So we met with Dr. Lang yesterday. I want to call her Jennifer which I can do in person, but when I write, it keeps coming out with the Dr. title. Someone please 'splain that to me...
Anyway, to see Nancy's treatment schedule for round 3 which starts next week, in comparison to her first round of treatments, gives one an appreciation of how the art comes into play here. She is scheduled for a total of 9 visits to the infusion center over the 2 week period surrounding her treatments. These include three chemo treatments, 5 hydrations, 4 or 5 white blood cell boosters (neupogen and neulasta) and one blood test. This was all tweaked since her first round, which was only 3 visits and, you will recall, pure hell...
One of the things we we have discovered is that different patients can have widely varying reactions to the same exact chemo protocol. The art of the treatment is when the team analyzes and adjusts for the reactions and side effects.
The results of that tweaking were displayed yesterday as our visit was so much easier and calmer than other visits. Nanc was totally exhausted by the time we got home, but as I keep saying, the difference is like night and day. Plus I think the routine has taken over for us even more now.
She of course doesn't feel the difference as much as we see it. That is because it was still like being in a "shit-hole" for 5 or 6 days as she likes to put it. What it comes down to right now I think, is that she is now a full fledged, arrow packing, gun toting cancer warrior.
I need to take some pictures with her blue scarf, white knit top and beads. She looked very good if I have to say so myself. I would say more but know the kids would get grossed out so I will keep that between Nanc and me.
xoxo
Thursday, August 2, 2007
Wednesday, August 1, 2007
I almost forgot!
Dr. Lang finished her first marathon on Sunday in a time of 4:20:29. Now I'm not much of an expert on marathon times, but having attempted similar things on the bike and recently in the pool, I am impressed that she not only finished but finished 416 out of 1454 women and 1879 out of 4275 overall!
Congratulations to Jen and here's hoping you all sent in your checks ;-) You forgot? Go back to this post in case it slipped your mind...
I am skipping days here lately because there's not much to report in the way of treatment, complications, major side effects, etc. All in all, like I said on Monday, the week has been very good relatively speaking.
The difference between rounds one and two is seriously like night and day. Nanc's taste buds are still a little slow coming around - things are mealy but getting better. She's gotten out to two meetings and is planning on more outings as her energy allows. She has been experiencing some abdominal pain that Dr. Lang thinks is from the chemo. We see her later today and will report back if she says anything different.
The biggest development to report is that she finally hired someone to come in and help her take care of her clients! We got a call last Saturday from an old friend named Sean who used to do a little work for her years ago. She heard about Nanc's situation and was just calling to see how she was doing. Sean is a cancer survivor herself and has been cancer free for quite a few years. They were comparing catheter port scars in the kitchen last night. Sean was jealous because Nancy's surgeon did a better job...
Anyway, Sean has been working doing books for quite a while and has just gone off on her own and had some extra time. The current plan is to have her come in twice a week. To say that she blew through the input yesterday would be an understatement. The girl is fast...
Serendipity strikes again...
xoxo
Congratulations to Jen and here's hoping you all sent in your checks ;-) You forgot? Go back to this post in case it slipped your mind...
I am skipping days here lately because there's not much to report in the way of treatment, complications, major side effects, etc. All in all, like I said on Monday, the week has been very good relatively speaking.
The difference between rounds one and two is seriously like night and day. Nanc's taste buds are still a little slow coming around - things are mealy but getting better. She's gotten out to two meetings and is planning on more outings as her energy allows. She has been experiencing some abdominal pain that Dr. Lang thinks is from the chemo. We see her later today and will report back if she says anything different.
The biggest development to report is that she finally hired someone to come in and help her take care of her clients! We got a call last Saturday from an old friend named Sean who used to do a little work for her years ago. She heard about Nanc's situation and was just calling to see how she was doing. Sean is a cancer survivor herself and has been cancer free for quite a few years. They were comparing catheter port scars in the kitchen last night. Sean was jealous because Nancy's surgeon did a better job...
Anyway, Sean has been working doing books for quite a while and has just gone off on her own and had some extra time. The current plan is to have her come in twice a week. To say that she blew through the input yesterday would be an understatement. The girl is fast...
Serendipity strikes again...
xoxo
Monday, July 30, 2007
A theory of chemo relativity
To say that yesterday and today were good days would be too simplistic of a statement without giving some thought as to what makes a good day when you are undergoing chemo treatments. You see it really is relative to your experience.
Once you consider what goes into making a good day vs. a bad day, you get a whole different outlook. And not just on the one day, but on your life as well. Seems a fairly heavy statement I know, but I am noticing a difference on how easy certain things will roll off Nancy's back or my own for that matter. But that is getting a little ahead of what I was trying to say...
It's about choosing to look at the glass half full and not half empty. (I know! I promise it's the last time I'll use that phrase.) It's about appreciating the fact that you can walk half way around the block even though you could walk miles a few months ago...
So, I hope you get the picture. Each day a little better, a little stronger. This is the "good week." Next week, well we wont' go there - it's next week and today was a good day...
xoxo
Once you consider what goes into making a good day vs. a bad day, you get a whole different outlook. And not just on the one day, but on your life as well. Seems a fairly heavy statement I know, but I am noticing a difference on how easy certain things will roll off Nancy's back or my own for that matter. But that is getting a little ahead of what I was trying to say...
It's about choosing to look at the glass half full and not half empty. (I know! I promise it's the last time I'll use that phrase.) It's about appreciating the fact that you can walk half way around the block even though you could walk miles a few months ago...
So, I hope you get the picture. Each day a little better, a little stronger. This is the "good week." Next week, well we wont' go there - it's next week and today was a good day...
xoxo
Saturday, July 28, 2007
Up, Down, All Around
That pretty much describes day 4 since Nancy's last treatment. The day started out well but presented some challenges you could say. I mean, we are talking cancer and chemo therapy here, not the flu or a tooth ache...
One of her favorite phrases seems to be, "What is wrong with me?" As if she didn't know. Or better yet, she does know but either forgets or thinks the way she feels sometimes is just going to go away if she could just find that one magic fix. I just keep reminding her that she is a cancer patient and that it will get better. Maybe not when she wants it to get better, but it will get better.
This is an interesting period for some not so obvious reasons. Like I wrote yesterday, the wind's stopped and all seems calm at first. But underneath that "calm" is some very real unrest - physical and emotional.
The biggest physical aspect seems to remain food. Either finding things that actually taste good or being able to eat enough once you hit on something. And it's about remembering to eat before she gets too hungry. It's like pain management - you stay ahead of it before it gets to be too big of a gorilla.
Then there's some more subtle things that she has to battle right now, including restlessness and an inability to concentrate. We were talking today about the fact that maybe she tried to do too much yesterday and today, and that her stomach pain and nausea tonight were a direct result of that. So we thought that tomorrow she should just take it easy.
"But what do I do all day?"
"Why don't you try just reading the paper..."
"I can't read, my eyesight is all off right now."
"Okay, then we watch TV and movies all day. Listen to some music."
We joke that she is sometimes a better patient than at other times. But through it all, I am so proud of how she's handled it. I will admit that she scares me when she begins to doubt her ability to finish the treatment. I probably shouldn't be writing this - but what the hell - you're all part of her recovery now. I go back to what I said a minute ago, "It will get better. No one can say exactly how or when, but it will get better. You will not always feel this shitty."
You feel so helpless, so powerless to fix it all. The only tools I am left with are reassurance, some soup, a glass of lemonade and a back rub. You try to deal with each day as it unfolds.
So, enough of that. On to another angel since it's been a while. ( I need to take more pictures next week.)
Meet Nurse Alicia. Alicia is the quiet, but oh so efficient type. The kind you really want in your corner when the you-know-what hits the fan. Not only does she really know her stuff, she has a real calm assurance about her that puts you at ease when in her care.
So, lets' see what Sunday has in store ;-)
xoxo
One of her favorite phrases seems to be, "What is wrong with me?" As if she didn't know. Or better yet, she does know but either forgets or thinks the way she feels sometimes is just going to go away if she could just find that one magic fix. I just keep reminding her that she is a cancer patient and that it will get better. Maybe not when she wants it to get better, but it will get better.
This is an interesting period for some not so obvious reasons. Like I wrote yesterday, the wind's stopped and all seems calm at first. But underneath that "calm" is some very real unrest - physical and emotional.
The biggest physical aspect seems to remain food. Either finding things that actually taste good or being able to eat enough once you hit on something. And it's about remembering to eat before she gets too hungry. It's like pain management - you stay ahead of it before it gets to be too big of a gorilla.
Then there's some more subtle things that she has to battle right now, including restlessness and an inability to concentrate. We were talking today about the fact that maybe she tried to do too much yesterday and today, and that her stomach pain and nausea tonight were a direct result of that. So we thought that tomorrow she should just take it easy.
"But what do I do all day?"
"Why don't you try just reading the paper..."
"I can't read, my eyesight is all off right now."
"Okay, then we watch TV and movies all day. Listen to some music."
We joke that she is sometimes a better patient than at other times. But through it all, I am so proud of how she's handled it. I will admit that she scares me when she begins to doubt her ability to finish the treatment. I probably shouldn't be writing this - but what the hell - you're all part of her recovery now. I go back to what I said a minute ago, "It will get better. No one can say exactly how or when, but it will get better. You will not always feel this shitty."
You feel so helpless, so powerless to fix it all. The only tools I am left with are reassurance, some soup, a glass of lemonade and a back rub. You try to deal with each day as it unfolds.
So, enough of that. On to another angel since it's been a while. ( I need to take more pictures next week.)
Meet Nurse Alicia. Alicia is the quiet, but oh so efficient type. The kind you really want in your corner when the you-know-what hits the fan. Not only does she really know her stuff, she has a real calm assurance about her that puts you at ease when in her care.
So, lets' see what Sunday has in store ;-)
xoxo
Friday, July 27, 2007
"Ain't it grand the wind stopped blowin'?"
For those of you not familiar with the phrase, imagine a family coming out of a storm shelter to view the wreckage of a tornado and dad says, "Don't see anything the matter here, Ma. Ain't it grand the wind stopped blowin'?."
This is sort of how I have been feeling the last two days about Nanc's condition. The treatments are over for another 10 days, no more trips to the hospital, no hydrations, no needles, no major nausea - basically the wind has stopped blowing.
However, there are still certain effects of the chemo that would be easy to overlook. Let's see, there's the neuropathy, the hair loss, the totally wacked out taste buds, the fatigue, the inconsistent bodily functions and more if I could take the time to catalog them all. It would be easy to let up on our attention to these and to what we need to do in order to lessen them for now and for future treatments just because she's feeling a little better.
Diet, exercise, hydration with electrolytes, and lots of rest over the next ten days and the next round will be that much easier. Especially if combine these things with everything we've learned over the last 5 weeks.
It's all about little steps. We're not talking about a 14 oz. porterhouse, mashed potatoes and cheesecake followed by a 5 mile hike. It's enough that the oatmeal tasted good, (she ate a whole bowl along with a couple of slices of a fresh peach,) walked half way around the block, and did it all without feeling like she was going to puke. And she was able to actually put in a few hours of work.
It's the little things that give hope - that make her feel like "Hey, maybe I can get through this thing!"
xoxo
This is sort of how I have been feeling the last two days about Nanc's condition. The treatments are over for another 10 days, no more trips to the hospital, no hydrations, no needles, no major nausea - basically the wind has stopped blowing.
However, there are still certain effects of the chemo that would be easy to overlook. Let's see, there's the neuropathy, the hair loss, the totally wacked out taste buds, the fatigue, the inconsistent bodily functions and more if I could take the time to catalog them all. It would be easy to let up on our attention to these and to what we need to do in order to lessen them for now and for future treatments just because she's feeling a little better.
Diet, exercise, hydration with electrolytes, and lots of rest over the next ten days and the next round will be that much easier. Especially if combine these things with everything we've learned over the last 5 weeks.
It's all about little steps. We're not talking about a 14 oz. porterhouse, mashed potatoes and cheesecake followed by a 5 mile hike. It's enough that the oatmeal tasted good, (she ate a whole bowl along with a couple of slices of a fresh peach,) walked half way around the block, and did it all without feeling like she was going to puke. And she was able to actually put in a few hours of work.
It's the little things that give hope - that make her feel like "Hey, maybe I can get through this thing!"
xoxo
Wednesday, July 25, 2007
One Third of the Way Through
"Is the glass half empty or half full" would be another way to phrase the thought. Two cycles down and four to go.
"One third done," I keep saying.
"Four more to go," she says.
"One third done," the nurse says.
"Ugh, four more to go," she laments.
"One third done," Dr. Lang says.
"One third done," she finally says.
What a team.....
Nanc had quite an appetite last night, however short lived it turned out to be. Some of the wierd tastes were back this morning. The Kashi waffles were a miss as was orange chicken at Panda Express. Usually one of her favorite things and it was just bleh. (You need to say Bleh out loud as you read to get the full effect.)
We are back today for hydration and the Neulasta like I wrote yesterday. One more hydration tomorrow and we are looking to have maybe a week of fairly decent days next week. Keep your fingers crossed....
As we sit each day at the infusion center, we've gotten good at spotting the newcomers a mile away. I am sure it's exactly how we looked 5 weeks ago. For starters, everyone has hair and it's difficult to tell exactly who the patient is among the posse members when they arrive.
Then there's the deer in the headlight look. That look of pure fear of the unknown. Like jumping off a ledge with no visible safety net. But you come to learn that the nurses, the aids, the schedulers, the pharmacists, the crew that changes the sheets between patients, the IT techs who keep my wireless connection up and running, the clerks who keep all the records in order, and last but not least, your doctors - these are your safety net as you wind your way through that fear until it becomes a routine.
It's become a routine for us and the new ones are easy to spot now. You almost want to run up to them all, give them a big hug and tell them that it's going to be okay.
Nanc has already put her name on a list of patients to be called by women who want to talk to someone going through treatment. Who knows what's in the wind when this is all said and done...
xoxo
"One third done," I keep saying.
"Four more to go," she says.
"One third done," the nurse says.
"Ugh, four more to go," she laments.
"One third done," Dr. Lang says.
"One third done," she finally says.
What a team.....
Nanc had quite an appetite last night, however short lived it turned out to be. Some of the wierd tastes were back this morning. The Kashi waffles were a miss as was orange chicken at Panda Express. Usually one of her favorite things and it was just bleh. (You need to say Bleh out loud as you read to get the full effect.)
We are back today for hydration and the Neulasta like I wrote yesterday. One more hydration tomorrow and we are looking to have maybe a week of fairly decent days next week. Keep your fingers crossed....
As we sit each day at the infusion center, we've gotten good at spotting the newcomers a mile away. I am sure it's exactly how we looked 5 weeks ago. For starters, everyone has hair and it's difficult to tell exactly who the patient is among the posse members when they arrive.
Then there's the deer in the headlight look. That look of pure fear of the unknown. Like jumping off a ledge with no visible safety net. But you come to learn that the nurses, the aids, the schedulers, the pharmacists, the crew that changes the sheets between patients, the IT techs who keep my wireless connection up and running, the clerks who keep all the records in order, and last but not least, your doctors - these are your safety net as you wind your way through that fear until it becomes a routine.
It's become a routine for us and the new ones are easy to spot now. You almost want to run up to them all, give them a big hug and tell them that it's going to be okay.
Nanc has already put her name on a list of patients to be called by women who want to talk to someone going through treatment. Who knows what's in the wind when this is all said and done...
xoxo
Tuesday, July 24, 2007
"I wonder what a normal life would be like..."
Is what Nancy said this morning as we were driving down Ventura Blvd. on our way to the cancer center. It was one of those moments when we both had the same exact thought as we were watching all the people going about their business at 7:30 in the morning. (That's one of the side effects of being together for 30 years.) The cancer world makes you forget what your old life used to be like pretty quickly. We were both in agreement on that little observation.
However, it seems that we are in some disagreement on how she did last week in terms of the chemo. I am of the opinion that she handled this round much better than the first time. Nanc has a different opinion because it was still very difficult on her physically and emotionally. For a third perspective, Dr. Lang confirmed that this round was like night and day compared to the last round. She was severely dehydrated three weeks ago, hadn't eaten or drank anything in days, and was so weak she could barely walk. We even had to delay her treatment for 2 days.
I won't deny that it was hard for her because it really was. Sunday and Monday were the worst of them all. Nothing tasted good, it was hard just to drink. Not that she couldn't keep things down, she couldn't get anything down. The mere thought of certain things made her gag. And forget about tasting or smelling things - even water smelled funny.
It's really hard to see someone you love so much have to go through something like this. Some days, it takes all your energy just to get even so you can stay positive and keep up the fight. Tears seem to be stuck at the back of your throat and can start flowing for no reason. And the only thing that tastes good to you is vanilla ice cream. Am I having sympathy side effects? More likely it's the stress of being a care giver, a position I was will to take on but had no idea how hard it can be. I am not feeling sorry for myself, don't get me wrong. I am just going back to our main theme this morning for a second.
However, no matter what Nancy says, she still did a lot better this time than last time. Besides, you can't trust her opinion right now - she has chemo brain - and I have the keyboard...
We are at Cedars today, getting some hydration, waiting for the blood work to come back so we can start the IP Taxal. She's feeling better right this minute, sitting up in bed, chatting on the phone and nibbling on a pbj sandwich. But even that was "mealy" she said so she's sticking with an orange. Then it's on to chocolate pudding to see how that goes. Sometimes we try 8 or 9 things until we hit on something that works.
Her blood work shows a slight drop in white blood count, she's a little anemic and has a lowered potassium count, again. So, along with the chemo today she will get a shot of Aranesp for the red blood count and more potassium through the IV. Tomorrow, along with more hydration, she will get something to raise her white blood count called Neulasta.
And if you want to read and listen to another perspective on what the world of cancer can be like, there's a great blog on NPR written by Leroy Sievers, a real writer, suffering from brain cancer. He also produces weekly podcasts that are broadcast on NPR. Yesterday's entry "Cancer Doesn't Care Whether You Want to Go" is worth listening to or reading. There's a link to the audio on the site.
If you don't want to read through his blog, here are two of my favorite quotes that I related to when I was browsing around yesterday:
"After that day, your life is never the same. "That day" is the day the doctor tells you, "You have cancer." Every one of us knows someone who's had to face that news. It's scary, it's sad. But it's still life, and it's a life worth living. "My Cancer" is a daily account of my life and my fight with cancer."
"When I was first diagnosed with cancer, when the doctor looks at you and tells you that your old life is over, that you're about to enter a strange and terrifying new world, your brain is screaming, "I'm not going, I'm not going." You only have a few seconds to process the doctor's words, and then, whether you want to or not, you're going into Cancer World.
"And at each fork in the cancer road, you scream those words to yourself, over and over again. Starting chemo? I'm not going. Brain surgery? I'm not going. Radiation, Radio Frequency Ablation, Cryoablation. Verterbroplasty? I'm not going, I'm not going, I'm not going.
"Except that you know you are. Even though that next step is going to be scary, probably painful, you know that you're going to go. You don't really have a choice."
"Sometimes I try to fool myself into believing that I have some control over what happens to me too. But I know better. Even when you have a pretty good idea of how the battle's going to turn out, sometimes you have no choice. You get out of the helicopter and hope for the best."
It's now 2:00 and she is almost done with the chemo for today. She had quite a bit of difficulty today with joint and limb pain. It was explained by the nurses as a result of the low potassium and a side effect of the taxol. Not easy to take at all but heat helps. And then comes her version of "I'm not going" which is "I'm not doing this again."
We should be home by 3:30 or so unless she has me driving all around LA in search of something that tastes like it's supposed to taste. We will at least be stopping to pick up some soft French rolls to make a sandwich she remembers from high school. I'll do just about anything if it gets her to eat.
Oh, and we discovered Pedialite freeze pops too. Great electrolyte replacement alternative to Gatorade or pills for that matter.
So, that's a little glimpse into our normal life, or cancer world right now....
xoxo
However, it seems that we are in some disagreement on how she did last week in terms of the chemo. I am of the opinion that she handled this round much better than the first time. Nanc has a different opinion because it was still very difficult on her physically and emotionally. For a third perspective, Dr. Lang confirmed that this round was like night and day compared to the last round. She was severely dehydrated three weeks ago, hadn't eaten or drank anything in days, and was so weak she could barely walk. We even had to delay her treatment for 2 days.
I won't deny that it was hard for her because it really was. Sunday and Monday were the worst of them all. Nothing tasted good, it was hard just to drink. Not that she couldn't keep things down, she couldn't get anything down. The mere thought of certain things made her gag. And forget about tasting or smelling things - even water smelled funny.
It's really hard to see someone you love so much have to go through something like this. Some days, it takes all your energy just to get even so you can stay positive and keep up the fight. Tears seem to be stuck at the back of your throat and can start flowing for no reason. And the only thing that tastes good to you is vanilla ice cream. Am I having sympathy side effects? More likely it's the stress of being a care giver, a position I was will to take on but had no idea how hard it can be. I am not feeling sorry for myself, don't get me wrong. I am just going back to our main theme this morning for a second.
However, no matter what Nancy says, she still did a lot better this time than last time. Besides, you can't trust her opinion right now - she has chemo brain - and I have the keyboard...
We are at Cedars today, getting some hydration, waiting for the blood work to come back so we can start the IP Taxal. She's feeling better right this minute, sitting up in bed, chatting on the phone and nibbling on a pbj sandwich. But even that was "mealy" she said so she's sticking with an orange. Then it's on to chocolate pudding to see how that goes. Sometimes we try 8 or 9 things until we hit on something that works.
Her blood work shows a slight drop in white blood count, she's a little anemic and has a lowered potassium count, again. So, along with the chemo today she will get a shot of Aranesp for the red blood count and more potassium through the IV. Tomorrow, along with more hydration, she will get something to raise her white blood count called Neulasta.
And if you want to read and listen to another perspective on what the world of cancer can be like, there's a great blog on NPR written by Leroy Sievers, a real writer, suffering from brain cancer. He also produces weekly podcasts that are broadcast on NPR. Yesterday's entry "Cancer Doesn't Care Whether You Want to Go" is worth listening to or reading. There's a link to the audio on the site.
If you don't want to read through his blog, here are two of my favorite quotes that I related to when I was browsing around yesterday:
"After that day, your life is never the same. "That day" is the day the doctor tells you, "You have cancer." Every one of us knows someone who's had to face that news. It's scary, it's sad. But it's still life, and it's a life worth living. "My Cancer" is a daily account of my life and my fight with cancer."
"When I was first diagnosed with cancer, when the doctor looks at you and tells you that your old life is over, that you're about to enter a strange and terrifying new world, your brain is screaming, "I'm not going, I'm not going." You only have a few seconds to process the doctor's words, and then, whether you want to or not, you're going into Cancer World.
"And at each fork in the cancer road, you scream those words to yourself, over and over again. Starting chemo? I'm not going. Brain surgery? I'm not going. Radiation, Radio Frequency Ablation, Cryoablation. Verterbroplasty? I'm not going, I'm not going, I'm not going.
"Except that you know you are. Even though that next step is going to be scary, probably painful, you know that you're going to go. You don't really have a choice."
"Sometimes I try to fool myself into believing that I have some control over what happens to me too. But I know better. Even when you have a pretty good idea of how the battle's going to turn out, sometimes you have no choice. You get out of the helicopter and hope for the best."
It's now 2:00 and she is almost done with the chemo for today. She had quite a bit of difficulty today with joint and limb pain. It was explained by the nurses as a result of the low potassium and a side effect of the taxol. Not easy to take at all but heat helps. And then comes her version of "I'm not going" which is "I'm not doing this again."
We should be home by 3:30 or so unless she has me driving all around LA in search of something that tastes like it's supposed to taste. We will at least be stopping to pick up some soft French rolls to make a sandwich she remembers from high school. I'll do just about anything if it gets her to eat.
Oh, and we discovered Pedialite freeze pops too. Great electrolyte replacement alternative to Gatorade or pills for that matter.
So, that's a little glimpse into our normal life, or cancer world right now....
xoxo
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