Two nights ago I thought it was about time I start looking into this whole surgical menopause thing. I am dreading it. The information is overwhelming. Everywhere I turn there is something about hormone replacement therapy, which I am quite sure I am unable to partake of because of this cancer. Thank God I don't suffer any hot flashes or anything of the like. And the moods and brain problems? Well, chemo causes the same things so I cannot tell if they are from chemo or the big M but, after reading and posting with some young women and men not in menopause, they experience the cognitive and mental factors from chemo that I do, too. So, my BIG worry: bone loss. Wouldn't you know I fit a lot of the risk factors for that:
Family history of osteoporosis
Low body weight
Cancer treatments (radiation, chemotherapy -- can cause bone loss)
Cancer
Surgical menopause with the removal of the ovaries accelerates the process of bone loss to a rapid level unless estrogen replacement therapy is begun
So I am not sure what to do about the whole bone loss thing...it mainly comes from the decrease/lack of estrogen produced by the ovaries (I have no ovaries anymore). I had ceased all vitamins (confusing research about vitamins and chemo) but, I just recently started taking my calcium/magnesium pill (magnesium helps stop the constipation calcium pills can have) and vitamin D to aide in absorption.
It is encouraged that women in my position eat lots of fruits, vegetables, and plant proteins (avoiding soy and flax seeds as they can mimic estrogen in the body [phytoestrogens], which is a no-no for me), do weight bearing activities, take supplements of vitamin D and calcium, avoid sugar and caffeine. Very interesting.
So tonight, feeling so overwhelmed (all the thank you cards that need to be written, the paper thank you I have procrastinated, nearing the end of treatment, messy house, hair falling out again, yadda yadda yadda, and all of the everyday life stuff for me right now), what do I do? Well, I bought a "$1000 A Week For Life" lottery card...I thought maybe my odds would show here...but they didn't. I won $4 though. And, I bought some Swedish Berries (candy) knowing full well that I should not be eating these.
But, I find it is when I feel overwhelmed that I seem to throw caution to the wind more often then not...and parade about with an, "I don't care" attitude, when I fully do care. So when that voice was going on in the back of my head, "you shouldn't eat those!" another part was saying, "who cares! eat them. you deserve it. it will distract you!" but, somewhere inside I knew I was ignoring my real self...I was not hungry at all nor craving them. Which makes me mad. And, to top it off, my belly is sore...can't handle candy like I used to be able too, which, I think, is actually a good thing.
Anywho, if anyone knows some super ways to improve/hold stable bone density, drop me a note in my comments section. Until then, I will be swimming through the menopause info jungle until chemo knocks me on my butt again.
Cheers,
Liz
Thursday, May 31, 2007
Sunday, May 27, 2007
A Little Philosophical...
I am amazed at Creation for so many reasons. There is so much beauty in it. Ever been able to enjoy a sunrise or sunset? Ever stopped to really appreciate a patch of wildflowers? Ever experienced the breathtaking beauty of a range of mountains? I love nature pictures. When you experience some of the beauties in nature, it really can strike you how small we all are, really. And it is not just nature but, also, humans. Ever watched a newborn baby sleep? Ever laughed so hard you cried? Ever felt so much empathy and compassion for someone you reached out to them? There is nothing more beautiful than someone wearing a smile on their face. Compassion, empathy, love, kindness, laughing, and belonging are some of the beauties of being human.
But, within this beautiful Creation of God's, there are things that try to take away the beauty of Creation. In nature we have ticks, avalanches, tornadoes, hurricanes, tsunamis, death, and disease...the list could go on. We have all read stories in newspapers or seen t.v. programs or experienced the wreckage nature can cause. In humans we get addictions, gossiping, stealing, dishonesty, manipulation, cheating, lying, bullying, suicide bombers, murderers, rapists...the list could go on, also. This is just another thing I don't understand. There is so much beauty and all of Creation is good but, there lingers evil throughout.....
God made me, yet, my body started growing cancer cells. My own body was manufacturing and growing something to kill me. How can this be? The very thing that made me a women...estrogen...was causing my body to bring into existence cancer cells. This is ugly but, in a way, a marvel. It reminds us that we, as humans, although intrinsically good, are capable of both good and evil; and, might I add, even though we may not be consciously aware we are doing it at first (as in the case of this cancer).
I don't understand. But, I think, we are called to deal with the disorder that comes about. Like, trying to bring harmony and peace about. Where there is disease...seek treatment, and offer compassion and empathy. Where there is a tornado...help the victims rebuild their lives. Where there is death...console the mourners. You get the idea?
I just think it is interesting how we can see so much beauty in Creation but, there are also things found within the beauty of Creation that are harmful to us. It is like we can't quite enjoy everything so carelessly...we can't walk into our home right after walking through the woods without checking for ticks first...we can't watch the beauty of storm clouds rolling in without eventually seeking shelter from the storm...we can't enjoy a nice chat with friends on the patio without mosquitoes bothering us...we can't enjoy a beautiful garden without weeding it. I can only guess that the time when we can marvel at the beauty of Creation with no side effects must be reserved for Heaven.
However, when I see glimpses of the beauty throughout Creation, I can't help but feel that God is there.
Cheers,
Liz
But, within this beautiful Creation of God's, there are things that try to take away the beauty of Creation. In nature we have ticks, avalanches, tornadoes, hurricanes, tsunamis, death, and disease...the list could go on. We have all read stories in newspapers or seen t.v. programs or experienced the wreckage nature can cause. In humans we get addictions, gossiping, stealing, dishonesty, manipulation, cheating, lying, bullying, suicide bombers, murderers, rapists...the list could go on, also. This is just another thing I don't understand. There is so much beauty and all of Creation is good but, there lingers evil throughout.....
God made me, yet, my body started growing cancer cells. My own body was manufacturing and growing something to kill me. How can this be? The very thing that made me a women...estrogen...was causing my body to bring into existence cancer cells. This is ugly but, in a way, a marvel. It reminds us that we, as humans, although intrinsically good, are capable of both good and evil; and, might I add, even though we may not be consciously aware we are doing it at first (as in the case of this cancer).
I don't understand. But, I think, we are called to deal with the disorder that comes about. Like, trying to bring harmony and peace about. Where there is disease...seek treatment, and offer compassion and empathy. Where there is a tornado...help the victims rebuild their lives. Where there is death...console the mourners. You get the idea?
I just think it is interesting how we can see so much beauty in Creation but, there are also things found within the beauty of Creation that are harmful to us. It is like we can't quite enjoy everything so carelessly...we can't walk into our home right after walking through the woods without checking for ticks first...we can't watch the beauty of storm clouds rolling in without eventually seeking shelter from the storm...we can't enjoy a nice chat with friends on the patio without mosquitoes bothering us...we can't enjoy a beautiful garden without weeding it. I can only guess that the time when we can marvel at the beauty of Creation with no side effects must be reserved for Heaven.
However, when I see glimpses of the beauty throughout Creation, I can't help but feel that God is there.
Cheers,
Liz
Thursday, May 24, 2007
I Did An Ugly
This evening (well, yesterday evening...it's 4am now) I did an ugly. Let's set the scene: I am back to chemo, as we know, and it hit me hard. I was not prepared for this. Life had been going good, I was feeling good...I assumed chemo would not hit me too hard. I was wrong. It knocked me out. I don't know why I thought it would not be that bad. So I am frustrated (for so many reasons, I am sure you can guess them) and that frustration was triggered...
See, when I am lying in bed and can't do anything, if I can manage it I like to go online just to give me a sense of having a life when I am knocked out...otherwise, it is quite hard to lye in bed all day and sleep at night, I need something to break up my days...they all begin to feel and be the same. Enter my laptop. But we also have a desktop computer (we each brought a computer into the marriage), which holds my primary e-mail account. I have not been able to check it for over a week now...for obvious reasons. I was feeling human today and wanted to see if I had any new e-mails. I turn on the desktop computer and, although all the wires have not been moved or taken out, it says there is no Internet connection. Grrr. I check my laptop...wouldn't you know the Internet is no longer working on that either. I have no clue how to fix it. That set me off. I felt so much anger and frustration...I can't even control the stupid Internet being in my home!!! I was red-faced and yelling explicits and random nothingness into the air. This is my only connection to the world at times and it is not working! Where there was a pile of books, I knocked them over. Where there were sheets of paper, I whipped them onto the floor. Where I found newspaper, I ripped it to shreds and tossed it about the room. Blankets, towels, pillows, piles of mail...thrown to the floor. Cushions on the couch...to the floor. Wrappers on the kitchen counter, dish towels, paper towels, anything...thrown to the floor. And BOP, poor BOP...I punched, kicked, threw, whipped, tossed, stepped on, twisted, yelled at, spit on, elbowed, twirled around, and mangled BOP...BOP is no longer.
If you were to walk into my house, you would think we had been ransacked. Call it a temper tantrum, a hissy fit, or a poor-me episode; it is what it was. I figured my life is a mess so why not my house too. I am so frustrated. And in a way, it was a poor me episode. Just seems that nothing can go my way...nothing. I know things can be worse than they are, I really do, but sometimes I just want to throw my hands in the air. I understand nothing. I don't know the "whys" for anything. And, my life is magically going to start right where it left off, come the end of June, because treatment is over?
You may be thinking...this girl needs some serious help. Maybe. Who couldn't use some. I am just trying to sort my life out in my head and it is hard. I'd say quite near impossible sometimes.
I wonder why I have all this pent up...stuff. Am I angry? Yes. Frustrated? Yes. Feel misunderstood? Yes. OK. Angry at what?? Life? God? Hmm, maybe. I am not sure though. I know you aren't supposed to be angry at God but, I can't deny my feelings and lie to myself. They are what they are.
Why Why Why Why Why Why Why Why Why Why Why Why Why
Why? Why has so much been taken away from me? I did not think I was a bad person. I am not perfect but also not someone who had done something so as to be living what I am. Is this punishment for something? I don't understand what I have done so wrong that life is what it is. I realize that it is probably nothing I have done, but, the question does float around in my mind. I think this is where I am supposed to "let go"...it is hard. I think I have mentioned it before...it is a continual process for me. Day by day a little more of what has happened sinks in and I have to learn to let it go, each and every time. I am sometimes slow to learn a lesson, too. I have book smarts, not so much street smarts.
I mentioned something about control in my ugly, I think that is a big part of things too. I am in control of nothing...even when I tried to take charge (recall numerous doctors visits pre-diagnosis) I never really did have control. I feel everything is completely out of control. It is stage 4 for a reason. It is grade 3 for a reason. And, although they are bad for me, I know the stats: 0.05% chance of getting this cancer; highest chance of recurrence; less than 5% living at the five year mark with stage 4....dang, they are ugly...and I try to remember other variables that are not taken into account with stats (I am NOTHING like a typical endo cancer patient in ANY way, as I am learning on my support group). At least my heart does not stop nor do I lose my breath when I recall the stats anymore. It is what it is and there is nothing I can do...what will be, will be.
I think I should just repeat that over and over and over and over and over...there MUST be a reason for all of this that I, obviously, cannot see. I know I wrote about this before too. I have to cling to that...but, I almost want to be like, "Whatever, God." Just give Him some attitude, you know? Be like..."Yo God, you see me here? You see what has been tossed onto my family? Hello? Do You care?" Now, don't think I have given up God, I haven't...I just want Him to know that I am a mess.
If only I could know why. Or even a little bit of why. But, really, would I be satisfied then?
Now, after writing that, I recall stories of people who are not wanting to say to God what I want to say when things are bad and, then, I am like, hmm, should I be like that?
I am doing the best I can with what I've got. What do you do when your best is not good enough?
It's tough, but doable.
Cheers,
Liz
See, when I am lying in bed and can't do anything, if I can manage it I like to go online just to give me a sense of having a life when I am knocked out...otherwise, it is quite hard to lye in bed all day and sleep at night, I need something to break up my days...they all begin to feel and be the same. Enter my laptop. But we also have a desktop computer (we each brought a computer into the marriage), which holds my primary e-mail account. I have not been able to check it for over a week now...for obvious reasons. I was feeling human today and wanted to see if I had any new e-mails. I turn on the desktop computer and, although all the wires have not been moved or taken out, it says there is no Internet connection. Grrr. I check my laptop...wouldn't you know the Internet is no longer working on that either. I have no clue how to fix it. That set me off. I felt so much anger and frustration...I can't even control the stupid Internet being in my home!!! I was red-faced and yelling explicits and random nothingness into the air. This is my only connection to the world at times and it is not working! Where there was a pile of books, I knocked them over. Where there were sheets of paper, I whipped them onto the floor. Where I found newspaper, I ripped it to shreds and tossed it about the room. Blankets, towels, pillows, piles of mail...thrown to the floor. Cushions on the couch...to the floor. Wrappers on the kitchen counter, dish towels, paper towels, anything...thrown to the floor. And BOP, poor BOP...I punched, kicked, threw, whipped, tossed, stepped on, twisted, yelled at, spit on, elbowed, twirled around, and mangled BOP...BOP is no longer.
If you were to walk into my house, you would think we had been ransacked. Call it a temper tantrum, a hissy fit, or a poor-me episode; it is what it was. I figured my life is a mess so why not my house too. I am so frustrated. And in a way, it was a poor me episode. Just seems that nothing can go my way...nothing. I know things can be worse than they are, I really do, but sometimes I just want to throw my hands in the air. I understand nothing. I don't know the "whys" for anything. And, my life is magically going to start right where it left off, come the end of June, because treatment is over?
You may be thinking...this girl needs some serious help. Maybe. Who couldn't use some. I am just trying to sort my life out in my head and it is hard. I'd say quite near impossible sometimes.
I wonder why I have all this pent up...stuff. Am I angry? Yes. Frustrated? Yes. Feel misunderstood? Yes. OK. Angry at what?? Life? God? Hmm, maybe. I am not sure though. I know you aren't supposed to be angry at God but, I can't deny my feelings and lie to myself. They are what they are.
Why Why Why Why Why Why Why Why Why Why Why Why Why
Why? Why has so much been taken away from me? I did not think I was a bad person. I am not perfect but also not someone who had done something so as to be living what I am. Is this punishment for something? I don't understand what I have done so wrong that life is what it is. I realize that it is probably nothing I have done, but, the question does float around in my mind. I think this is where I am supposed to "let go"...it is hard. I think I have mentioned it before...it is a continual process for me. Day by day a little more of what has happened sinks in and I have to learn to let it go, each and every time. I am sometimes slow to learn a lesson, too. I have book smarts, not so much street smarts.
I mentioned something about control in my ugly, I think that is a big part of things too. I am in control of nothing...even when I tried to take charge (recall numerous doctors visits pre-diagnosis) I never really did have control. I feel everything is completely out of control. It is stage 4 for a reason. It is grade 3 for a reason. And, although they are bad for me, I know the stats: 0.05% chance of getting this cancer; highest chance of recurrence; less than 5% living at the five year mark with stage 4....dang, they are ugly...and I try to remember other variables that are not taken into account with stats (I am NOTHING like a typical endo cancer patient in ANY way, as I am learning on my support group). At least my heart does not stop nor do I lose my breath when I recall the stats anymore. It is what it is and there is nothing I can do...what will be, will be.
I think I should just repeat that over and over and over and over and over...there MUST be a reason for all of this that I, obviously, cannot see. I know I wrote about this before too. I have to cling to that...but, I almost want to be like, "Whatever, God." Just give Him some attitude, you know? Be like..."Yo God, you see me here? You see what has been tossed onto my family? Hello? Do You care?" Now, don't think I have given up God, I haven't...I just want Him to know that I am a mess.
If only I could know why. Or even a little bit of why. But, really, would I be satisfied then?
Now, after writing that, I recall stories of people who are not wanting to say to God what I want to say when things are bad and, then, I am like, hmm, should I be like that?
I am doing the best I can with what I've got. What do you do when your best is not good enough?
It's tough, but doable.
Cheers,
Liz
Monday, May 21, 2007
How Could I Forget?
Hahaha, another late night post for me. It is about 2am. No worries. I am good. I just can't believe I forgot how brutal chemo can be. Today (just past) has been a helluva day. I think I left the bed for a total of 60 minutes. Hahaha! I am crazy, totally forgot how chemo makes one feel. It is not too bad...just the usual pain, airy-headed, heavy, unbalanced, slow moving chemo head and body. And to think, on Friday I was rollerblading and biking all over town...I couldn't imagine even trying to tie up my blades or straddle my bike right now. Hahaha. Although, getting out would do me some good...gotta make a trip to get some water downstairs...I will be right back...Whew! I am back. Was it not the tortoise who won going slow and steady? I recommend that type of movement right now. All you chemo heads know what I am talking about.
I thought I would gloss a topic that is circulating on the forums for us young adults with cancer. The question out there is quality vs. quantity. If you were told that you could have one or two quality months before passing away or that you could take chemo to give you eight more months, what would you do? Some of us feel that there is a stigma out there that if you don't opt to have treatment that you are giving up. Such a difficult question. I hope it is one that I NEVER have to consider. But, alas, some of us, young and old alike, have to face this tough question. I see it as there are pluses and minuses to both sides. For quality of life -- you live a month or two with sense and an awareness and you can accomplish some things you would have always wanted to do. But, I tend to think, what if there was a treatment 6 months off and because you chose quality, you miss out on the treatment? For quantity of life -- well, you would have more time, but it would probably be spent feeling ill a lot because of the treatment. Not that any of us would really know what we would do until we were in that situation. But, it is refreshing to talk about it and highlight that maybe, just maybe, choosing not to endure treatment is not considered giving up. That there is another side to the coin that others may not see.
Anywho, food for thought.
Cheers,
Liz
I thought I would gloss a topic that is circulating on the forums for us young adults with cancer. The question out there is quality vs. quantity. If you were told that you could have one or two quality months before passing away or that you could take chemo to give you eight more months, what would you do? Some of us feel that there is a stigma out there that if you don't opt to have treatment that you are giving up. Such a difficult question. I hope it is one that I NEVER have to consider. But, alas, some of us, young and old alike, have to face this tough question. I see it as there are pluses and minuses to both sides. For quality of life -- you live a month or two with sense and an awareness and you can accomplish some things you would have always wanted to do. But, I tend to think, what if there was a treatment 6 months off and because you chose quality, you miss out on the treatment? For quantity of life -- well, you would have more time, but it would probably be spent feeling ill a lot because of the treatment. Not that any of us would really know what we would do until we were in that situation. But, it is refreshing to talk about it and highlight that maybe, just maybe, choosing not to endure treatment is not considered giving up. That there is another side to the coin that others may not see.
Anywho, food for thought.
Cheers,
Liz
Friday, May 18, 2007
Chemo Day
So chemo day has come and gone again. It was a bit of a blur, really, like always but I will try to explain how my visit went with my gyn/onc, it did make me feel better. I got to say a few things that had been on my mind. The first was that I feel it is unfair I am being treated like a geriatric patient when I am not. The treatment I get is the same across the board...however, for me and other young women with this type of cancer, we are nothing like our older counter parts dealing with this cancer. I am healthy (well, besides this dang cancer), very active (blading, hockey, basketball leagues), 5'11, 130 pounds, great cardio system, strong, work out as much as I can (depends how I feel between treatments), I have not had that life that older women have (no kids or grandkids, not even the option to say I want kids/don't want kids), I was into looking for a job in my career, I have just finished school 2.5 years ago, my husband and I just bought out first house, we have only been married 3 years, we are both in our 20s, I don't drink or do drugs, I eat well, I had just bought my first puppy...you see how not only physically but emotionally and mentally I am not like someone 65. I also brought forward some studies I had found indicating that the treatment a young adult receives (geriatric vs. pediatric) did have an effect on a young adult's survival rate (as much as 30% -- the young adults who received care in the pediatric hospital had the better survival rates). He was a bit surprised, I think. So we discussed this and he said that there are so many variables with studies, especially with studies that can be found on the Internet, that I need to be careful. He used an analogy to highlight the dangers in taking a study purely at face value, which I saw the merits to. But it still does not take this thought out of me. I am glad that he is aware of it and, maybe, something further can come of it...or something. But, who knows...I hope everything I said is not just forgotten, you know...like a waste of my breath.
And then I said that an oncologist I had seen at home asked if I have been genetically tested yet and I said to that oncologist no, no one had even said anything about it to me. I think my gyn/onc doc was surprised to hear that too, that I saw another oncologist (well, I think he was). He asked why I had been to another oncologist and I said it was because of the neutropenic fever I had (which he did not know about...read on, it will explain that).
Somewhere in our conversation he said, "Ultimately, you need to trust me." And what I said after he said this surprised me, I did not clam up or get fidgety. I said (not verbatim), "Well, I have not seen you in forever (5 months). I saw the other oncologist when I had a neutropenic fever and was told I have a fissure when I was lying in the ER at 1am and he took care of me for the next week or so. This doc did tell me to call your office to continue the follow up, so I did. But when I called your office to let you know what was going on and to follow up both these issues when I was discharged, whoever I talked to said you did not have to know or check up on me and to take a Tylenol for the fissure because there is nothing you could do about it. So that left me thinking I am not sure what doc to go to about what, it is confusing, I am not sure who to call. I mean, are you my primary oncologist? How does my radiotherapist fit into the picture? Or am I just tossed around from doctor to doctor, as treatment dictates, like I feel I am?" He said that he is my primary gyn/onc caretaker, which is good to know because I was getting confused.
Then I said that I also have questions about the drug Megace and whether my tumor was er/pr positive or negative...if I could take Megace afterwards. And then I said, "What about the Lynch Syndrome, is this a possibility, that I may have this, which led to me getting this cancer or being more prone to get this cancer?" And he was like, "You have been doing a lot of research." And I was like, "Yeah." He said that it has been too long since we have all had a chance to see each other and that, if Neil and I would like, he wouldn't mind setting up an appointment at his office to talk through other questions I have and to discuss the treatment I had and what comes next and what to expect and be on the look out for, etc. Neil and I agreed. We have decided to set the appointment for early in June, after my first follow up appointment with my radiotherapist. Just in case more questions linger after my visit to the radiotherapist.
Anywho, it made me feel better. The gyn/onc also asked me if I plan on growing my hair long again because he said the short hair was becoming on me...I was also wearing the makeup I got from the Canadian Cancer Society, lip gloss, my new fun capri pants, cool thong sandals, and a nice 3/4 length shirt...I had been wearing warm-up pants for all my other appointments and then I decided to dress more my age so the gyn/onc doesn't miss that I am YOUNG...not the typical age of patient he deals with, with this cancer.
Well, my mind is getting mushy and I think I covered pretty much all of what I remember anywho. I tried to get it on here because I know I have written about some of these issues in previous blogs, just wanted to keep you on top of it as best I can remember and do.
Hugs,
Liz
And then I said that an oncologist I had seen at home asked if I have been genetically tested yet and I said to that oncologist no, no one had even said anything about it to me. I think my gyn/onc doc was surprised to hear that too, that I saw another oncologist (well, I think he was). He asked why I had been to another oncologist and I said it was because of the neutropenic fever I had (which he did not know about...read on, it will explain that).
Somewhere in our conversation he said, "Ultimately, you need to trust me." And what I said after he said this surprised me, I did not clam up or get fidgety. I said (not verbatim), "Well, I have not seen you in forever (5 months). I saw the other oncologist when I had a neutropenic fever and was told I have a fissure when I was lying in the ER at 1am and he took care of me for the next week or so. This doc did tell me to call your office to continue the follow up, so I did. But when I called your office to let you know what was going on and to follow up both these issues when I was discharged, whoever I talked to said you did not have to know or check up on me and to take a Tylenol for the fissure because there is nothing you could do about it. So that left me thinking I am not sure what doc to go to about what, it is confusing, I am not sure who to call. I mean, are you my primary oncologist? How does my radiotherapist fit into the picture? Or am I just tossed around from doctor to doctor, as treatment dictates, like I feel I am?" He said that he is my primary gyn/onc caretaker, which is good to know because I was getting confused.
Then I said that I also have questions about the drug Megace and whether my tumor was er/pr positive or negative...if I could take Megace afterwards. And then I said, "What about the Lynch Syndrome, is this a possibility, that I may have this, which led to me getting this cancer or being more prone to get this cancer?" And he was like, "You have been doing a lot of research." And I was like, "Yeah." He said that it has been too long since we have all had a chance to see each other and that, if Neil and I would like, he wouldn't mind setting up an appointment at his office to talk through other questions I have and to discuss the treatment I had and what comes next and what to expect and be on the look out for, etc. Neil and I agreed. We have decided to set the appointment for early in June, after my first follow up appointment with my radiotherapist. Just in case more questions linger after my visit to the radiotherapist.
Anywho, it made me feel better. The gyn/onc also asked me if I plan on growing my hair long again because he said the short hair was becoming on me...I was also wearing the makeup I got from the Canadian Cancer Society, lip gloss, my new fun capri pants, cool thong sandals, and a nice 3/4 length shirt...I had been wearing warm-up pants for all my other appointments and then I decided to dress more my age so the gyn/onc doesn't miss that I am YOUNG...not the typical age of patient he deals with, with this cancer.
Well, my mind is getting mushy and I think I covered pretty much all of what I remember anywho. I tried to get it on here because I know I have written about some of these issues in previous blogs, just wanted to keep you on top of it as best I can remember and do.
Hugs,
Liz
Thursday, May 17, 2007
Pre-Chemo Jitters
Here I sit in the hotel room (which is freezing) at 2:38am with Neil snoring in the background. I am in complete darkness except for the light of my computer screen so as to not wake Neil. I have aimlessly surfed the net for quite a number of hours trying to distract myself. I watched TV for a bit to continue the distraction. I have taken round 1 of my steroids and my sleeping pills but, I am unable to fall asleep. So many things are running through my head. I can't relax. I am starting on chemo again...for some reason, seeing the gyn/onc doc gets me anxious. I have so many questions but I know the game that is played at these appointments. I know the docs come in just basically to say the blood work is OK and to see if there are any complications from treatment that need to be addressed. They have a full day ahead of them, as do I, and I cannot harness my thoughts there anyways...they seem to jump all over the place. Well, that is how I perceive these appointments. I don't want to be perceived as a nuisance, which is how the pre-diagnosis docs made me feel, so I have carried that with me. I am a mess. I know the questions I want to ask and have written them down but, alas, I know I will not get to them all...that stupid feeling of being a nuisance creeps in...and I get mad at myself...why do I let this feeling override everything I wanted to ask??? I also know the questions I will be asked about my pain: "On a scale of 1 -10 with 10 being the worst, how would you rate your pain?" and "Describe the pain you are feeling. What exactly does it feel like?" These questions are where I lose the game...I am not good a "describing" the pain...and they make judgment calls about what to do based on how I "describe" things. I don't understand the logic there. You see, the pain description pre-diagnosis was a game I lost at, although I tried my hardest...things fell on deaf ears or over worked minds and so I fell through the cracks. I am SO SCARED this is going to happen again...and the cost of losing at this stage of the game is my life. It says in my file my brother was killed 36 hours before I got the pathology results...does anyone realize this affects my thinking/emotions/abilities...even now? And I can get so worked up about all of this that I may get too excited in the doc's office or not explain myself well enough or worse yet, clam up. People say I am brave...now I am showing you how I am not. I am just a wreck, really. I mean, I can pull it together, but it unravels a lot. Courage, braveness, strength...I wish these were my qualities.
I like to think of life as a puzzle...when you go through life, you find other pieces of the puzzle and eventually fit them into their spot...totally lost with this analogy now. I guess you can say I have dropped some puzzle pieces and I am not quite sure where they fell or how to pick them up, and I believe that sometimes I just don't have the energy to pick them or I am afraid to pick them up. I have no clue where any of it goes right now...not since Jason died and I got my pathology results. Where does the puzzle piece that says "Lose Beloved Brother, Jason" go? Where does the puzzle piece that says "Get cancer, stage 4, grade 3" go? These are the $60 million dollar questions for me...how does it all fit together in my puzzle?
And with the onset of chemo we know I will be losing that little muffle of hair I have grown over the past little while. I am not looking forward to the pain, rash, and sickness feeling that comes from the chemo. I am going to lose that good feeling of being "healthy" (does it even apply to me?) and alive and vibrant. I am going to lose the ability to go to the gym and workout or go for a nice long roller blade or to see Princess everyday and play with her...but, mostly, I am going to miss the loss of a sense of "normalcy" I had slowly gained by the end of my break from radiation. I had been to St. Chris for a fund raiser for myself, Dan, and the Canadian Cancer Society; I had been to the LSSAA meet to watch our students and hang with some friends; I was coaching 2-pitch and feeling good and able to do a lot while I was there. Now, to go back to the chemical cocktail I lose a lot of the ground I had made...I have heard the saying 5 steps forward and four step backwards.
What needs to be done I will do, I just did not realize how much it would play on me emotionally. I can handle the physical anguish (I have perkisets!) but, the roller coaster ride that it is...I'd rather be riding one at Canada's Wonderland or Cedar Point.
I don't know who to turn to or what to say to try and help them help me. I really don't have a clue. Again, I feel like a nuisance...that is one thing from the previous docs that I cannot shake...and to think they made me feel like I was a nuisance and they seemed exasperated with me...why can't I shake it because, in the end, they were wrong, not me!! There was something seriously wrong and they made me feel so stupid for continually making appointments to see them. I feel like a fool. With doc #4 I was told my "fibroid(s)" were not cancer...I play that over in my head, it was about a year before I was actually diagnosed...the doc said, "Don't worry it isn't cancer." and I was like, "Oh, I never even thought that." WHY WHY WHY did I not ask HOW they had come to that conclusion. I know what you are thinking, "No use crying over spilled milk" and I agree but, in my weak moments I go there...and wonder "what if" it was caught then...but, alas, hindsight is always 20/20. It is of no help for me to go there. Like I said, my minds races a thousand miles a minute with no specific destination.
I look at life as a cruel game right now. I have lost my brother...so much is gone. My own babies...so much...I cannot think about it right now or it will send me on another tangent. I get glimpses of the joy of living and getting out and being with people. Friends all around me are having babies and moving into their careers, making plans for their future, having those day-to-day problems and worries that come with living...I am not begrudging you. I love you all dearly, I just wish I could relate to you all. I don't understand why life has decided that I cannot enjoy the start in life that is taken for granted. But, rather, here I sit, on the sidelines, praying to live. I don't understand the hand in life I have been dealt and thinking about it now, at 3:15am, is not going to help me. I am a mess. I thought I was OK but, now, sitting here, I don't even know. If I could just shut down my mind. But, I don't really want to do that because I don't want to deny the experience, somehow I think that would be worse.
I think, as much as we don't want to be hurt or vulnerable or suffer or experience pain, it is a part of being human. There are ways to escape it...but they don't solve it or get you over it. I read somewhere that there is a worry amongst the medical professionals that cancer patients are abusing the pain killers they are prescribed, taking them long after they need to. I think this may be a form of escapism...how some may be coping and dealing with their life having been thrown upside down with death knocking at their door. Escapism masks the problem, which eventually, I imagine, manifests itself somewhere in your life, which from that article I assume, for cancer patients, it is in abusing prescription strength painkillers. Maybe that should be telling everyone something...the end of treatment SHOULD NOT be the end of care. Yes, I know you have a visit every 3rd month with the doc, but what I am talking about is help for those who are trying to get back to a"normal" life and put in to perspective what the hell they have just been through. It ain't easy...I imagine...at least for the young folks like me. So, when I am done my treatments in June, do I just resume my job search? Like, I guess, but it is lacking...something...we can not be expected to just pick up where we left off before our diagnosis...it is just figuring out what exactly to do...with the different person we are now as compared to just before we were diagnosed. Me perspective on life has changed greatly for so many reasons and...hmm, I guess time will tell.
So, I may be a full fledged lunatic right now, but I wear that badge with pride. I may not be where I want to be, but thank God I am not where I used to be. Believe it or not, there has been some improvement since November.
Hugs,
Liz
I like to think of life as a puzzle...when you go through life, you find other pieces of the puzzle and eventually fit them into their spot...totally lost with this analogy now. I guess you can say I have dropped some puzzle pieces and I am not quite sure where they fell or how to pick them up, and I believe that sometimes I just don't have the energy to pick them or I am afraid to pick them up. I have no clue where any of it goes right now...not since Jason died and I got my pathology results. Where does the puzzle piece that says "Lose Beloved Brother, Jason" go? Where does the puzzle piece that says "Get cancer, stage 4, grade 3" go? These are the $60 million dollar questions for me...how does it all fit together in my puzzle?
And with the onset of chemo we know I will be losing that little muffle of hair I have grown over the past little while. I am not looking forward to the pain, rash, and sickness feeling that comes from the chemo. I am going to lose that good feeling of being "healthy" (does it even apply to me?) and alive and vibrant. I am going to lose the ability to go to the gym and workout or go for a nice long roller blade or to see Princess everyday and play with her...but, mostly, I am going to miss the loss of a sense of "normalcy" I had slowly gained by the end of my break from radiation. I had been to St. Chris for a fund raiser for myself, Dan, and the Canadian Cancer Society; I had been to the LSSAA meet to watch our students and hang with some friends; I was coaching 2-pitch and feeling good and able to do a lot while I was there. Now, to go back to the chemical cocktail I lose a lot of the ground I had made...I have heard the saying 5 steps forward and four step backwards.
What needs to be done I will do, I just did not realize how much it would play on me emotionally. I can handle the physical anguish (I have perkisets!) but, the roller coaster ride that it is...I'd rather be riding one at Canada's Wonderland or Cedar Point.
I don't know who to turn to or what to say to try and help them help me. I really don't have a clue. Again, I feel like a nuisance...that is one thing from the previous docs that I cannot shake...and to think they made me feel like I was a nuisance and they seemed exasperated with me...why can't I shake it because, in the end, they were wrong, not me!! There was something seriously wrong and they made me feel so stupid for continually making appointments to see them. I feel like a fool. With doc #4 I was told my "fibroid(s)" were not cancer...I play that over in my head, it was about a year before I was actually diagnosed...the doc said, "Don't worry it isn't cancer." and I was like, "Oh, I never even thought that." WHY WHY WHY did I not ask HOW they had come to that conclusion. I know what you are thinking, "No use crying over spilled milk" and I agree but, in my weak moments I go there...and wonder "what if" it was caught then...but, alas, hindsight is always 20/20. It is of no help for me to go there. Like I said, my minds races a thousand miles a minute with no specific destination.
I look at life as a cruel game right now. I have lost my brother...so much is gone. My own babies...so much...I cannot think about it right now or it will send me on another tangent. I get glimpses of the joy of living and getting out and being with people. Friends all around me are having babies and moving into their careers, making plans for their future, having those day-to-day problems and worries that come with living...I am not begrudging you. I love you all dearly, I just wish I could relate to you all. I don't understand why life has decided that I cannot enjoy the start in life that is taken for granted. But, rather, here I sit, on the sidelines, praying to live. I don't understand the hand in life I have been dealt and thinking about it now, at 3:15am, is not going to help me. I am a mess. I thought I was OK but, now, sitting here, I don't even know. If I could just shut down my mind. But, I don't really want to do that because I don't want to deny the experience, somehow I think that would be worse.
I think, as much as we don't want to be hurt or vulnerable or suffer or experience pain, it is a part of being human. There are ways to escape it...but they don't solve it or get you over it. I read somewhere that there is a worry amongst the medical professionals that cancer patients are abusing the pain killers they are prescribed, taking them long after they need to. I think this may be a form of escapism...how some may be coping and dealing with their life having been thrown upside down with death knocking at their door. Escapism masks the problem, which eventually, I imagine, manifests itself somewhere in your life, which from that article I assume, for cancer patients, it is in abusing prescription strength painkillers. Maybe that should be telling everyone something...the end of treatment SHOULD NOT be the end of care. Yes, I know you have a visit every 3rd month with the doc, but what I am talking about is help for those who are trying to get back to a"normal" life and put in to perspective what the hell they have just been through. It ain't easy...I imagine...at least for the young folks like me. So, when I am done my treatments in June, do I just resume my job search? Like, I guess, but it is lacking...something...we can not be expected to just pick up where we left off before our diagnosis...it is just figuring out what exactly to do...with the different person we are now as compared to just before we were diagnosed. Me perspective on life has changed greatly for so many reasons and...hmm, I guess time will tell.
So, I may be a full fledged lunatic right now, but I wear that badge with pride. I may not be where I want to be, but thank God I am not where I used to be. Believe it or not, there has been some improvement since November.
Hugs,
Liz
Friday, May 11, 2007
Laugh and Smile
Here is the licence that the MTO messed up. I posted it to give people a good laugh, it is so much better seeing it:
I e-mailed the government and they replied saying I will have to apply for a name change and a new photo. I don't want to get it corrected now because I love this photo. I went through a lot to achieve that baldness you see here and I want it to remain on my licence. I see that picture and the smile...it reminds me that one can smile amid adversity and pain. In a way, I am proud of it. It will remind me, as I imagine when I grow my hair back this summer when chemo is done, of where I have been and what I have been through. And I was able to really smile at times through out it.
As you can see on my licence my birthday is January 16. Jason's birthday was January 22. I did not celebrate my birthday this year. It was just too hard being so close to my brother's day of birth. We had combined birthday parties when we were younger and, with Grandpa and my parents, we had gotten into a routine of going out for dinner on our birthdays in recent years. Not this year. How could I? I would want Jason there. He usually arrived late. That was him. I think he would even be late for his own birthday dinner! But you knew he would be there. So, right now, thinking, I don't want to celebrate my birthday anymore; at least not like we used to. I was thinking about maybe celebrating the day we found out I had cancer (sounds odd, but, in a way, had that doctor brushed me off like the others for the year she recommended, I imagine that the cancer would have been way worse than the metastasis to my rectum...I really think it was meant to be found then or should I say, I am so thankful to God that He tweaked the doctor about something, and she listened, just as I was going to leave..read more at Being Diagnosed with Cancer). I ruled out that day though because it is exactly 2 months to the date before Jason died. I then thought about celebrating my surgery date, the beginning of my actual fight with cancer, but, alas, too painful because my being in the hospital is too close to Jason's date of death...can't explain it yet. So, I am thinking that the date of my last treatment (God willing) will be the new "birthday" celebration with me. To celebrate it this year I plan to walk in the Canadian Cancer Society's Relay For Life - the Survivors' Victory Lap here in Sarnia on June 22. I will have been done treatment for 2 weeks.
I am nervous to walk it because I am afraid I will be too emotional. I don't want to be a blubbering fool, especially if, like last year, the survivors walk proud and smile...I don't want to take that away from anyone. I don't recall much crying from the survivors last year but, us people watching and cheering them as they walked by were blubbering. It has been a rough 9 months; so much I have lost. I walk that lap not only for myself but for Jason, my friends who have lost their battle with cancer, my friends who have battled cancer but cannot make it (K.G.), and for all those who have supported me. I remember being present for the Survivor's Lap last year and, not even knowing anyone in it, I found it very emotional. There were some children, some young people, some adults, and some older adults...putting faces to cancer is so emotional for me...
I went out to lunch today with my mother and her lady friends. It was fun and free! I can't lie, I felt like some superstar as they cheered for me when I walked in the room. I gave a little bow and my smile was from ear to ear. A lot of the women present there, even amid their own trials and other things I am sure they experience, remarked that they pray for me and read my blog faithfully. How good did I feel to hear these words and from people that don't necessarily know me? I think it is quite remarkable how some people can experience their own tragedies yet, they are still able to reach out in a way that touches others and, in their own way, help them. I aspire to do this and I do try. Sometimes I wonder if people understand me through this blog. I hope that some people find something in it helpful. It is such a one sided medium in a way. I have the good, the bad, and the ugly here and I wonder, also, if the "bad and the ugly" put people off; however, the women who came to speak with me privately said that they really appreciated my honesty. So, for that I am grateful. They can appreciate and, sometimes, understand the good, the bad, and the ugly; and they don't want me to cover it up. Thank you ladies. It meant a lot to me to be able to see and talk with you all today. It was very encouraging to me.
Cheers,
Liz
ps- Just reading my previous blog I wish, in a way, that my doctors read this blog...weird, I mean, I am sure they would not necessarily enjoy it or anything but I think it would be good for them to be more aware of the detailed workings of my life while going through treatment. Maybe help take away the second guessing?
I e-mailed the government and they replied saying I will have to apply for a name change and a new photo. I don't want to get it corrected now because I love this photo. I went through a lot to achieve that baldness you see here and I want it to remain on my licence. I see that picture and the smile...it reminds me that one can smile amid adversity and pain. In a way, I am proud of it. It will remind me, as I imagine when I grow my hair back this summer when chemo is done, of where I have been and what I have been through. And I was able to really smile at times through out it.
As you can see on my licence my birthday is January 16. Jason's birthday was January 22. I did not celebrate my birthday this year. It was just too hard being so close to my brother's day of birth. We had combined birthday parties when we were younger and, with Grandpa and my parents, we had gotten into a routine of going out for dinner on our birthdays in recent years. Not this year. How could I? I would want Jason there. He usually arrived late. That was him. I think he would even be late for his own birthday dinner! But you knew he would be there. So, right now, thinking, I don't want to celebrate my birthday anymore; at least not like we used to. I was thinking about maybe celebrating the day we found out I had cancer (sounds odd, but, in a way, had that doctor brushed me off like the others for the year she recommended, I imagine that the cancer would have been way worse than the metastasis to my rectum...I really think it was meant to be found then or should I say, I am so thankful to God that He tweaked the doctor about something, and she listened, just as I was going to leave..read more at Being Diagnosed with Cancer). I ruled out that day though because it is exactly 2 months to the date before Jason died. I then thought about celebrating my surgery date, the beginning of my actual fight with cancer, but, alas, too painful because my being in the hospital is too close to Jason's date of death...can't explain it yet. So, I am thinking that the date of my last treatment (God willing) will be the new "birthday" celebration with me. To celebrate it this year I plan to walk in the Canadian Cancer Society's Relay For Life - the Survivors' Victory Lap here in Sarnia on June 22. I will have been done treatment for 2 weeks.
I am nervous to walk it because I am afraid I will be too emotional. I don't want to be a blubbering fool, especially if, like last year, the survivors walk proud and smile...I don't want to take that away from anyone. I don't recall much crying from the survivors last year but, us people watching and cheering them as they walked by were blubbering. It has been a rough 9 months; so much I have lost. I walk that lap not only for myself but for Jason, my friends who have lost their battle with cancer, my friends who have battled cancer but cannot make it (K.G.), and for all those who have supported me. I remember being present for the Survivor's Lap last year and, not even knowing anyone in it, I found it very emotional. There were some children, some young people, some adults, and some older adults...putting faces to cancer is so emotional for me...
I went out to lunch today with my mother and her lady friends. It was fun and free! I can't lie, I felt like some superstar as they cheered for me when I walked in the room. I gave a little bow and my smile was from ear to ear. A lot of the women present there, even amid their own trials and other things I am sure they experience, remarked that they pray for me and read my blog faithfully. How good did I feel to hear these words and from people that don't necessarily know me? I think it is quite remarkable how some people can experience their own tragedies yet, they are still able to reach out in a way that touches others and, in their own way, help them. I aspire to do this and I do try. Sometimes I wonder if people understand me through this blog. I hope that some people find something in it helpful. It is such a one sided medium in a way. I have the good, the bad, and the ugly here and I wonder, also, if the "bad and the ugly" put people off; however, the women who came to speak with me privately said that they really appreciated my honesty. So, for that I am grateful. They can appreciate and, sometimes, understand the good, the bad, and the ugly; and they don't want me to cover it up. Thank you ladies. It meant a lot to me to be able to see and talk with you all today. It was very encouraging to me.
Cheers,
Liz
ps- Just reading my previous blog I wish, in a way, that my doctors read this blog...weird, I mean, I am sure they would not necessarily enjoy it or anything but I think it would be good for them to be more aware of the detailed workings of my life while going through treatment. Maybe help take away the second guessing?
Wednesday, May 9, 2007
Mumble Jumble
I have been wondering what to put on my blog lately. I was telling Kim that I don't feel like I have much to say that would be interesting and I am not sure what to put...I don't like to rumble and grumble too much here but, I put this here for that, and welcomed people to read it knowing that. So, alas, I need to put some of my jumbled thoughts into words. I am a jumble of emotions and feelings and thoughts sometimes that I can't string together too much coherentness. But, alas, I will try.
Neil called to let me know that my chemo has been delayed a week. So, that feeling I was typing about (Elizabteh), it is even bigger now than it was before. I am so disappointed about this. So saddened too. I feel it is a big brush off...like they don't care. Have some of them written me off already? I ask myself this and wonder. I would love to know what my doctors and medical team really think...as I have already said, I am not feeling the love. I thought going away I could "leave" my thoughts, etc, behind...I did not pack them in my suitcase or carry-on bag but somehow they followed me and made it to Chicago, uninvited.
Maybe I have not explained myself clear enough to understand why I have this feeling that my fight is not being fought full throttle by my "care" team, per se. I have been thinking about this a lot here and have had a sleepless night or two about this issue so I have more understanding into it myself; well, enough that I can verbalize where these fears come from. These fears lead to my being angry at my doctors and health care team on this issue. See, I learned something quite neat, which I believe to carry some truth. When we are angry, it is masking a pain we feel, which in turn is masking a fear we have. I know what my fear is. I don't want to die and I fear my "team" is not giving their all to help me in my battle. I get this; however, if you have figured out the next step, how to get rid of the anger, now knowing what is causing it, please let me know.
Anywho, let me summarize what feeds the fear I have that leads me to feel anger towards my docs:
1. Chemo #4 saw NO doctor beforehand (those who have been through chemo know it gets worse as you go along so it is more reassuring to see any doctor before chemo, even if it was not your regular doc)
2. Was asked on several occasions when getting needles if I am athletic because of my good veins and tough skin (I love this compliment!) and then when they find out I am they ask if I am still playing hockey and all...umm, do you know the chemo I am on? and what it does to my body? I am lucky to make it out of bed on the bad days.
3. Doctor told me if the cancer reoccurs there is nothing more they can do, other than attempt to slow the growth (then, I was like, OK, but I guess, looking back, I feel this is actually bad etiquette. I know the stats but there are new discoveries so often...and a doctor DOES NOT know anyone's time of exit from this world...not that he gave me one, but I just wanted to type that for some who may need to hear it again...I understand)
4. Was not asked to go into a clinical trial, or if I was even able to. The words were not even mentioned.
5. Have had no scan of any kind at any time on any other part of my body to see if there is anything elsewhere.
6. I am being treated like a typical older woman/pre/post menopausal with this cancer, not like someone in their 20s. And everything about me and this experience is NOT typical. My body is different than an older woman's. Example, I asked a doc how the # of radiation days was decided upon and he replied "years and years of research and taking into account balancing the negative effects with the positive ones." Back then I was clueless but now I am like, "Well, how much of that research was on someone my age?" "And in my good general health with this cancer?" "How much was done on some one with stage 4?" (there is not a lot on stage 4 research for this cancer). I can handle a few extra radiation rounds than others...I can handle a few more chemo rounds than others. What if a few extra chemos or radiations could be the life saver for me? I am not your typical patient with this cancer!
7. And now, my chemo being delayed...I guess, I don't want to feel like a number. I want to feel like my team is behind me and fighting along with me and they believe and think it important to go through the process in a timely manner. Like it matters that I only wait 4 weeks between chemo and rads and chemo again...not more. Give it to me on the schedule you gave to me!
8. At the beginning of the whole journey when finding out I had cancer, I was only told that the most important thing to know was how far the cancer got into my myometrium (uterine wall) to determine the next course of action (chemo, rads). No one told me it could travel through my right fallopian tube and attach to my rectum and free float through my abdominal region...so, when I was told that I was like, "What? I was only told it mattered how far into my myometrium!" [No growth was found on my ovaries or fallopian tubes or cervix or in my lymph nodes (only 13? were tested)...well, at least I think no growths were found in any of these other spots (I find myself second guessing sometimes).]
9. OK, this is an add on from my original post, I can't believe I forgot this one --> neutropenic fever and the fissure. The oncologist in Sarnia who first treated me for these 2 things said that I should call my doc in London so I could have follow up. Well, I did just that and was told (not verbatim) "We don't need to know about the fever. There is nothing we can do for the fissure, take some tylenol before you have a bowel movement." Hmmm, we all know what happened with that fissure...and I am still dealing with the stupid thing. I felt like I hit that brick wall I kept hitting going through the 5 doctors before I was diagnosed. Do they care??? I still wonder.
10. Oh, and one more I forgot --> genetic testing. Umm, being so rare to get this cancer at this age, I have been asked by other oncologists if I have had genetic testing done (i.e. for the lynch syndrome). It has not been mentioned to me at all by my care "team."
Some of this may be irrational, some of it may be rational. But the funny thing is that we will not know. Time must march on, as it does any way, whether we want it to or not. Over time we will know if I am "cured" (tricky word) or if new research leads to new ways of treatment. Case in point, I have read a story of a woman with this cancer, stage 3, who was given the option of chemo 2 years ago. Now, chemo is considered a possible beneficial course of action for the patient at this stage of the cancer so, I think it is standard now (well, unless someone forgoes modern medicine).
Sometimes, I can tell when members of my health care team don't know I am stage 4 as compared to when they know I am. I get puppy dog eyes afterwards...I get the head tilt...I get the soft, "How are you today?"...Bless their hearts...they do mean well but I am like "What! I am fighter. I am sick...I don't have a death sentence! FIGHT! You chose the job, I landed in your "to do" pile, so let's get doing! Let's sing a fight song together...let's do the fight dance! WOoHOo!"
I do realize I can die and I do think about my funeral and details of the like, but I do plan on fighting this damn thing! Step up! Fight with me! Don't leave me second guessing!
Cheers,
Liz
Neil called to let me know that my chemo has been delayed a week. So, that feeling I was typing about (Elizabteh), it is even bigger now than it was before. I am so disappointed about this. So saddened too. I feel it is a big brush off...like they don't care. Have some of them written me off already? I ask myself this and wonder. I would love to know what my doctors and medical team really think...as I have already said, I am not feeling the love. I thought going away I could "leave" my thoughts, etc, behind...I did not pack them in my suitcase or carry-on bag but somehow they followed me and made it to Chicago, uninvited.
Maybe I have not explained myself clear enough to understand why I have this feeling that my fight is not being fought full throttle by my "care" team, per se. I have been thinking about this a lot here and have had a sleepless night or two about this issue so I have more understanding into it myself; well, enough that I can verbalize where these fears come from. These fears lead to my being angry at my doctors and health care team on this issue. See, I learned something quite neat, which I believe to carry some truth. When we are angry, it is masking a pain we feel, which in turn is masking a fear we have. I know what my fear is. I don't want to die and I fear my "team" is not giving their all to help me in my battle. I get this; however, if you have figured out the next step, how to get rid of the anger, now knowing what is causing it, please let me know.
Anywho, let me summarize what feeds the fear I have that leads me to feel anger towards my docs:
1. Chemo #4 saw NO doctor beforehand (those who have been through chemo know it gets worse as you go along so it is more reassuring to see any doctor before chemo, even if it was not your regular doc)
2. Was asked on several occasions when getting needles if I am athletic because of my good veins and tough skin (I love this compliment!) and then when they find out I am they ask if I am still playing hockey and all...umm, do you know the chemo I am on? and what it does to my body? I am lucky to make it out of bed on the bad days.
3. Doctor told me if the cancer reoccurs there is nothing more they can do, other than attempt to slow the growth (then, I was like, OK, but I guess, looking back, I feel this is actually bad etiquette. I know the stats but there are new discoveries so often...and a doctor DOES NOT know anyone's time of exit from this world...not that he gave me one, but I just wanted to type that for some who may need to hear it again...I understand)
4. Was not asked to go into a clinical trial, or if I was even able to. The words were not even mentioned.
5. Have had no scan of any kind at any time on any other part of my body to see if there is anything elsewhere.
6. I am being treated like a typical older woman/pre/post menopausal with this cancer, not like someone in their 20s. And everything about me and this experience is NOT typical. My body is different than an older woman's. Example, I asked a doc how the # of radiation days was decided upon and he replied "years and years of research and taking into account balancing the negative effects with the positive ones." Back then I was clueless but now I am like, "Well, how much of that research was on someone my age?" "And in my good general health with this cancer?" "How much was done on some one with stage 4?" (there is not a lot on stage 4 research for this cancer). I can handle a few extra radiation rounds than others...I can handle a few more chemo rounds than others. What if a few extra chemos or radiations could be the life saver for me? I am not your typical patient with this cancer!
7. And now, my chemo being delayed...I guess, I don't want to feel like a number. I want to feel like my team is behind me and fighting along with me and they believe and think it important to go through the process in a timely manner. Like it matters that I only wait 4 weeks between chemo and rads and chemo again...not more. Give it to me on the schedule you gave to me!
8. At the beginning of the whole journey when finding out I had cancer, I was only told that the most important thing to know was how far the cancer got into my myometrium (uterine wall) to determine the next course of action (chemo, rads). No one told me it could travel through my right fallopian tube and attach to my rectum and free float through my abdominal region...so, when I was told that I was like, "What? I was only told it mattered how far into my myometrium!" [No growth was found on my ovaries or fallopian tubes or cervix or in my lymph nodes (only 13? were tested)...well, at least I think no growths were found in any of these other spots (I find myself second guessing sometimes).]
9. OK, this is an add on from my original post, I can't believe I forgot this one --> neutropenic fever and the fissure. The oncologist in Sarnia who first treated me for these 2 things said that I should call my doc in London so I could have follow up. Well, I did just that and was told (not verbatim) "We don't need to know about the fever. There is nothing we can do for the fissure, take some tylenol before you have a bowel movement." Hmmm, we all know what happened with that fissure...and I am still dealing with the stupid thing. I felt like I hit that brick wall I kept hitting going through the 5 doctors before I was diagnosed. Do they care??? I still wonder.
10. Oh, and one more I forgot --> genetic testing. Umm, being so rare to get this cancer at this age, I have been asked by other oncologists if I have had genetic testing done (i.e. for the lynch syndrome). It has not been mentioned to me at all by my care "team."
Some of this may be irrational, some of it may be rational. But the funny thing is that we will not know. Time must march on, as it does any way, whether we want it to or not. Over time we will know if I am "cured" (tricky word) or if new research leads to new ways of treatment. Case in point, I have read a story of a woman with this cancer, stage 3, who was given the option of chemo 2 years ago. Now, chemo is considered a possible beneficial course of action for the patient at this stage of the cancer so, I think it is standard now (well, unless someone forgoes modern medicine).
Sometimes, I can tell when members of my health care team don't know I am stage 4 as compared to when they know I am. I get puppy dog eyes afterwards...I get the head tilt...I get the soft, "How are you today?"...Bless their hearts...they do mean well but I am like "What! I am fighter. I am sick...I don't have a death sentence! FIGHT! You chose the job, I landed in your "to do" pile, so let's get doing! Let's sing a fight song together...let's do the fight dance! WOoHOo!"
I do realize I can die and I do think about my funeral and details of the like, but I do plan on fighting this damn thing! Step up! Fight with me! Don't leave me second guessing!
Cheers,
Liz
Saturday, May 5, 2007
Flying
I flew out here, to Chicago, and I would like to share my airplane stories. First, because my hair is so short and people stare at me all the time because of this (and some whisper to others they are with) I thought I would wear my "Hug Me. I'm not contagious. It's just cancer" shirt. I thought I looked swell as I was wearing a cool pair of AE capri pants. I do have a hat I like to wear but it really does not bother me to go with my short (maybe 1.5 cm) hair...if I wear makeup and feel I look swell, I just tell myself people are staring at me because I look like an in vogue model with the daring short hair look. Anywho, I actually got 2 hugs from strangers! That made me smile big and wide. Pretty cool eh! The one woman had just entered remission from liver cancer in August, which she has lost her sister and father to.
The second story I have related to the take off. I have flown at least a dozen times, probably more, so I am used to everything about it, but this one was different. We taxied for a bit then lined up on the runway for takeoff. Just as the plane started to go really fast, Jason came into my head. I can't explain it, it was like, I was reading this magazine, put it in the little pocket in the seat in front of me, then looked out the window to watch...and all of a sudden Jason hit me. I was a little baffled as to the reasoning then I thought that it must be from the speed of the takeoff mixed with the excitement I was feeling. It reminded me of going on roller coasters and other adrenaline/thrill-seeking rides that Jay, me, and Dad always enjoyed on family vacations (Mom always waited patiently at the "exit" for us to return, never daring the rides). The last trip I went on with Jason was the summer before the hellish year just past. We went to Canada's Wonderland together with Neil. Jay and I enjoyed all the thrill seeking rides together while Neil waited at the "exit." Jay and I had a good time together and recalled vacations to parks with our parents and we talked about our lives, etc, while we waited in the lines. We really enjoyed each other's company and laughed. The three of us also went to the water park and had some good times in there. Then we went out to dinner and had a great feast. It was so much fun.
So, I am pretty sure that is why I felt Jason, for a split second I experienced the sheer ecstasy of a thrill ride and all I felt was the happy moments Jay and I had together. I think I am not explaining it too well here, but, I guess, some experiences we have are for ourselves...too difficult to justify or limit using words.
I just realized something, I don't have anyone to go on the thrill-seeking rides with me anymore.
Liz
The second story I have related to the take off. I have flown at least a dozen times, probably more, so I am used to everything about it, but this one was different. We taxied for a bit then lined up on the runway for takeoff. Just as the plane started to go really fast, Jason came into my head. I can't explain it, it was like, I was reading this magazine, put it in the little pocket in the seat in front of me, then looked out the window to watch...and all of a sudden Jason hit me. I was a little baffled as to the reasoning then I thought that it must be from the speed of the takeoff mixed with the excitement I was feeling. It reminded me of going on roller coasters and other adrenaline/thrill-seeking rides that Jay, me, and Dad always enjoyed on family vacations (Mom always waited patiently at the "exit" for us to return, never daring the rides). The last trip I went on with Jason was the summer before the hellish year just past. We went to Canada's Wonderland together with Neil. Jay and I enjoyed all the thrill seeking rides together while Neil waited at the "exit." Jay and I had a good time together and recalled vacations to parks with our parents and we talked about our lives, etc, while we waited in the lines. We really enjoyed each other's company and laughed. The three of us also went to the water park and had some good times in there. Then we went out to dinner and had a great feast. It was so much fun.
So, I am pretty sure that is why I felt Jason, for a split second I experienced the sheer ecstasy of a thrill ride and all I felt was the happy moments Jay and I had together. I think I am not explaining it too well here, but, I guess, some experiences we have are for ourselves...too difficult to justify or limit using words.
I just realized something, I don't have anyone to go on the thrill-seeking rides with me anymore.
Liz
Wednesday, May 2, 2007
Chicago!
I am sooooo excited...so excited that I accidently threw out the steroids I need for my chemo next week. I am going to Chicago to see Kimmy Ann and her family there! I can't wait! I fly out tomorrow. I have some new outfits and I am all ready to go. Well, I am not packed or anything, I like to do that last minute; really is exciting that way.
This change of scenery is sooooo badly needed. New surroundings, different places, and new people! I am so excited to go. It just worked out too! I had booked a flight (got a great deal!) then realized that my chemo was due for sometime next week. I called the chemo clinic to find out...did I overbook myself? I thought...but no no! Things worked out great. I get back Thursday night just in time for chemo Friday morning! Whew!
On a less high of a note. Had a friend find out that the cancer is no longer responding to the treatment. So frustrating! This is such a nasty disease! I read somewhere that those who suffer are really called to be "saints" in God's eyes, here on earth.
Liz
This change of scenery is sooooo badly needed. New surroundings, different places, and new people! I am so excited to go. It just worked out too! I had booked a flight (got a great deal!) then realized that my chemo was due for sometime next week. I called the chemo clinic to find out...did I overbook myself? I thought...but no no! Things worked out great. I get back Thursday night just in time for chemo Friday morning! Whew!
On a less high of a note. Had a friend find out that the cancer is no longer responding to the treatment. So frustrating! This is such a nasty disease! I read somewhere that those who suffer are really called to be "saints" in God's eyes, here on earth.
Liz
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