SOS (Save our Sarah)

willjulia

Hi,
First of all, thank goodness for these discussion boards. It's heartwarming to see people helping people.

Quick background: About a month ago my wife (Sarah, age 50) was diagnosed with Stage IV colon cancer with mets to liver (40%) and lungs. She's finished two rounds of Folfox.

I have a couple questions:

1. How to communicate with children---our children are 13 and 9. We've told them Mommy has cancer, that she's undergoing chemo, and that she's going to feel worse before she feels better.

2. How normal is it for her to be totally wiped out three days after the 46 hour drip? I know fatigue is normal, but she's been extremely zonked out and I keep expecting gradual improvement. I'm concerned about her regaining some level of strength to withstand round 3 next week.

Thank you!!!

Dan

dianetavegia

Sarah
HI Dan, it is perfectly normal to be zonked for days after disconnect. I generally slept or laid on the sofa from Friday afternoon to mid day Sunday. Be sure she has loads to drink and moves around when she feels like it. Flush her body out and she'll feel a bit better a bit sooner.

I think she's probably on more meds than I was given because of her staging. I completed chemo 3 weeks ago tomorrow. My 12 treatment left me down for about 5 days.

Expect aches and pains in muscles and bones. Dizziness. Headaches. Crying, anger or weird emotional outbursts as the steroids wear off around day 3 after chemo. Problems sleeping. Problems with food not tasting right. Dry throat, mouth, etc. (Be sure to get some Biotene mouthwash as soon as she notices dry mouth so you can save her teeth! If she is cavity prone, call the dentist and get some fluoride paste for her to use each night.) She may complain of smelling the chemo. Assure her that no one else can and offer a 'posey'. I put some 'Warm Vanilla' body spray on a handkerchief and would smell that when the chemo smell was overwhelming. I also burned scented candles because I hated the smell so much. )

Talk to her onc about the tiredness. I was really wiped out after my 2nd or 3rd treatment and my doctor lowered my chemo dosage by about 20%. This is very common. All patients start out at the highest recommended dosage and dosages can be adjusted according to how your body reacts. Don't be surprised if your wife has low blood counts when she returns for her next treatment.

There's a lot more side effects but you've probably read about them in the book you were given. I just thought I'd throw in a few others.

About the kids, you've told them all they need to know for now. Stage IV is very serious and we don't want the kids to feel hopeless and scared. There's always hope.

If your wife would like to chat with someone who is very upbeat and positive, have her write me. I'm no expert or long time patient but I can help her feel more positive about the future.

Meanwhile, check out the calendar models on www.colonclub.com Many of them are Stage IV and are doing great after years. All but a few are under 40, but their stories and survival will lift Sarah's spirits.

God Bless,
Diane Tavegia
tavegia@bellsouth.net

Age 58: Dx'd Stage III in Jan. 2009
Mom to 4 ages 15 - 38 and loads of grandkids. Married 39 years on Oct. 10th

No longer in treatment for cancer
NED (No evidence of disease since surgery on Jan. 7th 2009)
Thanking my Lord and Savior for my healing.

PhillieG

Welcome Dan
I'm sorry to hear about your wife. One positive thing is that you found this site. While it's one of many sites it's probably the best one around. My background, I am a 5 1/2 stage IV guy who is living with cancer. Thanks to all of the advances in treatment I am staying ahead of it and am down to just s few little tumors left in and around the lungs. I am currently still in treatment.

To answer your questions:

1- I had to tell my oldest son who was 10 at the time that I had cancer. The hardest thing I've ever had to do. Our youngest was only 4-5 so he didn't quite gasp it so we kept it simple. I think you handled it very well. I believe it is important for the kids to have some understanding of what is going on. I do think it's important to let them know that what their Mom has is curable (fixable) and that they can help by praying (if you're church people and even if you're not) and being extra good around the house and help their Mom out. I do not think that it is good idea not letting the kids know the basics and just pretend she has a bad cold or something. Some people do that. To each their own but kids understand a lot more than we often give them credit for. Sooner or later they will find out from kids in school or wherever. It's better coming from Dad or Mom. Also, as Diane said, they don't need to know every detail but they need to know.

2- I did the FOLFOX when I was first DX and it would knock me out. I was 46 at the time and I'd get hooked up for the 3 day infusion on Friday and be out of it at times for a few days afterward. So the being wiped out 3 days later is not uncommon at all.

Just another note about me, I had mets to my liver and lung too. They removed 60-70% of my liver. It grows back. The lung mets have been dealt with by surgery and chemo, mainly Erbitux.

Here's link to some common abbreviations that one of our fellow members, Buzzard, put together. It may come in handy understanding the lingo.
http://csn.cancer.org/node/174108

One other piece of advice which you will hear a lot is to not believe everything you may read on the internet about survival rates. It's is WAY higher than the 5-8% they give us. The data is old and things change quickly in this field.
Also, make sure that you have a very good medical team working for you, that can make all of the difference in the world. If you are not comfortable with them don't hesitate to change teams. Also second opinions can't hurt either.

If it were not for the GREAT medical team that I have I most likely would not be here today.

Best wishes to you, your wife and family.
We're here for you.
-phil

Mike49

Talking to kids
I told my gang before I had my first surgery, I told them I was going to be able to get better. My oldest was twelve and I told him I need his help, and manytimes since I have told him I appreciate how he has stepped up and helped out.

The 7 nd 10 year old know it is something but don't fully grasp the timeline of treatments etc.

Is Sarah eating, I know she won't have appetite but find something that she can eat even a little and keep nutrition up, thereby build energy. She will be tired and some of that is natural. Try o keep life as normal as possible when you can, do the thing you liked to do together if possible or create new lunch dates, life has to go on and being normal helps us feel less sick and sorrowful.

I took all 3 of my kids with me once for chemo,they got bored but they know what dad is doing on those days.

willjulia

PhillieG said:

Welcome Dan
I'm sorry to hear about your wife. One positive thing is that you found this site. While it's one of many sites it's probably the best one around. My background, I am a 5 1/2 stage IV guy who is living with cancer. Thanks to all of the advances in treatment I am staying ahead of it and am down to just s few little tumors left in and around the lungs. I am currently still in treatment.

To answer your questions:

1- I had to tell my oldest son who was 10 at the time that I had cancer. The hardest thing I've ever had to do. Our youngest was only 4-5 so he didn't quite gasp it so we kept it simple. I think you handled it very well. I believe it is important for the kids to have some understanding of what is going on. I do think it's important to let them know that what their Mom has is curable (fixable) and that they can help by praying (if you're church people and even if you're not) and being extra good around the house and help their Mom out. I do not think that it is good idea not letting the kids know the basics and just pretend she has a bad cold or something. Some people do that. To each their own but kids understand a lot more than we often give them credit for. Sooner or later they will find out from kids in school or wherever. It's better coming from Dad or Mom. Also, as Diane said, they don't need to know every detail but they need to know.

2- I did the FOLFOX when I was first DX and it would knock me out. I was 46 at the time and I'd get hooked up for the 3 day infusion on Friday and be out of it at times for a few days afterward. So the being wiped out 3 days later is not uncommon at all.

Just another note about me, I had mets to my liver and lung too. They removed 60-70% of my liver. It grows back. The lung mets have been dealt with by surgery and chemo, mainly Erbitux.

Here's link to some common abbreviations that one of our fellow members, Buzzard, put together. It may come in handy understanding the lingo.
http://csn.cancer.org/node/174108

One other piece of advice which you will hear a lot is to not believe everything you may read on the internet about survival rates. It's is WAY higher than the 5-8% they give us. The data is old and things change quickly in this field.
Also, make sure that you have a very good medical team working for you, that can make all of the difference in the world. If you are not comfortable with them don't hesitate to change teams. Also second opinions can't hurt either.

If it were not for the GREAT medical team that I have I most likely would not be here today.

Best wishes to you, your wife and family.
We're here for you.
-phil

Nice axe
Hi Phil,
Thanks for your helpful and quick response. Let me get right to my most immediate concern---
That is a sweet looking guitar! What is it? A PRS? I listened to your Roy Buchanan tune on your profile page. Now there was a player who played from the depth of his soul.

I appreciate your comments about survival rates. Right after Sarah's diagnosis our team was quick to point out all the recent advances in colon cancer treatment, which gave us hope.

Yet, despite our hope and optimism, fear has a way of creeping into the picture all too often for me. I wish I had a better handle on that.

Thanks again, and keep on rockin'!

Dan

ittapp

Hello, I am 41 dx. with
Hello, I am 41 dx. with stage IV CC with liver mets. I have two kids 10 and 13, I was in the hospital when my husband, pastor and friend told my kids I had Cancer. They saw me one time when I was in the hospital. When I came home I had a bit of recovery so they saw me lay around alot. A friend of mine put a board together that gives them specific things to do to help me. I have to admit after she left it did not last long. (great idea if you follow through) I am on my 6th treatment of Folfox and avastan. So far I have had constipation in which I have to get started on stool softner the day befor Chemo and do them about 3 days after. I have neuropothy in my fingers and mouth. These two are the hardest for me. Other than that I do have fatigue but I am not a napper so I usually don't. For a couple of days after with my bag on I feel tired and bogged down with that bag. After day three I try and do something like walk, laundry, cooking, dishes. I will shower and make myself presentable, that makes me feel better. I have been going to my kids practices and games Cheer and football. It makes me feel normal to be around people not talking about the beast.I go to the grocery store and Church. I am not doing my usual routines of swimming, and going 90 to nothing. I do try and keep things as normal as I can around my house for the kids sake. Caregiving is also difficult so take time for yourself too. My husband is the best man in the world. He is coaching my son's football and people ask how he can manage that well, he needs an out also. It gives him something to do other than being in this house non stop watching over everything I do. So, be kind to yourself as well. I have not had a liver resection or any other procedure for my liver as of yet. Folfox worked on my cancer I had in my belly but has not shrunk the liver yet. I will have one more treatment and then have a pt/ct scan. At that point we will see if it is working and go from there. My liver is inoperable right now with the tumors but hoping it will be soon to do RFA or direct chemo. PM me if you would like to talk, have your wife join she will be encouraged. God Bless, Patti

willjulia

Thanks
Thank you to Diane, Phil, Mike and Patti for your posts and your support. It's almost hard to believe that just five weeks ago our family of four was enjoying summer, doing all the things that families do together. Then, a few symptoms, unexplained weight loss, stomach pain, a trip to the ER, four days in the hospital, the diagnosis, the start of chemo, and here we are.
I'm telling people that we've been given a crate of lemons and we're trying to make a ton of lemonade! What else can you do but move forward. After all, Sarah's not dying, she's living!
Peace,
Dan

PhillieG

willjulia said:

Nice axe
Hi Phil,
Thanks for your helpful and quick response. Let me get right to my most immediate concern---
That is a sweet looking guitar! What is it? A PRS? I listened to your Roy Buchanan tune on your profile page. Now there was a player who played from the depth of his soul.

I appreciate your comments about survival rates. Right after Sarah's diagnosis our team was quick to point out all the recent advances in colon cancer treatment, which gave us hope.

Yet, despite our hope and optimism, fear has a way of creeping into the picture all too often for me. I wish I had a better handle on that.

Thanks again, and keep on rockin'!

Dan

Thanks Dan
It's a 1964 Guild JetStar (also known as the S-50)
It's pretty rare and it has a Hagstrom tremolo on it too.
Here's another photo
http://farm3.static.flickr.com/2419/2336765286_0c7a9d5ab2. j p g
(you have to copy and paste it into the browser and take the spaces out of the . j p g . The site does not allow us to post images or links to them either it seems...stupid IMO)
I've got 8 guitars all together, 4 electric and 4 acoustic and I manage to play them all depending on my mood. I'm obviously a moody person ;-)

Dan, it's only normal to have some fear in there. If someone tells you they don't have fear they are full of "it". You're not dealing with a scraped knee. I haven't gotten to NED (yet) and I'm sure than when/if I get there, I will probably think the other shoe will drop. No one knows how or when we will exit the building so to speak so try to live life the best you can and do the best you can. You guys can make it through this. Attitude is 90% of it, the other half is a good medical team, some good luck, prayer, a sense of humor, and whatever gets you through the night.

And yes, Roy could really play. That clip was from his last show before he passed on.
He was the Master of the Telecaster.

ADKer

willjulia said:

Thanks
Thank you to Diane, Phil, Mike and Patti for your posts and your support. It's almost hard to believe that just five weeks ago our family of four was enjoying summer, doing all the things that families do together. Then, a few symptoms, unexplained weight loss, stomach pain, a trip to the ER, four days in the hospital, the diagnosis, the start of chemo, and here we are.
I'm telling people that we've been given a crate of lemons and we're trying to make a ton of lemonade! What else can you do but move forward. After all, Sarah's not dying, she's living!
Peace,
Dan

Children
Hello - I was stage IV at diagnosis with extensive, inoperable mets to my liver. I also had a couple tiny mets to the lungs which did not light up on the PET scan. chemo allowed me to have a liver resection but the lung mets took advantage of the time without chemo and have increased in number. I am now dealing with a number of tiny lung mets.

My primary concern at diagnosis was, of course, my 2 daughters, aged 12 and 14 at the time. I have a good friend who lost his wife to breast cancer when she was 42 and their 2 sons were about the same age as my girls at the time of her death. The boys were a couple years younger when she was diagnosed. He has done a great job raising the boys and they are both doing very well. I asked his advice about what to tell the children. His advice was to be truthful and keep them informed. So far, our children seem to be coping very well. I have not promised our children that I will be cured. However, they do know that I will do everything that I can to be here as long as I can.

Sorry that you have to be here, but welcome and best wishes for your wife's improving health.

grammadebbie

Welcome
Hi Dan,

I'm 57 and have been fighting this since Oct.2007. Stage IIIC 8/38/lymph nodes positive. Resection and 6 months chemo. Everyone is different in the way they respond to chemo. I was so fatigued that I would look at my dinner and not know if I could pick up the fork to feed myself. It is very hard to explain the kind of fatigue it is. It's not that your tired it was just that I didn't have the energy to do simple things. I would fight with myself to stay active. I had had several surgeries and been ill for a long time before my cancer diagnoses so I don't know if that contributed to it. Chemo is cumulative so it usually gets worse. sorry I know my blood counts were really low and my treatments had to be delayed several times so that may be the source of her fatigue also.

I have a wonderful loving husband and family and I would be around them as much as possible. What joy they bring me. Your emotions are normal. This is a scarey desease. There is no right or wrong way to handle it. We all just do the best we can. Your wife will rely on you for emotional support but also she will know that it is affecting you also. It was very important for me to be able to share my thoughts and fears with my husband. I have been married for 37 years and this experience has brought us even closer together. Cleve to one another, be joyful in the small things. You will come thru this with much prayer and support.

I didn't find this board until recently. It is a wonderful place to come. I'm glad you found it early on in your journey. You can ask anything and someone will be able to help you.

I'm sorry that this is all over the place. I still have trouble getting my thoughts together. I will be praying for your precious family.

Blessing to you all,

Debbie (gramma, there is another Debbie so I added gramma)

Patteee

willjulia said:

Thanks
Thank you to Diane, Phil, Mike and Patti for your posts and your support. It's almost hard to believe that just five weeks ago our family of four was enjoying summer, doing all the things that families do together. Then, a few symptoms, unexplained weight loss, stomach pain, a trip to the ER, four days in the hospital, the diagnosis, the start of chemo, and here we are.
I'm telling people that we've been given a crate of lemons and we're trying to make a ton of lemonade! What else can you do but move forward. After all, Sarah's not dying, she's living!
Peace,
Dan

I am 51, dx'd stage 3B 15
I am 51, dx'd stage 3B 15 months ago, 3 kids ages 23,22 and 18 and one grandchild who is 15 months old, born 4 days before I was dx'd. My kids are older, my oldest was with me and talked to the colonoscopy doctor after that fun little exam. My middle one still struggles with it and my youngest was the hardest hit. I certainly didn't soft pedal it with any of them, but I also was not gloom and doom. "It is what it is and this is what I have to do" kind of attitude. It took time- I think what helped the most was just to say outloud the C word as much as possible. Cancer, chemotherapy and cure.
I also did something I wouldn't recommend that all people do- I played the Cancer card with them. Not to offend anyone, but it was kinda the warped humor way we dealt with it. Example- I would ask my son to shovel off the car and warm it up for me- he would start to hesitate and I would say, "come on, you know I have cancer and can't do this kind of stuff..." I would get to the point where every little thing I would ask them to do, some of it meant to be exaggerated, like, "could you get me the peanut butter, cause I have cancer and I can't". Most of the time they would just chuckle and then do it. This summer they have started to ask, "since you are NED Mom, just how much longer are you going to play the Cancer card??"

Patteee

willjulia said:

Thanks
Thank you to Diane, Phil, Mike and Patti for your posts and your support. It's almost hard to believe that just five weeks ago our family of four was enjoying summer, doing all the things that families do together. Then, a few symptoms, unexplained weight loss, stomach pain, a trip to the ER, four days in the hospital, the diagnosis, the start of chemo, and here we are.
I'm telling people that we've been given a crate of lemons and we're trying to make a ton of lemonade! What else can you do but move forward. After all, Sarah's not dying, she's living!
Peace,
Dan

I am 51, dx'd stage 3B 15
once was enough

Patteee

willjulia said:

Thanks
Thank you to Diane, Phil, Mike and Patti for your posts and your support. It's almost hard to believe that just five weeks ago our family of four was enjoying summer, doing all the things that families do together. Then, a few symptoms, unexplained weight loss, stomach pain, a trip to the ER, four days in the hospital, the diagnosis, the start of chemo, and here we are.
I'm telling people that we've been given a crate of lemons and we're trying to make a ton of lemonade! What else can you do but move forward. After all, Sarah's not dying, she's living!
Peace,
Dan

I am 51, dx'd stage 3B 15
see above