It was with a relieved high-five we walked out of the Tom Baker Centre into the cool spring sunshine after the third round of chemotherapy was finished. As usual the staff were effecient and friendly, and during treatment Charl was comfortably resting his eyes in bed with the mildly noticeable din of conversation from patients around him. I read pretty much non-stop, other than to offer Charl encouraging glances, food we brought from home, or to fetch us nice hot lattes.
In clinic yesterday, the Dr informed us that Charl's neutrophil count was back up to normal, as was his white blood cell count. This is good - we have that nasty injection to thank for that. They also told us that they would do a CT scan after the 4th round, to see how much the chemo has shrunken his tumour, and a PET scan after the 6th round to see if there is any cancer still lurking within any remnants of the mass. We are anxious for good news, solid results, percentage of improvement, key performance indicators, something concrete, to tell us that he is doing marvelously well, and this treatment is doing exactly what it should. But we have to wait for that, and rest in the knowledge that his improved lung capacity can only be an indication of the chemo working, otherwise he would still be coughing and out of breath at the least strenuous of tasks.
So today marks Hump Day - the official half way mark of Charl's journey through chemo. God willing, just three more to go..
Thursday, March 25, 2010
Wednesday, March 24, 2010
On a lighter note..
Ok so now that I've stopped snivelling and pulled up my socks a bit here, it's time for a cute story.
A few days ago I asked my older brothers (one lives in Vernon, the other in Uppsala, Sweden) to ask their young children their thoughts on the best way to get better when one is sick. This is John's email back to me.
Here come some answers but I don't really think that they are the ones you're hoping for.
Those "out-of-the-mouths-of-babes" moments are difficult to order.
So here is how it transpired. I tried to talk to Olivia (6) alone but it didn't work so I decided to ask all three kids at once while we were eating dinner. Stina was working late so it was just the four of us.
When I asked 'what is the best way to get better', Max (9) knew right away why I was asking because he had been in and read your e-mail. So I explained to the other two why I was asking which was ok, but we were already far away from spontaneity. So Livy said "drink medicine" and Max said "eat lots of easy food — like apples and bananas." Isak (4) said "drink lots of water".
You see their reality is when you are really sick - you've got the stomach flu or a fever. Then Max said "well you should rest in peace". I think he picked up on the look on my face because he then went on to say that it wasn't that kind of rest in peace but to have peace and quite while resting.
After that the subject was simply exhausted and I could no longer extract anything more.
Hope that this helps in someway,
John
(And tell Charl to eat some easy food).
A few days ago I asked my older brothers (one lives in Vernon, the other in Uppsala, Sweden) to ask their young children their thoughts on the best way to get better when one is sick. This is John's email back to me.
Here come some answers but I don't really think that they are the ones you're hoping for.
Those "out-of-the-mouths-of-babes" moments are difficult to order.
So here is how it transpired. I tried to talk to Olivia (6) alone but it didn't work so I decided to ask all three kids at once while we were eating dinner. Stina was working late so it was just the four of us.
When I asked 'what is the best way to get better', Max (9) knew right away why I was asking because he had been in and read your e-mail. So I explained to the other two why I was asking which was ok, but we were already far away from spontaneity. So Livy said "drink medicine" and Max said "eat lots of easy food — like apples and bananas." Isak (4) said "drink lots of water".
You see their reality is when you are really sick - you've got the stomach flu or a fever. Then Max said "well you should rest in peace". I think he picked up on the look on my face because he then went on to say that it wasn't that kind of rest in peace but to have peace and quite while resting.
After that the subject was simply exhausted and I could no longer extract anything more.
Hope that this helps in someway,
John
(And tell Charl to eat some easy food).
Monday, March 22, 2010
Super Store
They say you process bad news in waves. Today our reality hit me in a whole new way. Charl has cancer. He is going in for his third round of chemo on Thursday. My husband is critically ill.
I've been writing this blog to update people when events in his treatment warrant it, and to let everyone know that he is doing well - the happy, smiley stuff. But I don't write everything that could be written about what it's like to see someone you love so much suffer, what it's like for Charl to have this disease, to be justifiably frustrated, to be forced to withdraw from the normal activities enjoyed in life. Nor do I write about all the ways in which it affects our relationship and our plans, to live in a constant state of limbo, or what it's like when I'm scared or tired or feeling isolated. Well today I'm going to write about it.
It took me 3 hours to do my shopping at SuperStore today. I did not expect it to take that long, as buying groceries never does. I don't even know where the time went. Charl had to take his injection yesterday, and he dreaded its painful effects. When the drugs start working, they trick your bones into producing bone marrow so your white blood cell count will rise - which he needs to do in order for the nurses to be able to administer his next round of chemo. He has been in pain for the last 24 hours. This is not fun for him, and it is not fun for me to watch him go through it.
We were out of all the good foods he needs to eat, so I went out to do a routine weekly shop. Why it hit me at SuperStore I'll never know. 'My husband is at home, during a work day, laying in bed. In pain. This is not the way it's supposed to be. He should be at work, we both should be at work. We should be going out to a nice restaurant tonight. We should be buying the house we've always planned to buy together. We should be having babies. We should be planning the big summer vacation we've talked about for my birthday this summer...' We should be. But we aren't.
In retrospect - on all those days I blogged when we were (mercifully) feeling 'up' - I was so glib about 'the new normal'. This is not to say I was purposely being disingenuous, or trying to present a false reality, but on the good days you can be glib. On the hard days, nothing about the 'new normal' is likeable.
Thank you mom and Patti for calling me today, and keeping me going while I was at superstore. Thanks to Liette from church who happened to also be there, and after a nice chat, though we hardly know each other, gave me a warm hug. God has given us everything we need to get through this time, about that I have no doubt. And we'll get through this. This, a Super Store day.
I've been writing this blog to update people when events in his treatment warrant it, and to let everyone know that he is doing well - the happy, smiley stuff. But I don't write everything that could be written about what it's like to see someone you love so much suffer, what it's like for Charl to have this disease, to be justifiably frustrated, to be forced to withdraw from the normal activities enjoyed in life. Nor do I write about all the ways in which it affects our relationship and our plans, to live in a constant state of limbo, or what it's like when I'm scared or tired or feeling isolated. Well today I'm going to write about it.
It took me 3 hours to do my shopping at SuperStore today. I did not expect it to take that long, as buying groceries never does. I don't even know where the time went. Charl had to take his injection yesterday, and he dreaded its painful effects. When the drugs start working, they trick your bones into producing bone marrow so your white blood cell count will rise - which he needs to do in order for the nurses to be able to administer his next round of chemo. He has been in pain for the last 24 hours. This is not fun for him, and it is not fun for me to watch him go through it.
We were out of all the good foods he needs to eat, so I went out to do a routine weekly shop. Why it hit me at SuperStore I'll never know. 'My husband is at home, during a work day, laying in bed. In pain. This is not the way it's supposed to be. He should be at work, we both should be at work. We should be going out to a nice restaurant tonight. We should be buying the house we've always planned to buy together. We should be having babies. We should be planning the big summer vacation we've talked about for my birthday this summer...' We should be. But we aren't.
In retrospect - on all those days I blogged when we were (mercifully) feeling 'up' - I was so glib about 'the new normal'. This is not to say I was purposely being disingenuous, or trying to present a false reality, but on the good days you can be glib. On the hard days, nothing about the 'new normal' is likeable.
Thank you mom and Patti for calling me today, and keeping me going while I was at superstore. Thanks to Liette from church who happened to also be there, and after a nice chat, though we hardly know each other, gave me a warm hug. God has given us everything we need to get through this time, about that I have no doubt. And we'll get through this. This, a Super Store day.
Sunday, March 21, 2010
A Sabbath Rest
While my husband rests, I contemplate the meaning of rest as we know it today, versus the "original" rest declared by God
(Genesis 1:1-2:4)
The Bible Sabbath is a weekly day of rest and time of worship. On Wiki it explains it as being "observed differently in Judaism and Christianity and informs a similar occasion in several other faiths. Though many viewpoints and definitions have arisen over the millennia, most originate in the same textual tradition.
Sabbatarians believe that Sabbath-keeping is central to following Christ, and that he highly regarded Sabbath, while non-Sabbatarians believe that Christ has power to abrogate Sabbath, and that he reinterpreted it nonritually." Hmm. Ok so some people observe this day of rest as a God-sanctioned, non-optional day of rest and others see it as a non-legalistic, optional activity.
Can rest be optional? We can't live without resting. We are limited in our ability to feel energized, think clearly and operate effectively when we have even a moderate amount of tiredness. While rest and sleep are not the same thing, they are indisputably related. We need to sleep to survive, and we need to rest to live well. Charl needs rest right now to recover and rebuild depleted strength and energy reserves - the ones healthy people take for granted. For him, rest is certainly not an option. I'm pretty sure this applies to me too.
(Genesis 1:1-2:4)
The Bible Sabbath is a weekly day of rest and time of worship. On Wiki it explains it as being "observed differently in Judaism and Christianity and informs a similar occasion in several other faiths. Though many viewpoints and definitions have arisen over the millennia, most originate in the same textual tradition.
Sabbatarians believe that Sabbath-keeping is central to following Christ, and that he highly regarded Sabbath, while non-Sabbatarians believe that Christ has power to abrogate Sabbath, and that he reinterpreted it nonritually." Hmm. Ok so some people observe this day of rest as a God-sanctioned, non-optional day of rest and others see it as a non-legalistic, optional activity.
Can rest be optional? We can't live without resting. We are limited in our ability to feel energized, think clearly and operate effectively when we have even a moderate amount of tiredness. While rest and sleep are not the same thing, they are indisputably related. We need to sleep to survive, and we need to rest to live well. Charl needs rest right now to recover and rebuild depleted strength and energy reserves - the ones healthy people take for granted. For him, rest is certainly not an option. I'm pretty sure this applies to me too.
C.S. Lewis said that "a man can no more diminish God's glory by refusing to worship Him than a lunatic can put out the sun by scribbling the word, 'darkness' on the walls of his cell". By the same logic, is it not fair to say that we can no more negate the command to rest by refusing to rest, than a child can rouse to life a stuffed toy by longing for it to be alive?
Friday, March 19, 2010
The 'Food vs Cancer' Battle
What do flaxseed, turmeric, seaweed, tomatoes, mushrooms and yogurt all have in common? They all play a critical role, along with just about every other food of plant origin, in protecting our bodies against cancer, say Drs Richard Beliveau and Denis Gingras. The Cancer Research Society funded their research, and one of the products of their work is a book called Cooking with Foods that Fight Cancer.
It is no exaggeration to say that this is the coolest cookbook I have ever read, perused or applied in my kitchen. I'm serious about this book, and yes, while I'm admittedly biased and therefore enthusiastic about cooking healthy foods for Charl, I'm not in the slightest prone to fad remedies, or quick-fix solutions to health issues. So rest assured this book isn't saying it's got the cure for cancer. However cynical one can get about claims that fad diets can 'fix' serious, persistent health problems, the refreshing thing about their focus is that it's based on common sense: eating fruits and veggies is not only good for you, it's just plain smart living if you have cancer. And well, if you don't have cancer too.
Another benefit to this book is that it's more like a science text book than a book full of recipes and pictures of food (although it has plenty of that). That may sound odd that a science text would enhance a cookbook... but giving a very clear background in the research on which foods are doing what good to our bodies, and how they are doing it, is in my opinion giving a further understanding that can enhance an interest in cooking healthy foods, which in this case help Charl, and me, beat this thing, this "enemy" as they call it.
I am not being paid to market this book. But you should get a copy.
"The high incidence of [...] cancers typical in industrialized societies is an example that is as tragic as it is eloquent; it speaks to the major part played by diet in the development of cancer, and underscores the extent to which the modification of diet, through the addition of foods capable of protecting us against cancer, represents an incontrovertible objective of any strategy in the fight against this disease." (p17)
Happy cooking and happy eating. May your food choices win their battles against this insidious, annoying enemy called cancer.
PS thanks again Victor :)
Another benefit to this book is that it's more like a science text book than a book full of recipes and pictures of food (although it has plenty of that). That may sound odd that a science text would enhance a cookbook... but giving a very clear background in the research on which foods are doing what good to our bodies, and how they are doing it, is in my opinion giving a further understanding that can enhance an interest in cooking healthy foods, which in this case help Charl, and me, beat this thing, this "enemy" as they call it.
I am not being paid to market this book. But you should get a copy.
"The high incidence of [...] cancers typical in industrialized societies is an example that is as tragic as it is eloquent; it speaks to the major part played by diet in the development of cancer, and underscores the extent to which the modification of diet, through the addition of foods capable of protecting us against cancer, represents an incontrovertible objective of any strategy in the fight against this disease." (p17)
Happy cooking and happy eating. May your food choices win their battles against this insidious, annoying enemy called cancer.
PS thanks again Victor :)
Thursday, March 11, 2010
The New Normal
Dear Bloggees,
We are surprised at the number of people who tell us they read this blog regularly and that they appreciate being able to follow Charl's progress. We are flattered and very glad that it's provided you with a way to journey alongside us through this process, however I regret to inform these dedicated readers there isn't always something particularly interesting to write about.
The truth is that for us, the reality of Charl's cancer has become relatively predictable; the anticipated perils of chemo have morphed into somewhat banal realities that we now accept as our new 'normal'. While Charl's normal is now a reduced ability to exert himself, an ability nonetheless exists to remain active in some form. He gets tired, as I've mentioned, and sometimes this necessitates staying in bed for sevearl hours during the day to regain his energy, sometimes not. Now walking, our only form of exercise, seems to be a metaphor for the our approach to getting through these next treatments. Slow and steady. You can't speed it up; you are forced to accept the schedule sanctioned by the system. Sometimes it's walking on glass shards, sometimes walking through green pastures on a sunny spring day. This, coupled with Charl's diminished ability to remain active, has generally just forced us to slow down to a pace to which neither one of us is accustomed. This is not a bad thing - we've spent many years busily working at building careers, managing homes, projects and blackberry addictions and leaving some of the more important aspects of life to the side. Now we have the ability to stop, reassess, shake off guilty feelings for not doing "more". Focus on what's important: regaining Charl's health and purposefully developing our marriage. Exchange the rat-race for time to reflect, read, think, pray and listen. Love. Really take care of basic physical needs like eating well. (Historically not a strong tendency for either of us). Charl is meeting with friends and colleagues and fellow volunteers from church and is very much enjoying this perk as well.
Although the 'new normal' of cancer can have benefits, it dispassionately imposes a less than exciting life, inconvenient physical discomfort, and forces upon you constraints of ability otherwise unimaginable. We do however remain ever thankful to God for any positives there are, and for what we can learn through these slow times - and Charl remains forcused on these.
(It just may be that slow times don't make for fascinating blog posts ;)
We are surprised at the number of people who tell us they read this blog regularly and that they appreciate being able to follow Charl's progress. We are flattered and very glad that it's provided you with a way to journey alongside us through this process, however I regret to inform these dedicated readers there isn't always something particularly interesting to write about.
The truth is that for us, the reality of Charl's cancer has become relatively predictable; the anticipated perils of chemo have morphed into somewhat banal realities that we now accept as our new 'normal'. While Charl's normal is now a reduced ability to exert himself, an ability nonetheless exists to remain active in some form. He gets tired, as I've mentioned, and sometimes this necessitates staying in bed for sevearl hours during the day to regain his energy, sometimes not. Now walking, our only form of exercise, seems to be a metaphor for the our approach to getting through these next treatments. Slow and steady. You can't speed it up; you are forced to accept the schedule sanctioned by the system. Sometimes it's walking on glass shards, sometimes walking through green pastures on a sunny spring day. This, coupled with Charl's diminished ability to remain active, has generally just forced us to slow down to a pace to which neither one of us is accustomed. This is not a bad thing - we've spent many years busily working at building careers, managing homes, projects and blackberry addictions and leaving some of the more important aspects of life to the side. Now we have the ability to stop, reassess, shake off guilty feelings for not doing "more". Focus on what's important: regaining Charl's health and purposefully developing our marriage. Exchange the rat-race for time to reflect, read, think, pray and listen. Love. Really take care of basic physical needs like eating well. (Historically not a strong tendency for either of us). Charl is meeting with friends and colleagues and fellow volunteers from church and is very much enjoying this perk as well.
Although the 'new normal' of cancer can have benefits, it dispassionately imposes a less than exciting life, inconvenient physical discomfort, and forces upon you constraints of ability otherwise unimaginable. We do however remain ever thankful to God for any positives there are, and for what we can learn through these slow times - and Charl remains forcused on these.
(It just may be that slow times don't make for fascinating blog posts ;)
Friday, March 5, 2010
Realities of Chemo
Yesterday Charl completed Round 2 of chemotherapy. I've put some photos on the sidebar slideshow in Latest Pics that show the building, room and some photos of what it's like going through this process. He felt fine. We went for a nice walk in the sun after it was over to get some fresh air, and all seemed quite normal. After a pretty busy day today, however, he's not feeling so well. We had a few appointments and did the requisite walk (some form of exercise is highly recommended for overall health during chemo), but he says it's different from last time.. but has a hard time explaining what it's like. I imagine it is a mix between fatigue, mild nausea and being run over by a truck several times. But that's me. It's a good thing he's as strong as he is.
One of our appointments today was going to get Charl's head shaved. He was starting to lose hair at an alarming pace, which of course we expected, but anticipating and experiencing are two different animals. It's quite common to have some scalp sensitivity while losing your hair, so things we take for granted like lying on your pillow can become a nuisance as the hair can feel spiky on your scalp. So that, coupled with the amount Charl was losing (see here how much hair was coming out just by getting it wet in the shower) :
One of our appointments today was going to get Charl's head shaved. He was starting to lose hair at an alarming pace, which of course we expected, but anticipating and experiencing are two different animals. It's quite common to have some scalp sensitivity while losing your hair, so things we take for granted like lying on your pillow can become a nuisance as the hair can feel spiky on your scalp. So that, coupled with the amount Charl was losing (see here how much hair was coming out just by getting it wet in the shower) :
...we knew the time had come. We found a little hair place in the area and a nice Chilean woman did the deed. She was quite meticulous in trying to cut his hair as close to the scalp as possible. Apparently salons don't "shave" heads, only barbers do. So we had to settle for a 1mm hair length, as opposed to 0mm. So for $15 (including a hot water head massage) he's a new man. And a very handsome one at that!
Pretty cool eh??!
Wednesday, March 3, 2010
Low counts
Before the second chemo treatment can start, Charl has to do blood work to see how his blood cells are faring. You may remember that Charl came out of his 7-14 day period with (what we considered at the time) flying colours, because he hadn't gotten sick or picked up on an infection. But today we were shown his blood work results, and in fact his neutrophils and white blood cell counts didn't recover after that 14th day. They are both very low; the neutrophils barely above zero.
They say that a patient's physical response to the first treatment is generally indicative of their response for the proceeding treatments, and if so, we can expect Charl to do very well during the next 5 rounds. However, what we didn't expect was to have to be even more diligent about protecting him from infection beyond that 7-14 day window.
There are two ways a low blood count is managed: one is by waiting until his body naturally builds the count up again, but that would mean missing his scheduled chemo treatment. They did not advise this approach. The alternative, then, is to take a Filgrastim injection the day before chemo. Filgrastim stimulates the blood system (bone marrow) to make white blood cells, so that he has enough to be able to tolerate the harsh chemicals in chemo therapy.
Charl was prescribed three doses: one injection for today, and two preceeding round 3. These have to be injected at home, so it was up to me or Charl to play nurse. I immediately opted out given my pathetic intolerance to all things needle. So my brave husband stepped up to the plate, learned to fill his own syringe, do the 'mad doctor' tap-tap to remove air bubbles, clean and pinch a fat roll in his belly (sorry honey, I had to say that), and inject the magic potion. And voila! his blood count is on its way up for tomorrow's treatment.
We are now ready for round 2 tomorrow!
They say that a patient's physical response to the first treatment is generally indicative of their response for the proceeding treatments, and if so, we can expect Charl to do very well during the next 5 rounds. However, what we didn't expect was to have to be even more diligent about protecting him from infection beyond that 7-14 day window.
There are two ways a low blood count is managed: one is by waiting until his body naturally builds the count up again, but that would mean missing his scheduled chemo treatment. They did not advise this approach. The alternative, then, is to take a Filgrastim injection the day before chemo. Filgrastim stimulates the blood system (bone marrow) to make white blood cells, so that he has enough to be able to tolerate the harsh chemicals in chemo therapy.
Charl was prescribed three doses: one injection for today, and two preceeding round 3. These have to be injected at home, so it was up to me or Charl to play nurse. I immediately opted out given my pathetic intolerance to all things needle. So my brave husband stepped up to the plate, learned to fill his own syringe, do the 'mad doctor' tap-tap to remove air bubbles, clean and pinch a fat roll in his belly (sorry honey, I had to say that), and inject the magic potion. And voila! his blood count is on its way up for tomorrow's treatment.
We are now ready for round 2 tomorrow!
Tuesday, March 2, 2010
Going crazy
After doing a whole lot of not very much today we went out in the late afternoon for an errand and felt totally exhausted. We concluded that doing absolutely nothing in the form of exercise all day today didn't help. Not exercising is like halving your oxygen intake for a day, especially on a grey/brown overcast day in Calgary - it makes you feel even more blah. So we made an executive decision to go home and take a nap.
It started off very well:
Then out of the blue, things changed. Normally considered our clock-radio sentinel, Monkey pretty much keeps to himself.
But for some reason today he wanted to be in on our fun conversation before Charl dozed off.
And guess where monkey ended up ?
Last thing I heard was Charl mumble something about his Partners seeing this..
It started off very well:
The conversation started with 'Think we're getting spoiled spending 24/7 together?.. Maybe we'll never want work again', to 'Maybe we're going crazy', to a whole lot of funny commentary from the napper..
Then out of the blue, things changed. Normally considered our clock-radio sentinel, Monkey pretty much keeps to himself.
But for some reason today he wanted to be in on our fun conversation before Charl dozed off.
Last thing I heard was Charl mumble something about his Partners seeing this..
Monday, March 1, 2010
Doing (very well) Unto Others
If you take the news too seriously it will tell you people are criminals, thugs, terrorists, or just plain nasty. But there is another side of humanity that the news doesn't advertise: people who actually love and care for others without expecting anything in return. We have experienced first hand the many people who live out the "Do unto others" command better than we've seen it done (and for which we are grateful recipients)..
Being on this side of an illness is teaching us things we never really had to think about: how best to support others in their time of need (because now we've experienced the best ways people have supported us); when to reach out to someone in need (people need different things at different times) and that prayer is incredibly powerful and comforting. We continue to get emails, calls, letters and cards. It blows me away how kind, thoughtful and caring friends, family and even total strangers have been. Thank you for being great examples.
Being on this side of an illness is teaching us things we never really had to think about: how best to support others in their time of need (because now we've experienced the best ways people have supported us); when to reach out to someone in need (people need different things at different times) and that prayer is incredibly powerful and comforting. We continue to get emails, calls, letters and cards. It blows me away how kind, thoughtful and caring friends, family and even total strangers have been. Thank you for being great examples.
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