Great News! As of October 31, I am officially in remission. Blood and scans are normal. Still proseccing it all. lots of tears. but so so good.
I will touch base soon. just want to enjoy this moment!
THANK YOU. All your love, prayers and support have sustained and helped me.
Big hugs and kisses.
Sara
Thursday, 1 November 2012
Monday, 22 October 2012
Hello???
So clearly I am not what you would call a blogger. A blogger after all writes updates, has comments, um blogs...
If any of you are still visiting THANK YOU - you clearly have more faith in me than I deserve! I thought I would touch base as I know this is a means of getting info for some and I appreciate that. I apologise that I went radio silent for a while.
I always contended that this was a means to get info out and post thoughts now and then. I have not wanted to use this as a gripe and complaint site. While so many 'good' things have been going on I have also been in a funk and have not had the energy to try and convey or share many of my observations. Thank you for your patience and understanding. Getting back into 'real' life has been more of a challenge than I ever anticipated and in some ways one of the hardest things about this process.
I had 23 days of radiation - it took up the month of Aug. Fatigue and monotony were the two big side effects. Managed to sneak away for a couple of days with the family and that was perfect.
Back to school was a gong show - isn't it for every one! But all settled in now. We actually just returned from 10 days away in Mexico - a well deserved family vacation. And now this Monday morning i am looking at my weeks schedule. Blood work, Ultrasound, CT. Next week I meet with my amazing Dr. and we confirm that all this zapping and poking and IV'ing has worked.
Yes I am nervous. Scared. But also looking forward of getting out of this limbo. I am tired of fitting my life in around cancer. It is time for me to fit the cancer in around my life.
With my treatment done there are so so many people I owe thanks to. That will come. I have to learn to be patient with myself too and give myself a break. Besides for all the help and love and good thoughts and encouragements I have received 'thank you' just does not seem to cut.
One of the silver linings of this process is learning the true breadth of our ability to give, to share, to love. It has been a humbling and enlightening experience. That is truly the most wonderful gift all of you have given me.
Fingers crossed for my results next week. I promise I won't make you wait as long.
If any of you are still visiting THANK YOU - you clearly have more faith in me than I deserve! I thought I would touch base as I know this is a means of getting info for some and I appreciate that. I apologise that I went radio silent for a while.
I always contended that this was a means to get info out and post thoughts now and then. I have not wanted to use this as a gripe and complaint site. While so many 'good' things have been going on I have also been in a funk and have not had the energy to try and convey or share many of my observations. Thank you for your patience and understanding. Getting back into 'real' life has been more of a challenge than I ever anticipated and in some ways one of the hardest things about this process.
I had 23 days of radiation - it took up the month of Aug. Fatigue and monotony were the two big side effects. Managed to sneak away for a couple of days with the family and that was perfect.
Back to school was a gong show - isn't it for every one! But all settled in now. We actually just returned from 10 days away in Mexico - a well deserved family vacation. And now this Monday morning i am looking at my weeks schedule. Blood work, Ultrasound, CT. Next week I meet with my amazing Dr. and we confirm that all this zapping and poking and IV'ing has worked.
Yes I am nervous. Scared. But also looking forward of getting out of this limbo. I am tired of fitting my life in around cancer. It is time for me to fit the cancer in around my life.
With my treatment done there are so so many people I owe thanks to. That will come. I have to learn to be patient with myself too and give myself a break. Besides for all the help and love and good thoughts and encouragements I have received 'thank you' just does not seem to cut.
One of the silver linings of this process is learning the true breadth of our ability to give, to share, to love. It has been a humbling and enlightening experience. That is truly the most wonderful gift all of you have given me.
Fingers crossed for my results next week. I promise I won't make you wait as long.
Thursday, 19 July 2012
Update
Not a very inspiring title! It has taken me a week since I saw my Doctor and to get my head around all the information. There, as with everything, is good news and bad news. Bad news is not horrible, terrible or by any means intolerable but it is frustrating to say the least.
Good news first. We started with a tumour the size of a tennis ball. we are left with a 'ditzel' about the size of the tip of a childs baby finger. So some awesome shrinkage. Still no spread and all systems (including the nuero ones that put me in the hosp) are all clear.
Bad News - we still have to get rid of the 'ditzel'. So yesterday, I went to the cancer agency and was fitted for a mold of my upper body and head - totally amazing what they can do now - crazy hard plastic sheet that they heated and molded over me. They did a planning CT and next week (most likely) I will start a course of radiation. It will last for 20 days, 5 days a week. The appointments themselves while everyday will only last about 15 min. The mold (it makes me look like spider man) is too hold my body still so they can get the exact spot they need too.
Exhale... Last week after I got the news i was in a real funk. I felt like I had lost my spark and I was not sure where I would find the resources after chemo to go this next step. But a few days in and a few more days of recovery from my last chemo (now over 4 weeks ago - how time flies) I am feel ing ready and looking forward to this final step. Radiation comes with it's own effects, although not as prominent as chemo and it will take its toll for sure but I know it again is a necessary part of the process and so have tried to accept it.
Oh some more good news... I have a layer of fuzz on my head! Bad news - it is starting to come back on my legs too. A lesson for me in taking the good with the bad.
Love to you all. Thanks for continued support.
xo S
Good news first. We started with a tumour the size of a tennis ball. we are left with a 'ditzel' about the size of the tip of a childs baby finger. So some awesome shrinkage. Still no spread and all systems (including the nuero ones that put me in the hosp) are all clear.
Bad News - we still have to get rid of the 'ditzel'. So yesterday, I went to the cancer agency and was fitted for a mold of my upper body and head - totally amazing what they can do now - crazy hard plastic sheet that they heated and molded over me. They did a planning CT and next week (most likely) I will start a course of radiation. It will last for 20 days, 5 days a week. The appointments themselves while everyday will only last about 15 min. The mold (it makes me look like spider man) is too hold my body still so they can get the exact spot they need too.
Exhale... Last week after I got the news i was in a real funk. I felt like I had lost my spark and I was not sure where I would find the resources after chemo to go this next step. But a few days in and a few more days of recovery from my last chemo (now over 4 weeks ago - how time flies) I am feel ing ready and looking forward to this final step. Radiation comes with it's own effects, although not as prominent as chemo and it will take its toll for sure but I know it again is a necessary part of the process and so have tried to accept it.
Oh some more good news... I have a layer of fuzz on my head! Bad news - it is starting to come back on my legs too. A lesson for me in taking the good with the bad.
Love to you all. Thanks for continued support.
xo S
Monday, 25 June 2012
"Whoop Whoop" - V.G
Chemo is done!! I actually just cheered for the first time today when another woman came up to me. She approached me at a table and rubbed her short hair. "This will be you this time next year" she said with a huge grin.
She asked about my chemo and I told her I had had my last one. She cheered and raised her arms. Her joy was infecttious and I found myself allowing myself to cheer along. It was great - I have been tentative about celebrateing, concerned about letting myself get to hopeful. But today I learned something about embracing the moment - again.
It IS a huge accomplishment to be at this stage. Six months of treatment behind me. It is amazing. And I do deserve to embrace and relish that this stage is done.
Like I said in the last post we are going into a 'new normal'. We will know more about what the summer looks like in the next coupls of weeks. I have all of my testing on July 5 & 6th. Then see my doctors the following week on the 11th.
Thanks for hanging with me - I have realized I am certainly not a 'daily blogger' and I appreciate you all hanging in there.
Thanks for food, care, treats, time, and always LOVE for me and my family.
She asked about my chemo and I told her I had had my last one. She cheered and raised her arms. Her joy was infecttious and I found myself allowing myself to cheer along. It was great - I have been tentative about celebrateing, concerned about letting myself get to hopeful. But today I learned something about embracing the moment - again.
It IS a huge accomplishment to be at this stage. Six months of treatment behind me. It is amazing. And I do deserve to embrace and relish that this stage is done.
Like I said in the last post we are going into a 'new normal'. We will know more about what the summer looks like in the next coupls of weeks. I have all of my testing on July 5 & 6th. Then see my doctors the following week on the 11th.
Thanks for hanging with me - I have realized I am certainly not a 'daily blogger' and I appreciate you all hanging in there.
Thanks for food, care, treats, time, and always LOVE for me and my family.
Thanks Riders!
It was pouring rain when I was picked up at 6am. In a car with four other excited cheerleaders on our way out to watch the Ride to Conquer Cancer and cheers on our friend Vicki her husband ond others.
The rain did not bother us much - not as much as it would bother the 4000 riders that gave their weekends to ride from Vancouver to Seattle to raise $ for cancer.
They whizzed by quickly - lots of riders had yellow flags on their bikes - that meant they were survivors. A catagory I am hoping to join very soon.
We caught a glimpse of our friend and she of us - mere seconds .but so so worth it.
It was awesome and uplifting and inspiring to see her ride by with her yellow flag. Way to go Vicki and way to go riders. Thanks.
.JPG)
The rain did not bother us much - not as much as it would bother the 4000 riders that gave their weekends to ride from Vancouver to Seattle to raise $ for cancer.
They whizzed by quickly - lots of riders had yellow flags on their bikes - that meant they were survivors. A catagory I am hoping to join very soon.
We caught a glimpse of our friend and she of us - mere seconds .but so so worth it.
It was awesome and uplifting and inspiring to see her ride by with her yellow flag. Way to go Vicki and way to go riders. Thanks.
.JPG)
Tuesday, 12 June 2012
Goodbye Chemo
Tomorrow at 12:15 I start my last scheduled chemo. It is a bittersweet feeling. Sounds strange I am sure. I am absolutely thrilled that this is the last time I have to go through the process and the aftermath. Thrilled that this part of my journey has come to an end.
But it comes with some hesitation. As mentioned previously, there is a small level of comfort in knowing what comes next. In having a schedule, in having a count down. I'm at the end of my countdown - Don't get me wrong, it is not like I am not celebrating it's just that I recognise I will have a 'new normal' and I don't know what it looks like yet. For someone like me, who tends to be logistical in thinking that can be kind of unsettling.
I know that I have about three weeks after tomorrow to recover. Then I will get tested again, CT, PET, and MRI. I will get the results in week four. And we will go from there. I have every confidence that by the beginning of August I will be well on my way to healing. There is of course a possibility that I will have to have further treatment but we will deal with that if it comes up. For now I am focusing on some nasty drugs that I will get tomorrow that will speed their way to what may remain of my cancer. Those drugs will take one last kick at the tumour and chase it out of my body once and for all.
I have come to realise that this journey is not just one that will end when my chemo ends. This journey will continue. Every three months when I get retested. Then every year. Then every five years. I am in for a long relationship with Lymphoma and the cancer agency, something I had not considered when this all began. I realise I have to get my head around that. There is a certain level of acceptance I will have to come to terms with. I will have to find and embrace my 'new normal'. I will also have to come to terms with the fact that I am a survivor.
Thank you everyone for joining my so far on this part of my journey - being able to share this with you has been very good for me and has allowed me to process a lot of this. Thank you for your continued support, treats, food, drink, company- and most importantly, LOVE.
But it comes with some hesitation. As mentioned previously, there is a small level of comfort in knowing what comes next. In having a schedule, in having a count down. I'm at the end of my countdown - Don't get me wrong, it is not like I am not celebrating it's just that I recognise I will have a 'new normal' and I don't know what it looks like yet. For someone like me, who tends to be logistical in thinking that can be kind of unsettling.
I know that I have about three weeks after tomorrow to recover. Then I will get tested again, CT, PET, and MRI. I will get the results in week four. And we will go from there. I have every confidence that by the beginning of August I will be well on my way to healing. There is of course a possibility that I will have to have further treatment but we will deal with that if it comes up. For now I am focusing on some nasty drugs that I will get tomorrow that will speed their way to what may remain of my cancer. Those drugs will take one last kick at the tumour and chase it out of my body once and for all.
I have come to realise that this journey is not just one that will end when my chemo ends. This journey will continue. Every three months when I get retested. Then every year. Then every five years. I am in for a long relationship with Lymphoma and the cancer agency, something I had not considered when this all began. I realise I have to get my head around that. There is a certain level of acceptance I will have to come to terms with. I will have to find and embrace my 'new normal'. I will also have to come to terms with the fact that I am a survivor.
Thank you everyone for joining my so far on this part of my journey - being able to share this with you has been very good for me and has allowed me to process a lot of this. Thank you for your continued support, treats, food, drink, company- and most importantly, LOVE.
Sunday, 20 May 2012
New News
Finally got home on the evening of May 15th, after 8 nights in the hospital. They were being extra careful with me as I had some neurological symptoms when I went into the hospital that they had to make sure were not caused by any stray cancer cells finding their way into my neurological bits and bobs. I was MRI'ed, CT'ed and ultrasounded every which way. I had my blood, spinal fluid and every other conceivable body thing tested. Great news is that none of it came up positive for cancer. I am still dealing with my one tumour in the centre of my chest. Phew...
Because everything came back negative however the Dr's have decided my 'issues' must have been caused by the chemo so they are taking me off of RICE and putting me back on CHOPR. this too has positives and negatives.
I was put on RICE because of the size of my still remaining tumour and the idea that they should switch it up at that point to ensure we got it all. My first initial reaction when they told me was but the CHOP was not working! It was in fact working very well and most people don't get a glimpse inside their body after four treatments. They have to wait until all six are done. So we don't actually know if we had not changed over to RICE what would have happened. Either way, I don't have much of a choice as the RICE clearly affected me and we certainly don't want to go down that road again. There are plenty of other second line treatments after CHOPR so I am not worried. It was doing it's job, now we are just going to let it finish what it started.
The best part about going to back to CHOPR though is the number of treatments. I have one this week (probably Wednesday) and then only ONE more! That's right. After Wednesday I will have one down and one to go. I know you are with me in thinking that the last two will be the ones to do it - they will blast the last few bits out and I will be into a summer of recovery and good health.
I won't lie, it has not been the easiest of weeks. Spending Mother's Day and my birthday in the hospital were low points in this process for sure. And there is not even a BUT this time. I have no story, no big revelation, no silver lining. And maybe that is the point. we all come to a place - and it is totally OK to say this out loud - that every so often we are allowed to say to ourselves - This Sucks. It really, really sucks.
And then... your kids give you their home made cards.
Thanks for all your love, concern, help. Prayers, generosity and love. And love. And love.
Because everything came back negative however the Dr's have decided my 'issues' must have been caused by the chemo so they are taking me off of RICE and putting me back on CHOPR. this too has positives and negatives.
I was put on RICE because of the size of my still remaining tumour and the idea that they should switch it up at that point to ensure we got it all. My first initial reaction when they told me was but the CHOP was not working! It was in fact working very well and most people don't get a glimpse inside their body after four treatments. They have to wait until all six are done. So we don't actually know if we had not changed over to RICE what would have happened. Either way, I don't have much of a choice as the RICE clearly affected me and we certainly don't want to go down that road again. There are plenty of other second line treatments after CHOPR so I am not worried. It was doing it's job, now we are just going to let it finish what it started.
The best part about going to back to CHOPR though is the number of treatments. I have one this week (probably Wednesday) and then only ONE more! That's right. After Wednesday I will have one down and one to go. I know you are with me in thinking that the last two will be the ones to do it - they will blast the last few bits out and I will be into a summer of recovery and good health.
I won't lie, it has not been the easiest of weeks. Spending Mother's Day and my birthday in the hospital were low points in this process for sure. And there is not even a BUT this time. I have no story, no big revelation, no silver lining. And maybe that is the point. we all come to a place - and it is totally OK to say this out loud - that every so often we are allowed to say to ourselves - This Sucks. It really, really sucks.
And then... your kids give you their home made cards.
Thanks for all your love, concern, help. Prayers, generosity and love. And love. And love.
Friday, 11 May 2012
Forced Vacation
I have been admitted to the hospital because of a drop in my white blood cell count. I came in Monday, it's Friday night now and it looks like I will be here for the weekend. They have a couple of more tests I need to do but the good news is that my blood counts are back to normal.
This probably means next weeks chemo will be pushed for a week, so the schedule will be set off a bit but the Dr's want to be absolutely sure my body can handle it. Lots of precautions, feeling soooo much better than I was just anxious to get home now. I have my own room so am able to rest well. Keep sending me your positive thoughts.
Thanks for all your love and support.
Saturday, 5 May 2012
Ride To Conquer Cancer
I know a super amazing woman who last year had breast cancer. My friend Vicki. It might be hard to understand this but (and I SO wish it were not the case) the way Vicki had cancer, dealt with it, laughed about it, cried about was like a window into I hoped how I could be should I ever be faced with the challenge. Well we all know how that turned out...
Vicki is cancer free now and as much as it pains me to say this she has been like my cancer mentor. I really hope that there is a day some time very soon that none of us have to have the dubious honor of getting a phone call or an email from a loved one or friend beceause they now are part of the club. I don't want to mentor anybody! (But of course I will) That is why I want you to support Vicki. She is riding for me, for her and for the other women and men around her that have had to face a cancer diagnosis.
She is riding to Conquer Cancer - a two day bike ride from Vancouver to Seattle.
Please check out her page - http://www.conquercancer.ca/site/TR?px=2838995&fr_id=1413&pg=personal
And consider making a donation to her or perhaps someone else you know who may be doing the ride.
Thanks - S
Vicki is cancer free now and as much as it pains me to say this she has been like my cancer mentor. I really hope that there is a day some time very soon that none of us have to have the dubious honor of getting a phone call or an email from a loved one or friend beceause they now are part of the club. I don't want to mentor anybody! (But of course I will) That is why I want you to support Vicki. She is riding for me, for her and for the other women and men around her that have had to face a cancer diagnosis.
She is riding to Conquer Cancer - a two day bike ride from Vancouver to Seattle.
Please check out her page - http://www.conquercancer.ca/site/TR?px=2838995&fr_id=1413&pg=personal
And consider making a donation to her or perhaps someone else you know who may be doing the ride.
Thanks - S
So Far So Good!
Just a quick note today. Or at least it is going to start out that way... Everything is going pretty well with the new treatment. Hardest part so far was the three days I had to spend in the chemo chair. BUT and there is always a but, as always, I was taught a good lesson on day one that softened the blow.
One of the other people I shared the room with was a woman (about 50?) who came with her daughter. She was dressed professionally and when she first came in I thought she must be looking for someone. (she had all her hair) - yes I know LOTS of people keep their hair, but on the 6th floor 'most' of us are baldies. Point is she marched right in and sat down and pulled open her shirt to expose her port. Some people get chemo through a port in their chest.
I soon found out she was on her 78th treatment. Approximately every two weeks for the past four years... Keeping the dragons at bay.
I can totally do this until the end of June.
Blanket thank yous today - especially to the meal angels who mysteriously drop food on my doorstep - I am getting a great dish and bowl collection... I will keep them until you reveal yourselves xo
One of the other people I shared the room with was a woman (about 50?) who came with her daughter. She was dressed professionally and when she first came in I thought she must be looking for someone. (she had all her hair) - yes I know LOTS of people keep their hair, but on the 6th floor 'most' of us are baldies. Point is she marched right in and sat down and pulled open her shirt to expose her port. Some people get chemo through a port in their chest.
I soon found out she was on her 78th treatment. Approximately every two weeks for the past four years... Keeping the dragons at bay.
I can totally do this until the end of June.
Blanket thank yous today - especially to the meal angels who mysteriously drop food on my doorstep - I am getting a great dish and bowl collection... I will keep them until you reveal yourselves xo
Monday, 23 April 2012
Not Quite Yet...
As in I cant celebrate quite yet. I saw the Dr's today to get the results of my CT and PET. I always knew there was a possibility my PET would come back positive. It just never really occurred to me that I would be in the 25 % whose PET does come back positive. Unfortunately I am.
Quick update and info session: PET was on Friday, the way it works is they put some radioactive isotope in me with sugar water (essentially), areas of the body that are active and metabolising (like a tumour) suck up the yummy goodness (cancer loves sugar) and lights up like a big glow in the dark pinata.
So what does all of this mean? Well. There is some good news. My tumour has shrank to half it's original size. A result that the doctors are thrilled to see and expect at this point. My blood work is totally normal so white blood cells count and everything is to quote my Doc 'beautiful'. Problem is the mass that remains was glowing like... something that glows a lot. (Sorry got nothing) Soooo that means that i have a cancer that despite the odds is resistant to the conventional treatment AND in an effort to avoid radiation at the end of all this we need to switch up treatment.
Bottom line - prognosis is still excellent, we still have a lot of tools in our arsenal, I just have not got this quite in the bag as I thought.
Tomorrow I will begin a new type of chemo. The biggest difference is that I will get chemo three days in a row. The treatment is a lot more aggressive (yes that reads harder) and I will have some added on to my rounds so I will have 4 more 3 day session instead of 2 more 1 day sessions. Instead of being done mid-May I am looking at the end of June.
I would be lying if I tried to say that this does not bother me on many levels. However as I mentioned in an older post, the attitude has to be, by whatever means necessary. Of course it sucks. I'm scared, tired of being tired and really really want this to be done but it's not just yet. I have accepted all of this as part of my journey - I will come to accept this next step too - but right now it is like a very irritating co-worker you do everything to avoid. Eventually you have to go to coffee with them. And then maybe, just maybe you find out they are not as bad as you thought.
I am going to crawl into bed and watch something like Duck Dynasty for a bit, let myself wallow. Tomorrow is a new day, with new drugs and a new path to healing. Thanks for your support, love and good wishes.
xo
Quick update and info session: PET was on Friday, the way it works is they put some radioactive isotope in me with sugar water (essentially), areas of the body that are active and metabolising (like a tumour) suck up the yummy goodness (cancer loves sugar) and lights up like a big glow in the dark pinata.
So what does all of this mean? Well. There is some good news. My tumour has shrank to half it's original size. A result that the doctors are thrilled to see and expect at this point. My blood work is totally normal so white blood cells count and everything is to quote my Doc 'beautiful'. Problem is the mass that remains was glowing like... something that glows a lot. (Sorry got nothing) Soooo that means that i have a cancer that despite the odds is resistant to the conventional treatment AND in an effort to avoid radiation at the end of all this we need to switch up treatment.
Bottom line - prognosis is still excellent, we still have a lot of tools in our arsenal, I just have not got this quite in the bag as I thought.
Tomorrow I will begin a new type of chemo. The biggest difference is that I will get chemo three days in a row. The treatment is a lot more aggressive (yes that reads harder) and I will have some added on to my rounds so I will have 4 more 3 day session instead of 2 more 1 day sessions. Instead of being done mid-May I am looking at the end of June.
I would be lying if I tried to say that this does not bother me on many levels. However as I mentioned in an older post, the attitude has to be, by whatever means necessary. Of course it sucks. I'm scared, tired of being tired and really really want this to be done but it's not just yet. I have accepted all of this as part of my journey - I will come to accept this next step too - but right now it is like a very irritating co-worker you do everything to avoid. Eventually you have to go to coffee with them. And then maybe, just maybe you find out they are not as bad as you thought.
I am going to crawl into bed and watch something like Duck Dynasty for a bit, let myself wallow. Tomorrow is a new day, with new drugs and a new path to healing. Thanks for your support, love and good wishes.
xo
Monday, 16 April 2012
Keep or Change
First I would like to welcome Mrs. Harris's grade five class to my blog. Thanks for checking it out and good luck on your own blogging adventure! I appreciate your support.
Next I would like to apologise to all of you who come here looking for updates and news. It seems that my creative whims come and go. Don asked me why I could not just pop something up about treatment or recovery:
Chemo #4 - boring
Days 1-7- sucky
Days 7- 10- good - Happy Easter!
Day 11 - OMG horrible
Now - feeling much better thank you.
I thought about it for a bit. As much as I have been sharing my journey with you and keeping everyone in the loop I have also used this to formalise thoughts - put some of this craziness in context - hopefully allow my thought process to evolve, mature, laugh and ultimately grow. So bear with me as I continue on my quest for some humour, silver linings and understanding. Oh and proselytising too.
Today's little ditty is about finding things out about people you know and making choices. It is about life and how we live it. It is about all those sayings - come on we all have them in our back pocket - 'live life to the fullest', 'enjoy each day', 'carpe diem', 'dance like know one is watching'. We throw those around and TRY to emulate those things. They often come out when something happens to someone we care about - 'you just never know', 'things can change so quickly'. Quite often we have the opportunity to reflect and then as the trappings of life catch up to us we fall back into familiar routines. It is no ones fault, it is not that we don't try hard to really make each moment count, it is just what happens.
There is a certain family (lets call them the Smith's) who has recently really made an impact on me. They have always been very kind and attentive, helpful, gracious and well, you just can't find a single thing that is not nice about them. (Actually amazingly there are a number of people who I am so lucky to say fall into this category in my life) But getting back to this particular family; not only are they wonderful human beings, I really admire the way they live their lives. They focus on family time. They always have a calmness and contentment and a great sense of humour about them and I have never once heard a complaint - although they are happy to listen to mine and offer help or assistance. I always wondered how or why they were just so darn happy - was it faith? Their parents influence? The joy of their children????
And while I am not ruling out any of the above, at about the halfway point in my treatment Mrs. Smith shared something that in my mind anyways, gave me some insight into their lives and how they choose to live them.
On September 11, 2001 Mr. and Mr. Smith lived in New York. That morning Mrs. Smith went into work early. Leaving her husband snuggled in bed. Mr. Smith woke some time later - the alarm had failed to go off. He quickly jumped out of bed and raced out of their apartment. He did not get very far as the doorman to their building stopped him and told him that 'something' had happened downtown and traffic was really bad. He should just stay home. Of course we all know what happened that morning to the twin towers. And as I am sure you are one step ahead of me; because of an alarm clock and a helpful doorman Mr. Smith did not go in to work that day at World Trade Centre One.
While this story in itself is one that presents us with many things to discuss and talk about, it is what happened after that to me is truly remarkable. The Smiths were faced with adversity and the stark realisation that but for minutes on an alarm clock their lives could have been very different. They packed up and moved out of New York (Originally from Vancouver they relocated to the West Coast but down south), but something still was not quite right. Then they developed the philosophy that they continue to live by today. Keep or Change.
As I mentioned before the hardest part of living in the moment is actually doing that - there are so many logistics. But the Smith's philosophy of Keep or Change really can override some of those difficulties. Ultimately the Smith's travelled the world and then found themselves back in Vancouver, had two beautiful children and continue to live in the moment and embrace life and those of us lucky to be a part of theirs.
The Smiths take the time to reevaluate their lives - Keep or Change? Sometimes the 'change' is simple or self led - sometimes it is larger, fundamental or has larger effects on their lives as a whole. Sometimes 'keeping' means not only acceptance but also compromise and understanding.
I like it, A LOT. I like that it gives one a simple system of checks and balances. Like a pro and con list. I like that while some of those things on the change list might look insurmountable - at least it gives you a starting point - an awareness, a knowledge. And we are all familiar with the saying 'knowing is half the battle'.
What would you Keep or Change?
Thank you for soup for laughs, for tea. Thank you for a new 'hairstyle'. Thanks for love and emails and more soup and Shepard's pie. Thanks for cookies (I did share with my kids after all) and thanks for all the other delicious treats and hearty wholesome food that has helped me heal. Thanks for flowers, those delivered and those popping up everywhere. Cherry blossoms never cease to thrill me year after year (Am I making myself sound old?) And thank you for continued prayers, love, support, meditations, sage burnings and everything else. Thank you to my book club and to special friends S & T . And thank you to the Smiths - who I hope will not mind me sharing their story and who have humbled me with their generosity, propensity to say YES and kindness to my kids.
P.S - Had a CT scan on the 10th. PET scan on the 20th. Meet with the Dr.s on the 23 to find out results. Fingers crossed everybody that I get the 'all clear' to continue with current treatment and have chemo #5 and 6. Either way I will be having my next chemo on the 24th. Current course or revised. xo
Next I would like to apologise to all of you who come here looking for updates and news. It seems that my creative whims come and go. Don asked me why I could not just pop something up about treatment or recovery:
Chemo #4 - boring
Days 1-7- sucky
Days 7- 10- good - Happy Easter!
Day 11 - OMG horrible
Now - feeling much better thank you.
I thought about it for a bit. As much as I have been sharing my journey with you and keeping everyone in the loop I have also used this to formalise thoughts - put some of this craziness in context - hopefully allow my thought process to evolve, mature, laugh and ultimately grow. So bear with me as I continue on my quest for some humour, silver linings and understanding. Oh and proselytising too.
Today's little ditty is about finding things out about people you know and making choices. It is about life and how we live it. It is about all those sayings - come on we all have them in our back pocket - 'live life to the fullest', 'enjoy each day', 'carpe diem', 'dance like know one is watching'. We throw those around and TRY to emulate those things. They often come out when something happens to someone we care about - 'you just never know', 'things can change so quickly'. Quite often we have the opportunity to reflect and then as the trappings of life catch up to us we fall back into familiar routines. It is no ones fault, it is not that we don't try hard to really make each moment count, it is just what happens.
There is a certain family (lets call them the Smith's) who has recently really made an impact on me. They have always been very kind and attentive, helpful, gracious and well, you just can't find a single thing that is not nice about them. (Actually amazingly there are a number of people who I am so lucky to say fall into this category in my life) But getting back to this particular family; not only are they wonderful human beings, I really admire the way they live their lives. They focus on family time. They always have a calmness and contentment and a great sense of humour about them and I have never once heard a complaint - although they are happy to listen to mine and offer help or assistance. I always wondered how or why they were just so darn happy - was it faith? Their parents influence? The joy of their children????
And while I am not ruling out any of the above, at about the halfway point in my treatment Mrs. Smith shared something that in my mind anyways, gave me some insight into their lives and how they choose to live them.
On September 11, 2001 Mr. and Mr. Smith lived in New York. That morning Mrs. Smith went into work early. Leaving her husband snuggled in bed. Mr. Smith woke some time later - the alarm had failed to go off. He quickly jumped out of bed and raced out of their apartment. He did not get very far as the doorman to their building stopped him and told him that 'something' had happened downtown and traffic was really bad. He should just stay home. Of course we all know what happened that morning to the twin towers. And as I am sure you are one step ahead of me; because of an alarm clock and a helpful doorman Mr. Smith did not go in to work that day at World Trade Centre One.
While this story in itself is one that presents us with many things to discuss and talk about, it is what happened after that to me is truly remarkable. The Smiths were faced with adversity and the stark realisation that but for minutes on an alarm clock their lives could have been very different. They packed up and moved out of New York (Originally from Vancouver they relocated to the West Coast but down south), but something still was not quite right. Then they developed the philosophy that they continue to live by today. Keep or Change.
As I mentioned before the hardest part of living in the moment is actually doing that - there are so many logistics. But the Smith's philosophy of Keep or Change really can override some of those difficulties. Ultimately the Smith's travelled the world and then found themselves back in Vancouver, had two beautiful children and continue to live in the moment and embrace life and those of us lucky to be a part of theirs.
The Smiths take the time to reevaluate their lives - Keep or Change? Sometimes the 'change' is simple or self led - sometimes it is larger, fundamental or has larger effects on their lives as a whole. Sometimes 'keeping' means not only acceptance but also compromise and understanding.
I like it, A LOT. I like that it gives one a simple system of checks and balances. Like a pro and con list. I like that while some of those things on the change list might look insurmountable - at least it gives you a starting point - an awareness, a knowledge. And we are all familiar with the saying 'knowing is half the battle'.
What would you Keep or Change?
Thank you for soup for laughs, for tea. Thank you for a new 'hairstyle'. Thanks for love and emails and more soup and Shepard's pie. Thanks for cookies (I did share with my kids after all) and thanks for all the other delicious treats and hearty wholesome food that has helped me heal. Thanks for flowers, those delivered and those popping up everywhere. Cherry blossoms never cease to thrill me year after year (Am I making myself sound old?) And thank you for continued prayers, love, support, meditations, sage burnings and everything else. Thank you to my book club and to special friends S & T . And thank you to the Smiths - who I hope will not mind me sharing their story and who have humbled me with their generosity, propensity to say YES and kindness to my kids.
P.S - Had a CT scan on the 10th. PET scan on the 20th. Meet with the Dr.s on the 23 to find out results. Fingers crossed everybody that I get the 'all clear' to continue with current treatment and have chemo #5 and 6. Either way I will be having my next chemo on the 24th. Current course or revised. xo
Tuesday, 27 March 2012
Two Thirds and Counting
Let me start by saying thanks to all who expressed their sympathies about little P. We are all still adjusting. While I usually quite practical about these sorts of things his death has caused me a lot of sadness. I cried a lot. I realised I was not just crying for Peanut, I was crying for me. I had not really done that. Gone there. His death was the catalyst I needed to let myself cry for myself. I was not having a pity party but I realised there were a lot of emotions all caught up in there. Sometimes as Moms we put on a pretty tough front - this gave me an permission to lower my defences.
I wrote the post the night we said goodbye and the following morning the vet called with some follow up - some pathology results had come back. You can imagine my surprise when the vet told us that Peanut had a very aggressive form of Lymphoma. Even if we had of caught it earlier there would have been nothing we could have done for him. I asked how long he had it and the vet's estimation was right about when the doctors figured mine started as well. Strange. Two ways to look at it I guess; either we both got into something (although in humans at least Lymphoma is a hard one to pin down) or as I prefer; Peanut took one for the team. My little cancer angel - we will know soon enough as we are about to get a whole lot more information.
We have passed the half way mark. (treatment three) and this Friday will mark my 4th chemo. Not only are we on the home stretch but after #4 there is a change in procedure. I get information. Much of this process has been one of hope - hope that the chemo is working, hope that we are doing the right thing, that I have the right chemo cocktail. We are about to find out. After this Friday's treatment and recovery in the following weeks I will go in for both a CT scan and a PET scan. These will determine the status of my treatment and help to identify how much cancer is left and how successful chemo has been up until this point. The good news is that 75% of people at this stage have had great success. The odds are in my favour. IF everything is going along as it should then I have chemo # 5 and 6 as planned, same cocktail. If I am in the 25% that the tumour is not shrinking as it should then we have to mix things up a bit. Change my chemo to a new type (called RICE) and add on a couple of sessions - so I will have RICE #5-8. I am not going to worry about it now, what happens, happens, I am committed to this journey no matter what it takes - but I wont pretend I have not got my fingers and toes crossed for good scan results. I am feeling pretty good about it - the doctors feel good about how things are going so I am sticking with that.
I am writing this post from my Mom's computer in Victoria. I have come over here to say my goodbyes to my Dad's longtime best friend, my uncle by proxy. B. I have known B my whole life, he was there the moment my Dad passed and now he is waiting for his time - struck with the exact same disease that my dad had. Liver cancer. It seams this last week or so has been wrought with sadness. This is the unfortunate part of life. It just reminds us once again. Hug your kids, call your Mom or Dad if you are lucky enough to be able to, mend fences, forgive. This life is all too short.
Many thanks again for play dates, soup, flowers. Generous gifts in memory of P, prayers, emails (i promise i am trying to get back to you all), patience, FB notes (so good to hear from old friends - again, I promise i am trying to get back to you), walks and most importantly LOVE.
PS. Please say a prayer for my friend A.A is beautiful, vibrant mother of 4 (eldest is 6) who has just started chemo for stage 4 colon cancer. She is only 35. A is in a good space ready for the fight ahead of her and full of positive energy but I know any extra vibes like the ones I was so lucky to receive (and continue to receive) will help. Thank you.
I wrote the post the night we said goodbye and the following morning the vet called with some follow up - some pathology results had come back. You can imagine my surprise when the vet told us that Peanut had a very aggressive form of Lymphoma. Even if we had of caught it earlier there would have been nothing we could have done for him. I asked how long he had it and the vet's estimation was right about when the doctors figured mine started as well. Strange. Two ways to look at it I guess; either we both got into something (although in humans at least Lymphoma is a hard one to pin down) or as I prefer; Peanut took one for the team. My little cancer angel - we will know soon enough as we are about to get a whole lot more information.
We have passed the half way mark. (treatment three) and this Friday will mark my 4th chemo. Not only are we on the home stretch but after #4 there is a change in procedure. I get information. Much of this process has been one of hope - hope that the chemo is working, hope that we are doing the right thing, that I have the right chemo cocktail. We are about to find out. After this Friday's treatment and recovery in the following weeks I will go in for both a CT scan and a PET scan. These will determine the status of my treatment and help to identify how much cancer is left and how successful chemo has been up until this point. The good news is that 75% of people at this stage have had great success. The odds are in my favour. IF everything is going along as it should then I have chemo # 5 and 6 as planned, same cocktail. If I am in the 25% that the tumour is not shrinking as it should then we have to mix things up a bit. Change my chemo to a new type (called RICE) and add on a couple of sessions - so I will have RICE #5-8. I am not going to worry about it now, what happens, happens, I am committed to this journey no matter what it takes - but I wont pretend I have not got my fingers and toes crossed for good scan results. I am feeling pretty good about it - the doctors feel good about how things are going so I am sticking with that.
I am writing this post from my Mom's computer in Victoria. I have come over here to say my goodbyes to my Dad's longtime best friend, my uncle by proxy. B. I have known B my whole life, he was there the moment my Dad passed and now he is waiting for his time - struck with the exact same disease that my dad had. Liver cancer. It seams this last week or so has been wrought with sadness. This is the unfortunate part of life. It just reminds us once again. Hug your kids, call your Mom or Dad if you are lucky enough to be able to, mend fences, forgive. This life is all too short.
Many thanks again for play dates, soup, flowers. Generous gifts in memory of P, prayers, emails (i promise i am trying to get back to you all), patience, FB notes (so good to hear from old friends - again, I promise i am trying to get back to you), walks and most importantly LOVE.
PS. Please say a prayer for my friend A.A is beautiful, vibrant mother of 4 (eldest is 6) who has just started chemo for stage 4 colon cancer. She is only 35. A is in a good space ready for the fight ahead of her and full of positive energy but I know any extra vibes like the ones I was so lucky to receive (and continue to receive) will help. Thank you.
Thursday, 22 March 2012
The Mighty Pea
This post was supposed to be up earlier than this. It was supposed to be about treatment number three. The halfway point. I would go on about how my symptoms - how they affected - me or didn't. A regular update with perhaps a dash of a story or a silver of self enlightenment that I may have been graced with on this journey.
Once again however my curve ball got a curve ball.
Many of you have met Peanut - our feisty 7 lbs of thunder Yorkshire terrier/Pomeranian cross. He has the heart of lion and a personality larger than life. He turned 11 on Dec 30. He was my doggie in the window - my I really should NOT buy a dog from this store but cant help myself - my most wonderful present from my most wonderful (and new) fiance.
He was a ball of fur. Three black dots - two eyes and a nose were all that confirmed he was in fact a dog. He slept under the covers between our feet or on our pillow between our heads. At least until the kids arrived. Initailly he was not a big fan of kids - would not let them touch him - but he never strayed far. He would circle them at the playground to make sure they were staying close to me and place his bum firmly on the ground if I tried to walk somewhere without them. He defended them fiercely (often too much sometimes) and eventually grew to trust them and allow them to bestow him with tummy rubs and ear scratches.
People were drawn to him - he could calm the fears of the most dog shy child and charmed women on his walks who always commented on his hair colour. All you had to do was bend down and Peanut would wiggle his way to his favourite spot between your feet for a little love. He would climb into any visitors lap - wanted or not - and paw at you until you paid attention to him. He was fast - the fastest dog at the beach in his prime - we nick named him sweetfeet - he could outrun anyone. Especially Don and I. He slowed down the last few years but his tenacity and zest never did.
There are many stories I could tell you about Peanut - like the time he got a way from Don and walked out on the ice at Jericho pond. He fell through of course and Don learnt very quickly why no one uses it as a swimming hole. Or the time I was 9 months pregnant and had to chase Peanut around bawling my eyes out certain he would die because he was gobbling down the huge back leg of some poor departed rabbit he had found in the scrub at the beach. Peanut has been hit by a car, gone toe to toe with a German Shepard and and eaten (and pooped) an entire chicken leg. Every time he has battled back like a champ.
Since my diagnosis Peanut has not left my side. No matter where I was he wanted to be there. He always wanted to be touching me and if i was lying down he wanted to be on me. Right on my chest - right on my tumor. He has been my constant companion and has listened to me say all the things i have needed to say, voice all those thoughts I dare not voice and share all my fears that I have chosen not to share.
Peanut had to go in for emergency surgery on Tuesday to remove a blockage in his intestines. The blockage turned out to be a growth the size of a ping pong ball. He was recovering well and I was able to bring him home on Wednesday night. He was groggy and uncomfortable but OK. I gave him his meds at midnight and tucked him in. By Thursday morning it was clear something was very wrong. He had gone into shock.
The vet and clinic staff cleared their appointments and did everything they could. Finally stabilising him. We waited for a few hours to see if his condition would improve. It unfortunately did not.
This afternoon Don and I made the very difficult decision to let him go. We said goodbye to our wonderful, faithful, funny friend. The love and comfort he has given me over the last two months will continue to comfort us but the memories of the last 11 years will sustain us.
R.I.P Sweet Pea.
Once again however my curve ball got a curve ball.
Many of you have met Peanut - our feisty 7 lbs of thunder Yorkshire terrier/Pomeranian cross. He has the heart of lion and a personality larger than life. He turned 11 on Dec 30. He was my doggie in the window - my I really should NOT buy a dog from this store but cant help myself - my most wonderful present from my most wonderful (and new) fiance.
He was a ball of fur. Three black dots - two eyes and a nose were all that confirmed he was in fact a dog. He slept under the covers between our feet or on our pillow between our heads. At least until the kids arrived. Initailly he was not a big fan of kids - would not let them touch him - but he never strayed far. He would circle them at the playground to make sure they were staying close to me and place his bum firmly on the ground if I tried to walk somewhere without them. He defended them fiercely (often too much sometimes) and eventually grew to trust them and allow them to bestow him with tummy rubs and ear scratches.
People were drawn to him - he could calm the fears of the most dog shy child and charmed women on his walks who always commented on his hair colour. All you had to do was bend down and Peanut would wiggle his way to his favourite spot between your feet for a little love. He would climb into any visitors lap - wanted or not - and paw at you until you paid attention to him. He was fast - the fastest dog at the beach in his prime - we nick named him sweetfeet - he could outrun anyone. Especially Don and I. He slowed down the last few years but his tenacity and zest never did.
There are many stories I could tell you about Peanut - like the time he got a way from Don and walked out on the ice at Jericho pond. He fell through of course and Don learnt very quickly why no one uses it as a swimming hole. Or the time I was 9 months pregnant and had to chase Peanut around bawling my eyes out certain he would die because he was gobbling down the huge back leg of some poor departed rabbit he had found in the scrub at the beach. Peanut has been hit by a car, gone toe to toe with a German Shepard and and eaten (and pooped) an entire chicken leg. Every time he has battled back like a champ.
Since my diagnosis Peanut has not left my side. No matter where I was he wanted to be there. He always wanted to be touching me and if i was lying down he wanted to be on me. Right on my chest - right on my tumor. He has been my constant companion and has listened to me say all the things i have needed to say, voice all those thoughts I dare not voice and share all my fears that I have chosen not to share.
Peanut had to go in for emergency surgery on Tuesday to remove a blockage in his intestines. The blockage turned out to be a growth the size of a ping pong ball. He was recovering well and I was able to bring him home on Wednesday night. He was groggy and uncomfortable but OK. I gave him his meds at midnight and tucked him in. By Thursday morning it was clear something was very wrong. He had gone into shock.
The vet and clinic staff cleared their appointments and did everything they could. Finally stabilising him. We waited for a few hours to see if his condition would improve. It unfortunately did not.
This afternoon Don and I made the very difficult decision to let him go. We said goodbye to our wonderful, faithful, funny friend. The love and comfort he has given me over the last two months will continue to comfort us but the memories of the last 11 years will sustain us.
R.I.P Sweet Pea.
Wednesday, 7 March 2012
Change of Plans aka Learning to go with it...
The dates have been etched in my calendar since I started on this little trip. One chemo every three weeks; always a Wednesday in my case. In chemo school (yes that is what is called, also known as chemo 101) they tell you two really important things... Watch out for infection - if you even get 1 degree of a fever call the doctor - and don't miss your treatments dates, the schedule is really important. I have taken both very seriously - a dear friend even had a hand sanitising machine set up at my front door - the kids on our block have the cleanest hands around. So one can imagine my surprise when I got a call last week informing me that my appointments had been changed.
Instead of Wednesday, my chemo had been moved to Friday. I won't get into the logistics here of childcare, husbands work schedule, mom coming from out of town etc. that I could more or less handle. What I was not prepared for was the emotional impact it had on me. I realised how tightly I was holding on to this one date in the calendar, a date that my life is planned around. Every three weeks.
One would think I was sort of getting used to the idea but every round of chemo is bringing up new thought processes and feelings. This was one I was not prepared for. I felt like the rug had been torn out from under me. Even more than when I got my diagnosis. I think it may have been because even though I have tried to take this all and go with the flow I did have a very structured framework for how I thought this was all going to go.
One chemo every three weeks - always on a Wednesday. I knew I could handle that. Yes, yes in retrospect it is only a difference of two days, but my mind started racing - what about my schedule? Did they realise they were messing with my treatment? Was the nice teacher nurse lying in class? A few calls to the doctor and I was put on the waiting list for Wednesday. I was assured that the two day change would not in fact have any effect on my progress. I did not however find out why they changed my appointment (Don thinks it may have something to do with the timing of a test I am going to have in a few weeks). I went into this past weekend still holding on to the idea that nothing had really changed, I would get in on Wednesday as planned and all would be right int the world.
Monday morning. Called in to see if I had moved up on the list. Tried to pry out of the nurse multiple times how many we're ahead of me, what my chances were. She understandably got annoyed, and pointed out quite clearly that I had an appointment for Friday. I was about to formulate the request one more time when something told me to shut up. I hung up the phone and thought about things for a few minutes. I called the nurse back and asked her to take me off the wait list - Friday would be fine.
When I was in the hospital, I had excellent care. The nurses were great and I felt well attended to by the doctors. The thing that really stood out for me was how hard the doctors worked to get me in and tested and treated. As fast as possible. It was ten days. From the first sign that something was wrong to my first chemo appointment, just ten days. I would like to think it was my winning smile that prompted them to move quickly but I know that more likely it was my age, the type of aggressive cancer I have and the fact that it had not - beyond the medical probability - spread. I also know that on the first Wednesday when I got prioritised for treatment, I bumped someone else off, if not two people as the first round took two days.
By all accounts things are going really well. If they needed my Wednesday for some other mom or dad, sister or brother, daughter or son to get a round under their belt. To give them a chance to catch it early or even to give them a chance at another few months, or even weeks then that is as good enough a reason as any to embrace my new day. Friday it is!
I am not trying to be all altruistic, nor am I saying that some other persons health is more important than mine. I am just trying to share with you the story that led me to my latest little piece of discovery. We all know that life can throw us curve balls. My discovery is that even curve balls get curve balls. I had convinced myself that I was just going with the flow, when in reality I was holding on so tightly to something I had failed to see what it really represented to me. I could not control what was going on in side my body but damn it every three weeks on a Wednesday I could control what I did to it. Reality is I can't control any of it. (to a degree - yes diet, meditation & all that other stuff I am doing helps but just go with me here for a minute). It was only by recognising that, that I was able to recognise Patient X who got bumped from their spot so I could get on my road to healing.
There was power too in taking the waiting game out of the waiting list. Embracing the change and my new day. Friday. So cheers to Friday - it IS arguably the best day of the week anyways. Get ready cancer we have a new date. - At least for now...
Thanks to Patient X, emails, spaghetti sauce, minestrone, funky mac & cheese and hearing about my friend doing the worm. Thanks to chats over coffee, walks in the sun, play dates, the generosity of people I barely know and the love of those I know well. Thanks for good wishes, prayers and getting to watch my 6 yr old sound out a really, really big word! Thanks for assistant coaches who stepped up when Coach Sara went on hiatus and managers who came in mid season and helped team Thunder shine - thanks to my soccer kids - you made your coach proud. Thanks to my 9 yr old's DI coach and team -The Magic Monkeys, I am so grateful I was well enough to see your competition and cheer you on to your first place finish - I can not wait to cheer you on at provincials. Thank you universe for this opportunity to grow and see the small important things in life. And most importantly, thank you, all of you for your LOVE. (whew that was a long one)
Instead of Wednesday, my chemo had been moved to Friday. I won't get into the logistics here of childcare, husbands work schedule, mom coming from out of town etc. that I could more or less handle. What I was not prepared for was the emotional impact it had on me. I realised how tightly I was holding on to this one date in the calendar, a date that my life is planned around. Every three weeks.
One would think I was sort of getting used to the idea but every round of chemo is bringing up new thought processes and feelings. This was one I was not prepared for. I felt like the rug had been torn out from under me. Even more than when I got my diagnosis. I think it may have been because even though I have tried to take this all and go with the flow I did have a very structured framework for how I thought this was all going to go.
One chemo every three weeks - always on a Wednesday. I knew I could handle that. Yes, yes in retrospect it is only a difference of two days, but my mind started racing - what about my schedule? Did they realise they were messing with my treatment? Was the nice teacher nurse lying in class? A few calls to the doctor and I was put on the waiting list for Wednesday. I was assured that the two day change would not in fact have any effect on my progress. I did not however find out why they changed my appointment (Don thinks it may have something to do with the timing of a test I am going to have in a few weeks). I went into this past weekend still holding on to the idea that nothing had really changed, I would get in on Wednesday as planned and all would be right int the world.
Monday morning. Called in to see if I had moved up on the list. Tried to pry out of the nurse multiple times how many we're ahead of me, what my chances were. She understandably got annoyed, and pointed out quite clearly that I had an appointment for Friday. I was about to formulate the request one more time when something told me to shut up. I hung up the phone and thought about things for a few minutes. I called the nurse back and asked her to take me off the wait list - Friday would be fine.
When I was in the hospital, I had excellent care. The nurses were great and I felt well attended to by the doctors. The thing that really stood out for me was how hard the doctors worked to get me in and tested and treated. As fast as possible. It was ten days. From the first sign that something was wrong to my first chemo appointment, just ten days. I would like to think it was my winning smile that prompted them to move quickly but I know that more likely it was my age, the type of aggressive cancer I have and the fact that it had not - beyond the medical probability - spread. I also know that on the first Wednesday when I got prioritised for treatment, I bumped someone else off, if not two people as the first round took two days.
By all accounts things are going really well. If they needed my Wednesday for some other mom or dad, sister or brother, daughter or son to get a round under their belt. To give them a chance to catch it early or even to give them a chance at another few months, or even weeks then that is as good enough a reason as any to embrace my new day. Friday it is!
I am not trying to be all altruistic, nor am I saying that some other persons health is more important than mine. I am just trying to share with you the story that led me to my latest little piece of discovery. We all know that life can throw us curve balls. My discovery is that even curve balls get curve balls. I had convinced myself that I was just going with the flow, when in reality I was holding on so tightly to something I had failed to see what it really represented to me. I could not control what was going on in side my body but damn it every three weeks on a Wednesday I could control what I did to it. Reality is I can't control any of it. (to a degree - yes diet, meditation & all that other stuff I am doing helps but just go with me here for a minute). It was only by recognising that, that I was able to recognise Patient X who got bumped from their spot so I could get on my road to healing.
There was power too in taking the waiting game out of the waiting list. Embracing the change and my new day. Friday. So cheers to Friday - it IS arguably the best day of the week anyways. Get ready cancer we have a new date. - At least for now...
Thanks to Patient X, emails, spaghetti sauce, minestrone, funky mac & cheese and hearing about my friend doing the worm. Thanks to chats over coffee, walks in the sun, play dates, the generosity of people I barely know and the love of those I know well. Thanks for good wishes, prayers and getting to watch my 6 yr old sound out a really, really big word! Thanks for assistant coaches who stepped up when Coach Sara went on hiatus and managers who came in mid season and helped team Thunder shine - thanks to my soccer kids - you made your coach proud. Thanks to my 9 yr old's DI coach and team -The Magic Monkeys, I am so grateful I was well enough to see your competition and cheer you on to your first place finish - I can not wait to cheer you on at provincials. Thank you universe for this opportunity to grow and see the small important things in life. And most importantly, thank you, all of you for your LOVE. (whew that was a long one)
Wednesday, 29 February 2012
Sunny Skies
This weekend past was great. Felt so much better then the previous week and my spirits were back up. Went to Ben's hockey game on Saturday and it was great to get out, watch him play and catch up with some of the parents. On Sunday while the sun was shinning we decided to go for a walk in Richmond on the dyke. When we left the house it was sunny but the direction we were headed in had a huge black cloud over it. I wondered aloud if we were going to get caught in it. About the third of the way there it started to hail;big chunky things bouncing off the car. Don told me "don't worry where we are headed its sunny". I could see the blue patch he was referring to but was not as convinced as he was that the patch would stay blue or that it was actually where we needed it to be. Half way there the snow started to fall. Heavy wet slush that stuck on the road like transparent jelly. It got worse, the wind had picked up and the snow was hitting the car from the side. It was miserable. None of us were dressed for it and I nearly told Don to forget it and head home. But before I could he said "look it's sunny over there" I still was not convinced. Eventually we got to our destination. Through hail, sleet and snow. We got out of the car and brought our umbrellas but we didn't need them. The sun was shinning, not a cloud in sight -except from where we had come from - it was absolutely beautiful. The ocean, the mountains, everything was perfect.
It made me think about treatment, about my journey and about the process I will repeat over the next few months. I might have to go through some shit but Don was right all along - It's sunny where we are headed.
Enjoying the sun and the fresh air - Richmond, Feb 26, 2012
It made me think about treatment, about my journey and about the process I will repeat over the next few months. I might have to go through some shit but Don was right all along - It's sunny where we are headed.
Thursday, 23 February 2012
Round Two
I have been struggling with what to write here today... While I remain positive and optimistic about treatment, recovery and my eventual return to health I have to admit the last few days has taken the stuffing out of me a bit. The procedure itself on Wed, the 15th was pretty standard, and the first few days went by pretty well. I got the same side effects as last time, on about the same schedule. The problem has been the 'aftermath'. It has been a lot harder to get myself back to a place of relative normalcy. Everything has taken a bit longer. I am having to rest more, I am dealing with side effects for a longer time. I suppose it is to be expected as chemo and the effects it has on ones body are cumulative I just had a harder time dealing with it this round and I don't necessarily mean physically. Perhaps it has been because I was so on auto pilot with round one. Perhaps the reality of my situation has settled and this is my new normal for a while, either way the last few days were frustrating. I think discombobulated is a good word for. My mind would be busy wanting to do things but my body would not have the energy or I would be restless, frustrated about sitting around but I could not get my brain to work to put two and two together. Finally today a week and a day after round two I am getting some clarity and some sense of feeling a bit more balanced. It could not have come soon enough!
Thanks for Moms & Moms In Laws, visits (especially Sophia), cards, notes from old friends, dinners, rides and emails. Thanks for supporting my family and cheering loud - Go Eagles! Thanks for words of encouragement, prayers, thoughts, good vibes and LOVE.
Thanks for Moms & Moms In Laws, visits (especially Sophia), cards, notes from old friends, dinners, rides and emails. Thanks for supporting my family and cheering loud - Go Eagles! Thanks for words of encouragement, prayers, thoughts, good vibes and LOVE.
Friday, 17 February 2012
But What Were The Symptoms...?
Because all of this came on so fast and seemingly out of left field many people have asked me about symptoms. I think because I was generally healthy and felt pretty good we were all quite surprised and caused some to wonder about their own bodies. I know a number of people who on hearing my news went to get either a physical or a lingering problem checked out. (Good!) So if you are not interested in a little Lymphoma 101 (and how it related to me) stop reading now.
Symptoms:
-Swollen painless lymph nodes (lumps) - in your armpits, neck, shoulders, groin. This is the most common symptom and often the ONLY one.
- Weight loss; can occur rapidly and for no reason - 10-15 lbs over a couple of months.
- Fever that is continuous or occurs intermittently over a period of time and doesn't seem related to a chest or urinary infection is a good sign that you should consult a doctor. Fever that is related to node swellings occurs commonly with infections, and many lymphomas are often mistaken for infections at the early stage. Occasionally, in those affected by Hodgkin lymphoma, a characteristic fever called Pel-Ebstein fever occurs.
- Excessive sweating at night. Drenching change your PJ's kind of sweating was how is was described to me
- Itchiness all over your body
- Loss of appetite
- Feeling of weakness and fatigue
- Breathlessness / can be with or without swelling in the face and neck
Finally, as lymphomas can occur in any organ, may give rise to some unusual symptoms as well. A lymphoma in the stomach can cause pain in the abdomen, and a lymphoma in the brain can cause headaches or leg weakness.
How did all this relate to me? Well, it didn't really. But looking back now over the fall of 2011 there may have been a few clues. I had no lumps, certainly did not loose any weight, no fever, no night sweats, no itchiness, no loss of appetite.
I was tired - but what mother of two from September to December isn't? Breathlessness - I remember a couple times thinking to myself over the fall that I really needed to work on my deep breathing as I found myself breathing shallower - it was 'easier' - but nothing that really caused me concern. Looking back the biggest thing for me was a pain that I thought was a reoccurring muscle problem. I had it twice once after playing tennis twice in two days (I am a lefty) and once on vacation in cabo after swimming laps (ok dancing). I thought I had pulled a muscle or ssomething although the location was a bit off. I now know I had irritated the tumour.
I always wondered how people could have 'things' inside them - "World Weekly News woman had watermelon size tumour removed from her butt." - and not know. Well I had one the size of tennis ball (shrinking as I write) and by the doctors accounts being as aggressive as this kind is it was about to go postal on my body. So the lesson from all this - listen to your body, get things checked out.
And most importantly try to find balance in your life so that if something is off you are more in tune to detect it.
Thank you for visiting - for your cards, notes, emails, tulips, soups and POW-ER, Coleman hugs, yummy breakfasts and homemade sauce, encouragement, good wishes, healing thoughts, strength and Kleenex and as always LOVE.
Symptoms:
-Swollen painless lymph nodes (lumps) - in your armpits, neck, shoulders, groin. This is the most common symptom and often the ONLY one.
- Weight loss; can occur rapidly and for no reason - 10-15 lbs over a couple of months.
- Fever that is continuous or occurs intermittently over a period of time and doesn't seem related to a chest or urinary infection is a good sign that you should consult a doctor. Fever that is related to node swellings occurs commonly with infections, and many lymphomas are often mistaken for infections at the early stage. Occasionally, in those affected by Hodgkin lymphoma, a characteristic fever called Pel-Ebstein fever occurs.
- Excessive sweating at night. Drenching change your PJ's kind of sweating was how is was described to me
- Itchiness all over your body
- Loss of appetite
- Feeling of weakness and fatigue
- Breathlessness / can be with or without swelling in the face and neck
Finally, as lymphomas can occur in any organ, may give rise to some unusual symptoms as well. A lymphoma in the stomach can cause pain in the abdomen, and a lymphoma in the brain can cause headaches or leg weakness.
How did all this relate to me? Well, it didn't really. But looking back now over the fall of 2011 there may have been a few clues. I had no lumps, certainly did not loose any weight, no fever, no night sweats, no itchiness, no loss of appetite.
I was tired - but what mother of two from September to December isn't? Breathlessness - I remember a couple times thinking to myself over the fall that I really needed to work on my deep breathing as I found myself breathing shallower - it was 'easier' - but nothing that really caused me concern. Looking back the biggest thing for me was a pain that I thought was a reoccurring muscle problem. I had it twice once after playing tennis twice in two days (I am a lefty) and once on vacation in cabo after swimming laps (ok dancing). I thought I had pulled a muscle or ssomething although the location was a bit off. I now know I had irritated the tumour.
I always wondered how people could have 'things' inside them - "World Weekly News woman had watermelon size tumour removed from her butt." - and not know. Well I had one the size of tennis ball (shrinking as I write) and by the doctors accounts being as aggressive as this kind is it was about to go postal on my body. So the lesson from all this - listen to your body, get things checked out.
And most importantly try to find balance in your life so that if something is off you are more in tune to detect it.
Thank you for visiting - for your cards, notes, emails, tulips, soups and POW-ER, Coleman hugs, yummy breakfasts and homemade sauce, encouragement, good wishes, healing thoughts, strength and Kleenex and as always LOVE.
Wednesday, 15 February 2012
Round Two:
So far so good. My Mom came with me today, it took about 3.5 hours to get all the medicines in. They do one at a time. My procedure is called CHOP-R each letter stands for a drug. First I take a Prednisone (sp?) pill. The next one has the dubious nickname of the 'red devil'. It is put in via IV. The nurse has to push two big syringes in by hand to make sure it goes in slowly but is also getting to the right place as it is very damaging to tissue. Red devil is the one that has caused my hair to fall out. Yes it is almost all gone.
I had cut my hair shorter in anticipation of this and Wednesday of last week it started coming out. It was not falling out everywhere but if you pulled on it it came out with no resistance. Very strange, and when I realized it was happening there were a few tears for sure. It made everything so real. Anyways went up to Whistler to relax and recoup for the weekend before this round and it was coming out a lot more. Sunday when we got home we had a family vote. Leave it to be patchy or shave it off. The boys voted for the shave. So while they danced and sang to try and keep me smiling (their idea not mine & it worked) Don shaved it off. Don should never be a barber. I have a little stubble left that is slowly disappearing. Biggest difference is that my head is always cold so when I am not wearing a wig I always have to have a hat.
Back to the treatment. Next was one they call Vinchristie. Done by drip IV takes about 15 min - another one that is hard on your system and can be hard on the veins going in. Nurse said I have good veins as I went all smoothly. The second two are together and take about an 1.5 hrs. It goes in smoothly but gives you what they call wasabi nose - like you have snorted wasabi or horseradish. It is annoying more than painful and certainly clears the sinus's.
I was home and having a nap just after lunch and am enjoying having my Mom here for a visit. Last time the side effects I did have showed up Friday afternoon so I am not looking forward to it but also consider myself lucky based on the last time.
Thanks again, for rides for my kids, power chemo balls, flowers, ice cream and magazines, cozy coats (more about that later), good vibes ( I was levitating in the chemo room), prayers and most importantly LOVE.
xo S
So far so good. My Mom came with me today, it took about 3.5 hours to get all the medicines in. They do one at a time. My procedure is called CHOP-R each letter stands for a drug. First I take a Prednisone (sp?) pill. The next one has the dubious nickname of the 'red devil'. It is put in via IV. The nurse has to push two big syringes in by hand to make sure it goes in slowly but is also getting to the right place as it is very damaging to tissue. Red devil is the one that has caused my hair to fall out. Yes it is almost all gone.
I had cut my hair shorter in anticipation of this and Wednesday of last week it started coming out. It was not falling out everywhere but if you pulled on it it came out with no resistance. Very strange, and when I realized it was happening there were a few tears for sure. It made everything so real. Anyways went up to Whistler to relax and recoup for the weekend before this round and it was coming out a lot more. Sunday when we got home we had a family vote. Leave it to be patchy or shave it off. The boys voted for the shave. So while they danced and sang to try and keep me smiling (their idea not mine & it worked) Don shaved it off. Don should never be a barber. I have a little stubble left that is slowly disappearing. Biggest difference is that my head is always cold so when I am not wearing a wig I always have to have a hat.
Back to the treatment. Next was one they call Vinchristie. Done by drip IV takes about 15 min - another one that is hard on your system and can be hard on the veins going in. Nurse said I have good veins as I went all smoothly. The second two are together and take about an 1.5 hrs. It goes in smoothly but gives you what they call wasabi nose - like you have snorted wasabi or horseradish. It is annoying more than painful and certainly clears the sinus's.
I was home and having a nap just after lunch and am enjoying having my Mom here for a visit. Last time the side effects I did have showed up Friday afternoon so I am not looking forward to it but also consider myself lucky based on the last time.
Thanks again, for rides for my kids, power chemo balls, flowers, ice cream and magazines, cozy coats (more about that later), good vibes ( I was levitating in the chemo room), prayers and most importantly LOVE.
xo S
Monday, 13 February 2012
Welcome & Why We Are Here...
Welcome to my blog. I have created this so friends and family can keep up to date on my progress as I journey through the trials and tribulations of my battle with Lymphoma.
A Little History...
On Sunday, January 15th I went to the hospital with severe chest pain. Although neither Don nor I voiced it out loud we were both fairly certain I was having a heart attack. That in itself was shocking but what followed would prove to be more so and alter the path of our lives forever. After ruling out a heart attack and a couple of other possibilities I was off to the CT scan. We went in to the hospital at about 12:30pm by 12:30am the Thoracic surgeon was giving us the diagnosis. I had a mass in my chest about the size of a tennis ball. It was possible it could be something else but the most likely candidate was a tumor caused by Lymphoma. I was admitted to the hospital and scheduled for a biopsy.
My surgeon Dr. K. Evens, performed the biopsy on Tuesday morning and the results were confirmed that afternoon. It was in fact Lymphoma but I would have to wait to know exactly what kind we were dealing with. In the meantime I was introduced to my Oncologist, Dr. Kerry Savage part of the BC Cancer Agency and one of the top experts in her field. Dr. Savage is part of a group of Dr.s led by Dr. Conners who are among the leading experts in the Lymphoma field in the world - so I knew I was in good hands. She sent me for more tests, CT's and X-rays while I was in the hospital to further my diagnosis. All in all I was in the hospital for 8 days.
The same morning I was released from the hospital I went to see Dr. Savage to get my results. I was diagnosed with Primary Medistinal Large Cell B Lymphoma, Stage 2B. The tumor was localized and there was no spread to other lymph nodes or organs. Knowing what I know now about Lymphoma I am very grateful for the diagnosis I have. The road ahead is tough but there is an excellent cure rate. I was scheduled to get into chemotherapy right away.
Chemotherapy:
First day was January 25th. I was in a great mood going in because that very day my brother Robert and his wife Jessica welcomed their new daughter (My new niece!) Sophia Simone. What a wonderful blessing! Chemotherapy itself is pretty boring. I had a great nurse who was informative and funny. I think both Don and I were still in shock and disbelief that we were where we were. Everything had happened so fast. After chemo is what everyone talks about, the side effects and other things that happen. I have to say thus far I have been very lucky. I did have some problems but no nausea and vomiting. The biggest thing was getting back on my feet after being in the hospital for so long and dealing with fatigue. Some days I have had to go slower than others. Now with my next round a couple days away I am hopeful that all the healthy eating and positive thinking will help me have the same experience. I know that as I go down this path I can expect the recovery to be harder but I have so much and support and help and love that I just know that will keep me going.
While we are on that topic. Thank you for your notes, cards, cookies, meals, love, prayers, shoulders, tissues, advice, swear words, wig advice, music, visits, healing stones, LOVE.
A Little History...
On Sunday, January 15th I went to the hospital with severe chest pain. Although neither Don nor I voiced it out loud we were both fairly certain I was having a heart attack. That in itself was shocking but what followed would prove to be more so and alter the path of our lives forever. After ruling out a heart attack and a couple of other possibilities I was off to the CT scan. We went in to the hospital at about 12:30pm by 12:30am the Thoracic surgeon was giving us the diagnosis. I had a mass in my chest about the size of a tennis ball. It was possible it could be something else but the most likely candidate was a tumor caused by Lymphoma. I was admitted to the hospital and scheduled for a biopsy.
My surgeon Dr. K. Evens, performed the biopsy on Tuesday morning and the results were confirmed that afternoon. It was in fact Lymphoma but I would have to wait to know exactly what kind we were dealing with. In the meantime I was introduced to my Oncologist, Dr. Kerry Savage part of the BC Cancer Agency and one of the top experts in her field. Dr. Savage is part of a group of Dr.s led by Dr. Conners who are among the leading experts in the Lymphoma field in the world - so I knew I was in good hands. She sent me for more tests, CT's and X-rays while I was in the hospital to further my diagnosis. All in all I was in the hospital for 8 days.
The same morning I was released from the hospital I went to see Dr. Savage to get my results. I was diagnosed with Primary Medistinal Large Cell B Lymphoma, Stage 2B. The tumor was localized and there was no spread to other lymph nodes or organs. Knowing what I know now about Lymphoma I am very grateful for the diagnosis I have. The road ahead is tough but there is an excellent cure rate. I was scheduled to get into chemotherapy right away.
Chemotherapy:
First day was January 25th. I was in a great mood going in because that very day my brother Robert and his wife Jessica welcomed their new daughter (My new niece!) Sophia Simone. What a wonderful blessing! Chemotherapy itself is pretty boring. I had a great nurse who was informative and funny. I think both Don and I were still in shock and disbelief that we were where we were. Everything had happened so fast. After chemo is what everyone talks about, the side effects and other things that happen. I have to say thus far I have been very lucky. I did have some problems but no nausea and vomiting. The biggest thing was getting back on my feet after being in the hospital for so long and dealing with fatigue. Some days I have had to go slower than others. Now with my next round a couple days away I am hopeful that all the healthy eating and positive thinking will help me have the same experience. I know that as I go down this path I can expect the recovery to be harder but I have so much and support and help and love that I just know that will keep me going.
While we are on that topic. Thank you for your notes, cards, cookies, meals, love, prayers, shoulders, tissues, advice, swear words, wig advice, music, visits, healing stones, LOVE.
Subscribe to:
Comments (Atom)