Post nephrectomy blues

foxhd
foxhd Member Posts: 3,181 Member

I've been thinking about this for quite awhile. I wonder if y'all can give some input. It seems that many people face their cancer diagnosis with fear, worry and then aggression. First, what a terrible diagnosis to be given. Then the worry and concern for their life and the impact on the family. Next is the I'll do anything to get rid of the cancer, and the 100% committment to surgery and drugs. Life becomes VERY valuable. After nephrectomy there is some time spent recovering. Sudenly a type of depression developes. Even though we have increased our survival chances. Maybe the reality of what has happened hits home. Maybe time has let us realize our mortality. Maybe it is the knowing that it can come back. We do our best in our recovery. It is the only thing we have some influence over and now it is behind us. I'll bet most of us have dealt with this bummer of a trip. Not addressed much. What is your input?

I also wonder about those people who join the forum in an absolute panic after diagnosis. Begging for information and support. Then they disappear just as fast. Where are their heads at?

Since I've been here, (and long before me), members drop off. Some do pass on. Some are back to normal lives, and some are just tired of dealing with this publicly. Our group is always evolving. Some have no cancer IQ or knowledge. Some become research genius'. Some like me focus on living like a lucky retiree enjoying each day and looking forward to tomorrow. I don't over think it anymore. I try not to let it run my life. I hear all the time that I've got a good attitude. I really don't know how that helps. Cancer doesn't look for input from our "attitude". I have faith in my care team that they are doing the right thing. And as long as I agree with the plan, I don't, or so far haven't , second guessed them. Hell, I should be dead. It is their decision making that has me prospering nearly 3 years after the fact. I have committed to the care plan. (this may change after next scan. I hope not) What is the philosophy of being a cancer survivor for you? What keeps you sane and productive?

I guess as I await my next scan, I have been thinking about the psychological impact cancer makes upon us. We discuss the physical impact every day and lend a shoulder to lean on but how about the long term influences on how we live?

ramble, ramble,  ramble..............(I'm guess I'm putting off shoveling snow).........

«1

Comments

  • Darron
    Darron Member Posts: 310 Member
    Playing Cards

    I met a man in the waiting room on Thursday that was diagnosed in 2002 with stage IV. He is a devout Christian and had the attitude that he was going to fight, but it was out if his hands. He had done a trial several years back and was on Sutent for a while when it 1st came out. I could not help but think that I was speaking to a miracle. This man should not be here.

    In reflecting on it, I can't help but think that his attitude played a role in it. I am also a believer in the power of prayer, but I don't think it is appropriate in this forum. Taking it a step beyond the belief and looking at the state of mind that a person is in when they believe and have faith that what they are doing is having an impact. I think that if you can somehow put your mind in a positive place, your body will function more in the manner it was designed. I liken it to that exam we have all failed to study for....the realization and stress that you are not prepared and are about to fail can literally make you sick. 

    in the case of the man I met, his body was calm because his mind was calm. Weather it is faith in God, diet, treatments, or doctors; I think it is critical that we are able to somehow convince our minds and bodies that it will all be OK.

    I know 1st hand that is easier said than done, but I also know that this site helps with the process. Whatever it is for each person, you will find support here that helps.

    We have all been dealt a crappy hand in the card game of life, but they are the cards we must play out. Sometimes when you are dealt a bad hand, you can still win if you know how to bluff your way thru it.

    I know, more ramble, ramble, ramble, but hey he asked.

  • GSRon
    GSRon Member Posts: 1,303 Member
    Darron said:

    Playing Cards

    I met a man in the waiting room on Thursday that was diagnosed in 2002 with stage IV. He is a devout Christian and had the attitude that he was going to fight, but it was out if his hands. He had done a trial several years back and was on Sutent for a while when it 1st came out. I could not help but think that I was speaking to a miracle. This man should not be here.

    In reflecting on it, I can't help but think that his attitude played a role in it. I am also a believer in the power of prayer, but I don't think it is appropriate in this forum. Taking it a step beyond the belief and looking at the state of mind that a person is in when they believe and have faith that what they are doing is having an impact. I think that if you can somehow put your mind in a positive place, your body will function more in the manner it was designed. I liken it to that exam we have all failed to study for....the realization and stress that you are not prepared and are about to fail can literally make you sick. 

    in the case of the man I met, his body was calm because his mind was calm. Weather it is faith in God, diet, treatments, or doctors; I think it is critical that we are able to somehow convince our minds and bodies that it will all be OK.

    I know 1st hand that is easier said than done, but I also know that this site helps with the process. Whatever it is for each person, you will find support here that helps.

    We have all been dealt a crappy hand in the card game of life, but they are the cards we must play out. Sometimes when you are dealt a bad hand, you can still win if you know how to bluff your way thru it.

    I know, more ramble, ramble, ramble, but hey he asked.

    Great topic..!!  I went in to

    Great topic..!!  I went in to instant shock when I got the Dx 2-2012.  Then a huge emotional roller coaster for the weeks prior to surgery.  I made out a will, as I was concerned I would not survive the surgery.  I was a bit relieved when I looked up my surgeon (Google).. then more relieved when I met my surgeon.  Then more tense when I found out about the additional issues..  Then the pre-surgery tests were good.  But still I hardly slept until surgery day...  Waking up after surgery was a huge emotional "high"..  I felt like I could conquer the world..!

    Then the ups and downs... clear scans for 9 plus months.. UP, then the Mets showed up DOWN, Then Liver issues with Votrient DOWN.  Then got the next scan, shiringage UP UP UP.. then got blood tests that Liver was very unhappy and would have to stop Votirent DOWN.  Took about 6 weeks off of drugs, UP (did the IOM at that time).  Next scan before starting Inlyta, Mets all grew DOWN.  Blood disease found.. neutral..  Got last scan, shrinkage UP.

     

    So, this Cancer thing has it's ups and downs... kind of like life in general..  My UPS are higher than my DOWNS, which is good.. for now..

     

    I must say that I am glad I did not find this place before surgery and double glad to find this place post surgery... for me, ignorance was very bliss..!!

    Ron

  • NewDay
    NewDay Member Posts: 272
    GSRon said:

    Great topic..!!  I went in to

    Great topic..!!  I went in to instant shock when I got the Dx 2-2012.  Then a huge emotional roller coaster for the weeks prior to surgery.  I made out a will, as I was concerned I would not survive the surgery.  I was a bit relieved when I looked up my surgeon (Google).. then more relieved when I met my surgeon.  Then more tense when I found out about the additional issues..  Then the pre-surgery tests were good.  But still I hardly slept until surgery day...  Waking up after surgery was a huge emotional "high"..  I felt like I could conquer the world..!

    Then the ups and downs... clear scans for 9 plus months.. UP, then the Mets showed up DOWN, Then Liver issues with Votrient DOWN.  Then got the next scan, shiringage UP UP UP.. then got blood tests that Liver was very unhappy and would have to stop Votirent DOWN.  Took about 6 weeks off of drugs, UP (did the IOM at that time).  Next scan before starting Inlyta, Mets all grew DOWN.  Blood disease found.. neutral..  Got last scan, shrinkage UP.

     

    So, this Cancer thing has it's ups and downs... kind of like life in general..  My UPS are higher than my DOWNS, which is good.. for now..

     

    I must say that I am glad I did not find this place before surgery and double glad to find this place post surgery... for me, ignorance was very bliss..!!

    Ron

    My turn to ramble

    Hi Fox,

    My turn to ramble.   I have not dropped off.  I just don’t contribute much.  I know I should, but I’m usually a quiet person and don’t socialize much. 

     When I first joined, I was in an all-out panic.  I wasn’t just trying to cope with the diagnosis.  I was trying to figure out how to choose a surgeon and was getting confused about it all.  One of my first posts here was asking the board members if anyone made life-altering changes in their lives.  Wisely, people here chimed in with a “wait, wait, wait”, you don’t know what you are dealing with yet.  I did wait a few months, but then did end up making several important changes.  I’m more generous to others with my time and money.  I’m now much closer to my family and very close to one sister.  I don’t talk to them about cancer though, since the surgeon announced to them after my surgery that I was cured, so they don’t understand why I get scans or see an Oncologist and certainly don’t understand why I continue to communicate with others who have or had cancer.

     As far as post-diagnosis depression, I suffered serious depression for several months, but most of that was due to undiagnosed abdominal pain and continued weight loss that I thought that was going to do me in.  Fortunately, the pain has now much improved and I’ve managed to put back on some weight.  So, my depression is much better.  I do check the site almost every day, which means I’m also thinking about cancer every day, but not every minute.  I am at high risk of recurrence and if that happens, I may go into a tail spin.  If I think about that much, it scares the bejeebees outa me.  Right now, I only know that I’m actually living a more meaningful life now than I was before and I’m taking it one day at a time.

     Told you I was going to ramble.

     Kathy

  • Vivaldi
    Vivaldi Member Posts: 27
    Lurking

    You posed that people come on in a panic but then disappear.  Thus you have described me, it is a year since my diagnosis, and for the months it took to go through the surgery and getting the pathology I followed every day.  I don't know if you realize Mr. fox how important your journey is to many people.  My pathology was oncocytoma, so I rarely say anything because I didn't have kidney cancer......well maybe.  I just flunked my first follow up CT.  I followed through your Il2 treatments, checked for news on texaswedge:(  and look in on the people who held me together during the crazy times.  So I lurk and read, as do probably many others.  I am amazed always by the courage and tenacity of the members here and of the information contained in this forum.  My dad died of kidney cancer, my grandfather and my cousin as well, when I heard the words kidney mass, I was pretty scared.  You guys were there for me and for many others and I am so very thankful for that.  I think you are awesome.

  • Srashedb
    Srashedb Member Posts: 482 Member
    Spouse of kidney cancer survivor

    someone brought up cards and playing what you are dealt; in our case, cancer has been a visitor in our home. First, it was me then my husband had early stage throat cancer, skin cancer and now kidney cancer.

    life has not always been easy but many years ago after the loss of my dad to violence, I said to my mother-in-law that it wasn't fair. Her response: "honey, who ever told you life was fair?" Simple yet it has guided me through a lot.

    sticking to kidney cancer, it came suddenly; no warning. Stage 4, lucky to make it to Christmas and then we found great and experienced doctors who offered treatment.

    first, the laminectomy followed by 16 days of small bowel obstruction and loss of 25 pounds, radiation, cyber surgery and then the radical nephrectomy. Months later, I am experiencing what I call PTSD. Out if the blue, a memory will return, other days, I am convinced that it will return and take him. I can work myself into frenzy.

    My husband is far more accepting than I or else, he keeps calm for me; I think he believes that sooner or later, it will get him. His back still hurts from the surgery which frustrates him because he is active and was very athletic. I chase him around to make sure he drinks water since he forgets, and ask questions.

    Long ago, I read a statistic about difficult patients and increased survival but logically, it makes no sense. although my husband is an atheist, we are both from strong Catholic backgrounds so prayers were said and continue but it is others. I am not atheist but really don't believe in praying for a result so I don't. It seems I read something about the power of prayer and survival but again, logic prevails for me.

    I hope I am not encroaching on a great topic since I do not have kidney cancer.

    thanks for starting this, Fox

    Sarah

  • tonib
    tonib Member Posts: 33
    I haven't been on this site

    I haven't been on this site for long but am so glad I joined. I have been through the shock and find myself now determined.  I have yet to go through the angry stage, not looking forward to it! I hope I am one who drops off. You and many others have been extremely helpful. Thank you!

  • Stros2013
    Stros2013 Member Posts: 31
    And then we wait....

    I had to laugh about the ramble part.  My older two (all knowing teenagers) are always enlightening me that I ramble too much.  They  impertinently say, " blah, blah, blah."  I laugh because I remember thinking the same about my father.

    But in this case, fox has hit on an incredible topic that is heavy And appropriate.

    The shift from normalcy to crisis back to waiting is something that took six months for me to grip and accept.  At the six month mark,  I was a basket case.  Daily I talked with myself....saying things like, "God, what did I do to piss you off!"  

    I didn't ask to be sick.  I didn't want cancer and I sure as heck didn't want the attention.  I wanted my old life back.  One where I had two kidneys, couldn't spell Creatinine (still not sure I got it right) and I sure as heck didn't know what NED Was about.

    Upon reflection,  one of the confusing things was the crisis and then "you're cured" declarations.  It happened so fast.  Within 48 hours I went from bleeding internally and wanting anything to make the pain stop to poof.....you''ve lost 30lbs and are too weak to walk but your cured.  "We got it all" was my doctors declaration. Looking back it was a total setup.  

     Everyone kept saying I had to be positive and that I was fortunate to be cancer free.  But....why I did feel like a fraud?  Sure I played the game for a while.  I clapped my hands and shouted,  "that the best you got!". Sort of like sergeant Dan in Forest Gump.  Inside though,  there were the concerns and the kernel of doubt.  Questions started to formulate like....is the cancer really gone?  Is there a single cell that's hiding somewhere doing push-ups.....just waiting to spring anew?    Months later once I figured out how to resume some resemblance of life these thoughts began to percolate.  The old football injury started to feel like a bone met instead of just telling me of an impending cold front.  The shoulder soreness from 20 years of baseball was certainly a met.

     I broke at the six month point.  I came to the realization that i needed help.  At 43,  I'd just never thought about the possibility of dying and while I wasn't dying, i surely wasn't living.  I was a father of two teenagers and two under the age of two.  I was happily married and was fortunate to have more than was needed.  It never crossed my mind that I was mortal.  Dying or actually not living was the great fear that visited me late at night after being cured.   My newfound awareness didn't happen because of keen insight to my aches and pains or some moment of enlightenment.  Definitely no burning bushes......I had my eyes opened because my depression, self preoccupation,  call it what you will...was exposed.  At my six month scan I could barely walk I was so afraid.  I was terrified.  

    The result of those 6 month scans....NED.  And just as fast as the doctor said ,"all is good." My pains subsided And I was left to evaluate my state of mind.  The doctor suggested pills as an option.  For some that's the right step.  I declined.  But I did get help through Livestrong counselors.  

    Within three or four months,  I was in so much of a better place.  I had accepted that cancer could return and that it could kill me.  We went though all of the steps of what it meant if it returned.  The fear associated with what next,  slowly  subsided.

    At that point I was able to really begin living again and the realization that this is a journey for the balance of my life came into focus...

    in closing,  I chose the title ,.....And then we wait, because in some ways it can be viewed as a negative or as a positive.  Before acceptance,   waiting was a negative.  Waiting was an annoyance.  Waiting was conceding control To the cancer.

    After acceptance;  waiting became part of the journey.  Waiting offers time to re-prioritize and to live.....Experiencing all that life had to offer.

    Off to pick up kiddos from soccer practice.  Thanks fox..... for sharing....and living.

  • twinthings
    twinthings Member Posts: 409
    A few days prior to finding

    A few days prior to finding out I had kidney cancer, I was admitted thru the ER (while working in Ohio) for dehydration secondary to stomach flu.  The ER doc ordered a ct just to rule out pancreatitis, which it did.  She sent me upstairs to a room in this tiny little 21 bed hospital and I received 6 bags of fluid overnight.  The next morning the attending DO came in and told me I was free to go.  He barely took time to discuss my health because he had $$ in his eyes.  Almost immediately, he said "so, I understand you are working here locally, oil and gas, eh?  A lot of oil people coming to town.  Well, I have an office here in town and I am accepting new patients, so, you might let your people know (as he extends his arm to offer me his business card)".  Really?  I did not indulge him and he quickly headed out.  Almost an after thought, he stuck his head back in and said "did they tell you there's a small cyst on your right kidney?"  I said "they who?  You're my doctor".  He told me it was nothing to worry about but just be aware of it and if I begin having any problems, I might want to have it checked out.  He left and half hour later, I had my walking papers and left too.  That was on a Thursday.

    Monday, after work, I picked up my medical records.  I went back to my apartment (in Ohio) and began packing for my bi-monthly visit home (Oklahoma).  Shortly before crawling in bed, I remembered the records and sat down to look them over.  The first thing (because it was written in bold print) that I read was, 'diagnosis of exclusion, Renal Cell Carcinoma'.  I could not believe my eyes.  I went from happily packing, with giddy anticipation of spending a week at home with hubby to quite litterally thinking I was dying...from this to that in 20 seconds flat, it was almost more than I could bear.  And, I was alone.  I couldn't call my husband.  How insensitive of me to tell him on the phone.  I couldn't call our children and upset their world. 

    That was the worst day of this ordeal and the longest night of my life.  The fact that both my parents died within months of their cancer dx's did not escape me in my darkest despair that night.  I had myself buried and gone, all before the sun came up.  My mind and emotions were shot after that night in hell.  I didn't make it thru the night without caving and calling my hubby (call me a coward), and thankfully so.  After he gained his composure, he was able to reign in my crazy. 

    I'll be the first to admit, I haven't had the best attitude.  I was really pissed that I had to find out that way.  I know that there is no 'ideal' way to find out you have cancer but, without getting too personal, I have a past that makes being alone at times like this, all the more difficult.  I will say though, since finding this site and meeting you all, my attitude has MUCH improved.  Mostly because, reading what so many of you have been through and are going through has helped me to appreciate that I am one of the lucky ones.  Having said that, knowing I'm one of the lucky ones doesn't keep my crazy from showing, sometimes more often than not.  Why is that?  I've pondered this a bijillion times.  I got cancer out of my body, why can't I get it out of my mind?

    Here recently, after a long hard talk with myself, I made a conscience decision to quit being angry and scared and bitter.  I have no reason to be any of those things and I know I need to return to the person I was before cancer.  Laid back, easy going.  I have come to terms with maybe needing help of some sort, I'm just not sure what.  I've never taken meds for depression (not at all opposed to it, I just tend to get the blues for a few days here and there, not requiring meds) and I don't see myself lying on someones couch (although I've thought many times, without regard to cancer, that I would benefit from therapy), so, I read self help books and learn all I can from you all.  I see the grace with which you fox and Ron, Darron, Neil, Tillie, Brenda, Djinnie and others like you, handle far greater health scares than mine and it makes me want to be just as strong and graceful.  Having you all makes me feel not at all alone.  I commented recently, on this site, that I must be sick to find comfort in the fact that I am not alone.  I did not mean to imply that I was glad that you all are sick (or have been), but I got my hand slapped via my private message box by another member that I apparently offended.  I almost signed off, never to sign on again.  I don't come here with ill intent and to imply otherwise got my blood boiling.  But, I'm still here and I'm glad I stuck around. 

    I know for me to overcome the after affects of cancer I am going to have to trust in the power of positive thinking.  I'm working to see the good things that have come from this nightmare and let the bad things go.  Every day is a challenge and every day I have to give myself a pep talk, sometimes I listen, sometimes I don't.  My goal is to reach a place where my crazy only shows at scan time with all the in between time being just another day in my otherwise pretty fantastic world.

    I don't know about any one else, but if you asked (most of) my family, co-workers and all but my closest friends, how I'm dealing with all this they'd probably say, all of what?  I don't share with people, as a rule.  I deal with my 'issues' privately and internally, with little to no support from loved ones around me.  I've been that way my whole life, so, to open up here, so candidly is not easy but is definately helping.

    It's easy to ramble, and may even be theraputic.  Granted my rambling may well result in a private message or two Surprised.

     

     

     

  • rae_rae
    rae_rae Member Posts: 300 Member
    Stros2013 said:

    And then we wait....

    I had to laugh about the ramble part.  My older two (all knowing teenagers) are always enlightening me that I ramble too much.  They  impertinently say, " blah, blah, blah."  I laugh because I remember thinking the same about my father.

    But in this case, fox has hit on an incredible topic that is heavy And appropriate.

    The shift from normalcy to crisis back to waiting is something that took six months for me to grip and accept.  At the six month mark,  I was a basket case.  Daily I talked with myself....saying things like, "God, what did I do to piss you off!"  

    I didn't ask to be sick.  I didn't want cancer and I sure as heck didn't want the attention.  I wanted my old life back.  One where I had two kidneys, couldn't spell Creatinine (still not sure I got it right) and I sure as heck didn't know what NED Was about.

    Upon reflection,  one of the confusing things was the crisis and then "you're cured" declarations.  It happened so fast.  Within 48 hours I went from bleeding internally and wanting anything to make the pain stop to poof.....you''ve lost 30lbs and are too weak to walk but your cured.  "We got it all" was my doctors declaration. Looking back it was a total setup.  

     Everyone kept saying I had to be positive and that I was fortunate to be cancer free.  But....why I did feel like a fraud?  Sure I played the game for a while.  I clapped my hands and shouted,  "that the best you got!". Sort of like sergeant Dan in Forest Gump.  Inside though,  there were the concerns and the kernel of doubt.  Questions started to formulate like....is the cancer really gone?  Is there a single cell that's hiding somewhere doing push-ups.....just waiting to spring anew?    Months later once I figured out how to resume some resemblance of life these thoughts began to percolate.  The old football injury started to feel like a bone met instead of just telling me of an impending cold front.  The shoulder soreness from 20 years of baseball was certainly a met.

     I broke at the six month point.  I came to the realization that i needed help.  At 43,  I'd just never thought about the possibility of dying and while I wasn't dying, i surely wasn't living.  I was a father of two teenagers and two under the age of two.  I was happily married and was fortunate to have more than was needed.  It never crossed my mind that I was mortal.  Dying or actually not living was the great fear that visited me late at night after being cured.   My newfound awareness didn't happen because of keen insight to my aches and pains or some moment of enlightenment.  Definitely no burning bushes......I had my eyes opened because my depression, self preoccupation,  call it what you will...was exposed.  At my six month scan I could barely walk I was so afraid.  I was terrified.  

    The result of those 6 month scans....NED.  And just as fast as the doctor said ,"all is good." My pains subsided And I was left to evaluate my state of mind.  The doctor suggested pills as an option.  For some that's the right step.  I declined.  But I did get help through Livestrong counselors.  

    Within three or four months,  I was in so much of a better place.  I had accepted that cancer could return and that it could kill me.  We went though all of the steps of what it meant if it returned.  The fear associated with what next,  slowly  subsided.

    At that point I was able to really begin living again and the realization that this is a journey for the balance of my life came into focus...

    in closing,  I chose the title ,.....And then we wait, because in some ways it can be viewed as a negative or as a positive.  Before acceptance,   waiting was a negative.  Waiting was an annoyance.  Waiting was conceding control To the cancer.

    After acceptance;  waiting became part of the journey.  Waiting offers time to re-prioritize and to live.....Experiencing all that life had to offer.

    Off to pick up kiddos from soccer practice.  Thanks fox..... for sharing....and living.

    I took care of my mom from

    I took care of my mom from 2008 until she passed last March in my home. She had dementia, diagnosed at age 65, and gone at 70. During this time I also worked full time and then was diagnosed with kidney cancer in 2010. It hit me that my mother might outlive me. 

    Having gone through the process of DPOA for my mom, I quickly put my life in order to. I struggled the first year with scanxiety, a recurrence scare and severe fatigue. Depression as well- but I think that started before my diagnosis because of my care-giver role.

    In 2012, my mom's condition declined rapidly. I didn't come here as much because I had no time. After she passed in March, I had a difficult time coming here because I couldn't bear to be here. I saw people decline and pass and it hurt, and still does. There are times when I don't want another scan ever because I don't want to be reminded of my cancer. 

    I'm not sure if anyone who has had cancer ever goes back to who they were, we just adjust to a new normal, whether it's NED or not. At least we know there is hope- hope if it comes back, hope if we still have it and hope for those yet to be diagnosed. And those of you that continue to post and fight and research are the ones giving the rest of us hope. I don't post often but I do pray for all here. 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    A few days prior to finding

    A few days prior to finding out I had kidney cancer, I was admitted thru the ER (while working in Ohio) for dehydration secondary to stomach flu.  The ER doc ordered a ct just to rule out pancreatitis, which it did.  She sent me upstairs to a room in this tiny little 21 bed hospital and I received 6 bags of fluid overnight.  The next morning the attending DO came in and told me I was free to go.  He barely took time to discuss my health because he had $$ in his eyes.  Almost immediately, he said "so, I understand you are working here locally, oil and gas, eh?  A lot of oil people coming to town.  Well, I have an office here in town and I am accepting new patients, so, you might let your people know (as he extends his arm to offer me his business card)".  Really?  I did not indulge him and he quickly headed out.  Almost an after thought, he stuck his head back in and said "did they tell you there's a small cyst on your right kidney?"  I said "they who?  You're my doctor".  He told me it was nothing to worry about but just be aware of it and if I begin having any problems, I might want to have it checked out.  He left and half hour later, I had my walking papers and left too.  That was on a Thursday.

    Monday, after work, I picked up my medical records.  I went back to my apartment (in Ohio) and began packing for my bi-monthly visit home (Oklahoma).  Shortly before crawling in bed, I remembered the records and sat down to look them over.  The first thing (because it was written in bold print) that I read was, 'diagnosis of exclusion, Renal Cell Carcinoma'.  I could not believe my eyes.  I went from happily packing, with giddy anticipation of spending a week at home with hubby to quite litterally thinking I was dying...from this to that in 20 seconds flat, it was almost more than I could bear.  And, I was alone.  I couldn't call my husband.  How insensitive of me to tell him on the phone.  I couldn't call our children and upset their world. 

    That was the worst day of this ordeal and the longest night of my life.  The fact that both my parents died within months of their cancer dx's did not escape me in my darkest despair that night.  I had myself buried and gone, all before the sun came up.  My mind and emotions were shot after that night in hell.  I didn't make it thru the night without caving and calling my hubby (call me a coward), and thankfully so.  After he gained his composure, he was able to reign in my crazy. 

    I'll be the first to admit, I haven't had the best attitude.  I was really pissed that I had to find out that way.  I know that there is no 'ideal' way to find out you have cancer but, without getting too personal, I have a past that makes being alone at times like this, all the more difficult.  I will say though, since finding this site and meeting you all, my attitude has MUCH improved.  Mostly because, reading what so many of you have been through and are going through has helped me to appreciate that I am one of the lucky ones.  Having said that, knowing I'm one of the lucky ones doesn't keep my crazy from showing, sometimes more often than not.  Why is that?  I've pondered this a bijillion times.  I got cancer out of my body, why can't I get it out of my mind?

    Here recently, after a long hard talk with myself, I made a conscience decision to quit being angry and scared and bitter.  I have no reason to be any of those things and I know I need to return to the person I was before cancer.  Laid back, easy going.  I have come to terms with maybe needing help of some sort, I'm just not sure what.  I've never taken meds for depression (not at all opposed to it, I just tend to get the blues for a few days here and there, not requiring meds) and I don't see myself lying on someones couch (although I've thought many times, without regard to cancer, that I would benefit from therapy), so, I read self help books and learn all I can from you all.  I see the grace with which you fox and Ron, Darron, Neil, Tillie, Brenda, Djinnie and others like you, handle far greater health scares than mine and it makes me want to be just as strong and graceful.  Having you all makes me feel not at all alone.  I commented recently, on this site, that I must be sick to find comfort in the fact that I am not alone.  I did not mean to imply that I was glad that you all are sick (or have been), but I got my hand slapped via my private message box by another member that I apparently offended.  I almost signed off, never to sign on again.  I don't come here with ill intent and to imply otherwise got my blood boiling.  But, I'm still here and I'm glad I stuck around. 

    I know for me to overcome the after affects of cancer I am going to have to trust in the power of positive thinking.  I'm working to see the good things that have come from this nightmare and let the bad things go.  Every day is a challenge and every day I have to give myself a pep talk, sometimes I listen, sometimes I don't.  My goal is to reach a place where my crazy only shows at scan time with all the in between time being just another day in my otherwise pretty fantastic world.

    I don't know about any one else, but if you asked (most of) my family, co-workers and all but my closest friends, how I'm dealing with all this they'd probably say, all of what?  I don't share with people, as a rule.  I deal with my 'issues' privately and internally, with little to no support from loved ones around me.  I've been that way my whole life, so, to open up here, so candidly is not easy but is definately helping.

    It's easy to ramble, and may even be theraputic.  Granted my rambling may well result in a private message or two Surprised.

     

     

     

    I found out I had cancer

    I found out I had cancer while sitting in the waiting room for the CT scan. I opened the envelope that was intended for the techician and read the doctor's note: "large mass on right kidney, likely carcinoma. Patient does not know". My heart dropped, I texted my husband who quickly responded that kidney cancer had a high "curable" rate. I then remembered a co-worker who, years before, had a football-sized tumor and was still living a full and happy life. I calmed immediately. I had my scan and the journey began.

    It has been a textbook journey...large tumor, but other than that, all has gone as expected. I found myself consoling others who were distraught about the news. I educated them, and also myself. I have only been on this journey for a short time, so it is difficult to say yet, if I have experienced the emotional ups and downs of this. I have had a lot of ups and downs this year..my mom passed away from lung cancer, 3 months later, we lost our dear friend to neck cancer. I was - and still am reeling from grief of those losses.

    Funny...in September I went to a psychic...I know many of you don't believe - but I needed to feel a connection to my recently lost mom, and worried about our (then) very sick friend. The psychic said to me as soon as I sat down..."you have something on your right side. You need to go see a doctor" and we talked about gall bladder. I already had booked a doctor appointment for the end of the week and laughed that she had been accurate. She then said I have 2 names here....Wilhelmina and Johannes....my parent's names....not exactly common names to pull out of thin air! And then she started to talk to me about my son....I didn't even bring him up. She confirmed the fears that I had about him. I won't get into that here, but there is a saying "a mother is only as happy as her unhappiest child". You parents out there understand this. I would give anything to have him not to have to deal with this. When diagnosed with RCC I knew I had to focus on getting better first so that I could then help my son as best as possible. So that is the next leg of my journey. The biggest and hardest thing I feel I have had to do. (If this sounds disrespectful to any of you who have had their own battles - I don't mean to. My cancer has been a simple battle. I have read your stories and am humbled by what you have gone through - and came out fighting!!) I have learned from my many challenges that I am a very strong woman. That, coupled with being with a very loving husband (2nd husband - first husband was the damaging one! lol) I sometimes feel like I can handle anything that comes along. And I have. Til now. My son's situation is where I feel helpless. I think that is the worst part. I can be loving and supportive, but I want to make it go away for him. But I can't. That is the hard part.

    Talk about rambing! So, Fox....it was a very good question to put out there. I haven't been able to give much of an answer since I have only been through this for a few months....and haven't had a chance to work through it all. :)

    Jojo

  • dhs1963
    dhs1963 Member Posts: 513
    There is a mass on your kidney and you have to deal with it

    That was sort of my introduction.

    In reality, the introduction was years earlier, first, when my grandfather's kidney cancer.  (He died of it at 82 from the cancer; it was not diagnosed until it was terminal).  When my father was diagnosed in 2003 (and had a partial nephrectomy), I started getting concerned.  I mentioned it to my Dr. who said that kidney cancer is environmental disease, and not genetic.  I told that to my father, who said that may not be true.  I mentioned it again to my Dr a few times, when I had various issues...and he would neither refer me to a urologist or order a CT. 

    In my case, in the first half of 2012, I had lost 30 lbs without trying (I though it was great).  I was also very tired.  I metioned it to my Dr, and he said it is because I need to excersize more.

    Well, in the early morning of May 1, 2012 (like 12:15 AM), I fainted due to extreme abdominal pain.  When I went down, I fell plat on my face, and broke my nose.  911.  At the ER, they wanted to do a CT to figure out the cause of the abdominal pain.  Nothing was identified, but they found the mass on my kidney.  Six months later, a metastisis was identified.  Being scanned earlier would not have prevented the cancer, but they might have caught it before the met.

     

  • Gordon Charles
    Gordon Charles Member Posts: 91
    Late to the party...

    The nice thing about coming in later is that most of the things you want to say have already been taken care of.  And in this forum you truly know that people understand. When first diagnosed I did the usual tailspin. My only real issue after diagnosis, surgery, and post op is:  Now what do I do?  I became reasonably comfortable with the thought of dying.  I figured the mets would do me in.  But those little suckers just sit there...I know they'll perk up some day but how do I plan until then?  EXAMPLE: I have to put in my vacation request at work soon.  Do I use it all or hold some for roll-over next year?  What about that solo camping trip I've wanted to do? I expect that when things get terminal I'll have new priorities but now I'm kind of drifting.  My onc says when things start south it will be a geometric progression.  When do I start doing those things that are justified by:  " Hey, I'm dying...let me do what I want." ? 

  • Djinnie
    Djinnie Member Posts: 945
    Life after Surgery!

     

    I first found out I had kidney cancer in 2003, I was very lucky to be placed in a study group for Radiofrequency Ablation, with one of the top kidney cancer specialist in the US. The treatment was very successful and I recovered well, and after the first few scans and with the reassurance from my Surgeon, I put the whole thing behind me.

    Fast forward to end of 2012 once again a stomach pain resulted in an MRI, the cancer had returned same area, only this time the tumour is bigger and more agressive. The words "Oh Bum" didn't quite cover it, I was pretty devastated! I had great support though from family and friends, which helped plus my Buddhist practice. There were periods of mood swings for some weeks after the operation but I gradually  worked through it. Then came the recent unwelcome news that some new growths have appeared. I have been battling with my mind set on this, I know I can get through it I just have to keep my head on straight. 

     

     

     

  • Suekub
    Suekub Member Posts: 137
    Djinnie said:

    Life after Surgery!

     

    I first found out I had kidney cancer in 2003, I was very lucky to be placed in a study group for Radiofrequency Ablation, with one of the top kidney cancer specialist in the US. The treatment was very successful and I recovered well, and after the first few scans and with the reassurance from my Surgeon, I put the whole thing behind me.

    Fast forward to end of 2012 once again a stomach pain resulted in an MRI, the cancer had returned same area, only this time the tumour is bigger and more agressive. The words "Oh Bum" didn't quite cover it, I was pretty devastated! I had great support though from family and friends, which helped plus my Buddhist practice. There were periods of mood swings for some weeks after the operation but I gradually  worked through it. Then came the recent unwelcome news that some new growths have appeared. I have been battling with my mind set on this, I know I can get through it I just have to keep my head on straight. 

     

     

     

    Blessed life

    I always thought I had a blessed life - no health issues, never so much as a broken bone, never taken an antibiotic. The only time I had spent in hospital was for the birth if my daughter at the age of 39, dream pregnancy, no morning sickness, minimal weight gain, both grandmothers lived to 100. I was indestructible!

    then comes 2011, both my husband (melanoma) and father (lung cancer) died the same day, 15 days later I am diagnosed with RCC. How could a tumour of 20cm go undetected? I had no symptoms except, in hindsight, I was diagnosed with hypertension a few years prior. Tumour removed, no mets.

    Fast forward to March 2013 mets found in spine, thyroid and a couple of other places and more recently further mets to pancreas and spleen. Votrient failed now trying Afinitor.

    I think the hardest part of this illness is not having a support person (I try to make my daily life as normal as possible for the sake of my daughter) but have found my friends on this forum great comfort. At the end of the day, I still have to do housework, put meals on the table, teach my daughter to drive etc. Being a single parent with stage iv cancer sucks!

    I do ask "why me" but that usually passes very quickly.

    Even after 2 surgeries, trials of 3 drugs I have continued to feel healthy without any need for pain relief and everyone tells me I am the healthiest looking sick person they have seen. I was offered a referral to a psychologist when first diagnosed with mets and I did chat with her on one occasion but didnot find it helpful. I am now having further difficulty with feelings that my present treatment is not going to work. Wish I could be like you Fox! 

    Anyway, this journey continues to be a roller coaster ride of emotions and I guess will continue as such (hopefully for a long time). I just hope that there is some good news waiting for me.

    There's my rant this fine Sunday morning in sunny Sydney. It could be worse, I could be putting up with the extreme weather conditions being experienced in the northern hemisphere.

    Happy new year everyone!

     

  • brea588
    brea588 Member Posts: 240
    My Turn LOL

    Begin in April 2012 I had pneumonia and in hospital for 8 days.  2 weeks later my chest xray still showed pneumonia.  Lumg doc ordered ct scan of chest and they found a mass on adrenal gland and liver.  Was sent to my GI doc and MRI was done and 3 days later my doc calls and tells me there is nothing wrong with liver or adrenal gland but you have RCC.  I was driving down the road when he told me that.  I totally about lost it.  I am a RN and see people all the time with cancer and I never felt that I wouldnt get cancer, but just hoped I wouldnt.  I had to wrap my mind around this and I only told my  husband to start with and had to wait 2 days to tell anyone else.  It was like if I dont talk about it , its not there.  I was very emotional.  So I seen a local urologist who didnt see a solid mass tumor like the radiologist did and he wanted to wait he said 4 or 5 months and scan again.  I said OH NO  if I have cancer I want it out now.  No waiting game for me.  So I went for 2nd opinion to university hosp and urologist onc there had no problem seeing the tumor, and with my health issues did not want to wait and scan in months.  So I had that tumor removed 8/28/2012 partial neph with robot.  I did actually well after surgery , just the usual complaints you hear from most.  THe pain and swelling in abd.  So after all is said and done everyone thinks ok that is over and im like REALLLY!!!!!  I went to my family doc and said noone understands me,  I know the surgery is over and hopefully never to return but, I think about it all the time.  He has a son that had leukemia and is cured as of now but he said when they went to the hosp the onc told the family that it is like a big roaring lion has invaded your body and making you ill and after you get well or NED that  lion is still there only you do not have the cancer at this time.  He said so Sue,  I totally understand you.  That lion is still there making you scared and that is totally normal.  In time he want be such a mean beast.  I thanked him for making me feel like i was normal again.  THis past year in July I was diagnosed with colon ca  but all was gone when the polyps were removed.  Scope in year again  so thats coming in June.  Now for 5 months I have severe pain in right hip that PET scan lit up in iliac crest.  Had bone scan last week, MRI on jan 17th.  Should know something on 21st when i see bone cancer onc.  What I have learned from this forum is I can come here and vent, talk about it, and people understand.  I'm still FIGHTING cancer as a lot of you are.  I dont want to go to other forums for colon ca or bone ca, this is the first one I came too and I feel like I know you and you always comfort me.  Thank you so much, and I do come on here and try to help others and sometimes I just read the posts. 

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    Almost Three months and s@#T is still not in one sock.

    The intial reactions I had are familiar to all who have posted here.  When first diagnosed the PA said I had a cyst on my kidney....then the doctor came in and called it by its name, a tumor! I was surprised, but after having been a tobacco user for 30 years I was perhaps not really shocked.  Ironically, I had quit using smokeless tobacco 3 days before the onset of symptoms. My wife was more shocked than I was.  Collectively 2013 was a very rough year medically.  The kidney cancer beast may never again raise its ugly head....or next month my scan could show mets.   I will deal with whatever is thrown my way, but one thing is for sure I will never assume that I am immune.  I feel the bullseye on my chest! 

    I bought new running shoes today.  I bought them from a small mom and pop running store.  I asked about one of the local run organizers and the owner told me that this older gentlemans health had failed and that he was dying of cancer.  This brought up my condition in the discussion.  They were suprised that I was back to training less than three months from loosing my kidney. It seemed odd to me to be discussing this with such strangers, but the big C conjures up such imagery to those who have not experienced it.  It is both better and worse than who have not experienced it would imagine. 

    I dont know what the new year will bring.  I plan to take nothing for granted.  I will work, travel, and continue living life to the fullest.  Emotionally, I will attempt to get all my crap in one sock, and maintain the strain. What I know is that it can always be worse no matter how bad it gets.  So I will keep my whinning to a minimum and remember how blessed I am. Thanks to the members of this forum for sharing. 

  • foxhd
    foxhd Member Posts: 3,181 Member

    Almost Three months and s@#T is still not in one sock.

    The intial reactions I had are familiar to all who have posted here.  When first diagnosed the PA said I had a cyst on my kidney....then the doctor came in and called it by its name, a tumor! I was surprised, but after having been a tobacco user for 30 years I was perhaps not really shocked.  Ironically, I had quit using smokeless tobacco 3 days before the onset of symptoms. My wife was more shocked than I was.  Collectively 2013 was a very rough year medically.  The kidney cancer beast may never again raise its ugly head....or next month my scan could show mets.   I will deal with whatever is thrown my way, but one thing is for sure I will never assume that I am immune.  I feel the bullseye on my chest! 

    I bought new running shoes today.  I bought them from a small mom and pop running store.  I asked about one of the local run organizers and the owner told me that this older gentlemans health had failed and that he was dying of cancer.  This brought up my condition in the discussion.  They were suprised that I was back to training less than three months from loosing my kidney. It seemed odd to me to be discussing this with such strangers, but the big C conjures up such imagery to those who have not experienced it.  It is both better and worse than who have not experienced it would imagine. 

    I dont know what the new year will bring.  I plan to take nothing for granted.  I will work, travel, and continue living life to the fullest.  Emotionally, I will attempt to get all my crap in one sock, and maintain the strain. What I know is that it can always be worse no matter how bad it gets.  So I will keep my whinning to a minimum and remember how blessed I am. Thanks to the members of this forum for sharing. 

    Amazing

    It is totally awesome and amazing the stories that we have to endure. I don't think anyone thought of the impact we have experienced. I'll repeat myself for the thousandth time. I've had it easy compared to many. What a tough group of people. FLY. Fox loves you.

    I have no religeous orientation but I believe in Karma. Even though I'm not sure what that is either. I do know that what goes around ,comes around. And sharing has made us stronger. 2014 may have it's ups and downs but our spirit is unified. As a result we are able to face this disease with greater force and determination. We do this together folks. A victory for one is a victory for all.

  • I am alive
    I am alive Member Posts: 315
    Right on, Fox

    Laughing Three cheers for 2014!

  • GSRon
    GSRon Member Posts: 1,303 Member

    Right on, Fox

    Laughing Three cheers for 2014!

    Three beers to go with the

    Three beers to go with the cheers...

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    GSRon said:

    Three beers to go with the

    Three beers to go with the cheers...

    That's a very nice sentiment,

    That's a very nice sentiment, Fox!

    Hugs - and cheers!

    Jojo