Finally! After all these months - there is a plan!! I saw an oncologist last Thursday (Sept 20th) at the Kelowna Cancer clinic. I am to start chemo this coming week. Still waiting to hear exactly what date. The doc tells me it is an aggressive chemo treatment but thinks my body is still strong enough to withstand it. It consists of two types. One is an oral treatment, the other is an IV procedure. I DON'T like that as I am an extreme needlephobe. But I'll just put some blaring music on my ipod and try and distract myself. The good part is that the IV treatment is only once every three weeks and takes ONLY about two and a half hours.
The side effects you ask? LOTS!! Maybe my head will fall off??? Kidding aside, I think most of the side effects are the normal ones; nausea (which they say they have great drugs for), fatigue (more than I have now??), "thinning" of the hair (oh yes, chemo cut here I come), sensitivity to cold (how am I ever going to plow my road this winter?), hand-foot skin reaction (tingling, redness, numbness, severe pain, swelling, dryness, itchyness, blisters, ulcers -oh, how lovely!!), vomiting and diarreah (no change there, I already have these symptoms and I haven't started chemo yet!!), mouth sores (hmmm, maybe I'll have to quit talking - maybe not a bad thing), and a repressed immune system. Yes, I will be the picture of health!! But the doc was very reassuring. She said not everybody has ALL the side effects!!
But it IS something! I must admit though, I am a "bit" angry at this whole process. It has been 8 months since I have been diagnosed and nothing has been done up till now. I can't help thinking that if they had just treated me sooner, I might have avoided all the nasty sympoms I have been experiencing this past while. But the "what if's" are pointless, so I am trying to get past that. Now, I am hoping for some relief and some extended time. Not sure yet how I will respond to the chemo. Only time will tell.
So for now, I go "day-by-day".
Sunday, September 23, 2012
Sunday, September 16, 2012
YO-YO
I am beginning to question whether this blog was such a good idea. I am not questioning my motives for making my health issues so public; I still believe that the truth and being upfront is the best way to keep the facts straight. And it gives my family and friends the time they need to prepare for what may come and/or to open the door to questions and important discussion if they need (or want) to. BUT, I am not sure it is fair to take so many of you on the emotional and difficult journey that we are on.
I guess I was a little too self-absorbed to think about how this constant change in my diagnosis and prognosis was affecting so many of the people I care about. To take you on all the highs that come with new hope, and then the lows when that hope is dashed.....well, it just isn't right!! I wish with all my heart that we ("we", in the meaning of all of us, Neil and I, my incredible family, and all my wonderful friends that have been so supportive) did not have to think about this, let alone deal with it. But, I have started this journal and so feel I must continue it. I will not leave you with a cliff hanger!!
So today, I write so soon after my last blog post, because my "status" has changed once again. After my last post on september the 14th, I received another phone call from my doctor at the Cancer Centre in Calgary. He reassured me that he had not "given up" on my case, that he had JUST gotten back a final pathology report from cultures they had taken from the tumor (lovingly nick named my "evil twin") they removed from my abdomen in January. This report indicates that the primary could be, afterall, my appendix (the two pathology reports that came in last week reinforced the original "unknown primary" diagnosis). So, again, there is a light at the end of the tunnel. Hope has been restored. However, I am not going to get too excited about this. I am too afraid that those hopes will be short lived and I am not sure any of us could handle another crash.
The unfortunate part of the latest results is that my doctor will not do the surgery YET. He wants me to undergo regular chemotherapy (but at least they should be able to get a better idea of what kind of chemo to hit me with), see if the cancer responds to it, and then he MIGHT do the surgery.
And that is the momentary long and short of it. I am still waiting to get into chemotherapy. I am hoping it will be VERY soon. All this waiting is very exhausting. I will keep you appraised of any new developments.
As to where the chemo will take place, I think I will be treated out of the Southern Interior (Kelowna) Cancer Clinic but am hoping the actual chemo will happen in Grand Forks or Trail. It would be nice to recoup after the chemo in our own home. Plus, the less we have to travel the mountain passes come winter, the better.
One last thing. I doubt if I will be able to email all of you that are not on the "Followers" list, as I have been, when I update the blog. So if you want the latest scoop, your best bet is to use the "Follow by email" option that I think comes up on my blog page. Again, don't feel obligated, it just might be easier plus the email should take you directly to the new post.
Thank you for all the love and support.
Dana
I guess I was a little too self-absorbed to think about how this constant change in my diagnosis and prognosis was affecting so many of the people I care about. To take you on all the highs that come with new hope, and then the lows when that hope is dashed.....well, it just isn't right!! I wish with all my heart that we ("we", in the meaning of all of us, Neil and I, my incredible family, and all my wonderful friends that have been so supportive) did not have to think about this, let alone deal with it. But, I have started this journal and so feel I must continue it. I will not leave you with a cliff hanger!!
So today, I write so soon after my last blog post, because my "status" has changed once again. After my last post on september the 14th, I received another phone call from my doctor at the Cancer Centre in Calgary. He reassured me that he had not "given up" on my case, that he had JUST gotten back a final pathology report from cultures they had taken from the tumor (lovingly nick named my "evil twin") they removed from my abdomen in January. This report indicates that the primary could be, afterall, my appendix (the two pathology reports that came in last week reinforced the original "unknown primary" diagnosis). So, again, there is a light at the end of the tunnel. Hope has been restored. However, I am not going to get too excited about this. I am too afraid that those hopes will be short lived and I am not sure any of us could handle another crash.
The unfortunate part of the latest results is that my doctor will not do the surgery YET. He wants me to undergo regular chemotherapy (but at least they should be able to get a better idea of what kind of chemo to hit me with), see if the cancer responds to it, and then he MIGHT do the surgery.
And that is the momentary long and short of it. I am still waiting to get into chemotherapy. I am hoping it will be VERY soon. All this waiting is very exhausting. I will keep you appraised of any new developments.
As to where the chemo will take place, I think I will be treated out of the Southern Interior (Kelowna) Cancer Clinic but am hoping the actual chemo will happen in Grand Forks or Trail. It would be nice to recoup after the chemo in our own home. Plus, the less we have to travel the mountain passes come winter, the better.
One last thing. I doubt if I will be able to email all of you that are not on the "Followers" list, as I have been, when I update the blog. So if you want the latest scoop, your best bet is to use the "Follow by email" option that I think comes up on my blog page. Again, don't feel obligated, it just might be easier plus the email should take you directly to the new post.
Thank you for all the love and support.
Dana
Friday, September 14, 2012
August was great... September, not so much
Whoops! I wrote last month and then never actually posted it. So this one and the last one are coming to you at only a few days apart. Sincere apologies for not keeping you up to date.
So yes, August was a great month! It started with most of my family arriving for the long weekend. And it was a very long weekend. From the first arrivals to the last to depart, about two wonderful weeks. There were those who came early to prepare for the hordes, and those who stayed afterwards to help clean up the aftermath.
But we had an agenda and a theme this year. Saturday was "Burning Man" day. (for those of you that have not heard of Burning Man, just google it and you will find out all about a crazy wonderful annual event in the Nevada desert). We started out the day in costume
Sunday we had my "first annual wake". This was done in the spirit of hope and the expectations of this annual event for many years to come. It originated a few years back when we promised our mom that we would have a spectacular wake for her, but she insisted that she hated to miss a good party and wanted to partake in the event. So we decided to have one every year while she was still alive, so she would NOT miss the celebration of her life.
So we all put on our special "wake" hats (wish I had some pictures of those) and everyone took turns in telling touching, funny, emotional, AND embarrasing stories of events that we had shared over the past 57 years. It was wonderful in that most people never get to hear the stories and feelings that generally are said at a funeral. I feel very blessed that I got the chance to hear that, not only was I special to so many people, but also that I was a typical bratty (and not always such a good) kid and sibling. I was truely touched!!
The weekend events pretty much wound up with a spirited (and very competitive) 2nd annual Beer Pong championship tournament. Last years winners made a valiant effort at retaining their champion status but this years winners, Nathan and Kim (Nathans beautiful partner) gave them a run for their money. Championship belts, made especially for the event, were the just rewards for the winners. Below is a picture of Kelsey protecting her territory and preparing for the onslaught.
So yes, August was a great month! It started with most of my family arriving for the long weekend. And it was a very long weekend. From the first arrivals to the last to depart, about two wonderful weeks. There were those who came early to prepare for the hordes, and those who stayed afterwards to help clean up the aftermath.
But we had an agenda and a theme this year. Saturday was "Burning Man" day. (for those of you that have not heard of Burning Man, just google it and you will find out all about a crazy wonderful annual event in the Nevada desert). We started out the day in costume
From the risque
to the ridiculous (yes, that is me in my polkadot tutu)
and continued throughout the day with our own MacDonald version of tutorials/seminars. These were fun, crazy, carney types of entertainment demonstrated with the greatest of skill, style and expertise. Just a sampling included the "Picnic Cessna" as demonstrated here by Mira and Jeremy
and attempted here by Mira and Mike with not quite the same finesse
And then there was Kristen with her ukelele and her colorful entourage that performed a brilliant song and dance version of Tiny Tims "Tiptoe Through The Tulips".
But the "tutorials" were not all fun. Some were so very educational as well. We learned: how to Floss For Fun and Revenge, how to Use a Pee Funnel, and how to Make Fun Buns. And the list goes on.
The finale of the evening was a spectacular Burning Man. The first picture is just as we lit the fire below the burning man, and the second was of him in full flames. It was spectacular!
Sunday we had my "first annual wake". This was done in the spirit of hope and the expectations of this annual event for many years to come. It originated a few years back when we promised our mom that we would have a spectacular wake for her, but she insisted that she hated to miss a good party and wanted to partake in the event. So we decided to have one every year while she was still alive, so she would NOT miss the celebration of her life.
So we all put on our special "wake" hats (wish I had some pictures of those) and everyone took turns in telling touching, funny, emotional, AND embarrasing stories of events that we had shared over the past 57 years. It was wonderful in that most people never get to hear the stories and feelings that generally are said at a funeral. I feel very blessed that I got the chance to hear that, not only was I special to so many people, but also that I was a typical bratty (and not always such a good) kid and sibling. I was truely touched!!
The weekend events pretty much wound up with a spirited (and very competitive) 2nd annual Beer Pong championship tournament. Last years winners made a valiant effort at retaining their champion status but this years winners, Nathan and Kim (Nathans beautiful partner) gave them a run for their money. Championship belts, made especially for the event, were the just rewards for the winners. Below is a picture of Kelsey protecting her territory and preparing for the onslaught.
The rest of August was spent relatively quietly. My dearest and longest (notice I did not say "oldest") friend, Noni - and her fabulous husband David, drove all the way from Sue St. Marie, Ontario to visit. It was a few days of basking in the joy of a great long time friendship, the sharing of some great memories, some good chuckles, and a few stifled tears. It was with great sadness that I watched Noni and Dave drive away. The visit was too short and I am sure we both felt the heaviness of not knowing when, or if, we would see each other again.
August ended with a 5 day trip to Calgary for a Cardio workup. All results came out positive. The doc gave the "all is good to go for the surgery". Whew! That was a relief! Some good news regarding my health was very welcome.
And I should not have said in the title of this post that Sept was not so good. I had some wonderful visitors during the first 10 days. My lovely niece Leah, her husband Nick, and their most beautiful, smiley, happy little girl Cora came and spent a few days. What a joy to spend some one-on-one time with them. And the same with my dearest Aunt Kay who came a few days later. Usually family time means a gathering of 40 plus people and it is so hard to get any personal time with any one person. So these two visits were very special to me.
And now, unfortunately, the good news comes to an end. Last Friday, the doctor/surgeon in Calgary called to inform me that the surgery has been cancelled (although there is the tiniest, and I emphasize "tiniest" chance it may still go through, although I doubt it). This was devastating news for us. This was my last hope for a few more years of life. The reasons for the cancellation I am still very confused about (and still waiting for answers). It has to do, AGAIN, with having an unknown primary. I guess the doctor really thought it was from the ruptured appendix I had removed 15 years ago. It now appears to not be so, or cannot be definitely determined. And thus, the exact chemo bath of my peritoneal cavity, that was part of the surgery, is unknown. However, the doc did say I should get on some kind of systemic chemo IMMEDIATELY (easier said than done). But this again is kind of iffy. If they didn't know what kind of chemo to use in the surgery, I can't see them knowing what kind to use in the regular chemo treatment. Again, I am still waiting for answers and for an oncologist to get back to me.
Although I don't know for sure, I THINK that if they do give me chemo, it will be what they call "palliative chemo". It won't really do much for me. Maybe lesson my symptoms somewhat and for a short period of time. All this I will TRY to keep you better informed of as I learn more over the next few weeks.
I have, in the past two weeks, moved from the stage of discomfort into full blown pain. I am on pain killers all the time now. I will be connecting a little more now with the palliative counsellor in Grand Forks. And I have registered for the Home Care program. I am certainly not at the point where I need home care but they will be helpful with pain management and probably some of the emotional and psychological support Neil and I will be needing in the future.
So, yes! At the moment things are not very optimistic BUT we are still hopeful and are not discounting some reprieve from either chemo or some kind of that wacko alternative therapy. Please, be hopeful with us! And keep sending that good energy, those good vibes, and lots of prayers (or whatever you are comfortable with) my way. And especially send them to Neil. This is all so difficult for him and he needs all the support he can get.
My love to all!!
Wednesday, September 12, 2012
I'D RATHER..........
It's a game! I used to watch my beautiful, blonde, blue-eyed neices play when they were very young. It was really quite funny to watch these little innocents play this slightly morbid game. They called it "Would you Rather..?" It is kind of like Truth or Dare, except you ask each other questions that the others would HAVE to answer. And the questions went something like this: "would you rather stick your head in a lion's mouth or stick needles in your eyes?" or "would you rather eat a rattlesnake or jump off a cliff?" The options were never good but a choice had to be made.
This is a game I feel like I am playing at the moment. It seems my "options" are not good but I must choose.
It has been two months since my last post and it seems like a lot has happened. The first few weeks after my prognosis, Neil and I spent just trying to deal with the facts as they had been given us by the oncologist. It was tough, but resignation did set in (not sure the "acceptance" stage ever really came in to play) and I started to make plans for "settling my afffairs", and planning for my death. As I was considered Palliative, I went and saw a Palliative Care counsellor to discuss the hows and whats of dying. I learned there is a lot to do before dying, if one wants to leave with no mess or unsettled matters for those left behind.
Then there were more doctor's appointments and bloodwork to do. As our traditional medical system was leaving me high and dry with no option but to roll over and dy, I went to a oncological natureopath. He gave me some hope for a slightly longer life span (maybe an extra year, although no guarantees), a schwack of naturopathic pills to take, and an injection of some voodoo concoction that I inject into my abdomen every few days. All of these in the hope of slowing down the tumor growth and with any luck at all, to shrink them somewhat.
On June 14th, I went to my oncologist again and, although he wasn't refusing to see me any more, he more or less told me that there wasn't much point in my seeing him as he could better spend his time with patients that were going to live and that had some hope. Talk about abondonment!! Helplessness!! And hopelessness! How devastating it was to have my oncologist brush me aside. These are the people that are suppose to be part of my "cancer care team" and make sure that what life was left, would be of some quality! (But I have let my anger and disappointment in my doctor go. No point in harboring anger and resentment. It only makes me anxious.) I must say, I am extremely disappointed in our medical system!
BUT... I do now have a light at the end of the tunnel, thanks to a couple of friends that did a little researching (Thanks so much Marie and Heather!!!) There is a treatment that is for types of peritoneal cancer that can give a good chance of long term survival (although in the cancer world, long term survival means living 5 years after diagnosis. Which, at the moment is a lot better than the 4 to 10 months I have left based on the first prognosis). It means surgery, and it is a very major surgery with a long hard recovery. So last week I went to Calgary and met with the specialists that perform this surgery. They say I am a candidate for it, although with some kaveats. It is a risky surgery, and it is possible that once they open me up, the cancer might not be treatable and they will close me back up.
So here is where I am playing the game. Would I rather live for another 10 months (maybe a bit more if the naturopathic route works for me) or go through a surgery that is going to lay me flat and be very painful for at least 6 months. Neither is a nice option. But I am choosing life!! Life for a possible 5+ years. I am scheduled for surgery on September 27th!!
However, throughout this next few months, and after the surgery, I am also going the "alternative cancer therapy" route in the hopes that this will add more time to my life. I hate to depend solely on the traditional allopathic treatments for a remission or a temporary reprieve from this nasty disease.
There is one other "minor" health issue that needs addressing before they will operate. (Man oh Man, when it rains, it pours!!) They found a bit of "noise" in my heart, so they want do to a full cardio work up before the surgery to ensure my heart can pull me through the stress of the operation. I am still waiting to hear when that will happen, sometime in August they tell me.
It is now 10 months since this cancer has invaded our lives. It has taken it's toll on both Neil and I in ways we could never imagine. It truely has been an emotional, physical and mental/spiritual rollercoaster. But I am optimistic. Armed with good thoughts, hope, and a wonderful supportive group around me, I am in good spirits right now, and my health has not started to decline in any significant ways yet. I still have the constant abdominal discomfort, but no real pain. I need a nap every afternoon. And I have not the energy or stamina to do any major chores, although I still try. My crazy wonderful family is about to invade us again for the August long weekend. A head count of between 50 and 60 . I can't wait for the fun and games to begin!
Neil and I hope to be home for most of August and September, with the small side trip to Calgary for the cardio workup. So if anyone is in the neighborhood and wants to stop by, we would love to see you. But do call first to ensure we are home. Our plans and schedule seem to change on a daily basis.
And now, if you will excuse me, I have to go stick my head in a lions mouth!!
This is a game I feel like I am playing at the moment. It seems my "options" are not good but I must choose.
It has been two months since my last post and it seems like a lot has happened. The first few weeks after my prognosis, Neil and I spent just trying to deal with the facts as they had been given us by the oncologist. It was tough, but resignation did set in (not sure the "acceptance" stage ever really came in to play) and I started to make plans for "settling my afffairs", and planning for my death. As I was considered Palliative, I went and saw a Palliative Care counsellor to discuss the hows and whats of dying. I learned there is a lot to do before dying, if one wants to leave with no mess or unsettled matters for those left behind.
Then there were more doctor's appointments and bloodwork to do. As our traditional medical system was leaving me high and dry with no option but to roll over and dy, I went to a oncological natureopath. He gave me some hope for a slightly longer life span (maybe an extra year, although no guarantees), a schwack of naturopathic pills to take, and an injection of some voodoo concoction that I inject into my abdomen every few days. All of these in the hope of slowing down the tumor growth and with any luck at all, to shrink them somewhat.
On June 14th, I went to my oncologist again and, although he wasn't refusing to see me any more, he more or less told me that there wasn't much point in my seeing him as he could better spend his time with patients that were going to live and that had some hope. Talk about abondonment!! Helplessness!! And hopelessness! How devastating it was to have my oncologist brush me aside. These are the people that are suppose to be part of my "cancer care team" and make sure that what life was left, would be of some quality! (But I have let my anger and disappointment in my doctor go. No point in harboring anger and resentment. It only makes me anxious.) I must say, I am extremely disappointed in our medical system!
BUT... I do now have a light at the end of the tunnel, thanks to a couple of friends that did a little researching (Thanks so much Marie and Heather!!!) There is a treatment that is for types of peritoneal cancer that can give a good chance of long term survival (although in the cancer world, long term survival means living 5 years after diagnosis. Which, at the moment is a lot better than the 4 to 10 months I have left based on the first prognosis). It means surgery, and it is a very major surgery with a long hard recovery. So last week I went to Calgary and met with the specialists that perform this surgery. They say I am a candidate for it, although with some kaveats. It is a risky surgery, and it is possible that once they open me up, the cancer might not be treatable and they will close me back up.
So here is where I am playing the game. Would I rather live for another 10 months (maybe a bit more if the naturopathic route works for me) or go through a surgery that is going to lay me flat and be very painful for at least 6 months. Neither is a nice option. But I am choosing life!! Life for a possible 5+ years. I am scheduled for surgery on September 27th!!
However, throughout this next few months, and after the surgery, I am also going the "alternative cancer therapy" route in the hopes that this will add more time to my life. I hate to depend solely on the traditional allopathic treatments for a remission or a temporary reprieve from this nasty disease.
There is one other "minor" health issue that needs addressing before they will operate. (Man oh Man, when it rains, it pours!!) They found a bit of "noise" in my heart, so they want do to a full cardio work up before the surgery to ensure my heart can pull me through the stress of the operation. I am still waiting to hear when that will happen, sometime in August they tell me.
It is now 10 months since this cancer has invaded our lives. It has taken it's toll on both Neil and I in ways we could never imagine. It truely has been an emotional, physical and mental/spiritual rollercoaster. But I am optimistic. Armed with good thoughts, hope, and a wonderful supportive group around me, I am in good spirits right now, and my health has not started to decline in any significant ways yet. I still have the constant abdominal discomfort, but no real pain. I need a nap every afternoon. And I have not the energy or stamina to do any major chores, although I still try. My crazy wonderful family is about to invade us again for the August long weekend. A head count of between 50 and 60 . I can't wait for the fun and games to begin!
Neil and I hope to be home for most of August and September, with the small side trip to Calgary for the cardio workup. So if anyone is in the neighborhood and wants to stop by, we would love to see you. But do call first to ensure we are home. Our plans and schedule seem to change on a daily basis.
And now, if you will excuse me, I have to go stick my head in a lions mouth!!
Monday, May 28, 2012
Life List
So, I have never had a "bucket list" per se. Instead, I have a life list. It changes all the time, things move up and down on the priority scale and things go on and off it depending on what Neil and I are doing or where we are at in general terms. But it is always there. I often find myself saying something is on the life list, or it is definitely NOT on the life list. For example, things on the ON list this year included: getting the firewood in before the snow flies this fall, finishing our "outdoor kitchen", whitening my teeth, learning how to pack everything in a carry on when I go somewhere (this in response to my recent hauling around a HUGE suitcase everywhere I went and only wearing 3 items out of it), improve my email/letter writing skills (which includes actually writing someone back), organize my photo albums, cook more exotic foods, .....and the list goes on indefinitely.
There are not many things on my NOT list. That I can think of at the moment anyways.
But last week, my "life list" took on a whole new perspective. In one fell swoop, the list disintegrated in front of me.
Neil and I went to the oncologist last week, fully expecting (maybe in retrospect - hoping) him to tell us that the recent CT scan had still not shown any sign of the primary cancer and I could just carry on indefinitely until it eventually (inevitably?) made its ugly appearance. We were staggered when he informed us that the cancer covered the whole internal wall of my abdominal cavity (the periodontal cavity ??) And that there was nothing they could do about it. And then the horror, the shock, the disbelief, (I could be more descriptive here, but I think you get the idea) when he told us that the average lifespan of someone with this cancer is 6 months to a year. I don't know how long we sat there with our mouths gaping open, but it seemed a life time. How does one wrap their head around this kind of news??
There is not much more I can tell you at the moment. I think Neil and I were so shocked with the prognosis that we could not put together our thoughts enough to ask some pertinent questions. What I can tell you is that my body is already changing and reacting to the cancer. This past month I had severe abdominal pain and bloating. I thought it was just my intestinal system reacting to the colon cleanse we did a month or two back, or the more recent colonoscopy. (Whose body wouldn't react to THAT process!!) It wasn't. What is happening is the fluids that pass through the body (in and out and through different parts of the body via osmosis and through interior walls/membranes) are getting into my abdominal cavity but are not passing back out due to impermeable nature of the cancer. The fluids were building up and pressing on my stomach (eating was becoming very painful), my heart, and my diaphragm (giving me shortness of breath). Simple solution! Drain it! So last Thursday I went into the hospital and "was drained". They pulled out a gallon of fluid (no wonder I was bloated!). And in a matter of 2 hours I had lost another 10 pounds! And had incredible relief! So this is a process I will likely have to have on a periodic basis. Not sure how often yet. Guess I will know when the pressure starts to build again.
Other symptoms I have to look forward to (said tongue in cheek) is the abdominal walls starting to stick to my bowels (I guess this cancer has a gluey - is that really a word , gluey - nature to it) and my bowels will start to shut down. The consequences of that I prefer not to think of at the moment. I do have constant discomfort in my abdomen, but it is not painful. I am sure there are other things that will start to happen and/or shut down. We have a million more questions for the oncologist next time we see him.
So, as I have said, my life list has had some major revision this week. I still plan on learning how to travel with just a carry on (lots more trips to Victoria in the near future). I want to outlive my 11 year old dog. And I want to spend some quality time with Neil, my family and friends while my quality of life is still good. NOT on my life list is to wash my windows or clean my oven!! So if you come to visit, don't be surprised to find a scrowie (my Mom's word) house. I will try and keep the sheets clean for you!
And THAT is about it! I apologize if the honesty of this offends anyone. I just want it out in the open with no one whispering the "poor Dana" platitudes. Please don't hesitate to ask any questions regarding my health IF you want the truth. Two caveats however: if I start to bloat again (my belly really does get quite large), please don't ask me if I am pregnant!!!! And don't tell me I am looking great when I am not. But if I am in the grocery store and I hear someone yelling "hey Dana, how the bowels doin' today?", that's OK.
I was really hoping to be more profound at this stage, but I guess that is just not my nature. Maybe it will happen as time goes on. You will just have to stay tuned in for those possible enlightening insights. At this point I am just hoping to peacefully, gracefully, and with dignity - accept my fate, however and whenever it happens.
I do have some plans for future "blogs". Maybe I will even get to it. My love to all.
Dana
There are not many things on my NOT list. That I can think of at the moment anyways.
But last week, my "life list" took on a whole new perspective. In one fell swoop, the list disintegrated in front of me.
Neil and I went to the oncologist last week, fully expecting (maybe in retrospect - hoping) him to tell us that the recent CT scan had still not shown any sign of the primary cancer and I could just carry on indefinitely until it eventually (inevitably?) made its ugly appearance. We were staggered when he informed us that the cancer covered the whole internal wall of my abdominal cavity (the periodontal cavity ??) And that there was nothing they could do about it. And then the horror, the shock, the disbelief, (I could be more descriptive here, but I think you get the idea) when he told us that the average lifespan of someone with this cancer is 6 months to a year. I don't know how long we sat there with our mouths gaping open, but it seemed a life time. How does one wrap their head around this kind of news??
There is not much more I can tell you at the moment. I think Neil and I were so shocked with the prognosis that we could not put together our thoughts enough to ask some pertinent questions. What I can tell you is that my body is already changing and reacting to the cancer. This past month I had severe abdominal pain and bloating. I thought it was just my intestinal system reacting to the colon cleanse we did a month or two back, or the more recent colonoscopy. (Whose body wouldn't react to THAT process!!) It wasn't. What is happening is the fluids that pass through the body (in and out and through different parts of the body via osmosis and through interior walls/membranes) are getting into my abdominal cavity but are not passing back out due to impermeable nature of the cancer. The fluids were building up and pressing on my stomach (eating was becoming very painful), my heart, and my diaphragm (giving me shortness of breath). Simple solution! Drain it! So last Thursday I went into the hospital and "was drained". They pulled out a gallon of fluid (no wonder I was bloated!). And in a matter of 2 hours I had lost another 10 pounds! And had incredible relief! So this is a process I will likely have to have on a periodic basis. Not sure how often yet. Guess I will know when the pressure starts to build again.
Other symptoms I have to look forward to (said tongue in cheek) is the abdominal walls starting to stick to my bowels (I guess this cancer has a gluey - is that really a word , gluey - nature to it) and my bowels will start to shut down. The consequences of that I prefer not to think of at the moment. I do have constant discomfort in my abdomen, but it is not painful. I am sure there are other things that will start to happen and/or shut down. We have a million more questions for the oncologist next time we see him.
So, as I have said, my life list has had some major revision this week. I still plan on learning how to travel with just a carry on (lots more trips to Victoria in the near future). I want to outlive my 11 year old dog. And I want to spend some quality time with Neil, my family and friends while my quality of life is still good. NOT on my life list is to wash my windows or clean my oven!! So if you come to visit, don't be surprised to find a scrowie (my Mom's word) house. I will try and keep the sheets clean for you!
And THAT is about it! I apologize if the honesty of this offends anyone. I just want it out in the open with no one whispering the "poor Dana" platitudes. Please don't hesitate to ask any questions regarding my health IF you want the truth. Two caveats however: if I start to bloat again (my belly really does get quite large), please don't ask me if I am pregnant!!!! And don't tell me I am looking great when I am not. But if I am in the grocery store and I hear someone yelling "hey Dana, how the bowels doin' today?", that's OK.
I was really hoping to be more profound at this stage, but I guess that is just not my nature. Maybe it will happen as time goes on. You will just have to stay tuned in for those possible enlightening insights. At this point I am just hoping to peacefully, gracefully, and with dignity - accept my fate, however and whenever it happens.
I do have some plans for future "blogs". Maybe I will even get to it. My love to all.
Dana
Saturday, March 10, 2012
Doing the "Happy Dance"!!
After reviewing my blog, I see there are so many details and aspects of "my story" that I have left out and wanted to write about. But maybe that is better. I hate to subject you to some of my digresses and ramblings. And I had so wanted to make it more interesting with some pictures and a more appealing format. Oh well!
So today I am in an incredibly better frame of mind than I have been for some time now. It has been difficult to maintain a positive attitude with the uncertainty of where this cancer would lead me. The beginning of February, the doctors told me that my cancer was very aggressive and that I was looking at a year or two of treatments and followups. I was even told, in so many words, that I should "put my affairs in order". In my mind, I had been given a death sentence. Over the past six weeks I have mulled over the many different scenarios: intensive chemotherapy with good success, intensive chemo with only a slight increase in life span, or no chemo but with quality - of (however much) life - over quantity of life. But whatever scenario was to take place, any decisions were going to be made based on educating myself completely on my different options. But just the fact that this type of decision HAD to be made was terrifying. Mortality was slapping me in the face.
But today, I am doing the Happy Dance!! I have had a reprieve! After another CT scan last week, there was no sign of the primary cancer. Don't get me wrong, it doesn't mean that it is not there. It just means the cancer cannot be found and is "of unknown origin". So rather than willy-nilly treating me with chemo, they are not treating me at all. Their logic; chemo can do more harm than good at this point and if they treat something they cannot see or find, there is no way of telling if the chemo is doing any good. So yes, it is a reprieve only. The cancer is likely, eventually, to grow and show up and I might need treatment then. Just when (months or years?) is in the hands of the powers that be.
However, for the immediate future, I am not quite yet out of the woods. There are a few more tests I have to go through. There is still the colonoscopy to do. (The last one I was suppose to do in February got cancelled as I was so sick with the flu.) And they are going to do a CT scan on my head to make sure no cancer has metastasized to my brain. (I have had some vertigo the last six months.) My oncologist does not think this likely but wants to cover all basis. Then I have to see a Gastro-Intestinal oncologist/specialist on April 27, I assume to go over results of the colonoscopy. And then another CT scan mid May to make sure the cancer has not reared it's ugly head again, and finally the Medical oncologist again on May 22 to go over everything to date. After that, I assume I will continue to have, at least semi-annually, CT Scans indefinitely.
Meanwhile, I will carry on with my new diet and do everything I possibly can to create an environment in my body that is hostile to the growth of new cancer cells. I will eat, breath, and sleep all things healthy! (Does that mean the rum and cokes will have to go? Oh Nooooo!)
And Neil and I will take life much less seriously (that does not mean less valuably), have more fun, and pretend we have won the lottery (although right now I feel as if I had), and go to the sun and sand, drink those cocoa locos, and revel in each others company.
I will carry on making posts, but probably on the "month by month" schedule, as I learn more from the tests and doctors over the next few months. Who knows, maybe this will turn into a REAL "journey" blog, as Neil and I start our new lease on life and see more of the world.
Once again, thank you for all the good vibes, thoughts, energy and prayers sent my way. That might be what made the difference in the latest developments. I know they helped me through the last month, knowing I was loved and cared about.
Dana
PS. For those of you that were using my dananeil@lincsat.com email address, that address is now closed. My danamacb@gmail.com is the one I am using.
So today I am in an incredibly better frame of mind than I have been for some time now. It has been difficult to maintain a positive attitude with the uncertainty of where this cancer would lead me. The beginning of February, the doctors told me that my cancer was very aggressive and that I was looking at a year or two of treatments and followups. I was even told, in so many words, that I should "put my affairs in order". In my mind, I had been given a death sentence. Over the past six weeks I have mulled over the many different scenarios: intensive chemotherapy with good success, intensive chemo with only a slight increase in life span, or no chemo but with quality - of (however much) life - over quantity of life. But whatever scenario was to take place, any decisions were going to be made based on educating myself completely on my different options. But just the fact that this type of decision HAD to be made was terrifying. Mortality was slapping me in the face.
But today, I am doing the Happy Dance!! I have had a reprieve! After another CT scan last week, there was no sign of the primary cancer. Don't get me wrong, it doesn't mean that it is not there. It just means the cancer cannot be found and is "of unknown origin". So rather than willy-nilly treating me with chemo, they are not treating me at all. Their logic; chemo can do more harm than good at this point and if they treat something they cannot see or find, there is no way of telling if the chemo is doing any good. So yes, it is a reprieve only. The cancer is likely, eventually, to grow and show up and I might need treatment then. Just when (months or years?) is in the hands of the powers that be.
However, for the immediate future, I am not quite yet out of the woods. There are a few more tests I have to go through. There is still the colonoscopy to do. (The last one I was suppose to do in February got cancelled as I was so sick with the flu.) And they are going to do a CT scan on my head to make sure no cancer has metastasized to my brain. (I have had some vertigo the last six months.) My oncologist does not think this likely but wants to cover all basis. Then I have to see a Gastro-Intestinal oncologist/specialist on April 27, I assume to go over results of the colonoscopy. And then another CT scan mid May to make sure the cancer has not reared it's ugly head again, and finally the Medical oncologist again on May 22 to go over everything to date. After that, I assume I will continue to have, at least semi-annually, CT Scans indefinitely.
Meanwhile, I will carry on with my new diet and do everything I possibly can to create an environment in my body that is hostile to the growth of new cancer cells. I will eat, breath, and sleep all things healthy! (Does that mean the rum and cokes will have to go? Oh Nooooo!)
And Neil and I will take life much less seriously (that does not mean less valuably), have more fun, and pretend we have won the lottery (although right now I feel as if I had), and go to the sun and sand, drink those cocoa locos, and revel in each others company.
I will carry on making posts, but probably on the "month by month" schedule, as I learn more from the tests and doctors over the next few months. Who knows, maybe this will turn into a REAL "journey" blog, as Neil and I start our new lease on life and see more of the world.
Once again, thank you for all the good vibes, thoughts, energy and prayers sent my way. That might be what made the difference in the latest developments. I know they helped me through the last month, knowing I was loved and cared about.
Dana
PS. For those of you that were using my dananeil@lincsat.com email address, that address is now closed. My danamacb@gmail.com is the one I am using.
More like "Month by Month", isn't it?
Hmmm! I guess I should have called my blog "month-by-month"! I have not been as prolific in my writing as I thought (or hoped) I would. My apologies to anyone that has been checking regularly to get updates. But this is my normal modus operandi. I sit in front of the computer and don't know where to begin. So I don't. But I can procrastinate no longer so - here I go.
It is now almost three weeks since I have arrived in Victoria. And so far, I am a little disappointed in the weather. I had expected the annual flower count to be in full swing, to see daffodils and tulips blooming everywhere. Instead, it has been quite windy, overcast, and very cold. A few nights it has dropped below freezing and I actually saw a few snowflakes. But I feel spring in the air and am anticipating the first beautiful day of sunshine. Soon??
So - an update. My last one left off just after we had finally gotten our water lines up and running, and with so much to do before we left for the coast. Well, that didn't happen. Neil and I both got totally laid out with the nastiest flu either of us could remember having. So the laundry got left undone, floors unwashed, and the house a disaster. We did manage to get our suitcases packed with the minimal amount of clothing that was still clean.
Our first few days here were difficult. We didn't quite know what to do with ourselves while we waited for the oncologist appointment. Then Neil went back to work and Zack and I tried to settle in. It was harder on Zack than me. He just hadn't gotten used to my family yet. But he is getting more comfortable by the day. He has found a nice cozy spot under an unused table and that is where he escapes to when things get a little rowdy around here.
I managed to get into see the oncologist within a week of getting here. I liked him. He was open, honest and forthright. He pulled no punches. As all the blood work that I had done in the preceding 3 months all showed clean tumor markers for all of my organs, he didn't think the cancer was in those organs. The cancer I have is a metastasized one. A metastasized cancer is a cancer that travels from one site in the body ( the "primary" site) and shows up (attaches so to speak) to another, secondary site, in the body. In my case, the ovary. Usually, the cell structure in the secondary site is characteristic of the cells in the primary site. The "lump' that was taken out of me had a cell structure similar to those in the colon. So this is where they are assuming the cancer started. But more testing was needed to see if it could be found. Once found, a plan of attack could be formulated.
Meanwhile, my sister Melanie and her daughter Mira came up from Seattle with the intentions of getting me back to health after my surgery, and taking a proactive stand against this cancer. I was put on a strict diet that was full of lots of colorful fruits and vegetables (all full of anti-oxidants and having cancer fighting properties), little meat and no dairy. (I did sneak in my two cups of weak coffee every morning!). This diet, along with some supplements, was to give my body a good cleanse. But more specifically, it was a colon cleanse. In solidarity for me, (and I must give them all credit for doing this when they didn't have to), Melanie, Mira, and Marjie all went on the cleanse too. It was an interesting two weeks. The subject of "poop" monopolized a good portion of our conversation!
In general, all is going well here. I am feeling good. Definitely getting stronger after that nasty surgery. But I miss home. Maybe this is good for me, to get off the mountain for a while. I am always afraid that I will turn into one of those crazy "Grizzly Adams" types and chase people away with a sling shot or something.
But I do have some good news. But right now I am so tired I can't keep my head up. So - I promise to try to get back to this in the morning. Good night and I hope this finds you all well.
Dana
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