each lazy boy has a phone next to it. This is in case you are super busy and need to make important phone calls whilst they are pumping you full of the drugs that will damn-near kill you. I don’t know anyone this busy. Each chair is also equipped with it’s own television that gets poor reception of local stations. This is convenient if you are really nuts about daytime television and you wouldn’t miss your soaps for anything.
There are cookies. I don’t know where they get them, but they are awesome. Clearly the bakery keeps the best cookies for us cancer patients. They probably use a pound of butter in each cookie, but I mean, what do we care, right? What, is it going to give us cancer? Gimme one of those damn cookies, and put more butter in it next time.
The place that I receive these great cookies is a sub-section of a regular clinic. It is like the secret room that you never really want to enter. It is like that red button that the astronauts are told not to push, but you really wonder what is behind the door that holds those great cookies.
The rest of the cancer room is pretty sterile looking. The walls are painted with the soothing, tan color that they always use on those HGTV shows. The nurses sit at a big desk and talk to the patients. They smile a lot. They talk in quiet sweet voices - they must eat a lot of cookies.
When you come for your chemotherapy session, they first take your blood and send it off to “the lab,” which must be a place very, very far away, judging on the amount of time it takes for things to go and come back from it. You then have to wait for the far-away people at “the lab” to test your blood.
Then one of the nice looking nurses puts on what looks like a bomb-defusing suit to mix the chemicals. She wouldn't, for some odd reason, be in contact with any of the chemicals they are about to put into my body. The drugs are made and mixed exactly based on my height and weight that day. But based on how many cookies I eat or how much time it takes - this could really vary.
Meanwhile, you are still sitting in the lazy boy, watching your soaps and eating your butter cookies. The nurses hook up an IV to the port that was surgically implanted in your chest and give you huge amounts of “saline.” “Saline” is something that looks like water but is not but that makes you have to go to the bathroom a lot. Which then puts me to pass tby the tray with he cookies - again.
Before the drugs are fully mixed, another the nurse, puts several drugs through your IV. First, she puts in a steroid. This is to bolster your system before the other drugs destroy your system. Having the steroid is a lot like having a direct IV drip of pure, liquid caffeine. It is what I really wished for when I was in college... but now just gives me a really bad jittery feeling.
Then the chemo drugs come. Their are four different drugs that need to go into you before you can leave. The first one is colored like red Kool-Aid. It’s a little frightening to see the red liquid floating down the IV tube towards your body. You think, “OH GOD, here it comes!” And the nurse is looking at you, and you are looking at the nurse, and suddenly it seems like all the other patients are looking at you, and you are looking at them, and the red stuff is coming down the pipe, and the nurse is looking at you, and you can’t stop fidgeting, and the room is getting smaller, and it’s coming and it’s coming and it’s coming!!!!
But then it’s not so bad. It doesn’t feel like anything. One by one they put all the drugs into you and it doesn’t feel like anything. You might as well just watch your soap operas, because it’s not exciting. I bring my laptop or my iPad and watch movies and listen to music.
Then they give you a few shots that will, again, help fix the system that the drugs just screwed up. By this point you are pretty sick of being stuck with needles and you have had your fill of butter cookies. They take out the IV and they tell you to go home, that’s it.
I actually took most of this from someone else. It is a great description; I have updated it to apply to me... but the template is pretty much someone else's. I guess on a blog it is not plagerism, right?
Chemotherapy is a treatment for cancer that involves an IV, a lazy boy recliner, and cookies. The lazy boys at the place I go are all brown and covered in fake leather. They are lined up against a wall with dividers between them, giving the same sort of fragile privacy that similar dividers provide in the ER or other really private places - like maybe the men's bathroom.
Each lazy boy has a phone next to it. This is in case you are super busy and need to make important phone calls whilst they are pumping you full of the drugs that will damn-near kill you. I don’t know anyone this busy. Each chair is also equipped with it’s own television that gets poor reception of local stations. This is convenient if you are really nuts about daytime television and you wouldn’t miss your soaps for anything.
There are cookies. I don’t know where they get them, but they are awesome. Clearly the bakery keeps the best cookies for us cancer patients. They probably use a pound of butter in each cookie, but I mean, what do we care, right? What, is it going to give us cancer? Gimme one of those damn cookies, and put more butter in it next time.
The place that I receive these great cookies is a sub-section of a regular clinic. It is like the secret room that you never really want to enter. It is like that red button that the astronauts are told not to push, but you really wonder what is behind the door that holds those great cookies.
The rest of the cancer room is pretty sterile looking. The walls are painted with the soothing, tan color that they always use on those HGTV shows. The nurses sit at a big desk and talk to the patients. They smile a lot. They talk in quiet sweet voices - they must eat a lot of cookies.
When you come for your chemotherapy session, they first take your blood and send it off to “the lab,” which must be a place very, very far away, judging on the amount of time it takes for things to go and come back from it. You then have to wait for the far-away people at “the lab” to test your blood.
Then one of the nice looking nurses puts on what looks like a bomb-defusing suit to mix the chemicals. She wouldn't, for some odd reason, be in contact with any of the chemicals they are about to put into my body. The drugs are made and mixed exactly based on my height and weight that day. But based on how many cookies I eat or how much time it takes - this could really vary.
Meanwhile, you are still sitting in the lazy boy, watching your soaps and eating your butter cookies. The nurses hook up an IV to the port that was surgically implanted in your chest and give you huge amounts of “saline.” “Saline” is something that looks like water but is not but that makes you have to go to the bathroom a lot. Which then puts me to pass tby the tray with he cookies - again.
Before the drugs are fully mixed, another the nurse, puts several drugs through your IV. First, she puts in a steroid. This is to bolster your system before the other drugs destroy your system. Having the steroid is a lot like having a direct IV drip of pure, liquid caffeine. It is what I really wished for when I was in college... but now just gives me a really bad jittery feeling.
Then the chemo drugs come. Their are four different drugs that need to go into you before you can leave. The first one is colored like red Kool-Aid. It’s a little frightening to see the red liquid floating down the IV tube towards your body. You think, “OH GOD, here it comes!” And the nurse is looking at you, and you are looking at the nurse, and suddenly it seems like all the other patients are looking at you, and you are looking at them, and the red stuff is coming down the pipe, and the nurse is looking at you, and you can’t stop fidgeting, and the room is getting smaller, and it’s coming and it’s coming and it’s coming!!!!
But then it’s not so bad. It doesn’t feel like anything. One by one they put all the drugs into you and it doesn’t feel like anything. You might as well just watch your soap operas, because it’s not exciting. I bring my laptop or my iPad and watch movies and listen to music.
Then they give you a few shots that will, again, help fix the system that the drugs just screwed up. By this point you are pretty sick of being stuck with needles and you have had your fill of butter cookies. They take out the IV and they tell you to go home, that’s it.
Family and hair....
My parents are here!!! It is great.... having a great time and drinking and eating great food! My mom made Curry tonight for dinner. It smells wonderful!!
And thought I would update. My hair is still intact and on my head. Not sure if it is going to fall out, but expecting it. Like the shorter hair, but maybe a little longer.
Drinking margaritas!
And thought I would update. My hair is still intact and on my head. Not sure if it is going to fall out, but expecting it. Like the shorter hair, but maybe a little longer.
Drinking margaritas!
Saturday, October 27, 2012
Happiness
I have found what is happiness.... It includes 2 glasses of wine 3 Oreos and a movie with my husband. And it does not include nausea or extreme fatigue... This is the life.
Halloween
It has been quite the decision as to what to be for Halloween. I mean I have great scars across my chest (see below) so I could get some kind of knife or something. It is also election season and I am sure I could pull off some kind of something about me breaking out of the binder of women or something.
However, I am going to have chemo on Wednesday... Halloween day... so I am thinking since I am not going to be feeling so well... and I might be kind of grey looking. I am just going to put on a bunch of grey clothes and go as "50 Shades of Gray". Although go is a relative term, what I really mean is sit in my house and know that is what I am. I know you were all wondering. So there it is folks, my lack of enthusiasm and creativity has shown its' self again.
However, I am going to have chemo on Wednesday... Halloween day... so I am thinking since I am not going to be feeling so well... and I might be kind of grey looking. I am just going to put on a bunch of grey clothes and go as "50 Shades of Gray". Although go is a relative term, what I really mean is sit in my house and know that is what I am. I know you were all wondering. So there it is folks, my lack of enthusiasm and creativity has shown its' self again.
Friday, October 26, 2012
Today is a good day
Today I feel better. I have not felt well for the past few days.
On Wednesday, I lost the battle of not throwing up. Actually lost it during class. I did not feel well in the morning. I thought I needed to eat something. I ate. I got sick in the middle of class, excused myself, threw up and then went back and taught the rest of my class.
I am not sure if it had to with the fact that I had not taken my nausea meds or that I was so backed up. This really does back up your system. I took a lot of Senecot and MiraLax... they are not miracles. They did not work well for me. Oh well - guess it had to either go up or down. I ended up taking a nap in my office on the 3 inch foam pad Kyle brought in just for that occasion. I needed the nap.
On Thursday i was feeling better - still a little queasy, but better. I assume this is what the first trimester of prenancy is like. A little queasy. Not nauseated enough to throw up but enough that you are aware of the smells and foods you eat.
Today is better. I have felt pretty good all day long. I think I am going to keep taking my anti-nausea meds. I guess I need them more than I thought.
According to Web MD - the most reliable medical source :) , the things that make you more prone to nausea are:
Getting high doses of chemotherapy drugs
Getting certain chemotherapy drugs intravenously instead of by mouth, since it will be absorbed more quickly
Getting frequent treatments -- the less time you have to recover between treatments, the greater your risk of nausea
Being a woman
Being younger than 50
Having a history of motion sickness
Being prone to vomiting when sick
Not drinking alcohol
Really I fit all of these - and we all know how little alcohol I can handle... So the moral of the story is - drink more so that if you get cancer you won't be as sick from the chemo because you built up your tolarance.
On Wednesday, I lost the battle of not throwing up. Actually lost it during class. I did not feel well in the morning. I thought I needed to eat something. I ate. I got sick in the middle of class, excused myself, threw up and then went back and taught the rest of my class.
I am not sure if it had to with the fact that I had not taken my nausea meds or that I was so backed up. This really does back up your system. I took a lot of Senecot and MiraLax... they are not miracles. They did not work well for me. Oh well - guess it had to either go up or down. I ended up taking a nap in my office on the 3 inch foam pad Kyle brought in just for that occasion. I needed the nap.
On Thursday i was feeling better - still a little queasy, but better. I assume this is what the first trimester of prenancy is like. A little queasy. Not nauseated enough to throw up but enough that you are aware of the smells and foods you eat.
Today is better. I have felt pretty good all day long. I think I am going to keep taking my anti-nausea meds. I guess I need them more than I thought.
According to Web MD - the most reliable medical source :) , the things that make you more prone to nausea are:
Really I fit all of these - and we all know how little alcohol I can handle... So the moral of the story is - drink more so that if you get cancer you won't be as sick from the chemo because you built up your tolarance.
Wednesday, October 24, 2012
Wig...
Right, I am now officially a wig expert. As hair loss is one of the biggest side
effects of all chemo-therapies, I think it is worth a mention or even a whole
blog post! Not all chemos cause hair loss. Most cause some degree of hair
thinning. Also all people react differently. I'm told I have a 90% chance of
losing 50% or more of my hair. On the other hand, eyebrows and eyelashes may or may not also go (Eeeek!)
as well as all other body hair I sure hope anyway (so long gilette venus my old friend, I will not
miss YOU). What is the point of chemo if not that you don't have to shave your legs. A very good friend, on hearing my diagnosis, pointed out that I have
spent thousands on hair removal. Stupid move, would have come out anyway.
Hilarious, I love her.
Once chemo is over, my hair will regrow. Very fine at first, they call it chemo hair. This needs to be cut 3-4 more times and my own hair will return. It will take 12-18 months to get chin length hair. Wowzers. Should have enjoyed my hair more.
At this moment, I feel OK about the hair loss - once I cut my hair off I am better now. When it comes to the day it starts coming out, or the day to shave my head I will not feel OK about the hair loss. Simple as that.
So Kyle and I went to the wig place in Sioux Falls. A strange sort of environment, wigs everywhere, alopecia and chemotherapy patients. Overall a nice vibe though weirdly enough. It was quite strange to see all the wigs everywhere...
So, wig choices are: synthetic (don't need styling, cheaper, cant be worn past shoulder length as they get tangled and matted when rubbing against clothes) or real human hair (need to be washed and styled, can be any length, lasts 2 years). So I decided to try both. The worst part about this was when she put it on they don't sit right because of all my hair.
What I settle on: I don't know if I am going to get a wig at all. I think I may just rock the hat and scarf look. They just don't feel right and really they are not going to make me look or feel less sick. We went to the really really nice place, too. Actually went to a few places - the first much nicer than the others. If I were to get one it would be very expensive and nice, but I am not convinced I need or what it.
I did consider or not I would be freaked out my having someone else's hair on my head or not. Going to try not to think about it. Also, wondering whose hair this was and why they sold it. She told me most the hair was Indian hair. What kind of life must they have to spend years growing this hair to sell. Made me feel very lucky.
Moral of the story, appreciate your head hair, don't waste money on removing your body hair :)
oh and while I have not decided if I am going to get one...... Here are some pictures.
Once chemo is over, my hair will regrow. Very fine at first, they call it chemo hair. This needs to be cut 3-4 more times and my own hair will return. It will take 12-18 months to get chin length hair. Wowzers. Should have enjoyed my hair more.
At this moment, I feel OK about the hair loss - once I cut my hair off I am better now. When it comes to the day it starts coming out, or the day to shave my head I will not feel OK about the hair loss. Simple as that.
So Kyle and I went to the wig place in Sioux Falls. A strange sort of environment, wigs everywhere, alopecia and chemotherapy patients. Overall a nice vibe though weirdly enough. It was quite strange to see all the wigs everywhere...
So, wig choices are: synthetic (don't need styling, cheaper, cant be worn past shoulder length as they get tangled and matted when rubbing against clothes) or real human hair (need to be washed and styled, can be any length, lasts 2 years). So I decided to try both. The worst part about this was when she put it on they don't sit right because of all my hair.
What I settle on: I don't know if I am going to get a wig at all. I think I may just rock the hat and scarf look. They just don't feel right and really they are not going to make me look or feel less sick. We went to the really really nice place, too. Actually went to a few places - the first much nicer than the others. If I were to get one it would be very expensive and nice, but I am not convinced I need or what it.
I did consider or not I would be freaked out my having someone else's hair on my head or not. Going to try not to think about it. Also, wondering whose hair this was and why they sold it. She told me most the hair was Indian hair. What kind of life must they have to spend years growing this hair to sell. Made me feel very lucky.
Moral of the story, appreciate your head hair, don't waste money on removing your body hair :)
oh and while I have not decided if I am going to get one...... Here are some pictures.
Brunette - really cute color... not sure about the cut - too much in my eyes
Liked the feel of the hair - WAY too blonde - would go darker, but this one could be cut to any shape.
Old lady hair... this one is synthetic and way to thin - you could see my hair underneath which meant that you would be able to see my scalp without hair. I did not like this one.
Red head - this is the same "hair" as the blonde one....
Tuesday, October 23, 2012
The upsides of cancer
While this journey royally sucks there has to be some good that is coming out of it.
I am trying to be more introspective. This blog is definitely one way of doing that.
Since I am tired, I don't have energy to talk all the time... I listen more... this is definitely good.
I feel so lucky to be surrounded by friend that make up my whole lifespan..... from my "oldest" friends to my college friends to my real job friends. It sure does make a girl feel special.
I love getting the cards and the emails from my family. It is so wonderful to know that so many people are rooting for me.
My parents are coming! I am so excited to see them. I will see them in Sept, Oct AND Nov... that has not happened in YEARS!!
My husband took time out of his busy day today and went and got a flu shot - just so I didn't get sick.
I may have lost a little weight from this as well.
I am pretty sure if I can handle the nausea and pain from this my first trimester of pregnancy is going to be a breeze.
The "flu" does not seem that bad as it only happens once - not every 2 weeks.
This will be a true test of my willpower. The willpower it will take to walk back into that chemo room to be pumped full of poisen fully knowing what I will feel like on the other side... that is willpower - thus next time I am offered chocolate cake while on a diet - there will be no need to test my willpower - it will be rock solid!!
Oh and I have decided to think of it instead of 1/8 done that I am 1/2 way done with my first of four cycles.... sounds much better to me.
I am trying to be more introspective. This blog is definitely one way of doing that.
Since I am tired, I don't have energy to talk all the time... I listen more... this is definitely good.
I feel so lucky to be surrounded by friend that make up my whole lifespan..... from my "oldest" friends to my college friends to my real job friends. It sure does make a girl feel special.
I love getting the cards and the emails from my family. It is so wonderful to know that so many people are rooting for me.
My parents are coming! I am so excited to see them. I will see them in Sept, Oct AND Nov... that has not happened in YEARS!!
My husband took time out of his busy day today and went and got a flu shot - just so I didn't get sick.
I may have lost a little weight from this as well.
I am pretty sure if I can handle the nausea and pain from this my first trimester of pregnancy is going to be a breeze.
The "flu" does not seem that bad as it only happens once - not every 2 weeks.
This will be a true test of my willpower. The willpower it will take to walk back into that chemo room to be pumped full of poisen fully knowing what I will feel like on the other side... that is willpower - thus next time I am offered chocolate cake while on a diet - there will be no need to test my willpower - it will be rock solid!!
Oh and I have decided to think of it instead of 1/8 done that I am 1/2 way done with my first of four cycles.... sounds much better to me.
Monday, October 22, 2012
Perspective and some empathy
Just home from work after my first post-chemo day back. It was an eye opening day for two reasons.
Firstly, how petty, irrelevant and unimportant are the same everyday issues that two weeks ago would have concerned me. I was never one to be overly stressed, but always concerned. I can't help but look at these same things now with a kind of sadness at how they ever used to bother me. I do have some regret that I have spent the last 13 years going to college to only worry about something that, without your health, means nothing. I love my job! I love the people I work with. The students need and desire to learn make me a better teacher. This is what I am supposed to do. However, it did strike me that for so many of us, our priorities are way out of whack. At least 5 of our 7 days a week are spent working, one recovering from the 5 days work, and one being enjoyed. I think there's a lesson in this. I also know however, that once I'm better I will probably start working harder than ever before in order to catch up on the time I've wasted sleeping. Maybe I need to take action to ensure that I don't have this option.
Secondly, it instantly struck me how much of a setback this illness was going to be work-wise. How much it already has and is going to take away from everything I've spent the last years working up to. I finally felt like I was getting somewhere, now I feel like I've been knocked back. I felt like I was just getting going on my own. Getting to teach what I wanted to teach. Getting to investigate what I find interesting. This is gutting. It's been a fight to get to where I was, an every day battle, literally. I'm not sure I'll have it in me to do the battle again when this is over. This may be a blessing in disguise, a chance to step back and really look at where I am heading. It is however the first time I felt that this illness has won, even in some small way.
After a morning of work I got to go have a wonderful experience called a pulmonary function test. Apparently one of these wonderful poisons can kill part of your lungs. So they need a baseline. I am not sure if getting a baseline on post chemo day 4 is a good idea. When the man told me to run on the treadmill, I told him I would cry. Now you all know this is NOT me. But I had to breathe like I was on one. Oh and then they lock you in a little tiny cube and tell you to breathe but take away you oxygen. That was fun. I thought I would pass out a few times. But that is done and he told me that I was not a smoker. So glad all that testing could tell you what a questionnaire could have said. But it is what it is.
Then I went and got Kyles Christmas gift - or ordered it. Another gun. Don't really know what I am buying....but he is excited. Then I did something for ME. I had a massage. She spent a half hour on my face and head. OMG I feel like a new woman. It was just what I needed. I am going to do it weekly and she gave me a great price.
Then I went and got Kyles Christmas gift - or ordered it. Another gun. Don't really know what I am buying....but he is excited. Then I did something for ME. I had a massage. She spent a half hour on my face and head. OMG I feel like a new woman. It was just what I needed. I am going to do it weekly and she gave me a great price.
On another side note, I am taking requests for hair styles I can cut into my hair before the shaving. I have had: mullet, step, mohawk and platinum blonde. I have had to reject the platinum blonde (I think this alone will make all my hair fall out, I'll do it in a wig for ya instead!) but all others will be fulfilled. oh and we are going wig shopping on Wednesday, any suggestions are welcome - I have already had the poofy 80s serial killer request.
Sunday, October 21, 2012
Chemo 1 Day 4: On the up-swing
I am definitely on the up-swing of this chemo session. I slept about 18 hours yesterday. All I did was sleep. It was pretty pathetic. I did, however, shower - which I am sure you all are glad to hear. It was that kind of tired/slight nausea where you have gotten up very early for a flight, flew around the world and all you want is your bed. You are sore from sleeping in a chair (not first class kind if sleep..... not that i would know what that is like anyway). Add in that all you have gad us pane food and you know you should eat something, but nothing really does sound edible..... That is how I felt.
Today I slept in, we had breakfast of french toast. It took me about an hour yesterday to eat my 2 eggs for breakfast. Today it only took me a total of 45 minutes to eat 1 piece of french toast and 2 sausages. Kyle is making sure that I am getting protein so that I don't just eat mac and cheese or mashed potatoes. Although those are sooooo good and easy to gum down. Last week I got to play a patient named Emma for interprofessionals day. She was older with dementia, tired and her dentures did not fit so she liked "sauce" (apple, peach, etc). I felt a lot like her. Still kinda do.
My jaw hurts something crazy!! I am not to sure about this. It is strange. My tongue bursts and my jaw feels like my wisdom teeth were taken out again. Because of all this I am a drooling machine. Like baby teething drooling. I wake myself up from the wet spot on my pillow. What the heck?? Definitely not one of the side effects I expected.
So what have we learned from this round of chemo. 1) I have awesome friends and family! Well I already knew this but this only confirmed it. 2) I don't have as much nausea as I thought. 3) I am going to be really tired and going to have to listen to my body a little more. 4) my jaw is going to hurt and i am going to feel like a 8 month old. 5) I can do this. I may not want to but it is feasible.
I feel like I am 60%. So.... If you take I was feeling 75% on Thursday. And about 30% Friday and 10% Saturday and tomorrow will be better.... Overall it is a combined of about 2.5 days of feeling like total poo.... So if I take that and multiply it by 7 more chemo treatments it is really only 2 weeks of feeling like poo..... I can do that. Math - it is my friend.
Today I slept in, we had breakfast of french toast. It took me about an hour yesterday to eat my 2 eggs for breakfast. Today it only took me a total of 45 minutes to eat 1 piece of french toast and 2 sausages. Kyle is making sure that I am getting protein so that I don't just eat mac and cheese or mashed potatoes. Although those are sooooo good and easy to gum down. Last week I got to play a patient named Emma for interprofessionals day. She was older with dementia, tired and her dentures did not fit so she liked "sauce" (apple, peach, etc). I felt a lot like her. Still kinda do.
My jaw hurts something crazy!! I am not to sure about this. It is strange. My tongue bursts and my jaw feels like my wisdom teeth were taken out again. Because of all this I am a drooling machine. Like baby teething drooling. I wake myself up from the wet spot on my pillow. What the heck?? Definitely not one of the side effects I expected.
So what have we learned from this round of chemo. 1) I have awesome friends and family! Well I already knew this but this only confirmed it. 2) I don't have as much nausea as I thought. 3) I am going to be really tired and going to have to listen to my body a little more. 4) my jaw is going to hurt and i am going to feel like a 8 month old. 5) I can do this. I may not want to but it is feasible.
I feel like I am 60%. So.... If you take I was feeling 75% on Thursday. And about 30% Friday and 10% Saturday and tomorrow will be better.... Overall it is a combined of about 2.5 days of feeling like total poo.... So if I take that and multiply it by 7 more chemo treatments it is really only 2 weeks of feeling like poo..... I can do that. Math - it is my friend.
Saturday, October 20, 2012
Chemo 1 Day 3
I feel like I have been hit by a Mac truck. My whole body hurts. Well not hurts just sore. My cousin ran a 1/2 marathon today - I bet we are in similar pain.... Great job Aaron by the way!!!
My jaw hurts which is wierd, my neck hurts where my lymphnodes are (I hope this means that the cancer is dying). My ass hurts from being in bed but I am so tired. I just keep taking naps....
there is a definite disconnect between my head and my body. My head seems to think that chips and salsa sound like a good idea... or maybe some spicy bean dip. But we all know that will not end well. I can't eat it. My tongue feels wierd and when I eat I get pains down in my jaw and down my throat. So at least I have some chicken and rice soup and some broccoli cheese soup. My doc says that I need to have protein. He said to get some Ensure and mix it with ice cream... to me that sounds like a 1000 trips to the bathroom.... but we will see how things go.
I hope I am on the mend tomorrow.... I have to work on Monday - gotta be a good professor. :) and then I have a pulmonary function test (PFT). One of the drugs (Bleomycin) can have a negative affect on your lungs, so we need a baseline.
Well that is all I have... going to go take another nap. :)
My jaw hurts which is wierd, my neck hurts where my lymphnodes are (I hope this means that the cancer is dying). My ass hurts from being in bed but I am so tired. I just keep taking naps....
there is a definite disconnect between my head and my body. My head seems to think that chips and salsa sound like a good idea... or maybe some spicy bean dip. But we all know that will not end well. I can't eat it. My tongue feels wierd and when I eat I get pains down in my jaw and down my throat. So at least I have some chicken and rice soup and some broccoli cheese soup. My doc says that I need to have protein. He said to get some Ensure and mix it with ice cream... to me that sounds like a 1000 trips to the bathroom.... but we will see how things go.
I hope I am on the mend tomorrow.... I have to work on Monday - gotta be a good professor. :) and then I have a pulmonary function test (PFT). One of the drugs (Bleomycin) can have a negative affect on your lungs, so we need a baseline.
Well that is all I have... going to go take another nap. :)
Friday, October 19, 2012
I am still working
And just if there were any question... I am still working....
Here is a press release that just came out.
Here is a press release that just came out.
Un-Kinked
Well I had surgery today... why not another surgery :) ... no big deal.
They hopefully un-kinked my port so that it actually works. I was pretty tired when I came home so I took a really long nap.
I am still feeling pretty good - I feel kinda like I have butterflies in my stomach but that is the extent of the nausea. Oh and my jaw hurts. I am a little worried that this means my jaw is going to fall off - haha just kidding. Although it would ruin my career, I am not sure it would upset Kyle too much.
So un-kinked, is this the same as un-hinged?? I don't really know. I may have become un-hinged. I did after all go out and buy a Snuggy. It is really really ugly, but great for chemo. I can take it off and they can adjust stuff, but i can still have my hands and work while staying warm. I think Kyle may divorce me if I use it at home though.
I think that I have earned my good karma for the rest of my life... and my brother has too. I mean really - really - this sucks!! I figure there is also good karma by proxy - so Kyle and Laura and my parents are good too. And while we are spreading it around... how about all the rest of you as well.
I am sitting here, kinda in pain from the surgery. They had to go back into the same incision. Man - it was just starting to heal and I could really use the arm, have range of motion and really sleep on that side again. I have to eat something though so I can take a pain pill or else THAT would make me sick. I know the chemo doesn't but the pain pills do. So Kyle made me a bagel with jam and tea. Kinda makes me feel like English Tea Time. I had a bowl of amazing broccoli-cheese soup earlier. Wow!! I could bathe in it, it was soooo good. Although that would probably not be so good for my incision, or other parts of me for that matter and well then I couldn't eat it... but you know what I mean.
Okay well my ramblings are done for today ... off to dream land again.
Oh and I just wanted to say how proud I am of my friend Elaine for successfully defending her dissertation today! I was thinking about you all day! YEAH!!!!
They hopefully un-kinked my port so that it actually works. I was pretty tired when I came home so I took a really long nap.
I am still feeling pretty good - I feel kinda like I have butterflies in my stomach but that is the extent of the nausea. Oh and my jaw hurts. I am a little worried that this means my jaw is going to fall off - haha just kidding. Although it would ruin my career, I am not sure it would upset Kyle too much.
So un-kinked, is this the same as un-hinged?? I don't really know. I may have become un-hinged. I did after all go out and buy a Snuggy. It is really really ugly, but great for chemo. I can take it off and they can adjust stuff, but i can still have my hands and work while staying warm. I think Kyle may divorce me if I use it at home though.
I think that I have earned my good karma for the rest of my life... and my brother has too. I mean really - really - this sucks!! I figure there is also good karma by proxy - so Kyle and Laura and my parents are good too. And while we are spreading it around... how about all the rest of you as well.
I am sitting here, kinda in pain from the surgery. They had to go back into the same incision. Man - it was just starting to heal and I could really use the arm, have range of motion and really sleep on that side again. I have to eat something though so I can take a pain pill or else THAT would make me sick. I know the chemo doesn't but the pain pills do. So Kyle made me a bagel with jam and tea. Kinda makes me feel like English Tea Time. I had a bowl of amazing broccoli-cheese soup earlier. Wow!! I could bathe in it, it was soooo good. Although that would probably not be so good for my incision, or other parts of me for that matter and well then I couldn't eat it... but you know what I mean.
Okay well my ramblings are done for today ... off to dream land again.
Oh and I just wanted to say how proud I am of my friend Elaine for successfully defending her dissertation today! I was thinking about you all day! YEAH!!!!
Thursday, October 18, 2012
Tomorrow.....
Another surgery tomorrow. Going to get my "hose" unkinked. Three surgeries in three weeks. Think since it is their fault they won't charge me??? Yeah right. Just get in line. Got a stack of med bills today....
Chemo 1: day 1
Didn't sleep really well. Don't really know why no real reason.
I went to work today. Probably over did it. Got a lot done: grant stuff, IRB, stuff for next semester. My short term memory is getting worse. Or maybe it was already this bad. More need to write things down. I am just really tired now. Worked 6.5 hours.
Yesterday there were many cards and dinner. Got breakfast foods today at work. Came home today to many cards, 2 packages and flowers. I cannot thank you all enough. It is amazing how much support I have. Thank you!!!
No witty comments today..... Just need to rest.
I went to work today. Probably over did it. Got a lot done: grant stuff, IRB, stuff for next semester. My short term memory is getting worse. Or maybe it was already this bad. More need to write things down. I am just really tired now. Worked 6.5 hours.
Yesterday there were many cards and dinner. Got breakfast foods today at work. Came home today to many cards, 2 packages and flowers. I cannot thank you all enough. It is amazing how much support I have. Thank you!!!
No witty comments today..... Just need to rest.
4 am update Chemo1 Day 0.5
No nausea. Dry eyes, went to use kyles eye drops, but I am eye drop insertion stupid and have to put it in my tear duct. So I decided using his was a bad idea. Had to go find some. Have to pee a lot. But am really thirsty.
On a side note. It is really freaking windy.
On a side note. It is really freaking windy.
Wednesday, October 17, 2012
Tough
I saw a guy the other day with tattoos all over his arms and neck. He was a slight, maybe forty, and with the exception of the tattoos, he looked pretty harmless. I understand it’s awfully painful to get a tattoo, and I always thought you had to be tough to get so many of those.
And to ride a Harley – maybe wearing leather and a bandana. Those things can all make a guy look tough. Sometimes a goatee can make a guy look a little ornery, and definitely a shaved head. If he’s beefy, then I’d stay away, and if he’s got beefy friends, well, I wouldn’t even say hi. And I would likely keep my head down and keep walking - yes I am a wuss.
But what a silly, stupid idea. A guy spends his mornings shaping his beard into some priggish pattern on his face and I start to shake? Another guy has enough money to buy a Harley and a two dollar bandana and that’s enough to make me cross the street in aversion?
Forget it. I’ll tell you what tough looks like.
She’s wearing a wig. It’s too big, and you can see the extra lining hanging over her forehead. Her eyebrows are penciled in with a color that doesn’t match the wig. She walks with a stuttering gait to and from the bathroom. Her clothes are too small, and cheap. A IV stand – one taller than her – is next to her chair. Three bags hang on the stand, and their tubes disappear under her brown, velour jacket. Her eyes are like hot bayonets.
She has a son sitting next to her. He nervously jerks his head up at her every time she makes a move. He stands up when she gets up to walk to the bathroom, and although he’d like to help, there’s nothing he can do. He listens attentively when the nurse talks, but he doesn’t really understand everything that’s going on. Like, what is it like to lose your stomach lining? Why is there a rash on his mother’s chest? What does she feel when her friends ask her how she’s feeling?
His mother comforts him when she returns from the bathroom. She puts her hand on his shoulder, says, “I’m ok” and “Sit down, it’s ok.” She has the nurse get her son a blanket.
Now THAT is tough. She doesn’t have a Harley, or a bandana. (or maybe she does, but she doesn't ride it and she is not wearing one) She’s maybe 5′ 2″, and she couldn’t beat anybody up. She’s dying, like everybody else, but the difference is that she knows it. Maybe she knows when. Maybe not.
But she doesn’t give up being a mother. Or a woman. Or a person. That’s tough.
I’m not that tough, maybe. But I’m tougher than I was before all of this. But I am not that tough.
But I have good days, and I have hours that go by without a thought about chemo. Some people in this mess don’t have that luxury. I’m lucky.
And to ride a Harley – maybe wearing leather and a bandana. Those things can all make a guy look tough. Sometimes a goatee can make a guy look a little ornery, and definitely a shaved head. If he’s beefy, then I’d stay away, and if he’s got beefy friends, well, I wouldn’t even say hi. And I would likely keep my head down and keep walking - yes I am a wuss.
But what a silly, stupid idea. A guy spends his mornings shaping his beard into some priggish pattern on his face and I start to shake? Another guy has enough money to buy a Harley and a two dollar bandana and that’s enough to make me cross the street in aversion?
Forget it. I’ll tell you what tough looks like.
She’s wearing a wig. It’s too big, and you can see the extra lining hanging over her forehead. Her eyebrows are penciled in with a color that doesn’t match the wig. She walks with a stuttering gait to and from the bathroom. Her clothes are too small, and cheap. A IV stand – one taller than her – is next to her chair. Three bags hang on the stand, and their tubes disappear under her brown, velour jacket. Her eyes are like hot bayonets.
She has a son sitting next to her. He nervously jerks his head up at her every time she makes a move. He stands up when she gets up to walk to the bathroom, and although he’d like to help, there’s nothing he can do. He listens attentively when the nurse talks, but he doesn’t really understand everything that’s going on. Like, what is it like to lose your stomach lining? Why is there a rash on his mother’s chest? What does she feel when her friends ask her how she’s feeling?
His mother comforts him when she returns from the bathroom. She puts her hand on his shoulder, says, “I’m ok” and “Sit down, it’s ok.” She has the nurse get her son a blanket.
Now THAT is tough. She doesn’t have a Harley, or a bandana. (or maybe she does, but she doesn't ride it and she is not wearing one) She’s maybe 5′ 2″, and she couldn’t beat anybody up. She’s dying, like everybody else, but the difference is that she knows it. Maybe she knows when. Maybe not.
But she doesn’t give up being a mother. Or a woman. Or a person. That’s tough.
I’m not that tough, maybe. But I’m tougher than I was before all of this. But I am not that tough.
But I have good days, and I have hours that go by without a thought about chemo. Some people in this mess don’t have that luxury. I’m lucky.
Round 1: Lindsey - 1 Cancer - 0
After I gave a midterm, we went to chemo. I met with the doctor and he showed me my PET scan (animal pictures according to Kyle). It is exactly what I thought. Mostly on the right. Above the collar bone in my chest down the center mostly on the right but some on the left. Definitely stage 2.
They hook up my port and it doesn't work. It won't flush. So they send me to X-ray. It saw my hose is twisted. So that will need to be fixed.
They start an IV. I get my drugs. I get all nausea stuff. I am not allergic to any of them and I feel fine. They pump me full of chemicals and we go home. Oh and 1/2 way through I send Klein out for a turkey sandwich I was hungry. One home, I had what I Thought was my first side effect. My stomach hurt and I was woozy..... But I think it was the Mexican food from last night. It was my typical stomach from that so that is good. Over all I feel good; I don't feel like I just got chemo. I will lay low for a few days. Lets see how it goes. Definitely not going to push it too hard.
Love you all and appreciate the emails, cards, calls and texts. I can feel the thoughts and prayers working.
Oh and I graded the midterm while doing chemo.... The students did well..... Overall a good day.
They hook up my port and it doesn't work. It won't flush. So they send me to X-ray. It saw my hose is twisted. So that will need to be fixed.
They start an IV. I get my drugs. I get all nausea stuff. I am not allergic to any of them and I feel fine. They pump me full of chemicals and we go home. Oh and 1/2 way through I send Klein out for a turkey sandwich I was hungry. One home, I had what I Thought was my first side effect. My stomach hurt and I was woozy..... But I think it was the Mexican food from last night. It was my typical stomach from that so that is good. Over all I feel good; I don't feel like I just got chemo. I will lay low for a few days. Lets see how it goes. Definitely not going to push it too hard.
Love you all and appreciate the emails, cards, calls and texts. I can feel the thoughts and prayers working.
Oh and I graded the midterm while doing chemo.... The students did well..... Overall a good day.
Tuesday, October 16, 2012
Chemo eve.....
Twas the night before chemo and all through the house not a creature was stirring not even a mouse. The IVs were hung by the nurses with care, in hopes that the tumors would not longer be there... I wish it was Christmas, it would be fun if it were
Christmas.
You know the Sunday night feeling? The one when you remembered you didn't have your homework done and were going to have to face school the next day and the fun of the weekend was over for another whole week. Or the night before an exam. Or even now at this age, just knowing you have a particularly tough week ahead. The Sunday night dread. I thought I had experienced dread, Sunday night or otherwise. I hadn't. This is dread. Dreading poison being pumped through my veins causing Armageddon on my entire body. Dreading the fact that I will spend the next 3.5 months marinading in a stew of toxic waste designed to kill human cells. Knowing it's coming and that there's no way out of it is a feeling incomparable to anything I've felt before.
Kyle's feeling by the way is who needs chemo..... Go swim in the Southern California ocean....that is toxic enough to kill anything.
Something tells me that in my 31 years, I have only experienced the PG version of a whole range of emotions. Cancer will give me the chance to really feel them. I can now say I have felt dread. Real dread. Sunday nights will be a breeze 6 months from now. There's one more thing to add to the 'upsides of cancer' list. Maybe it will help you all feel a little better about your Sunday night dread.
So how DO I feel about starting chemo tomorrow? Emmmmm, undecided. I'm trying not to think about it. The more I think the more horrible it seems. The best thing to do is try to forget the poison, the body devastation, and alter my mindset to think of it as medicine. Poisoning medicine. NO. JUST MEDICINE. Like a really bad antibiotic. It'll be fine. It'll be fine. It'll be fine. No anticipatory nausea for this girl.....
I guess I wish this hadn’t happened, but there’s nothing worthwhile in that thought. It did happen. My body malfunctioned and tried to kill itself. It attempted to commit suicide without first consulting me about it. What a stupid thing to do. I hope it doesn’t do something idiotic and short-sighted like that ever again. Mind over matter.... my brother is such an amazing example of this! He is my inspiration! If he can go through the pain so can I... Ryan you amaze me!!!
Chemo positives: It will force me to take a little time to myself - and maybe be a little more introspective. I will lose the fear of the unknown and finally know how it feels. I will be one step closer to the end. OK that's all I got. It's enough though right? LETS GET THIS GOING!!!
You know the Sunday night feeling? The one when you remembered you didn't have your homework done and were going to have to face school the next day and the fun of the weekend was over for another whole week. Or the night before an exam. Or even now at this age, just knowing you have a particularly tough week ahead. The Sunday night dread. I thought I had experienced dread, Sunday night or otherwise. I hadn't. This is dread. Dreading poison being pumped through my veins causing Armageddon on my entire body. Dreading the fact that I will spend the next 3.5 months marinading in a stew of toxic waste designed to kill human cells. Knowing it's coming and that there's no way out of it is a feeling incomparable to anything I've felt before.
Kyle's feeling by the way is who needs chemo..... Go swim in the Southern California ocean....that is toxic enough to kill anything.
Something tells me that in my 31 years, I have only experienced the PG version of a whole range of emotions. Cancer will give me the chance to really feel them. I can now say I have felt dread. Real dread. Sunday nights will be a breeze 6 months from now. There's one more thing to add to the 'upsides of cancer' list. Maybe it will help you all feel a little better about your Sunday night dread.
So how DO I feel about starting chemo tomorrow? Emmmmm, undecided. I'm trying not to think about it. The more I think the more horrible it seems. The best thing to do is try to forget the poison, the body devastation, and alter my mindset to think of it as medicine. Poisoning medicine. NO. JUST MEDICINE. Like a really bad antibiotic. It'll be fine. It'll be fine. It'll be fine. No anticipatory nausea for this girl.....
I guess I wish this hadn’t happened, but there’s nothing worthwhile in that thought. It did happen. My body malfunctioned and tried to kill itself. It attempted to commit suicide without first consulting me about it. What a stupid thing to do. I hope it doesn’t do something idiotic and short-sighted like that ever again. Mind over matter.... my brother is such an amazing example of this! He is my inspiration! If he can go through the pain so can I... Ryan you amaze me!!!
Chemo positives: It will force me to take a little time to myself - and maybe be a little more introspective. I will lose the fear of the unknown and finally know how it feels. I will be one step closer to the end. OK that's all I got. It's enough though right? LETS GET THIS GOING!!!
Monday, October 15, 2012
The cost of cancer ...
We received our first bill - it was for $4500 for the 2 labs that were ordered. This is NOT the pathology, the 2 surgeries (biopsy and port placement) or the 5 doctors visits (ENT, surgeon x3, oncologist). Well we will chalk that one up to them not having our insurance on file - lets see what the next one says.
I was looking into our health insurance... luckily we have it. It looks like each round of chemo will cost $50,000. This is a rather conservative estimate as well. So with 4 rounds of chemo is $200,000. Plus the two surgeries and another one to remove the port. Plus all the lab work and doctors visits. We are looking at a $350,000 adventure. Wow. I could buy college educations for my kids or a really nice house. Wow.
Well there are some miracles of modern medicine. I would be dead if it weren't for this. Three times probably - when I got sick in college, when I broke my ankle and now.... But really, what would we do without insurance. My family would be poor. I don't even know what we would do. Oh and I had a person in the waiting room today at the doctor tell me that Viagra was covered by his health insurance but not his hearing aids....
I was looking into our health insurance... luckily we have it. It looks like each round of chemo will cost $50,000. This is a rather conservative estimate as well. So with 4 rounds of chemo is $200,000. Plus the two surgeries and another one to remove the port. Plus all the lab work and doctors visits. We are looking at a $350,000 adventure. Wow. I could buy college educations for my kids or a really nice house. Wow.
Well there are some miracles of modern medicine. I would be dead if it weren't for this. Three times probably - when I got sick in college, when I broke my ankle and now.... But really, what would we do without insurance. My family would be poor. I don't even know what we would do. Oh and I had a person in the waiting room today at the doctor tell me that Viagra was covered by his health insurance but not his hearing aids....
Sunday, October 14, 2012
Shopping list for chemo week...
What do you buy at the store when everyone has told you - don't eat the things you like before chemo...
So should I buy liver? sauerkraut? lima beans? I am not quite sure how to take this....
I have also heard have sour things to suck on because of the flavor of the chemo in your mouth... but not things that you want to be able to enjoy later.... So does this mean that I buy grapefruit, peach jolly rancher, what were those sour candies we used to eat as kids??
Really - this is the most awful part of this... what will make you sick, what won't
Some say I will not want to eat -- but they put you on steriods so you want to ....
Some say it causes diahrea some say constipation - so I get OTC for both??
So I guess it is all wait and see... wait to see what will make me sick and what won't. Or maybe i won't be sick at all -- and maybe I won't lose my hair ... and then in January it will all be over. Can we just fast-forward to that point
So should I buy liver? sauerkraut? lima beans? I am not quite sure how to take this....
I have also heard have sour things to suck on because of the flavor of the chemo in your mouth... but not things that you want to be able to enjoy later.... So does this mean that I buy grapefruit, peach jolly rancher, what were those sour candies we used to eat as kids??
Really - this is the most awful part of this... what will make you sick, what won't
Some say I will not want to eat -- but they put you on steriods so you want to ....
Some say it causes diahrea some say constipation - so I get OTC for both??
So I guess it is all wait and see... wait to see what will make me sick and what won't. Or maybe i won't be sick at all -- and maybe I won't lose my hair ... and then in January it will all be over. Can we just fast-forward to that point
Random thoughts of the weekend.....
I am three days out from chemo. Yes it preoccupies some of my thoughts, but not as much I would have thought. I have some anticipation, but I am not as scared as I thought I would be. I thought I would be having melt-downs.
I did have one yesterday randomly when Kyle asked if I was okay? He meant about getting up to get himself a drink and he wanted to know if I wanted one. I, for some reason, started crying and told him "no". I am not sure what came over me. It was sudden - and then a very snotty minute later, I was fine. He is so wonderful and supportive. He asked me what I needed - what I really need is to get this out of me -- so back to the fighting mode I go.
I am writing the mid-term for my class. I was reading back through my sides (so as to not ask questions of material that I did not cover in class) and there is no difference in my teaching pre-diagnosis and post-diagnosis. Well - duh I know... but it started me thinking.
I guess previous to this diagnosis I would have thought that a diagnosis of cancer would be life changing. That all life would stop and focus on the "fight" of cancer. While it has been a "bump in the road" it is not as life changing as I thought it would be. Should it be? We are carrying on with life, living as usual and just having to work our life around the treatments and the side effects and the doctors visits. Speaking of - do I need a primary care? hmmm....
So this leads me to the philosophical questions that are part of my Keogh DNA. What is life?
Did you know that chemo was originally synthesized from mustard gas. After this form of chemical warfare was declared illegal, a large amount of it remained in storage. Since it was too toxic for normal disposal methods, our government provided grants to research groups for pharmaceutical studies. In the early 1940’s, mustard gas was stabilized by combining it with nitrogen to make it into a water and alcohol-soluble liquid. When it was discovered that it depressed bone marrow function, it was tested on a mouse with lymphoma. The tumor showed regression and the rest is history.
It kills cells that are rapidly dividing. So those would be cells like cancer (yeah)!! But those would also be cells like hair follicles (boo). But Kyle asks me the other day, what about your stomach lining? I am not too sure about this... more research is needed. Is this why you get the
Also one woman suggested shaving my pubic hair because those "fall out all over the house". Really... wear some pants.... anyway - on that note.... on to finish writing the midterm.
I did have one yesterday randomly when Kyle asked if I was okay? He meant about getting up to get himself a drink and he wanted to know if I wanted one. I, for some reason, started crying and told him "no". I am not sure what came over me. It was sudden - and then a very snotty minute later, I was fine. He is so wonderful and supportive. He asked me what I needed - what I really need is to get this out of me -- so back to the fighting mode I go.
I am writing the mid-term for my class. I was reading back through my sides (so as to not ask questions of material that I did not cover in class) and there is no difference in my teaching pre-diagnosis and post-diagnosis. Well - duh I know... but it started me thinking.
I guess previous to this diagnosis I would have thought that a diagnosis of cancer would be life changing. That all life would stop and focus on the "fight" of cancer. While it has been a "bump in the road" it is not as life changing as I thought it would be. Should it be? We are carrying on with life, living as usual and just having to work our life around the treatments and the side effects and the doctors visits. Speaking of - do I need a primary care? hmmm....
So this leads me to the philosophical questions that are part of my Keogh DNA. What is life?
I guess life is a very difficult word to define. So the first thing I do is go to the trusty Websters. Do you know I still have my dictionary that I won as being an Idaho Top Schoar? I have toted that round the country with me - not really sure why - but it sure came in handy at this point. Well sort of... I guess difining lifeis so difficult, the dictionary has over thirty definitions. it's a word
that has essentially transcended language, and is only defined through our own
experiences. So what does this mean for me... I am taking this to mean that because I am not letting cancer be my life - it is not. Or is this really just denial?
Our unique definition of life is the most honest reflection of how we live. One thing I've learned while looking at the chemo treatment room (not actually processing that I have cancer) is that life is not an amount of time, and we are powerless in determining how long we live. While it's a scary feeling to be out of control, I've learned to focus on the one thing we can control...the way we live.
So everyone can breathe a sigh of relief - I am not really going crazy. I am not going to mope around and feel sorry for myself. I really don't think of myself as a cancer patient. I am not. I am only someone who has to fight an awful disease. I am relating this to just a really bad anti-biotic. It has only a few times crossed my mind that people have died from this. And then my reality kicks me saying -- you have so much to do in life - that will not be you!! So I stay away from those blogs, I stay away from those thoughts. It makes writing my midterm seem appealing - well to me, maybe not for the students.
Our unique definition of life is the most honest reflection of how we live. One thing I've learned while looking at the chemo treatment room (not actually processing that I have cancer) is that life is not an amount of time, and we are powerless in determining how long we live. While it's a scary feeling to be out of control, I've learned to focus on the one thing we can control...the way we live.
So everyone can breathe a sigh of relief - I am not really going crazy. I am not going to mope around and feel sorry for myself. I really don't think of myself as a cancer patient. I am not. I am only someone who has to fight an awful disease. I am relating this to just a really bad anti-biotic. It has only a few times crossed my mind that people have died from this. And then my reality kicks me saying -- you have so much to do in life - that will not be you!! So I stay away from those blogs, I stay away from those thoughts. It makes writing my midterm seem appealing - well to me, maybe not for the students.
I read somewhere that:
cancer can take years from life...it cannot take life from years, unless you let it.
cancer can take years from life...it cannot take life from years, unless you let it.
One more random thought...
So the purpose of chemo is to kill the cancer, right? But what does it really do? Did you know that chemo was originally synthesized from mustard gas. After this form of chemical warfare was declared illegal, a large amount of it remained in storage. Since it was too toxic for normal disposal methods, our government provided grants to research groups for pharmaceutical studies. In the early 1940’s, mustard gas was stabilized by combining it with nitrogen to make it into a water and alcohol-soluble liquid. When it was discovered that it depressed bone marrow function, it was tested on a mouse with lymphoma. The tumor showed regression and the rest is history.
It kills cells that are rapidly dividing. So those would be cells like cancer (yeah)!! But those would also be cells like hair follicles (boo). But Kyle asks me the other day, what about your stomach lining? I am not too sure about this... more research is needed. Is this why you get the
Also one woman suggested shaving my pubic hair because those "fall out all over the house". Really... wear some pants.... anyway - on that note.... on to finish writing the midterm.
Friday, October 12, 2012
Hair for reference
For reference, this is the last time I had short hair.... and I was totally rockin' the jean vest!!
Thursday, October 11, 2012
Hair
So I had to use all the courage I had to cut my hair. I did not want to do it. It was like cutting my hair would make it real. I cried in the salon... I am sure the old lady dying her hair blue was thinking I was crazy - seriously she had blue hair.
I was able to donate 10 inches to Locks of Love. At least something good will come out of this.
So a before picture and a funny one...
And then my short hair. I am sure it will look better with some make-up on - I cried it off at the salon. It is such a change. I am not sure if I like it yet... but then again, it will not last long anyway.
Thanks to Sunny for making me laugh, taking pictures and generally helping me get through this week!
I was able to donate 10 inches to Locks of Love. At least something good will come out of this.
So a before picture and a funny one...
And then my short hair. I am sure it will look better with some make-up on - I cried it off at the salon. It is such a change. I am not sure if I like it yet... but then again, it will not last long anyway.
Thanks to Sunny for making me laugh, taking pictures and generally helping me get through this week!
Picketing at the clinic
My nurses and many others have said how great it was that I had such a supportive family, friends and colleagues during all this. That is definitely true, and I understand what they mean. But I couldn’t help but think, are there families out there that are not supportive? Are there families out there that say, “Now honey, you know I love you, but I just don’t support your decision to have cancer.” Or maybe, "I don't really believe in your choice to remove this beautiful growth from your body."
Or maybe it’s worse, maybe there’s a whole group of Tumor Rights activists out there that have bumper stickers and t-shirts that say things like “Metastasis Is a Right,” or “Tumors Have Feelings Too,” “Chemotherapy is Murder,” etc.
So this leads to my dream last night. I want to preface this by saying that I support a woman's right to choose what to or not to do to their body. I dreamt that when I was heading into the Cancer Clinic for chemotherapy there was a big crowd of Pro-Tumor protesters with signs and megaphones, chanting that I was a murderer.
Wednesday, October 10, 2012
Hair loss and Nighttime ceiling staring
So to decrease my hair loss trauma, I am cutting my hair.
I know that I may not lose my hair, but I think it may be more traumatic for me to lose my long hair. And the doc said that I will; so I think I will go for the Meg Ryan hairdo - short and messy. Or maybe I will try one like my moms. I love her new haircut. And you know, if I don't like, it I will only have it for a few weeks before it all comes out. I am going to go bald and I will get a wig. If I were at the VA still I would match with Dave and Kevin - maybe then I would actually be the doctor and not the tech.
What if, when, why, how, what if, when, why, how..... They said chemo would cause insomnia but can someone please tell my brain that chemo hasn't started yet? The little mice working the controls in my brain seem to have taken speed, I can't shut down. I'm so tired! It is like my dissertation all over again! I have tried going through the alphabet listing a boys name for each letter then a girls name for each letter helps (like vestibular testing to distract myself). Until I get to girls letter Q - I can never think of one and then it's back to what if, when, why, how. If someone can think of a female name beginning with Q please pass it on, you may just save my life. For the moment I'll continue to skip it.
For now it is also lists of more lists. The things I need to do before chemo starts, like I needed to talk to the dentist. Did you know to should not have your teeth cleaned while on chem? I need to have an audio with HF and OAEs. Then I have the lists of things I need to do on my pre-chemo days when my mind is good and I am on my A-game (like finish this chapter) and then things that can be done on my down days. I now have these two columns on my list making. I am not sure what else I can do.
My final thought is from my best friend, Brandy. I kept saying that I need to know more so I can have more control. But she told me that I have no control over this and she is right. I can now say that knowledge is power, but it is not control.
I know that I may not lose my hair, but I think it may be more traumatic for me to lose my long hair. And the doc said that I will; so I think I will go for the Meg Ryan hairdo - short and messy. Or maybe I will try one like my moms. I love her new haircut. And you know, if I don't like, it I will only have it for a few weeks before it all comes out. I am going to go bald and I will get a wig. If I were at the VA still I would match with Dave and Kevin - maybe then I would actually be the doctor and not the tech.
What if, when, why, how, what if, when, why, how..... They said chemo would cause insomnia but can someone please tell my brain that chemo hasn't started yet? The little mice working the controls in my brain seem to have taken speed, I can't shut down. I'm so tired! It is like my dissertation all over again! I have tried going through the alphabet listing a boys name for each letter then a girls name for each letter helps (like vestibular testing to distract myself). Until I get to girls letter Q - I can never think of one and then it's back to what if, when, why, how. If someone can think of a female name beginning with Q please pass it on, you may just save my life. For the moment I'll continue to skip it.
For now it is also lists of more lists. The things I need to do before chemo starts, like I needed to talk to the dentist. Did you know to should not have your teeth cleaned while on chem? I need to have an audio with HF and OAEs. Then I have the lists of things I need to do on my pre-chemo days when my mind is good and I am on my A-game (like finish this chapter) and then things that can be done on my down days. I now have these two columns on my list making. I am not sure what else I can do.
My final thought is from my best friend, Brandy. I kept saying that I need to know more so I can have more control. But she told me that I have no control over this and she is right. I can now say that knowledge is power, but it is not control.
Tuesday, October 9, 2012
PET part 2
Kyle asked me if I got to see my animal pictures yet... hahah... get it ... PET scan.
for those of you who wonder what a PET scanner on a semi looks like... here it is
for those of you who wonder what a PET scanner on a semi looks like... here it is
How do I feel?
Firstly, WOW.Thank you all so much for the messages, emails, calls, thoughts, prayer lists, and kind wishes. If I sat here for the next week, I wouldn't be able to respond to each one. Please know that I read, appreciated, and smiled over the comments, texts messages, cards and emails. You are all amazing.
Everyone keeps asking how it feels, not the physical effects, the psychological effects. I think I tend to be a positive person, I see how situations could be worse, I am grateful for the small mercies. I never took any experience I had for granted. There is purpose in every experience good and bad. I will not deny though that the last month has been a roller coaster.
A few night ago, we decided that we are not going to do the regular travel for Christmas with the family. It's like normal life, fun life, has been put on hold and replaced with cancer life. My weeks used to revolve around our weekend adventures, now they revolve around chemo Wednesdays. This is a strange feeling, like I'm gone and been replaced by an interim version of me who will finish off 2012 and start 2013 for me. I don't like this feeling. Anyway, I'm not going to dwell on it. Next year, when it is all over, we are going traveling again. Kyle is already planning the remission vacation.
I, in some ways, still have that teenage invincibility. I never have considered that I would die young. I won't do stupid things to put my life in danger (and those of you who know i had a hard time cliff diving will find this funny), but I felt that in some ways I am invincible. But now, there are moments of sheer panic. When for a split seconds it hits you, I could die from this. I wont. I know I wont. But people do. However, more recover. When I hit panic I go into the logical mode that so many of you know in me - this has, since day 1, been explained to me as 'the one to get'. The 'nicest cancer' - 95% chance of full recovery in 6 months. After that, chances are it wont come back. I like those odds. Panic over.
All along, fear of the unknown has been the biggest stress factor. What could it be, what will the biopsy feel like and how big will my scar be, what will the bone marrow biopsy feel like (I shudder when I remember!!) , what will my treatment be, what are my chances. Once these things pass I forget them, onto the next. Now it's how will I react to Chemo. Some people carry on a near normal life - continuing to work and just sleeping more. Some people are knocked down instantly. My chemo is 3.5 months long. The effects of chemo on the body are cumulative, each time a little worse than before. Luckily I "hit" it where the worst of it will be during a break from school. But I know I need to start strong! Once I get going, that fear will be gone and I can go back to the hair loss fear!
I don't feel like I thought I would feel, most days I don't feel unlucky. I feel that 1 in 3 of us are getting cancer, I got mine early when I'm strong enough to fight. I am also one of those whose cancer does not cause pain. But I also have good friends and family who told me to go to the doctor when I found a lump. Without going to the doctor, and without treatment I would now have a much shorter lifespan and I wouldn't know it. I also got 'the nice cancer'. I also got it after my insurance went active. While it will be a strain on our finances, we will not have to pay all of the costs of the treatment which could have really put us in a bad financial situation. None of this is unlucky, its really really lucky. And the way I see it we are all getting something, some illness, some hardship - nobody's life is plain sailing. If this is all the hardship I get then bring it on, I'll get it out of the way now :)
Last night, with the help of some Ativan, I had the first full, restful, instant nights sleep I've had in 2.5 weeks. I am not as scared. When I woke up in the middle of the night I was able to go right back to sleep. How is this possible? This morning it hit me. This is purely a psychological battle. The chemo will kill the cancer, the rest is in my head. I have a plan, I am working towards it, I am calm. Amazing. The mind is a powerful tool and is going to be my best friend or worst enemy. I need to make sure its the former.
Results and port
Well I got some good news today. The results of my bone marrow biopsy came in clean. Yeah!!! This means I don't need to have a bone marrow transplant and the cancer is not there. I know all of you are excited to hear this so you don't need to be tested to see if you are a match :)
Also, my doc called me to tell me that although it has not been read by a radiologist and his resolution on his computer is not as good, but it looks like the cancer is all above my diaphragm. This means that it looks like it is stage 2. Yeah!!
Today I had a port put in. They had to stick me 5 times to start an IV. And THAT is why I had the port placed. The port is under my skin in my chest. It is an instant access to my veins. It was an easy procedure and will be worth it in the long run.
Also, my doc called me to tell me that although it has not been read by a radiologist and his resolution on his computer is not as good, but it looks like the cancer is all above my diaphragm. This means that it looks like it is stage 2. Yeah!!
Today I had a port put in. They had to stick me 5 times to start an IV. And THAT is why I had the port placed. The port is under my skin in my chest. It is an instant access to my veins. It was an easy procedure and will be worth it in the long run.
Monday, October 8, 2012
PET scan
We are in Omaha and going to drive home toady with Sunny it tow. Going to get my PET scan so we can stage this thing.
PET scan is such a funny name. I know it is an acronym, but still. Oh and the machine comes in on a semi. I get to be "petted" in the parking lot. Strange images of a petting line come to mind. They told me to wear sweats - um okay that is easy. Sunny will come with me; Kyle has to study and might as well give him a reprieve.
Oh and speaking of stages. Still puts images of the Tour de France in my head. I wonder if this cancer is a time trial or a mountain phase??
Overall, I am in good spirits. I am so glad, and lucky, to have supportive friends and family. I feel like the is nothing wrong. I guess I am not sure what I thought someone with cancer would look like, but this is not it. I am feeling good, healthy and 100% normal. I guess that is a good thing.
PET scan is such a funny name. I know it is an acronym, but still. Oh and the machine comes in on a semi. I get to be "petted" in the parking lot. Strange images of a petting line come to mind. They told me to wear sweats - um okay that is easy. Sunny will come with me; Kyle has to study and might as well give him a reprieve.
Oh and speaking of stages. Still puts images of the Tour de France in my head. I wonder if this cancer is a time trial or a mountain phase??
Overall, I am in good spirits. I am so glad, and lucky, to have supportive friends and family. I feel like the is nothing wrong. I guess I am not sure what I thought someone with cancer would look like, but this is not it. I am feeling good, healthy and 100% normal. I guess that is a good thing.
Saturday, October 6, 2012
Onward and, well... southward
When I woke up this morning, for the first time in over a week, the big "c" word was not my first thought... My first thought was actually - it is cold in here. Hello winter!! Which I guess is a "c" word, but not the big one.
Second thought was - oh I need to get up and make breakfast so we can go to Omaha.
My third thought was - I have cancer. So I guess this an improvement.
Kyle said to me early last week that this is going to consume some of our days and it is something that we are both going to think about every day but it is not going to be our every day. I am sticking to that. He is amazing and so right! I need to be me and not the cancer girl.
It is still the little things that remind me that I have cancer - stupid things - like I was making coffee and counted the Keurig cups we had. I thought oh good, we kept the non-flavored coffee for when my parents come at Thanksgiving. Oh wait, they are coming early as well so do we need to get more. Oh they are coming because I have cancer. I don't want to sound ungrateful that they are coming - I am both excited and very very happy - but it is those kinds of things that I am trying to get away from associating with this awful disease. It is a work in progress....
So we are going to Omaha - to the Zoo, Trader Joes, Costco and, of course, Cabellas and Bass Pro Shop. What trip would be complete without a trip to those two places ;) We are picking up my friend Sunny who will be coming up here for a week. I am excited to have her here!!
Trying to find some normalcy in my new normal.
Oh and this morning during breakfast I read an article on hearing aids and NOT cancer!!! Yes!!!
Second thought was - oh I need to get up and make breakfast so we can go to Omaha.
My third thought was - I have cancer. So I guess this an improvement.
Kyle said to me early last week that this is going to consume some of our days and it is something that we are both going to think about every day but it is not going to be our every day. I am sticking to that. He is amazing and so right! I need to be me and not the cancer girl.
It is still the little things that remind me that I have cancer - stupid things - like I was making coffee and counted the Keurig cups we had. I thought oh good, we kept the non-flavored coffee for when my parents come at Thanksgiving. Oh wait, they are coming early as well so do we need to get more. Oh they are coming because I have cancer. I don't want to sound ungrateful that they are coming - I am both excited and very very happy - but it is those kinds of things that I am trying to get away from associating with this awful disease. It is a work in progress....
So we are going to Omaha - to the Zoo, Trader Joes, Costco and, of course, Cabellas and Bass Pro Shop. What trip would be complete without a trip to those two places ;) We are picking up my friend Sunny who will be coming up here for a week. I am excited to have her here!!
Trying to find some normalcy in my new normal.
Oh and this morning during breakfast I read an article on hearing aids and NOT cancer!!! Yes!!!
Friday, October 5, 2012
Stats & "the plan"
A few stats:
This is a CURABLE cancer
It has a 97% cure rate
There is a TON of research on this and it is a pretty prescribed/regimented treatment plan.
It has a 10% infertility rate but it is less in women.
The plan is as follows:
4 rounds of chemo - 8 treatments - one every other week.
At this point, radiation is not needed :)
I start on the 17th of October. Let the countdown begin!!
I think I am going to chop off my hair and donate it.
This is a CURABLE cancer
It has a 97% cure rate
There is a TON of research on this and it is a pretty prescribed/regimented treatment plan.
It has a 10% infertility rate but it is less in women.
The plan is as follows:
4 rounds of chemo - 8 treatments - one every other week.
At this point, radiation is not needed :)
I start on the 17th of October. Let the countdown begin!!
I think I am going to chop off my hair and donate it.
The Road to D-Day
On Sunday, September 23, my insurance went active.
This is exactly 1 month and 1 day after I started my dream job.
I was lying in bed watching Hulu and I felt a strange lump above my right collarbone. I told Kyle I pulled something and needed a massage. Which, by the way, he blew me off. :) so Monday I went to work and asked all of the SLPs to feel it, including the child language people hahaha. So I had a professional massage - as a side note Laura was great - no help and she sad it was not muscular. So Tuesday, Jess tries to get me to go to the doctor; she said her g-ma told her to get all lumps checked out. :)
Wednesday, September 26 - I teach and go to the ENT. Dr Abbott is awesome and I give him credit (and Jess) for catching this early. He puts me on an antibiotic and orders a CT scan.
Thursday, September 27 - I see patients and after clinic I see I missed a call from the clinic. I call and Dr Abbott's nurse tells me to call him on his cell - uh oh. He says that he spoke with the radiologist and the general surgeon and they all agree that it needs to come out.
Friday, September 28 - I go in and get ready for surgery. I thought it was a clogged duct. Jess came with me as Kyle was in class and it was not "a big deal". That is when, 10 minutes before surgery, they drop the bomb on me... We are doing this because we think you have cancer. My eyes start running. Not really crying but shocked crying. I call my mom, my dad is at work, Kyle is in class so I only tell my mom before. Go under. I wake up. They tell me they think it is Stage 2 as it goes down my chest and up my neck. I go home.
Saturday and Sunday - I stress and cry and investigate. I feel so all over the place. Pub med is both my friend and my enemy
Monday, October 1 - we go to the doctor and they tell us it is not cancer but try don't know what it is so they send it to a better place.
Tuesday, October 2 - my brother has surgery. He is out and okay. The Dr calls and says that they are doing a 180 from yesterday. It IS Hodgkin's lymphoma.
Wednesday, October 3 - We go to the oncologist. I love him. Dr. Farver is amazing. I cried in the bathroom before going in. This is not where I expected to be at this time in my life. I expected to be going to the obsetrician, not the oncologist. I guess life is funny that way. I did not cry once I went in the room. We talk statisics. We talk treatment plan. We talk and laugh. I have a bone marrow biopsy. This includes a few choice words and a IV of great drugs. Kyle and I drive home with a plan and a prescription for Ativan.
This plan, while it does not make me happy to be doing, decreases the anxiety associated with the unknown. This is my new normal for the next few months.
I was lying in bed watching Hulu and I felt a strange lump above my right collarbone. I told Kyle I pulled something and needed a massage. Which, by the way, he blew me off. :) so Monday I went to work and asked all of the SLPs to feel it, including the child language people hahaha. So I had a professional massage - as a side note Laura was great - no help and she sad it was not muscular. So Tuesday, Jess tries to get me to go to the doctor; she said her g-ma told her to get all lumps checked out. :)
Wednesday, September 26 - I teach and go to the ENT. Dr Abbott is awesome and I give him credit (and Jess) for catching this early. He puts me on an antibiotic and orders a CT scan.
Thursday, September 27 - I see patients and after clinic I see I missed a call from the clinic. I call and Dr Abbott's nurse tells me to call him on his cell - uh oh. He says that he spoke with the radiologist and the general surgeon and they all agree that it needs to come out.
Friday, September 28 - I go in and get ready for surgery. I thought it was a clogged duct. Jess came with me as Kyle was in class and it was not "a big deal". That is when, 10 minutes before surgery, they drop the bomb on me... We are doing this because we think you have cancer. My eyes start running. Not really crying but shocked crying. I call my mom, my dad is at work, Kyle is in class so I only tell my mom before. Go under. I wake up. They tell me they think it is Stage 2 as it goes down my chest and up my neck. I go home.
Saturday and Sunday - I stress and cry and investigate. I feel so all over the place. Pub med is both my friend and my enemy
Monday, October 1 - we go to the doctor and they tell us it is not cancer but try don't know what it is so they send it to a better place.
Tuesday, October 2 - my brother has surgery. He is out and okay. The Dr calls and says that they are doing a 180 from yesterday. It IS Hodgkin's lymphoma.
Wednesday, October 3 - We go to the oncologist. I love him. Dr. Farver is amazing. I cried in the bathroom before going in. This is not where I expected to be at this time in my life. I expected to be going to the obsetrician, not the oncologist. I guess life is funny that way. I did not cry once I went in the room. We talk statisics. We talk treatment plan. We talk and laugh. I have a bone marrow biopsy. This includes a few choice words and a IV of great drugs. Kyle and I drive home with a plan and a prescription for Ativan.
This plan, while it does not make me happy to be doing, decreases the anxiety associated with the unknown. This is my new normal for the next few months.
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