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!!
Subscribe to:
Posts (Atom)