So what to write? Nothing good at this point. Still seeing doctors and doing tests....seems like an endless task and sometimes a waste of precious time. Then the rational part takes over and I know that a few weeks or a couple of months in the life of cancer is not a long time ...unless you are in the eleventh hour. Which I am not !!!!!
So, at this point it looks like major surgery is called for ......nothing minor ever seems to be my way. Saw the ortho surgeon after much phone calls and drumming of fingers ( read smacking of fists) . I was at the point of thinking we should fine someone else but my oncologist didn't agree. His analogy (of which he has many) was that if you wanted good food you went to the place where all people go! I even took the liberty of phoning myself , leaving a message as they never seem to answer. Polite but detailed. Don't know if it worked but had an appt four days later . Must admit though I do like him ......very easy to talk to and explains thing well and in a way that you feel part of the team. That is important to me as I want to be "in the loop" . So we do more tests!
Seems that the cancer has gone into the bone and quite a bit of the bone. Not common of course! He believes he can remove the affected bone and rebuild it so my pants don't fall down ....his words not mine :) Seems bones have very practical purposes , as well as essential ones. Long and very painful surgery and that is just his part. Then here's the other half of the surgery that my oncologist will perform ..... It will be very long and painful according to them both! Oh goody !
So, what does one do in the meantime......that is the part I am trying to figure out......not feeling very good, and also a bit scared. Honestly, at this point I am numb ...... Need more time for it to process and sink in......it's shitty cause one of the tests is a bone scan to make sure it has not gone anywhere else. Thinking if it has not much point in doing the surgery ....at least the hip part..... Like closing the barn door once the horse is gone .
So we wait, and pray!
Saturday, November 29, 2014
Tuesday, November 11, 2014
Angry .....frustrated......I hate the word 'rare'
As I sit and think, I wonder if I should write this post. It is not going to be a light, cheerful one that makes fun of the seriousness of cancer illness. It is one that will be angry and frustrated. I can't seem to get past these feelings, as hard as I try.
I am so angry! I did exactly what I was suppose to do. I learnt to listen to my body and forgo numerous tests in order that I could have a 'normal' life in the midst of a cancer diagnoses. I took care of myself, went for my regular check ups. Agreed that it wasn't necessary to constantly have scans, MRI, or even blood tests. I lived my life.....somewhat naive I feel now. On Wednesday when I went for my consultation I really didn't think I was going to have any great revelations to deal with. I knew the drill. I had a good handle on what was going on inside of me and had accepted that it was time to deal with the tumour. Never, never in a million years did I expect to hear "it has invaded the bone". Ovarian Cancer doesn't invade the bones. Epithelial cancer barely invades tissue and organs, never mind the bone. It is the one cancer that is different in this way than almost all others, its unique in that way - rare. If it does attach itself to bowel, bladder, muscle etc, it is a very superficial invasion. I have studied this disease, read the articles, investigated the medical findings. Ovarian cancer is one of those cancers that although deadly , does not invade the bone.
Then why did mine? It's so uncommon that the literature uses the expression "extremely rare", not rare but extremely rare. I know that 'rare' is a word that has been used to describe me and my illness, but somehow this one missed me. So when I heard this last week, I almost fell off my chair. I know that I didn't retain much else of the meeting because my daughter kept correcting me on the way home about what had been said. I was 'gob smacked' as one friend put it.
I have gone online (not always a good thing) to read up on this new information, and it has been very hard to find anything written about it. First I thought that I would look at the anatomy of the hip especially since biology was not my best subject. That was interesting but not very helpful. Then I decided to look up OVCA metastasis to bone. Well I was able after a lot of digging to come across ONE article written in 2010 about two women from Asia who had bone metastasis. The article did say that the prognosis in such a situation was POOR. And both women died!!!!! So that's a 100% mortality. Now both these women also had multiple sites so I have one up on them....mine is only in one place. Also, it seems that more research has taken place since 2010....another one for the expression "the longer you live with cancer, the longer you live".
I guess I am angry because I am going to that place of "what if". What if I had surgery earlier would that have prevented this from happening. Maybe, but who was even thinking about it. I know I wasn't and my doctor wasn't.....I feel he was just as surprised as me. So, I am angry but not at anyone, just at the fact that if it's rare it most probably will happen to me. Now, I know I should probably go and buy a lottery ticket and see if this extends to other such rare occurrences the only thing is when I don't win I will be even more angry !!!!!!!
Well, I guess I will be angry for awhile. And please, please don't tell me how lucky I am that they still want to try and get it.....I know that....but for the moment I just want to be angry and feel sorry for myself. I won't let it be for long......but at least give me a moment to vent before I have to get back on my 'happy bus'.
I am so angry! I did exactly what I was suppose to do. I learnt to listen to my body and forgo numerous tests in order that I could have a 'normal' life in the midst of a cancer diagnoses. I took care of myself, went for my regular check ups. Agreed that it wasn't necessary to constantly have scans, MRI, or even blood tests. I lived my life.....somewhat naive I feel now. On Wednesday when I went for my consultation I really didn't think I was going to have any great revelations to deal with. I knew the drill. I had a good handle on what was going on inside of me and had accepted that it was time to deal with the tumour. Never, never in a million years did I expect to hear "it has invaded the bone". Ovarian Cancer doesn't invade the bones. Epithelial cancer barely invades tissue and organs, never mind the bone. It is the one cancer that is different in this way than almost all others, its unique in that way - rare. If it does attach itself to bowel, bladder, muscle etc, it is a very superficial invasion. I have studied this disease, read the articles, investigated the medical findings. Ovarian cancer is one of those cancers that although deadly , does not invade the bone.
Then why did mine? It's so uncommon that the literature uses the expression "extremely rare", not rare but extremely rare. I know that 'rare' is a word that has been used to describe me and my illness, but somehow this one missed me. So when I heard this last week, I almost fell off my chair. I know that I didn't retain much else of the meeting because my daughter kept correcting me on the way home about what had been said. I was 'gob smacked' as one friend put it.
I have gone online (not always a good thing) to read up on this new information, and it has been very hard to find anything written about it. First I thought that I would look at the anatomy of the hip especially since biology was not my best subject. That was interesting but not very helpful. Then I decided to look up OVCA metastasis to bone. Well I was able after a lot of digging to come across ONE article written in 2010 about two women from Asia who had bone metastasis. The article did say that the prognosis in such a situation was POOR. And both women died!!!!! So that's a 100% mortality. Now both these women also had multiple sites so I have one up on them....mine is only in one place. Also, it seems that more research has taken place since 2010....another one for the expression "the longer you live with cancer, the longer you live".
I guess I am angry because I am going to that place of "what if". What if I had surgery earlier would that have prevented this from happening. Maybe, but who was even thinking about it. I know I wasn't and my doctor wasn't.....I feel he was just as surprised as me. So, I am angry but not at anyone, just at the fact that if it's rare it most probably will happen to me. Now, I know I should probably go and buy a lottery ticket and see if this extends to other such rare occurrences the only thing is when I don't win I will be even more angry !!!!!!!
Well, I guess I will be angry for awhile. And please, please don't tell me how lucky I am that they still want to try and get it.....I know that....but for the moment I just want to be angry and feel sorry for myself. I won't let it be for long......but at least give me a moment to vent before I have to get back on my 'happy bus'.
Sunday, November 9, 2014
Rules of consultations!!!!!
Well its been a few days since 'my news' and I have had time to digest and think. Firstly, I realize that I have forgotten the rules of consultations. The most important being, write down what is said especially if there are names or anatomy or individuals mentioned. My daughter was there and she has corrected me on some of what I had thought I heard. But again, you would assume after this many years I would at last have a pen and paper. Actually, in the first couple of years I not only had a pen and paper but also and entire binder divided into sections that contained all the test results, nurses notes etc. I am sure that some people in the waiting room may have mistaken me for a drug rep I looked so official.
I have mellowed since then obviously as now I don't even carry the basics.
So, anyone beginning this journey, and my heart goes out to you, the best advice I can give is to have:
1. Another person with you for a second set of ears. Ears is the operative word here. My rules stated that the individual is not allowed to speak before receiving my permission. I must admit that not all of my friends or family have followed this rule but those who never got asked back now know why!!!! Not that your questions or queries weren't appreciated its just that 'driving the bus' part.
2. At least a pen and paper, preferably a note book so that you can keep all your notes together from each meeting. I would jot down questions before I went in to ask in order that I didn't get too overwhelmed and forget. There is nothing worse than getting home and realizing that you forgot to get a prescription for your bowels etc. Also, I find when you take notes often the doctors speaking slower!
So that is my advice....which I haven't been following lately but will definitely do so at my next appointment. This one with the orthopedic surgeon. I know nothing of the anatomy of the hip, except that little ditty : the hip bones connected to the leg bone....which in this case has not been very helpful. I did try and go on the Internet to see if I could make sense out of the news, but I can't really remember the names of the bones he mentioned. I have a vague idea of where and what but it would have been helpful to have the parts of the bones written down. I thought the hip bone was a bone.....it seems that it is not really the actual name for the bone in your hip. It is made up of three bones, that are separate when you are born and then fuse together as you grow. So from what I can make our it is the iliac spine part of the hip bone that is affected I think! Anyways not important for now will know more soon.
So, as you can see I have been busy trying to become an orthopedic specialist as my control issues are in high gear. I don't know what I think this will change in the grand scheme of things but at least for the hour or so that I am absorbed in the information I feel in control. When first diagnosed with OVCA I tried to become an oncologist too. I have learnt a lot in the past 13 years, more than I ever learnt in school taking science, biology or chemistry in school. I guess when you life is on the line you find the information my more important and pertinent. I don't think the knowledge has helped in any way with my recoveries or my journey, but it sure has kept me busy when I have felt a little crazy. It also has given many people in my life a break from my frenzy ramblings. So, no matter what it has served some purpose in my life .......well am off to the Internet yet again!
I have mellowed since then obviously as now I don't even carry the basics.
So, anyone beginning this journey, and my heart goes out to you, the best advice I can give is to have:
1. Another person with you for a second set of ears. Ears is the operative word here. My rules stated that the individual is not allowed to speak before receiving my permission. I must admit that not all of my friends or family have followed this rule but those who never got asked back now know why!!!! Not that your questions or queries weren't appreciated its just that 'driving the bus' part.
2. At least a pen and paper, preferably a note book so that you can keep all your notes together from each meeting. I would jot down questions before I went in to ask in order that I didn't get too overwhelmed and forget. There is nothing worse than getting home and realizing that you forgot to get a prescription for your bowels etc. Also, I find when you take notes often the doctors speaking slower!
So that is my advice....which I haven't been following lately but will definitely do so at my next appointment. This one with the orthopedic surgeon. I know nothing of the anatomy of the hip, except that little ditty : the hip bones connected to the leg bone....which in this case has not been very helpful. I did try and go on the Internet to see if I could make sense out of the news, but I can't really remember the names of the bones he mentioned. I have a vague idea of where and what but it would have been helpful to have the parts of the bones written down. I thought the hip bone was a bone.....it seems that it is not really the actual name for the bone in your hip. It is made up of three bones, that are separate when you are born and then fuse together as you grow. So from what I can make our it is the iliac spine part of the hip bone that is affected I think! Anyways not important for now will know more soon.
So, as you can see I have been busy trying to become an orthopedic specialist as my control issues are in high gear. I don't know what I think this will change in the grand scheme of things but at least for the hour or so that I am absorbed in the information I feel in control. When first diagnosed with OVCA I tried to become an oncologist too. I have learnt a lot in the past 13 years, more than I ever learnt in school taking science, biology or chemistry in school. I guess when you life is on the line you find the information my more important and pertinent. I don't think the knowledge has helped in any way with my recoveries or my journey, but it sure has kept me busy when I have felt a little crazy. It also has given many people in my life a break from my frenzy ramblings. So, no matter what it has served some purpose in my life .......well am off to the Internet yet again!
Friday, November 7, 2014
WHAM ......life hits again!
Some times I think I am very naïve about the way life works. I write about how it sneaks up on you and hits you in the face....and then I go about my day as if nothing surprising is going to happen.
Well, Wednesday was a day that life went WHAM, BAM, SLAM!!!!! And it wasn't a super hero's cartoon strip. Now, let me say that I have come back to some form of equilibrium and I am fine. I am more upset with the fact that I was so certain nothing new would be revealed. I laugh that I wrote a post about how life is never what you think and then am surprised when it happens. I believe perhaps God was trying to prepare me for this but of course I wasn't listening.
So the consultation didn't go quite as planned. We are still doing surgery but I have yet to get a date because there was a bit of a surprise in the MRI. I now have to see a second surgeon for a consult who will assist my oncologist. That specialist is an orthopedic surgeon! It seems that the tumor has invade my hip bone. DO YOU KNOW HOW RARE THAT IS! For those who have been on this journey with me for sometime.....that won't surprise anyone. Rare, of course it would happen , I am the RARE one. If it isn't common, normal, or the usual it will happen to me. Now in some ways the fact that I am still alive is RARE. So as in everything this is a double edged sword....there is good RARE and there is bad rare.
What this means for the moment is that I need to meet with a surgeon who specializes in bones. Then he and my oncologist will set a date for surgery. I guess it is not all gloom and doom. There is a very good chance that they can remove the bone that is affected......so until I talk to him I wait and wonder what next will knock me off my chair!!!!
WHAM, BAM,. SLAM......love those words they are so appropriate!
Well, Wednesday was a day that life went WHAM, BAM, SLAM!!!!! And it wasn't a super hero's cartoon strip. Now, let me say that I have come back to some form of equilibrium and I am fine. I am more upset with the fact that I was so certain nothing new would be revealed. I laugh that I wrote a post about how life is never what you think and then am surprised when it happens. I believe perhaps God was trying to prepare me for this but of course I wasn't listening.
So the consultation didn't go quite as planned. We are still doing surgery but I have yet to get a date because there was a bit of a surprise in the MRI. I now have to see a second surgeon for a consult who will assist my oncologist. That specialist is an orthopedic surgeon! It seems that the tumor has invade my hip bone. DO YOU KNOW HOW RARE THAT IS! For those who have been on this journey with me for sometime.....that won't surprise anyone. Rare, of course it would happen , I am the RARE one. If it isn't common, normal, or the usual it will happen to me. Now in some ways the fact that I am still alive is RARE. So as in everything this is a double edged sword....there is good RARE and there is bad rare.
What this means for the moment is that I need to meet with a surgeon who specializes in bones. Then he and my oncologist will set a date for surgery. I guess it is not all gloom and doom. There is a very good chance that they can remove the bone that is affected......so until I talk to him I wait and wonder what next will knock me off my chair!!!!
WHAM, BAM,. SLAM......love those words they are so appropriate!
Wednesday, November 5, 2014
Juggling LIfe.............
I began a post this morning very seriously and morose. Didn't really want to write but felt that often that is the time I need to the most. Then life intervened.....the dog needed to be walked. Isn't that what happens all the time? We are seriously thinking about all the problems of our world (meaning my little part thereof) and .....and it happened again! Writing along and the dog decides to jump up on my white love seat. Which wouldn't necessarily be a huge problem (even though she isn't allowed) but you see she came into heat last weekend......now that's a problem!!!!! Another snag as I had her scheduled to be spayed next week......life is so unpredictable!!!!!!
I realize that we are constantly looking one way assuming that is where our life is happening and WHAM (always wanted to write that :) our real life knocks us from the other side. Usually with just the mundane, everyday, easily dealt with problems, but occasionally (again an interruption...cat knocked over the baby gate). By the way I live in a menagerie of animals in case anyone is interested.
as I was saying, but sometimes life is big, and ugly and not so easily fixed. It is only at those times that we seem to be aware that our world is very much out of our control. Today I am more aware of just how unpredictable it is. I just usually fix the little interruptions and move on. Well, can't do that today! Off to see the oncologist and see what he has to say. Had all the tests and now we 'consult'. So life is interrupting in one of those 'big' ways and I am not happy!!!!! Even though I won't be finding out anything new (or hope not) but just the idea that this is not what I want to be doing today. I am at the mercy of the universe....which in reality is how I am always but don't notice because I live with this false sense of control and order.....and then WHAM (just had to write that again lol) I have to deal with something I don't want to, can't fix, or even feel is not right. All those adjectives seem to describe my life these days. I just want to sit and read, and knit, and play with my granddaughter but instead I have to live my life. Which obviously is more than just those simple things.
I did hear a quote yesterday that I thought was very good: "the difference between a happy ending and a sad ending is where you decide to stop the story" SO so true!!!!! This from a man who was lost at sea in a rubber dingy for 76 days......was rescued and then a few years later diagnosed with cancer!!!!!! My story is still unfolding, as is every one's no matter what the situation, so I don't even know if it will be happy or sad.....but if I have my choice I will choose a 'happy ending'! So, as I go about my day today I will recognize the 'real' life that is taking place around me rather than the life I think I am living today. It certainly makes for an unpredictable, often uncomfortable way to be, but entirely more interesting than the plans that I had set out.
One quote that I often use as my mantra during times like this (which are now that I see all the time!!)
is:
"if you want to give God a laugh, tell God your plans for the day".......
.Obviously, God laughs a lot while watching me try to keep all the balls in the air.......today I am throwing one up and letting God catch it......easier to juggle with less balls!!!!!
I realize that we are constantly looking one way assuming that is where our life is happening and WHAM (always wanted to write that :) our real life knocks us from the other side. Usually with just the mundane, everyday, easily dealt with problems, but occasionally (again an interruption...cat knocked over the baby gate). By the way I live in a menagerie of animals in case anyone is interested.
as I was saying, but sometimes life is big, and ugly and not so easily fixed. It is only at those times that we seem to be aware that our world is very much out of our control. Today I am more aware of just how unpredictable it is. I just usually fix the little interruptions and move on. Well, can't do that today! Off to see the oncologist and see what he has to say. Had all the tests and now we 'consult'. So life is interrupting in one of those 'big' ways and I am not happy!!!!! Even though I won't be finding out anything new (or hope not) but just the idea that this is not what I want to be doing today. I am at the mercy of the universe....which in reality is how I am always but don't notice because I live with this false sense of control and order.....and then WHAM (just had to write that again lol) I have to deal with something I don't want to, can't fix, or even feel is not right. All those adjectives seem to describe my life these days. I just want to sit and read, and knit, and play with my granddaughter but instead I have to live my life. Which obviously is more than just those simple things.
I did hear a quote yesterday that I thought was very good: "the difference between a happy ending and a sad ending is where you decide to stop the story" SO so true!!!!! This from a man who was lost at sea in a rubber dingy for 76 days......was rescued and then a few years later diagnosed with cancer!!!!!! My story is still unfolding, as is every one's no matter what the situation, so I don't even know if it will be happy or sad.....but if I have my choice I will choose a 'happy ending'! So, as I go about my day today I will recognize the 'real' life that is taking place around me rather than the life I think I am living today. It certainly makes for an unpredictable, often uncomfortable way to be, but entirely more interesting than the plans that I had set out.
One quote that I often use as my mantra during times like this (which are now that I see all the time!!)
is:
"if you want to give God a laugh, tell God your plans for the day".......
.Obviously, God laughs a lot while watching me try to keep all the balls in the air.......today I am throwing one up and letting God catch it......easier to juggle with less balls!!!!!
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