Stage IV Diagnosis - How to get on with life?

I found out in Aug I was with stage IV at 48 - emergency surgery for blockage and removal of tumor from ovary. I'm struggling getting to living 1 good day at a time. I'm luck treatment has been relatively easy and I just started Avastin. Don't know if it is working till scan in Jan. Just scared and looking for advice.
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Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    How to Get On with Life?
    GoBucks,

    I'm gonna' take a stab at this and say you're from the Miluakee area? I'm 50, so you're in the same zip code age wise as me - do you remember Lou Al Cinder? Or the 'Big-0', Oscar Robertson?

    How to get on?

    As with most things in life, we get on by doing the things that we think we cannot do. The best that any of us can do is fall out of bed and put one foot in front of the other and do the best that we can do.

    First, just realize that surgery and treatment is "major trauma" to the body - and the mind ends up hitching a ride as well. It's tough from all aspects. The biggest thing you can do is throw out expectations at this point.....and forget about your body following the calendar.

    Cancer does not know time and is on a schedule all of its own. It's up to us to make the adjustment and get in step with him. He's calling the shots right now and the best thing you can do is keep your spirits up, so that you can use all of your energy for fighting.

    There's just so much about the subject of cancer, that if I sat here and told you a bunch of stuff, I'm sure it would just be overwhelming to you right now.

    We're going to need to hear about what your treatment plan entails? What chemo drugs are you on? What side effects are you experiencing? Where are you at with your mental state with this news?

    From there, we will be able to better give you some insight about what we have learned and what our experiences have been. We don't all react the same way or tolerate all of the surgeries and treatments the same, so you will get a vast array of opinions (we're not doctors) that might be of benefit to you.

    I'd say for today - welcome to the board! Let's see what the January scan tells us - we can talk more about that. And try and enjoy the holidays to some degree.....one thing for certain, not much is going to change over the course of the next 9-days when we close the curtain on 2011.

    2012 offers new hope and optimism and you can get down to business when the calendar rolls over. I love being proactive, but the holidays are here and the 'help' at the facilities are taking a break. So, don't let cancer wreck this holiday by stealing some joy from you.

    Cancer is here and we can't change much in the next few days - but in the new year, we can see what your plan is - and give you the strength and encouragement to go forward and kick **** to ring in the new year.

    Blessings!

    -Craig
  • GoBucks
    GoBucks Member Posts: 28
    Sundanceh said:

    How to Get On with Life?
    GoBucks,

    I'm gonna' take a stab at this and say you're from the Miluakee area? I'm 50, so you're in the same zip code age wise as me - do you remember Lou Al Cinder? Or the 'Big-0', Oscar Robertson?

    How to get on?

    As with most things in life, we get on by doing the things that we think we cannot do. The best that any of us can do is fall out of bed and put one foot in front of the other and do the best that we can do.

    First, just realize that surgery and treatment is "major trauma" to the body - and the mind ends up hitching a ride as well. It's tough from all aspects. The biggest thing you can do is throw out expectations at this point.....and forget about your body following the calendar.

    Cancer does not know time and is on a schedule all of its own. It's up to us to make the adjustment and get in step with him. He's calling the shots right now and the best thing you can do is keep your spirits up, so that you can use all of your energy for fighting.

    There's just so much about the subject of cancer, that if I sat here and told you a bunch of stuff, I'm sure it would just be overwhelming to you right now.

    We're going to need to hear about what your treatment plan entails? What chemo drugs are you on? What side effects are you experiencing? Where are you at with your mental state with this news?

    From there, we will be able to better give you some insight about what we have learned and what our experiences have been. We don't all react the same way or tolerate all of the surgeries and treatments the same, so you will get a vast array of opinions (we're not doctors) that might be of benefit to you.

    I'd say for today - welcome to the board! Let's see what the January scan tells us - we can talk more about that. And try and enjoy the holidays to some degree.....one thing for certain, not much is going to change over the course of the next 9-days when we close the curtain on 2011.

    2012 offers new hope and optimism and you can get down to business when the calendar rolls over. I love being proactive, but the holidays are here and the 'help' at the facilities are taking a break. So, don't let cancer wreck this holiday by stealing some joy from you.

    Cancer is here and we can't change much in the next few days - but in the new year, we can see what your plan is - and give you the strength and encouragement to go forward and kick **** to ring in the new year.

    Blessings!

    -Craig

    Thanks so much, I'm really
    Thanks so much, I'm really working on one day at a time and optimism, I'll create ga bio but for now it is emergency surgery for blockage, tumor in ovary identified and removed at the same time, and lymph node involvemet. Three chemo treatments of XELOX and added Avastin the last time, one more treatment prior to New Year. Side effects are minimal except I hate the oxy side effect. One thing I've noticed is not too many people it go to the ovary.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    How to get on with life?
    Look at your other option...
    Hope to post more later, gotta run...
    -p
  • GoBucks
    GoBucks Member Posts: 28
    PhillieG said:

    How to get on with life?
    Look at your other option...
    Hope to post more later, gotta run...
    -p

    I agree - I've been lurking
    I agree - I've been lurking and really like your postive posts.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    How?
    I don't have great sage advice. But I do it by looking forward, always forward for the future. I started college at 51 years old. Why? Because I'm looking forward to a future, I chose being a lawyer, so here's to two years at a state college (one year down)and two more years at a University, then three years at a law school, then my bar exam, then hello courtroom. I plan on a future. What it will bring, I don't know, how long is my future, I don't know, but I know I just have to look forward to each and everyday and the day after and the day after.
    If the morning sun should kiss me gently on the face with it's beautiful rays, then I look forward to that warmth, if I should wake to the clouds, then I look forward to the warmth of a fire in the fireplace and the sweetness of life.
    I just finished my second semester in college last week, I have a 4.0 for that semester (a 3.585 the first semester)just laid down my goals, and plan on living and seeing them through.
    The first few months are the real shockers and the hard to get through times, but you will.
    As you remark about the tumor in your ovary, I oddly had one in one of my ureters. Darn things just pick and choose where they'll go.
    Believe you'll do fine, and always look forward to the future.
    Winter Marie
  • here4lfe
    here4lfe Member Posts: 306 Member
    No sage advice here
    My wife's cancer spread to her ovaries also. She is on XELIRI with avastin now. Just try to learn all you can and take it as it comes.

    Best
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Hmmmm
    That's a good question. For me it was a matter of trying to be as normal as possible. Do the things that you used to love to do, if possible, and savor the moment. I'm not sure if anyone ever goes back to the way they "used" to be, but it is possible to not think about it constantly. Look to the future for planning things long term. Sorry you are a member of this group, but you have come to a very caring board and we are here to help you out any way we can. Ask any questions you want also, as there is a lot of knowledge in our group. Good luck with your scan in January and let us know how you are. Enjoy your Holiday Season.

    Kim
  • GoBucks
    GoBucks Member Posts: 28

    How?
    I don't have great sage advice. But I do it by looking forward, always forward for the future. I started college at 51 years old. Why? Because I'm looking forward to a future, I chose being a lawyer, so here's to two years at a state college (one year down)and two more years at a University, then three years at a law school, then my bar exam, then hello courtroom. I plan on a future. What it will bring, I don't know, how long is my future, I don't know, but I know I just have to look forward to each and everyday and the day after and the day after.
    If the morning sun should kiss me gently on the face with it's beautiful rays, then I look forward to that warmth, if I should wake to the clouds, then I look forward to the warmth of a fire in the fireplace and the sweetness of life.
    I just finished my second semester in college last week, I have a 4.0 for that semester (a 3.585 the first semester)just laid down my goals, and plan on living and seeing them through.
    The first few months are the real shockers and the hard to get through times, but you will.
    As you remark about the tumor in your ovary, I oddly had one in one of my ureters. Darn things just pick and choose where they'll go.
    Believe you'll do fine, and always look forward to the future.
    Winter Marie

    Thanks Winter Marie. Great
    Thanks Winter Marie. Great outlook, I've got lots to do in the next year but I hadn't thought about college. My daughters both graduate in May, one from high school and one from college. Then we are planning a wedding for next Sept. All of thes should keep my busy. I've got one hurdle coming up - my first scan since my surgery, I believe the chemo is working because I feel good. April
  • GoBucks
    GoBucks Member Posts: 28

    Hmmmm
    That's a good question. For me it was a matter of trying to be as normal as possible. Do the things that you used to love to do, if possible, and savor the moment. I'm not sure if anyone ever goes back to the way they "used" to be, but it is possible to not think about it constantly. Look to the future for planning things long term. Sorry you are a member of this group, but you have come to a very caring board and we are here to help you out any way we can. Ask any questions you want also, as there is a lot of knowledge in our group. Good luck with your scan in January and let us know how you are. Enjoy your Holiday Season.

    Kim

    Thanks Kim. I'm still
    Thanks Kim. I'm still working but considering if I should start to apply for disability. As I've said earlier - we didn't move the wedding for next Sept. I've done all the "normal" Christmas things. I'll the board know how it goes in Jan.
  • GoBucks
    GoBucks Member Posts: 28
    here4lfe said:

    No sage advice here
    My wife's cancer spread to her ovaries also. She is on XELIRI with avastin now. Just try to learn all you can and take it as it comes.

    Best

    I am constantly trying to
    I am constantly trying to learn all I can. My first treatments were XELOX (3) and now I've added Avastin. April
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    GoBucks said:

    I agree - I've been lurking
    I agree - I've been lurking and really like your postive posts.

    Thanks GoBucks
    OK...back. I'm stage IV since Feb 2004, living with cancer. Not NED, not DEAD ;-)
    I did Avastin early on, it was just approved 1 month into my treatment so I did five months with it, six months of FOLFOX. Then I had my surgeries. The Avastin did what it was supposed to do, it shrunk tumors I had In my liver.
    It's a roller coaster ride for sure with a series of "new normals" but if you have a good medical team, maintain a healthy lifestyle and a good attitude, throw in some luck and it can be beaten or you can live a good life with it. It is often becoming a chronic thing more than not.
    Hope this helps.
    -phil
  • GoBucks
    GoBucks Member Posts: 28
    PhillieG said:

    Thanks GoBucks
    OK...back. I'm stage IV since Feb 2004, living with cancer. Not NED, not DEAD ;-)
    I did Avastin early on, it was just approved 1 month into my treatment so I did five months with it, six months of FOLFOX. Then I had my surgeries. The Avastin did what it was supposed to do, it shrunk tumors I had In my liver.
    It's a roller coaster ride for sure with a series of "new normals" but if you have a good medical team, maintain a healthy lifestyle and a good attitude, throw in some luck and it can be beaten or you can live a good life with it. It is often becoming a chronic thing more than not.
    Hope this helps.
    -phil

    Second Opinion
    My GP actually actually talked about chronic. I'm thinking about getting a second opinion after my scan in Jan. As you might have guessed, I'm in Ohio and there is the James and Cleveland Clinic. Like surgeon but still working on a relationship with my onc.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    GoBucks said:

    Thanks Kim. I'm still
    Thanks Kim. I'm still working but considering if I should start to apply for disability. As I've said earlier - we didn't move the wedding for next Sept. I've done all the "normal" Christmas things. I'll the board know how it goes in Jan.

    Disability
    I've heard that if you are stage 4 you could get disability so maybe it's worth looking into, however, there are people here that worked all the way through chemo so if you are handling chemo and you want to contintue working do it. Glad you are keeping Christmas normal -it's those things that you want to keep the same.

    Kim
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Disability
    I've heard that if you are stage 4 you could get disability so maybe it's worth looking into, however, there are people here that worked all the way through chemo so if you are handling chemo and you want to contintue working do it. Glad you are keeping Christmas normal -it's those things that you want to keep the same.

    Kim

    Hey there, my diagnosis was
    Hey there, my diagnosis was the same as you, a year ago...except added to that two blood clots one in each lung....that was my one and only symptom of this cancer and what led to the diagnosis. Didn't do emerg. surgery, but I had complete blockage in my colon but because of the lung clots I sat waiting in hospital for 23 days before a surgeon was willing to take the risk of going in for the surgery. At first they suspected it was ovarian cancer and it was pressing on my colon closing it off, or spread to colon, but it was the opposite. I have been on Folfiri from Feb. till Oct., now on a chemo. break since Oct...no progression, had scans and onc. appt. this week and I get a further break till they scan again in March....hoping for good scans again in March!!!
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I think the AA people have the right idea...
    you have to just take it one day at a time. It's a cliche, perhaps, but like most cliches, there is a grain of truth in it, and I think for us cancer folks, it's critical not to look too far ahead. We don't know what the future may hold for us. There may even be potential for a cure, you never know! At the very minimum, there is a good chance to live and enjoy life despite having a chronic condition (personally I haven't been cancer-free for the last three years). And I would encourage you to apply for SSD if you feel that would be helpful for you. I applied in August and got approved in two months. It was a pretty simple process overall. Take care, and keep us posted on how things are going-Ann
  • geotina
    geotina Member Posts: 2,111 Member
    Go Bucks
    Well, people have already given you good advise. My hubby is Stage IV, mets to liver and lungs. He was diagnosed 3/09 and still going strong. Worked thru all the surgery and chemo and in fact, has really never been off of some sort of chemo treatment. After a while you learn to accept that well, it is what it is.

    You can check into social security disability. As a Stage IV, it is pretty automatic if you have paid into the system. If you have children under 18 you can collect on them also. You would be eligible for Medicare (just you though)but that does not kick in for 2 years and therein lies the problem for many. If you quit your job you may be without health insurance and private insurance in most instances is cost prohibitive so do you homework.

    As long as you can do so, continue working, why not?

    Take care and let us know how the scans go.

    Tina
  • GoBucks
    GoBucks Member Posts: 28
    smokeyjoe said:

    Hey there, my diagnosis was
    Hey there, my diagnosis was the same as you, a year ago...except added to that two blood clots one in each lung....that was my one and only symptom of this cancer and what led to the diagnosis. Didn't do emerg. surgery, but I had complete blockage in my colon but because of the lung clots I sat waiting in hospital for 23 days before a surgeon was willing to take the risk of going in for the surgery. At first they suspected it was ovarian cancer and it was pressing on my colon closing it off, or spread to colon, but it was the opposite. I have been on Folfiri from Feb. till Oct., now on a chemo. break since Oct...no progression, had scans and onc. appt. this week and I get a further break till they scan again in March....hoping for good scans again in March!!!

    Not Too Many of Us
    Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
    April
  • GoBucks
    GoBucks Member Posts: 28
    smokeyjoe said:

    Hey there, my diagnosis was
    Hey there, my diagnosis was the same as you, a year ago...except added to that two blood clots one in each lung....that was my one and only symptom of this cancer and what led to the diagnosis. Didn't do emerg. surgery, but I had complete blockage in my colon but because of the lung clots I sat waiting in hospital for 23 days before a surgeon was willing to take the risk of going in for the surgery. At first they suspected it was ovarian cancer and it was pressing on my colon closing it off, or spread to colon, but it was the opposite. I have been on Folfiri from Feb. till Oct., now on a chemo. break since Oct...no progression, had scans and onc. appt. this week and I get a further break till they scan again in March....hoping for good scans again in March!!!

    Not Too Many of Us
    Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
    April
  • GoBucks
    GoBucks Member Posts: 28
    smokeyjoe said:

    Hey there, my diagnosis was
    Hey there, my diagnosis was the same as you, a year ago...except added to that two blood clots one in each lung....that was my one and only symptom of this cancer and what led to the diagnosis. Didn't do emerg. surgery, but I had complete blockage in my colon but because of the lung clots I sat waiting in hospital for 23 days before a surgeon was willing to take the risk of going in for the surgery. At first they suspected it was ovarian cancer and it was pressing on my colon closing it off, or spread to colon, but it was the opposite. I have been on Folfiri from Feb. till Oct., now on a chemo. break since Oct...no progression, had scans and onc. appt. this week and I get a further break till they scan again in March....hoping for good scans again in March!!!

    Not Too Many of Us
    Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
    April
  • GoBucks
    GoBucks Member Posts: 28

    I think the AA people have the right idea...
    you have to just take it one day at a time. It's a cliche, perhaps, but like most cliches, there is a grain of truth in it, and I think for us cancer folks, it's critical not to look too far ahead. We don't know what the future may hold for us. There may even be potential for a cure, you never know! At the very minimum, there is a good chance to live and enjoy life despite having a chronic condition (personally I haven't been cancer-free for the last three years). And I would encourage you to apply for SSD if you feel that would be helpful for you. I applied in August and got approved in two months. It was a pretty simple process overall. Take care, and keep us posted on how things are going-Ann

    One Day At A Time
    Ann
    I'm really working on one day at a time sometimes I get caught up in reading to much on the internet. April