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
Monday, July 30, 2007
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
Sunday, July 22, 2007
Note to self...
Cancer patients undergoing chemo who find it difficult to eat and/or drink, need nourishment at short intervals. Small meals about 2 hours apart consisting of anything they can tolerate.
We forgot this little tidbit of information today. It made the day more up and down than it had to be as Nanc got too hungry this afternoon and was weak and a little dis-oriented as a result. We won't let that one happen again.
All in all, she is doing better than last time thanks to all the hydration the last 3 days. That and a refrigerator full of food. Thanks to everyone who dropped it off this week! We can't thank you enough...
And a special thanks to Scott, Nancy's brother, who came down and helped out this week. He weeded, planted, took out the garbage and all it cost me was a few cappuccinos and one fancy hose nozzle from OSH ;-)
So, to Scott, the food folks, the folks who just drop by and take care of stuff for us, we can't express our gratitude enough...
xoxo
We forgot this little tidbit of information today. It made the day more up and down than it had to be as Nanc got too hungry this afternoon and was weak and a little dis-oriented as a result. We won't let that one happen again.
All in all, she is doing better than last time thanks to all the hydration the last 3 days. That and a refrigerator full of food. Thanks to everyone who dropped it off this week! We can't thank you enough...
And a special thanks to Scott, Nancy's brother, who came down and helped out this week. He weeded, planted, took out the garbage and all it cost me was a few cappuccinos and one fancy hose nozzle from OSH ;-)
So, to Scott, the food folks, the folks who just drop by and take care of stuff for us, we can't express our gratitude enough...
xoxo
Saturday, July 21, 2007
My one and only pitch...
I promise. However, I think once you read the following two letters, you will agree with me on a couple of things. One is that Dr. Jennifer Lang (Jennie) is a very special woman. The other is that cancer research has come a long way but still has a very long way to go. One visit to the clinic or the infusion center is proof enough. Trust me on that one.
So, the first letter speaks for itself and then you will get to hear from another of Nancy's angels, Dr. Lang.
June 29, 2007
Dear Friends,
It has been three and a half years of many surgeries, 12 cycles of intravenous chemo, 6 cycles of intraperitoneal chemo, endless scans, blood tests, hospital stays, trips to doctors, the list goes on. I am one of the lucky ones. Each day I am getting stronger, my hair is growing in, my scans are clear.
Yet, there is still no cure.
Along this difficult journey I have been extremely fortunate to meet and be treated by so many compassionate, caring, dedicated, intelligent and just plain amazing medical professionals.
Last summer Jennifer Lang, MD, UCLA/Cedars Sinai Gynecologic Oncology Fellow, came into my hospital room at a very difficult moment in my treatment. She put me at ease and touched my heart; actually we touched each others hearts. A short time later Dr. Lang told me that she had decided to run a marathon and raise money for women’s cancer research. In between her 16 hour days (mostly 7 days a week) she has trained for and will run the San Francisco Marathon on July 29. She will cover the 26.2 miles to raise money for the Women’s Cancer Research Institute (WCRI) at Cedars Sinai Hospital.
Dr. Lang is doing this for me. For all women.
Please join me in supporting Jennifer’s Run. Read what she has to say.
Open your wallets, your hearts. It all adds up. Every dollar matters
No one should ever have to hear this terrible diagnosis.
Love,
Linda
And here is Jennifer's Marathon Mission Statement:
Linda Gordon lay in her hospital bed, wearing black round-rimmed glasses and a red kimono, and told me a story that changed my life.
I had arrived in California just weeks before to begin a fellowship training program in Gynecologic Oncology. Linda was the first patient I had personally been responsible for accompanying through a full course of intraperitoneal (IP) chemotherapy. It’s a tough regimen, and Linda was coping with harsh side-effects. Through it all, her grace and poise, beauty and intellect were an inspiration to me. All of the so-called problems in my own life seemed to melt into meaninglessness when I thought about Linda, and women like her everywhere facing this fight against cancer.
The tools we had to offer her- surgery, cytotoxic drugs, imperfect imaging studies and even more imperfect blood tests for monitoring tumor markers- seemed far from adequate. So much progress has been made in Women’s Cancer, but there is still so far to go.
Linda told me about her wonderful friend Gail, who at age 43 was diagnosed with metastatic breast cancer. Linda decided to run a marathon to raise money for breast cancer research. She did, and handed over a check for $17,000 to a local hospital, where ground-breaking breast cancer research continues to take place. I knew in that moment that I had to run a marathon for Linda. If she could get through 6 cycles of IP chemo (in addition to the 12 cycles of IV chemo she already had), I could damn-well get through 26.2 miles of road.
Dr Beth Karlan, past-president of the Society for Gynecologic Oncologists, and Director of the Women’s Cancer Research Institute (WCRI) at Cedars-Sinai Hospital in Los Angeles, has been a role model to me for the merging of compassionate cancer care with cutting-edge basic science research.
The mission statement of the multidisciplinary WCRI is: “To reduce the threat of cancer to women through research, education, early detection and prevention.“
Personally, I’m very demanding of myself and my field:
I chose the San Francisco Marathon deliberately. The road to a cure for women’s cancers will have many hills along the way. This will be the most challenging thing I have ever done. But I know that I will be carried along by the spirit and courage of all the beautiful women who have, are presently, and will face a cancer diagnosis at some point in their lives.
My dear friend and trainer said to me: “If you want to run a marathon, you need a REALLY BIG reason.” Advancing cancer science is the only way that we are going to win this battle. So here’s my “big reason”: I’m running for Linda.
Please support all the women in your life by contributing to this cause.
Jennifer Lang, MD
If you find yourself in a position to be able to donate to this cause and further research on women's cancer, click here for a contribution form and contact information. It is in PDF format so you will need Adobe Acrobat to view and print the form. Click here if you need the free viewer.
And how is Nancy today you ask? Better but still suffering through the major side effects of the two treatments on Tuesday and Wednesday. Her potassium is back up to 3.9 today, the highest it's been since she started chemo I think. She ate a little and is asking for Jack in the Box. We'll hit the drive-thru on the way home ;-)
xoxo
So, the first letter speaks for itself and then you will get to hear from another of Nancy's angels, Dr. Lang.
June 29, 2007
Dear Friends,
It has been three and a half years of many surgeries, 12 cycles of intravenous chemo, 6 cycles of intraperitoneal chemo, endless scans, blood tests, hospital stays, trips to doctors, the list goes on. I am one of the lucky ones. Each day I am getting stronger, my hair is growing in, my scans are clear.
Yet, there is still no cure.
Along this difficult journey I have been extremely fortunate to meet and be treated by so many compassionate, caring, dedicated, intelligent and just plain amazing medical professionals.
Last summer Jennifer Lang, MD, UCLA/Cedars Sinai Gynecologic Oncology Fellow, came into my hospital room at a very difficult moment in my treatment. She put me at ease and touched my heart; actually we touched each others hearts. A short time later Dr. Lang told me that she had decided to run a marathon and raise money for women’s cancer research. In between her 16 hour days (mostly 7 days a week) she has trained for and will run the San Francisco Marathon on July 29. She will cover the 26.2 miles to raise money for the Women’s Cancer Research Institute (WCRI) at Cedars Sinai Hospital.
Dr. Lang is doing this for me. For all women.
Please join me in supporting Jennifer’s Run. Read what she has to say.
Open your wallets, your hearts. It all adds up. Every dollar matters
No one should ever have to hear this terrible diagnosis.
Love,
Linda
And here is Jennifer's Marathon Mission Statement:
Linda Gordon lay in her hospital bed, wearing black round-rimmed glasses and a red kimono, and told me a story that changed my life.I had arrived in California just weeks before to begin a fellowship training program in Gynecologic Oncology. Linda was the first patient I had personally been responsible for accompanying through a full course of intraperitoneal (IP) chemotherapy. It’s a tough regimen, and Linda was coping with harsh side-effects. Through it all, her grace and poise, beauty and intellect were an inspiration to me. All of the so-called problems in my own life seemed to melt into meaninglessness when I thought about Linda, and women like her everywhere facing this fight against cancer.
The tools we had to offer her- surgery, cytotoxic drugs, imperfect imaging studies and even more imperfect blood tests for monitoring tumor markers- seemed far from adequate. So much progress has been made in Women’s Cancer, but there is still so far to go.
Linda told me about her wonderful friend Gail, who at age 43 was diagnosed with metastatic breast cancer. Linda decided to run a marathon to raise money for breast cancer research. She did, and handed over a check for $17,000 to a local hospital, where ground-breaking breast cancer research continues to take place. I knew in that moment that I had to run a marathon for Linda. If she could get through 6 cycles of IP chemo (in addition to the 12 cycles of IV chemo she already had), I could damn-well get through 26.2 miles of road.
Dr Beth Karlan, past-president of the Society for Gynecologic Oncologists, and Director of the Women’s Cancer Research Institute (WCRI) at Cedars-Sinai Hospital in Los Angeles, has been a role model to me for the merging of compassionate cancer care with cutting-edge basic science research.
The mission statement of the multidisciplinary WCRI is: “To reduce the threat of cancer to women through research, education, early detection and prevention.“
Personally, I’m very demanding of myself and my field:
- I want screening tests that identify women at risk for cancer, or in the earliest stage so that we can prevent disease from taking hold.
- I want medications and treatment plans that eliminate disease without harsh side-effects.
- I want women, the pillars of society, to know that we pledge to do everything in our power to preserve their health and wellness and help them to live long and productive lives.
I chose the San Francisco Marathon deliberately. The road to a cure for women’s cancers will have many hills along the way. This will be the most challenging thing I have ever done. But I know that I will be carried along by the spirit and courage of all the beautiful women who have, are presently, and will face a cancer diagnosis at some point in their lives.
My dear friend and trainer said to me: “If you want to run a marathon, you need a REALLY BIG reason.” Advancing cancer science is the only way that we are going to win this battle. So here’s my “big reason”: I’m running for Linda.
Please support all the women in your life by contributing to this cause.
Jennifer Lang, MD
If you find yourself in a position to be able to donate to this cause and further research on women's cancer, click here for a contribution form and contact information. It is in PDF format so you will need Adobe Acrobat to view and print the form. Click here if you need the free viewer.
And how is Nancy today you ask? Better but still suffering through the major side effects of the two treatments on Tuesday and Wednesday. Her potassium is back up to 3.9 today, the highest it's been since she started chemo I think. She ate a little and is asking for Jack in the Box. We'll hit the drive-thru on the way home ;-)
xoxo
Friday, July 20, 2007
"I thought I knew what fatigue was..."
"...until I started working here." - Nurse Cyndy.
As quoted to me today when we were discussing how Nanc feels today. As it turns out, her potassium levels are way down to 2.9 again. Of course you remember from last week's lesson that potassium levels should be between 3.5 and 4.5.
So, we came in for a planned infusion at 10 this morning and were expecting to leave at around 12:30. But we'll be here until at least 5 as the potassium infusion has to be done slowly, at the rate of 40 meq. over 4 hours. (I didn't know what meq was either. Click on it and find out...) She also needs to go back on the oral potassium once a day throughout her treatments to keep it form dropping again.
That's all the news tha's fit to print right now - however, the day is still young...
xoxo
As quoted to me today when we were discussing how Nanc feels today. As it turns out, her potassium levels are way down to 2.9 again. Of course you remember from last week's lesson that potassium levels should be between 3.5 and 4.5.
So, we came in for a planned infusion at 10 this morning and were expecting to leave at around 12:30. But we'll be here until at least 5 as the potassium infusion has to be done slowly, at the rate of 40 meq. over 4 hours. (I didn't know what meq was either. Click on it and find out...) She also needs to go back on the oral potassium once a day throughout her treatments to keep it form dropping again.
That's all the news tha's fit to print right now - however, the day is still young...
xoxo
Thursday, July 19, 2007
Kristal - aka. Krissy Krissy, Girl Dog - 1992(?) - July 19, 2007
Now you have to realize something from the start. This whole blog is how Ed sees it. If you ask the kids or Nanc about how we came to be adopted by Kristal, you are more than likely going to get a different story than the one I am baout to spin. I suggest you stick with mine because my memory is better than all of theirs put together...Kristal came to us, as close as we can remember, at some point in 1994. She was a stray in the neighborhood and Nanc was determined to rescue this dog come hell or high water. She had been in and around the neighborhood for at least a week, maybe longer, before we able were to coral her into the backyard with pieces of pizza.
A day or two before that, I had tried to approach her. She was hiding in some bushes in a neighbor's yard. I could see how frightened she was so I gingerly crept towards her. If I went any slower I would have fallen down. The noise that came from her when I was about 20 feet away was a sound I had never heard from a dog before. It wasn't a growl or a bark but almost a shriek or a scream. This poor dog was about as stressed as I had ever seen an animal, or a human for that matter. I knew she'd fit right in...
So the kids laid a trail of pizza into the yard and she followed it. Those first few months, she acclimated well to Nanc and the kids but wouldn't come near me or any man for that matter. In fact, she was most agitated when large men with beards and caps would come into the house. I'll let you paint the rest of that picture...
Anyway, at least a month had gone by and she still wasn't having any of me. Until one day, as I was sitting at my desk typing away at some meaningless computer project, she came up from behind, put her paws on my shoulders and nuzzled her snout into my neck. I told her that if she was going to continue to play hard to get, her little tease would be wasted. She wasn't and I was hooked.
You couldn't ask for a more gentle and loving dog as Kristal. She was the queen of Atley's bed, loved to have her belly rubbed, couldn't stand to have flies in the house, (that really used to drive her nuts) had stomach and seizure problems and a heart as big as a lot of people...
She went out this morning with grace, dignity and lots of love. We were all there with her as she died, in her favorite spot, smack dab in the the middle of our bed. She is already missed. Especially by her boys...
xoxo
Wednesday, July 18, 2007
Back Home
So what started out as a potential nightmare turned into a very cool thing the last 24 hours. When we were first given the appointment for yesterday we were told they were full and would have to re-schedule. Then we found out that we could go in at night - 8:00 to start and then come back at 1 PM the next day for day 2.
Well, we arranged an early start like I told you and they had us stay overnight and they had her go right into day 2 at 6 this morning. We would up knocking off 2 rounds of chemo in less than 24 hours. It was so easy that Nanc had me change days 1 and 2 of round 3 to do the same thing.
The day was fairly uneventful and only mildly painful at the end due to the amount of fluid that flows into her abdomen. She was comfortable this afternoon and early evening but had a major wave of nausea tonight. It must have been my cooking. So we got back on the heavy duty anti-nausea stuff and just have to ride it out. As long as she is taking fluids and keeping everything down, she won't get dehydrated.
I finally started a list of "Nancy's Angels" and will begin introducing them slowly so you can get an appreciation of the kind of care she is receiving at Cedars. Today we are introducing to you one of the Cancer Center nurses. Liz hails from New York but it truly only comes out when she says words like "coffee." Sound familiar anyone?? Otherwise you'd think she was a surfer girl from the South Bay. She's worked in all kinds of hospitals, is very confident in her care and is so great with her attention to how Nanc is doing. It's this kind of attention and care that makes her feel so comfortable when she's there and gives her hope that she can get through this thing. My words can't express our admiration for everyone involved in her care. It truly is an amazing team...
More on Kristal after tomorrow morning...
xoxo
Well, we arranged an early start like I told you and they had us stay overnight and they had her go right into day 2 at 6 this morning. We would up knocking off 2 rounds of chemo in less than 24 hours. It was so easy that Nanc had me change days 1 and 2 of round 3 to do the same thing.
The day was fairly uneventful and only mildly painful at the end due to the amount of fluid that flows into her abdomen. She was comfortable this afternoon and early evening but had a major wave of nausea tonight. It must have been my cooking. So we got back on the heavy duty anti-nausea stuff and just have to ride it out. As long as she is taking fluids and keeping everything down, she won't get dehydrated.
I finally started a list of "Nancy's Angels" and will begin introducing them slowly so you can get an appreciation of the kind of care she is receiving at Cedars. Today we are introducing to you one of the Cancer Center nurses. Liz hails from New York but it truly only comes out when she says words like "coffee." Sound familiar anyone?? Otherwise you'd think she was a surfer girl from the South Bay. She's worked in all kinds of hospitals, is very confident in her care and is so great with her attention to how Nanc is doing. It's this kind of attention and care that makes her feel so comfortable when she's there and gives her hope that she can get through this thing. My words can't express our admiration for everyone involved in her care. It truly is an amazing team...More on Kristal after tomorrow morning...
xoxo
Tuesday, July 17, 2007
Ding...
So here we are. Round two.
As I had thought, today was a long day that started around 9:30 with blood work, then over to the out-patient surgical unit for a quick port implant, followed by a somewhat mediocre lunch at Jerry's on Beverly. Then it was off to the acupuncturist, another eval by another doctor and then it was time for chemo.
We were originally scheduled to start the chamo at 8 PM but we got in early. We learned that although they are fully booked, many patients have to postpone treatments due to blood counts. As a result, space opens up mid-morning and we got in almost 4 hours early.
Good thing too because we were scheduled to stay overnight. We are still staying the night so they can start day 2 early and then we can get home early. they are going to turn around and start the premeds at 6 AM and we could be home by 3 if all goes well.
Back to today for a minute. The surgery went well and she doesn't have to retrun until chemo is over to have the port removed. Click here if you want to see a picture of the port they used. And if you can't get enough, click on the "Patient Guide" tab for further reading....
They also gave her a med-alert card in case of a recall. We had a good laugh over that one. That certainly wouldn't be a drop off at the dealer type of recall...
This type of port certainly will be a lot easier to live with in terms of movement, bathing and just overall convenience. The only down side so far is the recovery from the surgery. It's a tad painful right now.
Anna Brantman, the acupuncturist, turned out to be a interesting women from Russia who got her acupuncture training here in California. Nanc even got a treatment today. A few of the needles hurt a little but she handled it easily. When it was over she admitted that she felt some movement in the area of her abdomen that has been giving her some trouble since the surgery and felt some gas movement as well. And that was jsut after one short treatment. Anna want to see her again on Friday and twice a week for a while.
Nanc mentioned that she also wants to try another acupuncturist who would visit her at home. That would sure make things easy...
So what else for today... I looked at her blood counts and it's amazing how different her white count is from 3 weeks ago. No wonder they look at this stuff as often as they do.
We do have some sad news to report to you all. Our oldest dog, Krystal, is in the final stages of liver failure and will have to be put to sleep. We were going to do this on Monday but after discussing it with Atley, we decided to wait until Thursday.
Constance has arranged for a vet to come to the house so we can all be around when she goes. I will dedicate a separate post to Kristal's life with us tomorrow. for now though, suffice it to say that she was a real big part of our lives these last 10 years as she brought us much joy and love. She will be sorely missed.
As I had thought, today was a long day that started around 9:30 with blood work, then over to the out-patient surgical unit for a quick port implant, followed by a somewhat mediocre lunch at Jerry's on Beverly. Then it was off to the acupuncturist, another eval by another doctor and then it was time for chemo.
We were originally scheduled to start the chamo at 8 PM but we got in early. We learned that although they are fully booked, many patients have to postpone treatments due to blood counts. As a result, space opens up mid-morning and we got in almost 4 hours early.
Good thing too because we were scheduled to stay overnight. We are still staying the night so they can start day 2 early and then we can get home early. they are going to turn around and start the premeds at 6 AM and we could be home by 3 if all goes well.
Back to today for a minute. The surgery went well and she doesn't have to retrun until chemo is over to have the port removed. Click here if you want to see a picture of the port they used. And if you can't get enough, click on the "Patient Guide" tab for further reading....
They also gave her a med-alert card in case of a recall. We had a good laugh over that one. That certainly wouldn't be a drop off at the dealer type of recall...
This type of port certainly will be a lot easier to live with in terms of movement, bathing and just overall convenience. The only down side so far is the recovery from the surgery. It's a tad painful right now.
Anna Brantman, the acupuncturist, turned out to be a interesting women from Russia who got her acupuncture training here in California. Nanc even got a treatment today. A few of the needles hurt a little but she handled it easily. When it was over she admitted that she felt some movement in the area of her abdomen that has been giving her some trouble since the surgery and felt some gas movement as well. And that was jsut after one short treatment. Anna want to see her again on Friday and twice a week for a while.
Nanc mentioned that she also wants to try another acupuncturist who would visit her at home. That would sure make things easy...
So what else for today... I looked at her blood counts and it's amazing how different her white count is from 3 weeks ago. No wonder they look at this stuff as often as they do.
We do have some sad news to report to you all. Our oldest dog, Krystal, is in the final stages of liver failure and will have to be put to sleep. We were going to do this on Monday but after discussing it with Atley, we decided to wait until Thursday.Constance has arranged for a vet to come to the house so we can all be around when she goes. I will dedicate a separate post to Kristal's life with us tomorrow. for now though, suffice it to say that she was a real big part of our lives these last 10 years as she brought us much joy and love. She will be sorely missed.
Saturday, July 14, 2007
Caution: Buzz cuts can hurt.
Did you know that if you cut your hair just the right length, it will hurt when you lay down on it? Neither did Nanc - but she knows now...So we went back to David today to get the rest of the hair cut off as she didn't want to see it on her pillow or in the shower drain any more. We actually had a fun time and had about half the shop staring at us by the time he was done. Anyway, he had gotten it to what could have been the perfect length at one point. It was still slightly soft to the touch but just a little blotchy. So the decision was made to go the rest of the way.
Which was sort of okay until we got home and she laid down. The bristles are very uncomfortable. So the lesson is when you get cancer, leave just a little so it's soft when you lay down. (Nancy's cancer tip #1.)
The picture at the right is how she wishes she had left it.
I think you can tell from the top picture that David is a blast to be around. He has the gift of being able to talk about anything. However he is particularly passionate about English soccer.
All in all, today was a good day despite some emotional disturbances in the parking lot of the Jack in the Box on Sepulveda this afternoon. It was reminiscent of a scene from Little Miss Sunshine. That is all I have to say on the subject. Emotions can run high sometimes when you are dealing with something like this in your family. What we have in our family is the ability to forgive, to laugh and to move on. Our kids have really showed us the way in this area...
So back to the day. Nanc's appetite was good and she has really felt half way decent the past two days. The fatigue continues to be the main lasting side effect of the last round.
Okay, so you're asking - how short is it right? Well I am still catching flack on the picture in bed with the cap on. I have been asked to remove it but you will notice that it is still there. It appears that she has no more pull sick than she did before she got sick...
For now though, let's just say that it's a real buzz cut and that it makes the whole thing more real than it was just this morning. And if that's not good enough, then you'll just have to ask her to show you her head when you see her next...
If you dare ;-)
xoxo
Thursday, July 12, 2007
The bell is about to ring for round 2
We had our between chemo round appointment with Leuchter today and have a schedule for round 2 starting next Tuesday. He said she is doing fine and re-iterated to her again that if she has a lot of difficulty with the IP treatments, he can always switch her to the more traditional straight IV treatments.
Today was a decent food day though. She ate a nice dinner of a few things we picked up at the market on the way home. Just picking at a bunch of little things and some melted cheddar on french bread with just the right amount of garlic. Best meal I've seen her eat in days.
Not to make fun or anything - but - it's funny to watch her taste things sometimes. Certain things sound so good at first. And then there's that first bite, the moment of truth. You know in 2 seconds if she's going in for more or spitting it out. The best part is to watch her face when she bites into something and can't spit it out fast enough. I need to post a movie of that. It's one of those moments that should be shared...
There are moments when I think she's waiting to wake up from a bad dream or something to that effect. We had a small meltdown when trying to make appointments for next week. You can't schedule yourself for treatments, it has to be given in an order from the Dr. and they won't do that until they see you the week before. So, the days we wanted and expected because we were told we would get, were totally booked.
Well it spiraled into a full out, door kicking tantrum in the hallway. It wound up that we just need to come in a little later that day, at 8PM in stead of 4PM. It makes the day long but it's worth it as the IV is a quickie and it will keep her on a schedule...
We laughed about it tonight but the stress is very real.
However, the next few days are going to be interesting. To start, Nanc is having a buzz cut on Saturday. Her hair is starting to fall out in strands and clumps. I wonder who is shedding more right now, her or the dogs...
Sunday will be a day to rest and recoup.
Monday she has one appointment with a member of the pain team at 2.
Tuesday is a huge day:
Then it's back the next day at 1:00 for day 2.
The other thing we are going to look into is a meditation class over at the Wellness Center. At this point in time, we are going to try just about anything to help ease the side effects as we approach next week.
xoxo
Today was a decent food day though. She ate a nice dinner of a few things we picked up at the market on the way home. Just picking at a bunch of little things and some melted cheddar on french bread with just the right amount of garlic. Best meal I've seen her eat in days.
Not to make fun or anything - but - it's funny to watch her taste things sometimes. Certain things sound so good at first. And then there's that first bite, the moment of truth. You know in 2 seconds if she's going in for more or spitting it out. The best part is to watch her face when she bites into something and can't spit it out fast enough. I need to post a movie of that. It's one of those moments that should be shared...
There are moments when I think she's waiting to wake up from a bad dream or something to that effect. We had a small meltdown when trying to make appointments for next week. You can't schedule yourself for treatments, it has to be given in an order from the Dr. and they won't do that until they see you the week before. So, the days we wanted and expected because we were told we would get, were totally booked.
Well it spiraled into a full out, door kicking tantrum in the hallway. It wound up that we just need to come in a little later that day, at 8PM in stead of 4PM. It makes the day long but it's worth it as the IV is a quickie and it will keep her on a schedule...
We laughed about it tonight but the stress is very real.
However, the next few days are going to be interesting. To start, Nanc is having a buzz cut on Saturday. Her hair is starting to fall out in strands and clumps. I wonder who is shedding more right now, her or the dogs...
Sunday will be a day to rest and recoup.
Monday she has one appointment with a member of the pain team at 2.
Tuesday is a huge day:
- 9:30 am blood work
- 10:00 am at the outpatient surgery for catheter port implant
- 3:00 pm appointment with an acupuncturist at Cedars
- Dinner anyone at Jerry's on Beverly and San Vincente? Gary's buying...
- 8:00 pm chemo treatment
Then it's back the next day at 1:00 for day 2.
The other thing we are going to look into is a meditation class over at the Wellness Center. At this point in time, we are going to try just about anything to help ease the side effects as we approach next week.
xoxo
Wednesday, July 11, 2007
Much better this morning...
News brief:
Encino, California
Nancy Wren got up with her husband early this morning and ate quite a large breakfast. The infection in her arm from previous days had added to her condition yesterday more than they thought at first. She is feeling much better already today.
Encino, California
Nancy Wren got up with her husband early this morning and ate quite a large breakfast. The infection in her arm from previous days had added to her condition yesterday more than they thought at first. She is feeling much better already today.
Tuesday, July 10, 2007
It was bye bye picc line, hello keflex!
Nanc awoke this morning to a very low grade fever, but a fever nonetheless. So she called the cancer center and it was back to the hospital for Danika and Nanc today. A quick rundown of the day's events:
We need to keep an eye on her arm and her temperature and call if either are abnormal.
They will insert the port on Tuesday morning early, access it with a needle, have a little lunch and then go back to infusion center for the first day of round 2. They access it during surgery so it's easier on her when she goes in for treatment the same day.
We are also making plans to possibly have some acupuncture next Thursday. We have heard that it can help with the side effects, especially the day after treatment. So we are doing the leg work to make that happen next week as well. We will be discussing that with Dr. Lang on Thursday.
Click here for a brief article on how it works, etc. Thank you Scott...
I want to take some picture of the nurses and doctors on her team and will make more of an effort to do that in the coming weeks. It would be nice to have some faces to go with the names I am sure.
I could go on and on about the day. It sure seems like a lot has gone wrong if I look at that way. It's just the way it is right now for Nanc.
We ahve found that every treatment is different depending on so many factors. Nancy's is what it is and it will be what it's going to be. Our job is to learn how to manage what it is when it happens. We are learning....
A special thanks to Danika today for spending her day at the hospital today... xoxo
- Get triaged, assigned a nurse and remove picc line
- Meet with doctor and then make appointment with surgeon for insertion of a catheter port
- Lunch at Jerry's Deli
- Back to cancer center for more hydration and IV antibiotic
- Home and more stuff to get the plumbing working again
- Salad for dinner
- Couch and then here we are.....
We need to keep an eye on her arm and her temperature and call if either are abnormal.
They will insert the port on Tuesday morning early, access it with a needle, have a little lunch and then go back to infusion center for the first day of round 2. They access it during surgery so it's easier on her when she goes in for treatment the same day.
We are also making plans to possibly have some acupuncture next Thursday. We have heard that it can help with the side effects, especially the day after treatment. So we are doing the leg work to make that happen next week as well. We will be discussing that with Dr. Lang on Thursday.
Click here for a brief article on how it works, etc. Thank you Scott...
I want to take some picture of the nurses and doctors on her team and will make more of an effort to do that in the coming weeks. It would be nice to have some faces to go with the names I am sure.
I could go on and on about the day. It sure seems like a lot has gone wrong if I look at that way. It's just the way it is right now for Nanc.
We ahve found that every treatment is different depending on so many factors. Nancy's is what it is and it will be what it's going to be. Our job is to learn how to manage what it is when it happens. We are learning....
A special thanks to Danika today for spending her day at the hospital today... xoxo
Monday, July 9, 2007
Can you say phlebitis??
Monday, July 9
We just can't seem to stay away from the outpatient center. Nanc's left arm, the one with the picc line, got a little inflamed today and became somewhat painful. So it was off to Cedars again at 7:00 tonight. So much for that meeting...
One nurse could see the redness running up her arm but they couldn't say for sure if it was full blown phlebitis or not. They took some blood to test for infection, flushed the line and she is going to have it removed tomorrow.
Which is probably a good thing given the fact that it is so low in her arm that she feels it every time she flexes her elbow. There are basically 2 options now:
1. Put in a different picc line in the right arm but higher this time, or
2. Have a catheter port inserted into her arm. The are easier to maintain and make bathing and dressing so much easier and so much more fashionable. (As if that's a real concern these days ;-))
Other than that, the day started out with lots of energy. she even called me at work today to say how good she felt this morning. But the fatigue gets to her within a few hours. So we discussed limiting her time doing stuff in the am to 2 hours and then keeping social visits, etc. throughout the day to a minimum so she can rest. I really think she is going to need all her strength and energy for round 2 next week...
More to come tomorrow on the picc line saga....
xoxo
We just can't seem to stay away from the outpatient center. Nanc's left arm, the one with the picc line, got a little inflamed today and became somewhat painful. So it was off to Cedars again at 7:00 tonight. So much for that meeting...
One nurse could see the redness running up her arm but they couldn't say for sure if it was full blown phlebitis or not. They took some blood to test for infection, flushed the line and she is going to have it removed tomorrow.
Which is probably a good thing given the fact that it is so low in her arm that she feels it every time she flexes her elbow. There are basically 2 options now:
1. Put in a different picc line in the right arm but higher this time, or
2. Have a catheter port inserted into her arm. The are easier to maintain and make bathing and dressing so much easier and so much more fashionable. (As if that's a real concern these days ;-))
Other than that, the day started out with lots of energy. she even called me at work today to say how good she felt this morning. But the fatigue gets to her within a few hours. So we discussed limiting her time doing stuff in the am to 2 hours and then keeping social visits, etc. throughout the day to a minimum so she can rest. I really think she is going to need all her strength and energy for round 2 next week...
More to come tomorrow on the picc line saga....
xoxo
Sunday, July 8, 2007
It's the little things...
Saturday, July 7 - 4:30 and finished on Sunday, July 8 at 10:00
Nanc has about 20 minutes left on her second hydration and I was just sitting here thinking about how much life has changed in such a short period of time. I am finding that it's not the big things that are so disrupting to one's sense of wholeness when faced with a traumatic event like having cancer in the family.
I have been set off the deep end just by having too many dirty dishes to clean after being in the hospital for 3 days or piles of dirty clothes at the end of a very long day. I seem to be able to handle the emergencies but find I really need some organization in the little areas. But enough about me...
Sunday was truly a day of rest. One of Nanc's clients bought massages for us and we enjoyed them so much, we got one for Danika (part of her graduation present.) It really helped her pain this morning and he gave us some techniques we will be able to use daily as part of the whole pain management program.
She was scheduled for a third potassium infusion but that got nixed as her count has come up to 4.5 - the top of the good range. A day off!!!!!
The fatigue is playing a major role these days it seems. There is still a bit of pain in the lower back and the abdomen. We are making sure she gets lots of rest but even just taking a shower is a major ordeal. We tried a trip out to the hardware store and that about did her in. So it's rest, rest, rest this week. We see Leuchter on Thursday and we'll schedule the next round which is supposed to start on the 17th.
That's about it for this week. Man what a long 12 days it's been...
Oh yeah - I was told you all need to see this picture of Atley. Nanc loves the smile...
Nanc has about 20 minutes left on her second hydration and I was just sitting here thinking about how much life has changed in such a short period of time. I am finding that it's not the big things that are so disrupting to one's sense of wholeness when faced with a traumatic event like having cancer in the family.
I have been set off the deep end just by having too many dirty dishes to clean after being in the hospital for 3 days or piles of dirty clothes at the end of a very long day. I seem to be able to handle the emergencies but find I really need some organization in the little areas. But enough about me...
Sunday was truly a day of rest. One of Nanc's clients bought massages for us and we enjoyed them so much, we got one for Danika (part of her graduation present.) It really helped her pain this morning and he gave us some techniques we will be able to use daily as part of the whole pain management program.
She was scheduled for a third potassium infusion but that got nixed as her count has come up to 4.5 - the top of the good range. A day off!!!!!
The fatigue is playing a major role these days it seems. There is still a bit of pain in the lower back and the abdomen. We are making sure she gets lots of rest but even just taking a shower is a major ordeal. We tried a trip out to the hardware store and that about did her in. So it's rest, rest, rest this week. We see Leuchter on Thursday and we'll schedule the next round which is supposed to start on the 17th.
That's about it for this week. Man what a long 12 days it's been...
Oh yeah - I was told you all need to see this picture of Atley. Nanc loves the smile...
Friday, July 6, 2007
What a difference a day makes.
Friday, July 6 - 7:30 pm
Nanc is about 2/3 of the way through a liter of potassium chloride, the first of 3 over the next 3 days. She is sleeping right now so I am stealing a few seconds to let you all know that she is feeling pretty okay today. The fatigue from yesterday's chemo has already set in as well a a little bit of nausea. We are staying on top of all the meds to avoid a repeat of last week.
The good thing is that she is eating. Thai chicken pizza from CPK tonight!
We talked to Dr. Lang for a few minutes and she explained that the next course will start on time a week from Tuesday. I think Nanc was hoping for a few extra days since her last treatment was 2 days late but they stay on schedule in the same manner as a simple anti-biotic.
Hydration, nutrition, and lots of rest...
xoxo
Nanc is about 2/3 of the way through a liter of potassium chloride, the first of 3 over the next 3 days. She is sleeping right now so I am stealing a few seconds to let you all know that she is feeling pretty okay today. The fatigue from yesterday's chemo has already set in as well a a little bit of nausea. We are staying on top of all the meds to avoid a repeat of last week.
The good thing is that she is eating. Thai chicken pizza from CPK tonight!
We talked to Dr. Lang for a few minutes and she explained that the next course will start on time a week from Tuesday. I think Nanc was hoping for a few extra days since her last treatment was 2 days late but they stay on schedule in the same manner as a simple anti-biotic.
Hydration, nutrition, and lots of rest...
xoxo
Thursday, July 5, 2007
How a Planned 7 Hour Treatment Turned Into 55 Hours
July 5 - 10:45 pm
For right now, here's the short of it. I promise to bring more details later but I am just too tired right now.
It took this entire time, since 1:00 Tuesday, to bring her potassium level in range and get the Taxal flowing through the IP port. It seems that the Cisplatin has a tendency to destroy potassium in your system. However, it usually doesn't do it on the first round so they are looking into that. In the meantime, Nanc will be going in for daily hydration and potassium infusion as well for the next 3 days.
They will be looking into possible causes of what they called "potassium wasting." Suffice it to say that it kept bouncing around between 2.5 and 3.3 even though they were literally drowning her in potassium chloride drips. Normal level is between 3.5 and 4.5. Her base was 4.0 last week. Low levels can cause cardiac problems so we are going to have to watch it carefully.
We met with so many wonderful people today and I will bring you specifics on what I can remember in the days to come. Here are some highlights of the past 2 days:
- The new fellow, Dr. Lang was just amazing. She was upbeat and positive and really helped keep up Nanc's spirits.
- The head of the pain team who termed her pain as "drug induced peritonitis." When I asked for an explanation he re-phrased it for me - "It's a mother fucker." (No shit!)
- Dr. Lang recruited the nurse who teaches nurses how to access the IP ports to get her started today. Nanc wasn't too keen on the nurses on the floor who haven't done one in a couple of years. The event turned into a mini class attended by no less than 4 nurses.
- And last but not least was the entire nursing staff. In particular there was Sarah who was there when Nanc first came out of surgery. At first she thought she had recognized us but at around 1:00 today, she sort of burst into the room and said "I just remembered you from your surgery!" Even though she wasn't her assigned nurse, she helped out all day and was one of the students in the little IP port access class in room 3922...
There is so much more I could add but my eyes are getting heavy. I am going to end this post by asking that we all give our thoughts and prayers to Frank tonight. He found out today that his cancer has spread to his spine and has worsened in his liver and pelvis. When I talked to him today he told me it was just another bump in the road. Let's hope so...
hugs and kisses...
For right now, here's the short of it. I promise to bring more details later but I am just too tired right now.
It took this entire time, since 1:00 Tuesday, to bring her potassium level in range and get the Taxal flowing through the IP port. It seems that the Cisplatin has a tendency to destroy potassium in your system. However, it usually doesn't do it on the first round so they are looking into that. In the meantime, Nanc will be going in for daily hydration and potassium infusion as well for the next 3 days.
They will be looking into possible causes of what they called "potassium wasting." Suffice it to say that it kept bouncing around between 2.5 and 3.3 even though they were literally drowning her in potassium chloride drips. Normal level is between 3.5 and 4.5. Her base was 4.0 last week. Low levels can cause cardiac problems so we are going to have to watch it carefully.
We met with so many wonderful people today and I will bring you specifics on what I can remember in the days to come. Here are some highlights of the past 2 days:
- The new fellow, Dr. Lang was just amazing. She was upbeat and positive and really helped keep up Nanc's spirits.
- The head of the pain team who termed her pain as "drug induced peritonitis." When I asked for an explanation he re-phrased it for me - "It's a mother fucker." (No shit!)
- Dr. Lang recruited the nurse who teaches nurses how to access the IP ports to get her started today. Nanc wasn't too keen on the nurses on the floor who haven't done one in a couple of years. The event turned into a mini class attended by no less than 4 nurses.
- And last but not least was the entire nursing staff. In particular there was Sarah who was there when Nanc first came out of surgery. At first she thought she had recognized us but at around 1:00 today, she sort of burst into the room and said "I just remembered you from your surgery!" Even though she wasn't her assigned nurse, she helped out all day and was one of the students in the little IP port access class in room 3922...
There is so much more I could add but my eyes are getting heavy. I am going to end this post by asking that we all give our thoughts and prayers to Frank tonight. He found out today that his cancer has spread to his spine and has worsened in his liver and pelvis. When I talked to him today he told me it was just another bump in the road. Let's hope so...
hugs and kisses...
Wednesday, July 4, 2007
Relief!
July 4 - 1:00 pm
PHEW!
I wish you all could have seen Nancy's eyes roll back in her head as she was finally able to eat something. that something turned out to be the "perfect" egg salad sandwich, not too much mayo, no onion, on soft rye. that and a couple of salty french fries dipped in mayo. We actually had to slow her down at one point which is a real turn around...
So, the nausea is at bay for the moment, the IV is back on and we'll wait and see how her next blood work comes out. If it looks good, they want to go ahead with the taxol and then the plan is to have her go into the infusion center for 3 or 4 days after each treatment for fluids, potassium and IV anti-nausea drugs.
I got busted trying to take some photos of the infusion center but will keep at it. I did get one of Nanc in her new hat. These hats are donated and hand-made bys some angel somewhere. "They just keep appearing" is the response we got when we asked where they came from.
She is so going to hate me for this one...
So here's what we learned this week (What day is it anyway?):
PHEW!
I wish you all could have seen Nancy's eyes roll back in her head as she was finally able to eat something. that something turned out to be the "perfect" egg salad sandwich, not too much mayo, no onion, on soft rye. that and a couple of salty french fries dipped in mayo. We actually had to slow her down at one point which is a real turn around...
So, the nausea is at bay for the moment, the IV is back on and we'll wait and see how her next blood work comes out. If it looks good, they want to go ahead with the taxol and then the plan is to have her go into the infusion center for 3 or 4 days after each treatment for fluids, potassium and IV anti-nausea drugs.
I got busted trying to take some photos of the infusion center but will keep at it. I did get one of Nanc in her new hat. These hats are donated and hand-made bys some angel somewhere. "They just keep appearing" is the response we got when we asked where they came from.
She is so going to hate me for this one...
So here's what we learned this week (What day is it anyway?):
- Nancy went through literal hell the past week. Not imagined either!
- She can take it better than she thinks.
- We won't wait so long next time to manage the side effects when the first attempt doesn't work.
- We have a new course of action that everyone thinks will be much easier on her.
- That with the help of her new team, all of you and some renewed hope, she will get through this. Dr. Lang says so....
Oh Those Electrolytes
9:15 am - July 4
Well we haven't had much luck raising her potassium levels since yesterday. A normal count is between 3.5 and 4.5. Nanc's level has dropped from a 2.9 yesterday to 2.7 this morning, even with 4 IV treatments and on oral pill. So they are admitting her this morning for further treatments and then re-evaluate her condition before they proceed with the chemo.
And on top of everything else, she had become very nauseous, more than before, we think because of the patch that the pain team put on yesterday. We took that off and will monitor that as well throughout the day.
So, we are waiting and watching, trying to stay in the moment and accept the situation as it is.
Which is hard right now but she's trying...
More to follow throughout the day as I have time.
Well we haven't had much luck raising her potassium levels since yesterday. A normal count is between 3.5 and 4.5. Nanc's level has dropped from a 2.9 yesterday to 2.7 this morning, even with 4 IV treatments and on oral pill. So they are admitting her this morning for further treatments and then re-evaluate her condition before they proceed with the chemo.
And on top of everything else, she had become very nauseous, more than before, we think because of the patch that the pain team put on yesterday. We took that off and will monitor that as well throughout the day.
So, we are waiting and watching, trying to stay in the moment and accept the situation as it is.
Which is hard right now but she's trying...
More to follow throughout the day as I have time.
Tuesday, July 3, 2007
Back Home at the Infusion Center
Sounds funny but coming in and seeing the nurses was a real comfort for Nanc today. Given that the week was so hard, she felt better just being here. We had heard that patients come in on off days for comfort - we now see why.
On our first day here last week, she swore she'd never sit in the common area. Today she was totally comfortable sitting with the other patients. Funny how a week of chemo will change one's perspective...
Her blood work today showed that she's majorly dehydrated so they are re-hydrating and adding electrolytes as well. We met with the social worker, the pain management team and a new fellow on Leuchter's team. It looks like we need to make three changes:
1. Change the laxative to something less taxing on her system. She's been having some gastric reactions to the senna.
2. Get more aggressive with a different antacid. Part of her problem has been due to her stomach.
3. A totally different regime of anti-nausea medications.
So, here we sit, watching the drip, drip, drip, waiting for a second blood work to be done to be sure her potassium level gets up to a point where she can stake a second litre of fluid. They want to keep her overnight and then she'll have her chemo treatment in the morning.
But, here's the good news. She came in today beaten and hopeless and after meeting with everyone, she is now hopeful and feeling much better...
And this new fellow, Dr. Jennifer Lang, is very cool. She was relating to Nanc about another of her patients who had a very tough time as well and was able to make it through the entire 6 rounds. When she left, she gave Nanc a big hug and even had a tear in her eye. Not something you see in a Dr. too often...
Anyway, we were impressed and Nanc is feeling much better about moving forward. If we could just settle her stomach a little bit more, she'd be even better. They just put in some IV Zantac so we'll see how that works.
More pictures to come soon...
xoxo
On our first day here last week, she swore she'd never sit in the common area. Today she was totally comfortable sitting with the other patients. Funny how a week of chemo will change one's perspective...
Her blood work today showed that she's majorly dehydrated so they are re-hydrating and adding electrolytes as well. We met with the social worker, the pain management team and a new fellow on Leuchter's team. It looks like we need to make three changes:
1. Change the laxative to something less taxing on her system. She's been having some gastric reactions to the senna.
2. Get more aggressive with a different antacid. Part of her problem has been due to her stomach.
3. A totally different regime of anti-nausea medications.
So, here we sit, watching the drip, drip, drip, waiting for a second blood work to be done to be sure her potassium level gets up to a point where she can stake a second litre of fluid. They want to keep her overnight and then she'll have her chemo treatment in the morning.
But, here's the good news. She came in today beaten and hopeless and after meeting with everyone, she is now hopeful and feeling much better...
And this new fellow, Dr. Jennifer Lang, is very cool. She was relating to Nanc about another of her patients who had a very tough time as well and was able to make it through the entire 6 rounds. When she left, she gave Nanc a big hug and even had a tear in her eye. Not something you see in a Dr. too often...
Anyway, we were impressed and Nanc is feeling much better about moving forward. If we could just settle her stomach a little bit more, she'd be even better. They just put in some IV Zantac so we'll see how that works.
More pictures to come soon...
xoxo
Monday, July 2, 2007
Name Change
Okay, so I was forced into changing the name of the blog. Nanc didn't like my first go around so you now have a new title. It's her "blob" cause that's pretty much how she feels...
We took some action today in preparation for tomorrow's second round of IP treatment. We made appointments with the pain management specialist at Cedars and requested time with the doctor to discuss different medication for the pain. Nanc described the pain tonight as "inhumane torture." Brutal is a good word to describe it as well.
On the good news front, her plumbing seems to be working better. I never thought one could get so excited for a good, healthy bowel movement but it was a two fists raised in the air event around here today.
Food is still a major issue and we've been experimenting with frozen juices, honey nut Cheerios, chocolate milk (in very small doses) - just anything that might taste good and go down easy. We were joking that we run all over town on a whim only to be told that it just didn't taste as good as she thought it would. The fridge is full of those experiments ;-)
I will update again tomorrow with what the nurses and doctors have to say.
hugs and kisses...
We took some action today in preparation for tomorrow's second round of IP treatment. We made appointments with the pain management specialist at Cedars and requested time with the doctor to discuss different medication for the pain. Nanc described the pain tonight as "inhumane torture." Brutal is a good word to describe it as well.
On the good news front, her plumbing seems to be working better. I never thought one could get so excited for a good, healthy bowel movement but it was a two fists raised in the air event around here today.
Food is still a major issue and we've been experimenting with frozen juices, honey nut Cheerios, chocolate milk (in very small doses) - just anything that might taste good and go down easy. We were joking that we run all over town on a whim only to be told that it just didn't taste as good as she thought it would. The fridge is full of those experiments ;-)
I will update again tomorrow with what the nurses and doctors have to say.
hugs and kisses...
Sunday, July 1, 2007
Thank you everyone!
We sure wouldn't have made it through the last couple of days without the help of some very dear and valued friends. The food, help with the dishes, the visits - all of it! It sure helps during this time when we are finding our feet in dealing with the effects of the chemo. How are we ever going to thank you all?
It's been a very trying weekend. Nanc is in a lot of pain and just can't get comfortable unless she's sleeping. Food is becoming a real challenge already. So far the big hit has been poached eggs on cut up wheat toast with a dash of salt. Most stuff just makes her gag.
At one point I thought we were going to have to head to the hospital it got so bad. I have called the chemo center twice and they've been a big help in letting us know we're doing the right things. It's just all so foreign and scary. Is this normal? Is the pain ever going to end? Am I going to be able to handle this for 18 weeks? And I have no answers...
It was pointed out that this really is the first time Nanc has been really sick in her life so she has no reference point for how sick she really is. We have an appointment this coming Tuesday so hopefully we'll get some sense of what is gong on. Cause this really, really sucks so far...
It's been a very trying weekend. Nanc is in a lot of pain and just can't get comfortable unless she's sleeping. Food is becoming a real challenge already. So far the big hit has been poached eggs on cut up wheat toast with a dash of salt. Most stuff just makes her gag.
At one point I thought we were going to have to head to the hospital it got so bad. I have called the chemo center twice and they've been a big help in letting us know we're doing the right things. It's just all so foreign and scary. Is this normal? Is the pain ever going to end? Am I going to be able to handle this for 18 weeks? And I have no answers...
It was pointed out that this really is the first time Nanc has been really sick in her life so she has no reference point for how sick she really is. We have an appointment this coming Tuesday so hopefully we'll get some sense of what is gong on. Cause this really, really sucks so far...
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