CSN Login
Members Online: 11

How Long do we have?

myd
Posts: 30
Joined: Apr 2013

Good morning to all, I'm sorry so many of you have to deal with this desease.  I've been here once earlier this year.  My wife has Stage IV colorectal cancer.  It was diagnosed as Stage IIa in September 2009.  We had two  years to think the monster was behind us.  She went through the ileostomy and all the related surgeries.  On January 2012, 5 nodules were discovered on her lungs.  Well, she had surgery at Sloan Kettering on June, 2012 and those nodules were resected with a thoracic surgery.  Again, a few months of clear scans.  I'm sorry, a few months of scans where there appear to be things, but it was inconclusive.  Well, the CAT scan last week confirmed three more nodules.  My wife will be treateds with stereotactic surgery for 2 of the 3 nodules.  The last one is small at 5mm.  The doctor explained that it had minimal apparent growth from 4mm to 5mm since the last scan.  He said that it could be something, but then it may be nothing.  We are working on getting the procedure done for the two larger ones (9mm and 15mm).  He said that we could revisit the other one after another CAT scan. 

I don't know how much time I have left with my wife.  We have two girls ages 13 and 11.  Lately, our relationship has taken some shots because of the stress of the desease, kids and arguments about home improvements needed for the home.  The kids are entering ages that may cause us more stress.  Believe me, I feel very guilty about those arguments.  My question to some of you is: if you have a similar history of the desease, how long have you been fighting? 

On the visit to the radiation oncologist.  We made a comment to the effect of, "Sir, we are glad you can treat these nodules.  Question, let's say a year from now new one(s) pop up, can we do another set of sessions?"  His comment was very clinical.  More or less he said, "well, we can't keep cherry picking these things. At one time, this methold would need to be stopped."  The comment hit me hard.  My wife is horrified of going back to chemo, which would be the next step.  I don't know, if she would go through that again.  She has made comments about the quality of life. She is 50 years old and truthfully, aside from some residual foot issues due to the Oxy chemo, she looks ok.  It makes me sick that this thing is inside of her and there is so little one can do.  The feeling of helplessness is incredible. 

I would truly appreciate any input on my question, how long have you been fighting this monster?

thank you, MYD

impactzone's picture
impactzone
Posts: 437
Joined: Aug 2006

Hello, stage 4 here dx 2006. I've had 5 thoracic surgeries at Stanford. Most are VATS and I was told early on that I had only about 6 months as I had liver and lung mets. I am 54 and I've seen my kids go from 12 and 10 to 19 and 17 so I hear you so well. I don't have any magic but just trie to do what I could for them. I did go on an antidepressant as we had some issues in the family as well and I wanted stabilty.  So no one can tell you what you have left. Just keep scartching for the surface.

All my best and prayers

Chip

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

Only stage III rectal here.  Stage II breast.  Does that make me a stage 5?????

7 years, July 4, since last 'boost' treatment on my breast cancer.  I, too, was told I had 6 months to live....November 2004.  Both of my primary cancers had hit my lymph system before they were caught.

My thought is that since we don't have a real timetable on living, I will live as if tomorrow may not come.  No extravagance, but always telling my loved ones that they ARE loved!  And all of my arrangements are in writing, for that eventual day...

My special needs daughters were, by the calendar,  20 and 24, but emotionally much younger.  I was gentle in my sharing of news with them especially my Stephanie (then 20), since she was also emotionally disturbed, and would react to any health issue I had by hurting herself....

 

I cherish my days.  I have but one daughter, Kristy, left.  She was my caregiver for my rectal cancer, when my life partner lost his dad and had to be with his mom.  She stepped up, put her life on hold, and cared for me.  I am deeply in awe, since she, too, is developmentally disabled.

 

I send you light and joy, MYD,....it's possible, just seek it, dearest!

 

Hugs (from an old timer), Kathi

LindaK.
Posts: 338
Joined: Apr 2013

I don't have any advice for you since my husband is at the beginning of his cancer journey.  He was diagnosed in December, 2012, with stage 2 colon cancer and just last week he finished his 12 cycles of chemo (5 with oxy, 7 without).  I think I have a constant fear deep down that I try to suppress at all times.  I HAVE to keep positive about his cancer, but knowing deep down it may come back.  Our roles as pessimist/optimist over the years have flip flopped during the past 8 months.  He has told me once or twice he knows it will come back, those words (although I know entirely possible) really rocked me.  I have read so many stories on this board about people's years and years of surgeries, treatments, reoccurrences, etc. and it scares the heck out of me.  At the same time, I am thankful they share their intimate stories and feelings because it helps me prepare, at least I think it does.  While my husband's health during his treatment was relatively good, he said he didn't know if he could do chemo again.  One of the sub onc. we saw told him kind of flippantly "We don't even know if this chemo helps stage 2 people"  Well, that made him want to give up and then it was hell (to get him to go) each treatment after that.  I wish we could give a lesson to the oncologists on what they say to people.  I think each person is different and those of us who love and support them must support their decisions, as difficult as it may be.  We pursuaded my husband to get the Folfox treatment because he was 59 when he started and we have two grandsons who adore him.  How could we ever tell them that Grandpa "gave up" because he didn't care?  I'm not sure how I would feel if I were tha patient.

Selfishly on the caretaker side, I am also tired of this and am ashamed to think to myself "How many times would I be able to go through this?"  and I guess the answer will be "As many times as I can"

Thank you for sharing your story, I appreciate it.

Linda

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

I have traveled both sides of this street...as a patient, and a caregiver.  I am currently in the caregiver role, caring for my life partner who just received a heart transplant 2 weeks ago....he was dying, he had 2 months, when the new heart was gifted.

Caregivers have the toughest road.  They hear EVERYTHING, when the healthcare community is quick to shelter the patient.  But what is not thought about  (and I have said this to my partner's heart team) is that without a successful care plan, with carepartners that are not weary or frightened, the patient can not have the best chance at living life.  There are many moments that I feel like a boxer, losing the fight, in the 8th round...reeling from each new punch, trying desperately to keep standing, but wishing it would just be over....

I am sending warm, comforting hugs, and light, to you, dear Linda....you are not alone!  I am here, too!

 

Hugs, Kathi

LindaK.
Posts: 338
Joined: Apr 2013

Oh, Kathi, THANK you so much for your kind words.  You really do know what it feels like on both sides now.  Since I have not, I can't say if caretakers have the tougher road, I only know how I'm feeling only 8 months into this.  I work full time, have to to get the great health insurance we have.  And while my employer has been great, I know there may come a time when that stops.  I have not taken advantage of their generosity.

All along, my main concern is to get my husband through this and back on the road to good health.  Lately, I feel like collapsing myself, but don't know who would be there to support me.  Yesterday I stayed home sick with a sick headache that gave me an upset stomach.  When I told my husband this, he immediately said "I have a sore throat" so, you see, it is always about him.  I just stayed in bed as long as I could.  Some of his nasty words and actions while on oxaliplatin (and roid rage in my opinion) have pushed other family members away.  I can tell my husband "I just can't do it" about some event he wants me to host and then he just keeps at me and at me, picking a fight, but I hold my tongue and just ignore him.  This is also exhausting.  There are a few things I still take a stand on :-)  He does not work so he has lots of time to think about what I should be doing in my free time.  I am just starting to try to get myself back in order.

I am amazed at heart transplants.  I have watch many shows over the years showing real people waiting for and then getting a new heart.  It must be both fascinating and terrifying at the same time.  I wish your partner good health and good healing from his transplant.

Thank you again, your message made me smile.  I appreciate the hugs.

XOXO  Linda

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

On my experience as a patient.  Yes, there was anger!  I was caring for 2 developmentally disabled daughters, by myself.  I had a successful small computer consulting business, my only income.  I had found a man I enjoyed being with.  My life was FULL!!!!  I remember, as I was lying on a gurney, headed for a CT scan that would show where my rectal cancer had spread (already knew about the 2 inch tumor), saying to the transportation aide "This can't be anything, I have too much to do to be sick!".  I remember he smiled, with a bit of sadness, responding "Sometimes things happen in life that you don't plan for!".

I got MAD!  First, just at everyone and everything!  But then, the look on loved ones' faces, as if I had just slapped them HARD, stopped me.  I then, with the help of a counselor at my cancer treatment center, redirected my anger energy into fighting the cancer trying to steal my life.  You see, when  cancer entered my life, I lost primary control of my life.  I was in considerable pain, at first, my tumor was pressing on my tailbone, so that angered me, too!  To release that energy, I, at first, threw cheap ashtrays against a wall outside.  THAT stopped soon, when I had to clean it up myself!  I switched to throwing pillows....it takes ALOT of energy to do that, with not very much damage.

But my biggest salvation was that I made up my mind that if this beast was trying to win, it would NOT!!!!  I am a person who hates to lose at anything!  It may get control for awhile, in small ways, but not totally!  So, I decided that once a day, I would find something to laugh about.  Some days were tough, believe me (especially when, 6 months after my first dx, I was told about the second primary, breast cancer)!  But laughter, in my opinion, scares the beast...knocks it off balance.  After 20 days of doing something new, it's said, it becomes a habit.  To this day, I still find something to laugh about everyday.

There are 7 stages of grief.  Hold on, I know, hubby is not dying...but grieving can be just a real when your life is turned upside down, and your old, familiar life is gone, replaced with an existence where you see over your shoulder, just out of sight, a big bird of prey following (this is my visualization of cancer).  One of the stages of grief is anger.  The final?  Acceptance...  But this takes time.  It took me much...I kept going between anger and denial, another one of the stages.  Acceptance came, when I decided that cancer got 2 YEARS of my life, and will get NO MORE!  I now live my life, knowing that it could strike again at any time (both were in the lymph system).  BUT instead of feeling sad, I thumb my nose, and live each moment full on!!!!

My final word is, if you are hurt by his words, speak up.  I stand still, close my eyes, and find calm before I respond to my partner (yes, even something as joyful as a new heart carries anger, and fright), and then calmy speak my answer....if he cannot engage me in an argument, he cannot hurt me.  But I usually say something like "I'm not sure why you said that, but that hurt me.  I am pretty sure you did not do that intentionally to hurt me, but you did.  I love you, but I love myself more.  I need you to think about what you will say before you speak it to me.  I am here for you, your strongest supporter, but if you kick a dog, ultimately it will bite back, and I don't want to be that person.  You have enough now, without having to face it alone!"

Hugs, kathi

myd
Posts: 30
Joined: Apr 2013

I would like to take the opportunity to thank you for your responses.  Yes, it is true.  We do not know how much time we have.  I will help her as best as I can to fight this for as long as she wants or better put, her body allows.  Over the last year, I feel to be mourning her although I have not lost her.  I forget to enjoy what we have and get caught up in the not so important things of life.  I think I know what to do, but sometimes circumstances pull me away from that.  Reading your posts give me some perspective and help me redirect my resources in the right direction.  thank you.

myd

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

Yes, celebrate her life, as it is here!!!  My younger daughter died at 22....suddenly....but we lived and loved her as best we could.  I still smile, and remember her laughter!

 

If she would feel better, since your children are younger, have her start writing letters to them.  It is a concept I learned from a very young warrior who was leaving a young family behind.  He wrote letters to be opened on special occasions:  one to his daughter on her wedding day, one to his wife on their 50th anniversary.

 

It gave him great peace, he said, to think that there would still be a thought of him, many years beyond his passing...

 

Hugs, Kathi

thxmiker's picture
thxmiker
Posts: 1252
Joined: Oct 2010

Life is fragile and can be taken from anyone at any time. Car accidents are more likely to harm us then our cancer. 

 

The battle with cancer can and is frustrating. I have told the people close to me, it is my desire to be at functions, but some times my ability is not there. I can run several miles one day and be down for several days with severe abdominal cramps.  It is not my desire to be in pain, it is my reality.

 

You are a family first and that is your pack.  As a pack you all have responsibilities to the pack. We need to realize that getting back to the basics of being a family and standing as a family will take us a long way in our journey of life.  Cancer will allow your children to see the more compassionate side of the family. We all need to understand the desire and ability of the cancer patient.  

 

I am sure at times my journey with cancer is harder on my wife then me. I have accepted that I have cancer and what do I need to do to feel better? My wife is stressed every time I am in pain. I ask her to relax and this is just part of the journey.

 

Best Always,  mike

PhillieG's picture
PhillieG
Posts: 4679
Joined: May 2005

Hi MYD! I don't mean to be flippant about this but there's no concrete answer to this. My situation is that I was DX back in Feb 2004 at age 46 and have pretty much been in constant treatment. I've never been declared NED (No Evidence of Disease) nor have I been declared DEAD. No Evidence of Life. Over the almost 9 1/2 years I've had a few short breaks from treatment, usually 3 months during which time the small lung nodules grew usually resulting in wedge resections. Over the past 5 years or so I've dealt with them via 5 RFA (Radio Frequency Ablations) which were easy-peasy considering surgery as my other option.

Just to clarify, I've been on what sometimes known as Chemo-lite, Erbitux and Irrinotecan, which are a newer class of drugs that are more targeted and do less damage than the Big Gun Chemo does. It's still no picnic but I've managed to work to some extent throughout this journey...

Since April, I've been off chemo. I get scanned near the end of July and will deal with things as they come up. They are what they are... I also have kids. My boys were 10 & 6 at the time. I didn't know what to expect as far as my cancer went. Like many others, I was given a lousy prognosis...x months to live etc... Fortunately I got my colon over to Sloan Kettering and under the care of some really great doctors and here I am 9 1/2 years later. While most everyone hopes to be CURED I've been living with cancer and am OK with that. If my quality of life sucked I might not have the same attitude but it isn't and I don't.

There are 3 things that I can not stress enough. 1- Everyone's cancer is different. Even though many here are stage IV that's where the similarity often ends. 2- As far as I know, no one has a 100% guaranteed way of "curing" cancer. There are as many paths to health as there are paths to Spiritual Salvation. Not all of them are right for everyone. Some people found help through traditional western medicine, others with TCM, still others with nutrition, and then some who try everything under the sun and there are success stories and failures along every path.

But another point I wanted to make is that none of us know when out time is up. It's almost been 1 year since my in-laws were killed in a car accident. I posted about it. Here's the link

myd
Posts: 30
Joined: Apr 2013

PhillieG, thank you for your open and candid message.  I'm sorry for the loss of your in-laws, very tragic circumstance.  I wish a clear exam for you.  I'm happy God has allowed you to see you children grow up to be young men.  I hope he has the same plan for my wife.  Of course, I will help her do what she can to make that happen. thank you again, myd

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Several nodes as well many of then killed via chemo or radio, some others growing! After all manageable ! ( as Phil say in this moment of my life I'm trying to take the control of cancer , so in agreement with my docs I stop chemo when I feel I need it and then I deal with what it comes ,normally nothing or a non important growing of CEA other times a new node and then we keep it under control and killing it via radio or some months of chemo) that's my decision and worked until today,) hope it helped!

myd
Posts: 30
Joined: Apr 2013

Thank you for your sharing your stories with me.  I wish you much success on your journeys.  May God bless you.  I must let you know that reading this forum provides me with much needed strength.  You guys provide such an array of different views.  thank you, myd

ron50's picture
ron50
Posts: 1308
Joined: Nov 2001

I was dxed in 98 with an aggressive stage 3 colon ca into 6 lymph nodes. My story does not really help anyone as one of the chemo agents I was on was banned shortly afterwards due to nasty ,sometimes fatal ,side effects . that was levamisole the other was 5fu which is pretty much the standard for everyone. I had 48 weekly sessions of chemo. An unpleasant time. But here I am over 15 years later ,still ca free with no recurrence.
Although I have had no recurrence I may well still die of cancer or the treatments. I have many ongoing problems that have been grouped conveniently under the heading of auto-immune disease of an unknown nature. Just this week I was sent for nerve conduct tests by a neurologist. He was called in during the tests to confirm the technicians results. My right foot and leg showed moderate neuropathy. My left leg registered no signal. It appears the nerves are all but dead tho I retain excellent circulation in both legs. That was the end of it . The neurologist told me I had moderate to severe peripheral neuropathy, he has no idea what caused it and he can't help me with it. That cost me $600.00 for sweet nothing. My kidneys are leaking protein at a great rate but three kidney biopsies have shown no cause. My pulse has become so bad that I appear to miss every second heart beat. With congestive heart failure and cholesterol over 8 the ectopic heart beats indicate serious problems. My gp and nephrologist both consider it a benign condition. My nephrologist at least had the grace to appear embarrassed when he took my pulse . He asked me if I would consider a couple of weeks in hospital. At the other extreme my gp has not checked my pulse or blood pressure in the last three visits. I sometimes wonder if I may have upset the medical profession by not having the good grace to die of ca as predicted. My survival has been punctuated by a lot of serious illness BUT I continue to survive ,I continue to work and I continue to enjoy my fishing as often as my health allows. Best wishes for some miracles coming the way of your family, Hugs Ron.

KathiM's picture
KathiM
Posts: 7913
Joined: Aug 2005

I have you in my thoughts, always.  

 

BIG hugs, Kathi

Nana b's picture
Nana b
Posts: 3015
Joined: May 2009

Stage IV, 5 yeaars come November 2013.   I was a bit of a ***** when I was on chemp, no shisa!   An antidepreseent helped me stay calm and focus on the day to day.   You may want to go to see her onccologist with her and share your thoughts,  She may get upset but believe once she is on them, it will make a differenec.  I went off as soon as I could as I didn't wan to stay hooked on them but I thnk they helped me deal with the cancer, the job and the kids, took the edge off and allwed me to sit and think and not get emptional.

 

Good luck and hang in there.  My husband says just give her space.  When I got sick my husband took over paying the bills, and I couild tell that he handled things before they got to me.  He knew I was under a lot of stress, cancer and job wise.  

here4lfe
Posts: 296
Joined: Jan 2010

Live. Let the Doctors worry about the cancer. But you and your wife have a family to raise, fun to have, and sharing your love and committment with each other. I know your anxiety.

Best

myd
Posts: 30
Joined: Apr 2013

I have read all your responses carefully.  We will enjoy life and raise our children to the best of our knowledge.  We do have a good support system in our families and friends.  We will take advantage of their kindness and assistance.  Thank you for your words of encouragement.  At times, I have the feeling of being alone.  It takes the words of caring and kind people to help one realize that is not true.  Thank you, Myd

myd
Posts: 30
Joined: Apr 2013

I have read all your responses carefully.  We will enjoy life and raise our children to the best of our knowledge.  We do have a good support system in our families and friends.  We will take advantage of their kindness and assistance.  Thank you for your words of encouragement.  At times, I have the feeling of being alone.  It takes the words of caring and kind people to help one realize that is not true.  Thank you, Myd

danker
Posts: 765
Joined: Apr 2012

Only God can answer that one.  I was 77 when I had my first colonoscopy. My wife needs me, so here I am at age 81 and NED.  I expect her to die before the year is out.  But who knows. Just live life a day at a time. Even in the Lord's prayer it's Give my daily bread not this week or this year. Just todays.  Good Luck!

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

That is my motto.....been in treatment for 22 months - NED once for three months....have had two surgeries for lung nodules and liver tumor removal and radiation recently, sirspheres treatment - and also had a surprise metatisized brain tumor/removed in Dec. - so far clear but up for tests in Aug., just had a nice chemo break, having a summer and am back at work.

You have to keep moving forward and we never know what turn this disease will take.

You will find what gives you resolve and the best you can do is take it a day at a time. For every dark moment, and there have been many, I have been rewarded with friendships of people I never would have met and bright moments, too.

I don't know if this helps but I wish you the best.

Barb

 

 

tootsie1's picture
tootsie1
Posts: 5013
Joined: Feb 2008

As others have already said, you just never know, and that's true for cancer or just life in general. Your wife may very well be one of the fortunate ones who maintains for a long time with the disease.

The best advice I can give you is to take each day as it comes, and to make the most of each day. I was diagnosed at Stage 1, so hopefully cancer is behind me forever. My husband, however, had a sudden cardiac arrest at 46 and was revived. With an ICD implant, he's still here, but the same thing could happen anytime his heart decides an erratic rhythm is the way to go. We just don't know...

So (and I learned this after years of obsessing over our health) I would again urge you to concentrate more on how your family is living and enjoying life and less on trying to count the days, because you don't have any idea how high to count.

Praying for many happy days!

*hugs*

Gail

 

pbec's picture
pbec
Posts: 5
Joined: Feb 2013

Take one day at a time and find a support group. I was at stage 3c after surgery a year ago. Despite chemo the cancer advancd to stage 4 and I am still on chemo. We try to live in the moment. I'm 49 and we had two kids in college while all this was happening. Even had a major change in job locations just before the diagnosis. it is very overwhelming. My wife is a saint and a rock which really helps. Plus if she is mad at me she lets me know and somehow this helps me feel that life is normal. We ignore the 18 months estimated survival and just live each day. Some days are filled with stress about how to pay for the kids college and preparing financially for when I'm not here. I am the primary earner so the financial issues can loom over things. However most of these relationship/family stressors are part of life regardless of cancer. I've embraced the helplessness as part of my way to not let me stop enjoying the things I want to do. That is to say I can't change my situation but I can darn sure still enjoy my life and family. 

 

Ckat
Posts: 17
Joined: Nov 2012

I think about this everyday and troll this board to see how everyone is doing, procedures to help, progress etc. discouraging when it seems lately so many are passing. My father was diagnosed Nov 2012 rectal cancer, numerous tumors on liver. Every 2 wks on chemo, folfiri & avastin which has helped shrink many tumors and hoping to shrink more and have a liver resectioN.  rectal surgery was in march which has eased comfort, permanent colostomy. I always wonder b/c he has had positive response to chemo, rectal surgery and hopefully liver resection......how long will this give him?? I know its not a cure but hoping it will out him in the category of 5-7+years and not the 2-3 that seems more commOn. Praying all time for this awful disease. 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network