Really!
Not only does chemo suck but the reality of it all can be pretty overwhelming at times. The good news is that it is slowly sinking in. People keep telling us that Nanc will fall into a routine with it all soon. Hard to believe that this is our new reality for the coming months...
Anyway, the first wave of nausea hit tonight. Nothing major but it sure slowed down the appetite. The goal for the next couple of days will be to stay on top of all the meds, keep the nausea and pain at bay so she's ready for next Tuesday's chemo, her second IP treatment. Then she'll have a 2 week break. Which is good because this has been tough on her so far...
Lesson for the week:
"Roll with the punches cause it may be all you're gonna get."
Saturday, June 30, 2007
Friday, June 29, 2007
Chemo Sucks
Well they said it was going to be hard but the reality is always so different from what you expect it to be. Yesterday was difficult due to the effects of the volume of the IP treatment into her abdomen. That, plus the fact that the side effects are starting to kick in as well. It's a lot like getting kicked in the stomach plus the fatigue, the numbness, etc.
We talked about how acceptance is key to making it through this.
Acceptance, In and Out burgers and prophylactic medications for the side effects...
Food is beginning to be an issue already. Some of her favorite things are tasting weird. She just doesn't have much of an interest in eating the last 2 days at all. But we are making her eat and drink as much as possible and trying all sorts of different things that appeal to the taste buds.
hugs and kisses...
We talked about how acceptance is key to making it through this.
Acceptance, In and Out burgers and prophylactic medications for the side effects...
Food is beginning to be an issue already. Some of her favorite things are tasting weird. She just doesn't have much of an interest in eating the last 2 days at all. But we are making her eat and drink as much as possible and trying all sorts of different things that appeal to the taste buds.
hugs and kisses...
Chemo - Day 2 (Or how I spent 13 hours at the infusion center)
It was all Nancy's fault.
We arrived at 9 am for her scheduled IP treatment (you remember IP or inter-peritoneal - when they inject the chemo directly into her abdomen through the port in her belly) and nurse Liz (from NY) started her on her hydration right away. Hydration is one of the key ingredients in minimizing side effects we have learned.
That was when the pain started. Unbelievable gas pains as it turned out. It was so bad that they delayed the chemo treatment until they could take a scan, which had to wait because she ate a bagel at 10:30. So, she drank the stuff in preparation for the scan at 2:30, finally had the scan at about 4:30 after having a second IV put in for the contrast, talked to another doctor just before 6 who confirmed the results. We then started the treatment right around 6 pm. When all was said and done it was almost 10 by the time we got in the car to head home. To combat a reoccurrence, they started her on a regimen to keep her regular and minimize the gas.
Thank God for the kids is all I can say. Atley came over after work to take over from Danika who had to be at work at 5. They took care of the dogs and kept the house in one piece. And Babette left pastas and salads which was scarfed down rather appreciatively at 11....
So that's the short of it. Throughout the day we talked to our nurse quite a bit about how to minimize side effects, why move to California from the east coast, career, why Dr. Leuchter never comes over to see patients in the infusion center, the usual infusion center chatter we are finding.
It's amazing how nice everyone is over there. And man do they know their shit! Even the rude doctor from Tuesday was nice yesterday. And Dr. Leuchter came by to see Nanc as promised and to see one of his other patients as well. All the nurses were quite impressed that he came over and I know it made Nanc feel so much better after the morning she had. He has a real calming effect on her. She has really put herself into his hands and is not looking back. The decision to stay at Cedars was reaffirmed yesterday by both of us, numerous times throughout the day.
The fears of having the needle put into her tummy were put to rest after the needle went in without incident. Nanc was able to tolerate the fluids well and only looked about 3 months pregnant at the end of the day. They put a total of nearly 2 liters directly into her abdomen for the treatment. Plus 2 more through the IV. So she will be taking on a total of nearly 4 liters and if her output doesn't at least reach 3, they give her something to help that along. I thought we were going to have to pull over at one point on the way home so she could pee in the bottle but we made it to the pharmacy without incident.
We also got the chance to chat with a woman who is half way through the same treatment for quite a while yesterday. Her name is Virginia or Gini, and she works at MOCA as a restorer and happens to live quite close to us. She was very sweet and I know it made Nanc more confident. She has had no nausea to speak of throughout so far and gave Nanc some good tips on fatigue, hydration and wigs. She had an amazing wig that everyone thought was real.
I know there's more on the day but I am running out of time. I will bring you updates as things come up. For now, she is handling the whole thing very well. Tuesday was more emotional, yesterday she got through her fear for the IP treatment, tolerated it very well and will be a full fledged combat veteran after next Tuesday. I'm thinking some sort of medal or at least a barbecue on the 4th.
I started setting up a blog yesterday but haven't gotten any text into it as of yet. I should have it done by Sunday and will forward the link to you all when it's ready.
Oh, and Danika cut her hair yesterday in a show of strength for her mom. Atley is talking about it but Nanc loves his curls. Attached is a pic. God I love our kids...
We arrived at 9 am for her scheduled IP treatment (you remember IP or inter-peritoneal - when they inject the chemo directly into her abdomen through the port in her belly) and nurse Liz (from NY) started her on her hydration right away. Hydration is one of the key ingredients in minimizing side effects we have learned.
That was when the pain started. Unbelievable gas pains as it turned out. It was so bad that they delayed the chemo treatment until they could take a scan, which had to wait because she ate a bagel at 10:30. So, she drank the stuff in preparation for the scan at 2:30, finally had the scan at about 4:30 after having a second IV put in for the contrast, talked to another doctor just before 6 who confirmed the results. We then started the treatment right around 6 pm. When all was said and done it was almost 10 by the time we got in the car to head home. To combat a reoccurrence, they started her on a regimen to keep her regular and minimize the gas.
Thank God for the kids is all I can say. Atley came over after work to take over from Danika who had to be at work at 5. They took care of the dogs and kept the house in one piece. And Babette left pastas and salads which was scarfed down rather appreciatively at 11....
So that's the short of it. Throughout the day we talked to our nurse quite a bit about how to minimize side effects, why move to California from the east coast, career, why Dr. Leuchter never comes over to see patients in the infusion center, the usual infusion center chatter we are finding.
It's amazing how nice everyone is over there. And man do they know their shit! Even the rude doctor from Tuesday was nice yesterday. And Dr. Leuchter came by to see Nanc as promised and to see one of his other patients as well. All the nurses were quite impressed that he came over and I know it made Nanc feel so much better after the morning she had. He has a real calming effect on her. She has really put herself into his hands and is not looking back. The decision to stay at Cedars was reaffirmed yesterday by both of us, numerous times throughout the day.
The fears of having the needle put into her tummy were put to rest after the needle went in without incident. Nanc was able to tolerate the fluids well and only looked about 3 months pregnant at the end of the day. They put a total of nearly 2 liters directly into her abdomen for the treatment. Plus 2 more through the IV. So she will be taking on a total of nearly 4 liters and if her output doesn't at least reach 3, they give her something to help that along. I thought we were going to have to pull over at one point on the way home so she could pee in the bottle but we made it to the pharmacy without incident.
We also got the chance to chat with a woman who is half way through the same treatment for quite a while yesterday. Her name is Virginia or Gini, and she works at MOCA as a restorer and happens to live quite close to us. She was very sweet and I know it made Nanc more confident. She has had no nausea to speak of throughout so far and gave Nanc some good tips on fatigue, hydration and wigs. She had an amazing wig that everyone thought was real.
I know there's more on the day but I am running out of time. I will bring you updates as things come up. For now, she is handling the whole thing very well. Tuesday was more emotional, yesterday she got through her fear for the IP treatment, tolerated it very well and will be a full fledged combat veteran after next Tuesday. I'm thinking some sort of medal or at least a barbecue on the 4th.
I started setting up a blog yesterday but haven't gotten any text into it as of yet. I should have it done by Sunday and will forward the link to you all when it's ready.
Oh, and Danika cut her hair yesterday in a show of strength for her mom. Atley is talking about it but Nanc loves his curls. Attached is a pic. God I love our kids...
Wednesday, June 27, 2007
Chemo - Day 1
Emotional. That's about the best word I can think of to describe our ten hours at the infusion center yesterday. It's one thing to talk about it, read about it, plan for it, prepare yourself, steel yourself, etc. It's quite another to have the needle put in your arm. The reality of it all has a strange way of introducing itself. Just keep grabbing kleenex...
So, aside from the emotions and fear, it all went very well. Nanc had some small reactions to the taxol - flushing - and was sleepy from the benadryl. We came home and thankfully, one of her girls had dropped dinner off and it wasn't chicken! The day was more draining emotionally I think, so lights out came quite early.
It felt like we talked to a hundred people yesterday. They really take care of chemo patients at this hospital. Once again, a good choice I have to admit. Her nurse Karen was just amazing. Calm, knowledgeable, caring, could use a more enhanced sense of humor but I'll settle for her abilities as a chemo nurse any day ;-)
The social worker came by to check on us and let us know that she's available for the whole family. We will see a nutritionist today and Nanc met another woman with the same cancer and doctor. Those two obviously had lots to talk about.
Today is the first IP treatment into her abdomen. She will have to stay in bed for the entire treatment so the fluids can settle, etc.
I will try my best to keep these updates going for all of you. Although I have to admit that it's kind of selfish in a way - it is saving making tons of phone calls...
Hugs and kisses all around. Keep the faith. We love you all...
So, aside from the emotions and fear, it all went very well. Nanc had some small reactions to the taxol - flushing - and was sleepy from the benadryl. We came home and thankfully, one of her girls had dropped dinner off and it wasn't chicken! The day was more draining emotionally I think, so lights out came quite early.
It felt like we talked to a hundred people yesterday. They really take care of chemo patients at this hospital. Once again, a good choice I have to admit. Her nurse Karen was just amazing. Calm, knowledgeable, caring, could use a more enhanced sense of humor but I'll settle for her abilities as a chemo nurse any day ;-)
The social worker came by to check on us and let us know that she's available for the whole family. We will see a nutritionist today and Nanc met another woman with the same cancer and doctor. Those two obviously had lots to talk about.
Today is the first IP treatment into her abdomen. She will have to stay in bed for the entire treatment so the fluids can settle, etc.
I will try my best to keep these updates going for all of you. Although I have to admit that it's kind of selfish in a way - it is saving making tons of phone calls...
Hugs and kisses all around. Keep the faith. We love you all...
Tuesday, June 26, 2007
Update for Tuesday, June 26
After meeting again with Leuchter last week, Nanc has decided to stay with him and move ahead with treatments at Cedars. Which is like saying that you are going to "The Vineyard" for the weekend or St. Tropez for a quick vacation. I mean it is Beverly Hills after all and we did bump into Courtney Cox last time there...
She's comfortable with the decision and has committed to not looking back as Dr. Roman told her.
So, today is first day of chemo. Needless to say she is just a bit anxious. We leave at 7 and have an appt. at 8. It's hard not to let all the stories you hear and things you read filter into your head and make you lose sleep or just plain breathe hard when anticipating going to a "chemical infusion center" where you will sit for up to 8 hours or more and get pumped with chemicals...
She's comfortable with the decision and has committed to not looking back as Dr. Roman told her.
So, today is first day of chemo. Needless to say she is just a bit anxious. We leave at 7 and have an appt. at 8. It's hard not to let all the stories you hear and things you read filter into your head and make you lose sleep or just plain breathe hard when anticipating going to a "chemical infusion center" where you will sit for up to 8 hours or more and get pumped with chemicals...
Nanc got her hair cut yesterday in preparation for today's chemo. Our guy David opened the shop just for her yesterday. He is a very sweet guy and wants her to come back if it gets patchy, etc. during the treatments. I happen to love it but she says it's going to take some time for her to get used to it.
That's about it for now. Say a prayer, keep your fingers crossed, etc...
Sunday, June 17, 2007
Update for Sunday, June 17
Nanc is now 3 weeks out of surgery and healing well. She was able to walk one of the dogs this morning for the first time since the surgery so that is exciting. There is obviously still discomfort but it is getting better by the day. Weight loss continues to be a concern as she is now down to 116 from over 125-130 about a month before the surgery. We bought a bunch of regular type foods to try and put some weight on before chemo starts.
We have added quite a few new words to our vocabulary lately: optimally debulked, intraperitoneal chemical therapy, chemial in fusion, intravenous chemical therapy, Gynecologic Oncology Group, cisplatin, carboplatin, taxel, paclitaxel, neurologic toxicity, port catheter, pick line, metastasis, stage IIIc, and so on....
And speaking of chemo, we saw Dr. Linda Roman over at USC Norris Cancer Institute Friday for a second opinion hoping to confirm what Dr. Leuchter had prescribed as a course of treatment and what we got (surprise) was not only a second opinion, but a different one.
Leuchter prescribed the text book treatment as outline in the GOG 172 I wrote about last week. Roman is suggesting something slightly different. She is suggesting IV only for four treatment, 3 weeks apart, same drugs as in the other protocol. However, she wouldn't start the IP for 12 weeks. Now it is a proven fact that IP treatment is vital for treating this form of cancer. However, the toxicity rates for the GOG 172 protocol is very high and "brutal" as Roman described it. She wouldn't use the taxal via the IP, only one of the platinum chemicals. The word she used was "humane" for this route.
One note we read about the GOG 172 is that most women never make it through the full 6 treatments as it is so toxic. The results are still good, but the quality of life for the first year is somewhat lower than other courses without IP. Roman feels that it's because of the taxal being introduced directly into the abdomen. She wouldn't have even put the port in until just before starting the IP treatments 3 months in.
So, what to do, what to do????????
Good question. We are going to talk with a Dr. at NYU who specializes in chemo treatments for gynecological cancer. We are also going to talk to Leuchter again. However, he did say up front that Nanc needs to go where she is comfortable for the treatments. He even recommended Roman as a second opinion...
Of course there is not one sure fire way to be sure that whichever we choose, it will be 100% guaranteed to kill all the cancer. There is no way of knowing that with any treatment. So which is most effective in increasing the chances of a full recovery? No one can say for certain. there are lots of opinions but no head-to-head studies to prove any of it. They only know for certain that a combination of IV and IP using the two drugs is so far the most effective. Beyond that, it's still partly a crap shoot...
So pluses and minuses as I see it today:
Doctors:
Leuchter is an amazing surgeon but a bit of a clinician. Roman is very personable and would treat Nancy as a person, not another patient. I think she would be much more deeply involved in her care than Leuchter would. Plus she would be easier to reach in an emergency.
Protocols:
Obviously one is more toxic and harder and the other is longer but not as brutal.
Treatment centers:
Cedars is definitely nicer and closer to shopping, etc. However, Norris is 15 minutes from my work and I know folks on that campus.
Gift shops:
Cedars is definitely bigger and longer hours (it's Beverly Hills after all) but Norris has cooler cancer stuff.
So, we have some phone calls to make tomorrow and will know where she will be going for treatments in a couple of days. Roman wanted to start her tomorrow but Nanc is committed to going on her retreat next weekend. If she were to have chemo on Mon or Tues, she'd be out of commission for a few days and possibly not able to make the trip. Why does she want to start right away? Because this disease is a "wily enemy" as she put it, and she doesn't like to waste any time in killing it.
That's about it for our week. I will continue to bring you all updates as time allows me the luxury of sitting and typing. My ultimate goal is to set up a web blog for Nanc and I and the kids to keep everyone updated. It's frustrating not being able to return all the calls. A blog would keep everyone in the loop more quickly and easily.
We have added quite a few new words to our vocabulary lately: optimally debulked, intraperitoneal chemical therapy, chemial in fusion, intravenous chemical therapy, Gynecologic Oncology Group, cisplatin, carboplatin, taxel, paclitaxel, neurologic toxicity, port catheter, pick line, metastasis, stage IIIc, and so on....
And speaking of chemo, we saw Dr. Linda Roman over at USC Norris Cancer Institute Friday for a second opinion hoping to confirm what Dr. Leuchter had prescribed as a course of treatment and what we got (surprise) was not only a second opinion, but a different one.
Leuchter prescribed the text book treatment as outline in the GOG 172 I wrote about last week. Roman is suggesting something slightly different. She is suggesting IV only for four treatment, 3 weeks apart, same drugs as in the other protocol. However, she wouldn't start the IP for 12 weeks. Now it is a proven fact that IP treatment is vital for treating this form of cancer. However, the toxicity rates for the GOG 172 protocol is very high and "brutal" as Roman described it. She wouldn't use the taxal via the IP, only one of the platinum chemicals. The word she used was "humane" for this route.
One note we read about the GOG 172 is that most women never make it through the full 6 treatments as it is so toxic. The results are still good, but the quality of life for the first year is somewhat lower than other courses without IP. Roman feels that it's because of the taxal being introduced directly into the abdomen. She wouldn't have even put the port in until just before starting the IP treatments 3 months in.
So, what to do, what to do????????
Good question. We are going to talk with a Dr. at NYU who specializes in chemo treatments for gynecological cancer. We are also going to talk to Leuchter again. However, he did say up front that Nanc needs to go where she is comfortable for the treatments. He even recommended Roman as a second opinion...
Of course there is not one sure fire way to be sure that whichever we choose, it will be 100% guaranteed to kill all the cancer. There is no way of knowing that with any treatment. So which is most effective in increasing the chances of a full recovery? No one can say for certain. there are lots of opinions but no head-to-head studies to prove any of it. They only know for certain that a combination of IV and IP using the two drugs is so far the most effective. Beyond that, it's still partly a crap shoot...
So pluses and minuses as I see it today:
Doctors:
Leuchter is an amazing surgeon but a bit of a clinician. Roman is very personable and would treat Nancy as a person, not another patient. I think she would be much more deeply involved in her care than Leuchter would. Plus she would be easier to reach in an emergency.
Protocols:
Obviously one is more toxic and harder and the other is longer but not as brutal.
Treatment centers:
Cedars is definitely nicer and closer to shopping, etc. However, Norris is 15 minutes from my work and I know folks on that campus.
Gift shops:
Cedars is definitely bigger and longer hours (it's Beverly Hills after all) but Norris has cooler cancer stuff.
So, we have some phone calls to make tomorrow and will know where she will be going for treatments in a couple of days. Roman wanted to start her tomorrow but Nanc is committed to going on her retreat next weekend. If she were to have chemo on Mon or Tues, she'd be out of commission for a few days and possibly not able to make the trip. Why does she want to start right away? Because this disease is a "wily enemy" as she put it, and she doesn't like to waste any time in killing it.
That's about it for our week. I will continue to bring you all updates as time allows me the luxury of sitting and typing. My ultimate goal is to set up a web blog for Nanc and I and the kids to keep everyone updated. It's frustrating not being able to return all the calls. A blog would keep everyone in the loop more quickly and easily.
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