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Post nephrectomy blues

foxhd's picture
foxhd
Posts: 2030
Joined: Oct 2011

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).........

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

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's picture
GSRon
Posts: 1306
Joined: Jan 2013

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's picture
NewDay
Posts: 182
Joined: May 2012

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
Posts: 20
Joined: Jun 2013

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
Posts: 219
Joined: Dec 2013

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's picture
tonib
Posts: 33
Joined: Nov 2013

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's picture
Stros2013
Posts: 31
Joined: Aug 2012

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.

rae_rae's picture
rae_rae
Posts: 273
Joined: Oct 2010

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. 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

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.

 

 

 

Jojo61's picture
Jojo61
Posts: 450
Joined: Oct 2013

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's picture
dhs1963
Posts: 381
Joined: May 2012

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's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

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's picture
Djinnie
Posts: 866
Joined: Apr 2013

 

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's picture
Suekub
Posts: 129
Joined: Apr 2013

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
Posts: 119
Joined: Jul 2012

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's picture
Skagway Jack
Posts: 85
Joined: Oct 2013

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's picture
foxhd
Posts: 2030
Joined: Oct 2011

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
Posts: 229
Joined: Jul 2012

Laughing Three cheers for 2014!

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Three beers to go with the cheers...

Jojo61's picture
Jojo61
Posts: 450
Joined: Oct 2013

That's a very nice sentiment, Fox!

Hugs - and cheers!

Jojo

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Fox, you make me feel all warm and fuzzy inside.  This is a pretty cool place to hang out!

Cheers!

dme59's picture
dme59
Posts: 61
Joined: May 2013

I too am someone who is more interested in reading the stories rather than writing them. I did find a great sense of relief after finding this site and communicating with members of this board. It was a similar journey for me. In March of this year I went in for an ultrasound because I had a urinary tract infection, which my doctor told me was uncommon for a man. The scan showed a growth on my right kidney. The urologist ordered a CT scan to get a better view of what we were dealing with and then a biopsy. The biopsy revealed that I had RCC on the right kidney. The doctors at this point were confident that surgery would cure the cancer. Surgery was scheduled for June 5. Everything went fine and I went home on the third day. I dealt with the gas in the abdomen for a couple days and the sore stomach muscles from the surgery that made it a challenge getting out of bed so I slept in a recliner for a week. Two week post op visit the surgeon said the path report was good, confirming what they had been telling me all along. Through all this I did have the roller coaster of thoughts going through my head. After about a month or so I went to my family doctor because I was feeling down but didn't understand why. I was given an anti depressant which once I was on them a few days I did feel a whole lot better. Today I am able to talk freely about it with family, friends and even some of my co workers. Dec.11 I had my first follow up scans and x rays. This past Monday I went to the urologist who told me the scans and tests came back all clear. He said I was lucky my cancer was found early. For the past month I have been getting by great without the use of anti depressants. I think (hopefully) having made it through the first follow up with good news will make the rest of them easier to deal with. In closing, while I might not be big on writing posts I will be hanging around and if I see someone in a situation like mine will gladly offer what I can to help.

Thanks to all who gave me help dealing with RCC.

Take care and best of luck to all of you.

-Dan

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

RCC is gradually becoming part of my life over the years. I schedule my scans routinely twice a year. Yes, I think of it all the time, then I think of something else, it is like everything else, nothing else.

Jon

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

In January of 2011 I noticed blood in my urine . That will get your attention ! I had been experiencing some pain in my lower back for some time , but had not thought much about it since I've always worked hard and I figured it was just muscle pain .

I immediately made an appointment with my family doctor and about a week later I was in her office . I described my symptoms , including the lower back pain and she assured me that I most likely had a bladder infection . I was tested for an infection and several days later was informed by the nurse that I did not have one. My response to this news was a rather forcefully expressed " Oh CRAP !!!" She could not understand why I was not happy that I didn't have a bladder infection . I had to bring to her attention that the lack of a bladder infection just meant I had something else and it was probably gonna be worse than a bladder infection .

Back to the doctor . She said kidney stone . She was 99% positive . I was vastly relieved . I knew kidney stones are not fun but I was pretty sure passing a kidney stone would be  a lot more hilarious than the other thoughts which were running around in the back of my mind. She sent me home with pain meds and a screen to pee through to catch the stone . Sort of like panning for gold . No 49'er ever looked harder for a gold nugget than I looked for that kidney stone . Every time I felt the urge I would say a little prayer . " Please God , let it be the stone this time ." I wanted a kidney stone more than any little kid ever wanted a new bike .

Four weeks later and still no stone . The back pain was getting worse . There was still blood in my pee and occasionaly some little chunks of something I couldn't identify beyond the fact that they looked disgusting . But none of them looked like a stone . I called the doctor .

This time she sent me to a Urologist which is where I should have gone in the first place . Well , we live and learn . Sometimes the hard way .

The Urologist sent me to have a ct scan . That was on a Friday . His office called the following Monday .The voice of the girl on the phone sounded kind of nervous. " I'm sorry I have to tell you this on the phone but you have a large mass on your left kidney with lymph node involvement ." All I had wanted was a kidney stone . Instead I got hit with a boulder .

The Urologist had me meeting with a surgeon at Cleveland Clinic two days later . Two weeks after that my left kidney was history . A few weeks later I was back at the Clinic meeting with another  doctor who kindly explained to me just how bad my situation was . I felt pretty much like the guys in the Alamo must have felt like when Col. Travis drew the line in the sand . I could fight but my chances were not good . There was never any doubt that I would fight . Even a mouse will fight when it's backed into a corner . Also , if i didn't fight this for all I was worth, my wife would kick me through the window. I was so informed . " Yes dear "

I went on Sutent for six months with no good result . I had two tumors , one in my abdomin and one in my left lung and they were getting bigger all the time . Especially the one in my abdomin which seemed to be extra healthy . And extra painful . I ate oxycontin and oxycodone like they were candy .

After my time on Sutent I was given the chance to enter a trial of Nivolumab . I went for it and it was the second best thing I've ever done . The first best thing was marrying my wife . Ask her about it . I tell her all the time . And I mean it . Without her I wouldn't be here waisting your time .

Two months after starting Nivolumab all signs of cancer were completely gone .  So far all my scans have come back clear .

I will be getting another scan next week . I'll let you all know how it turns out .

todd121
Posts: 640
Joined: Dec 2012

I had such a similar starting experience to yours. My first blood in the urine occured the night of my birthday in December of 2011. I had been out with friends and drank heavily (it was my 50th birthday, after all!). It was like 3-4am and I was drunk and sick (I hadn't gotten sick from drinking in many years) and when I peed it was red. Wow! I wondered what that could be. The red velvet martini? The korean soju? The mixture of all the crap I drank that night?

The next morning it was gone and I was peeing normally. I mentioned it to my uncle and he didn't know what it could. I made an appointment with my primary care doctor about 1 week later, but he was busy so I saw the PA. The PA did a urine test, and said my urine was normal. No blood. Nobody knew what could cause that and it had gone away. It didn't happen again until just before I left for a business trip 11 months later in November 2012. First the urine was just kind pink/brown, but then it turned like Koolaid.

I went to an urgent care in Santa Clara, Ca where I was on business. I had no other symptoms. She was thinking UTI also, but I had no fever or elevated white count, so that didn't make sense. She was thinking STD then and started really kind of grilling me (I think the gay thing played a part in her attitude there, you know how we are....) Anyways, she put me on an antibiotic and sent me home. The next day I got really awful pain in my side. Both me and my uncle were thinking kidney stones at that point. I'd had them before, and it felt the same. It got so bad I couldn't drive and I had to have someone drive me to the ER. That's when the ER doc ordered the CT "just in case". I'm so glad he didn't listen to my diagnosis, because while I was in the ER, I passed a couple of blood clots (that's what was hurting) and then the bleeding stopped and again I never had bleeding again after that. The CT showed a 7 cm mass in my right kidney.

You know I'm really curious when I had kidney stones a few years ago, if that mass was there back then and it was missed. I'd like to pull a copy of the report and see. Ah, what good would it do.

I can really relate to your experience with the docs thinking UTI, then kidney stones and the passing of clots, etc.

Since this is a rare thing, doctors don't think about it. They operate on what's the most likely thing. However, they are supposed to not stop investigating until they find a root cause. My bleeding back in December of 2011 should have been investigated by a urologist, but nobody thought to send me there because the bleeding was gone and they didn't seem to know blood like that could come and go. Now I know it can.

Glad everything has cleared up for you and I sure hope it stays that way.

Todd

todd121
Posts: 640
Joined: Dec 2012

I'm glad you asked.

The cancer has really brought my life into focus, and not necessarily in a good way for me. I was just turning 51 when I was diagnosed, and my health was the last thing on my mind, because I had no health problems at all. I'd been having a hard time in other areas of my life though. 5 years ago my wife and I divorced. I had come out as gay 10 years ago (after 22 year of marriage), and we had tried to stay married. It would be funny if it wasn't so sad. We are still good friends, but live a distance away from one another. Of course, I can't depend on her as I could before and vise versa.

When my cancer was diagnosed in November of 2012, I was living alone in my own house near my work. My extended family lives in another state. My oldest son is married and lives an hour away. My younger son lives with his mom also an hour away. I had been in a relationship with a younger man for 3 years who depended on me heavily to help support him financially (he's an immigrant with no education, working for minimum wage), so that was my life situation when I was diagnosed. Not in a good position with regards to emotional or even mechanical support. My sons were quite supportive when I got diagnosed. The older one (30) and his wife spent the night at the hospital with me. The younger son (27) visited me while I was home recuperating and shopped for me. The boyfriend left the country for 6 weeks to visit family (I still don't get that...), but him being gone actually helped. He means well, but he's got a family that needs his support and has his own serious issues.

Not having friends or family close by has really become a problem for me. People at my work were great, but I've always held them at arms length because I'm not out as gay at work. My boss is a very religious Mormon man and I've always been nervous about sharing that part of my life at work for fear of losing my job. I'm very unhappy in my job. I already was bored to death before this happened. However, the cancer has made me scared to change jobs. I've been here 10 years, and I'm in a great spot financially and my boss and co-workers appreciate my contribution, but technically I'm not being challenged. I'm afraid I'll start a new job, and it will come back. Before the cancer, I had been planning to quit my job and move to China and study Chinese and teach English (a lifelong dream of mine), but now I'm so worried to that I'll have it come back and not have health insurance or not be near good health care, that I can't get myself to go through with my original plan (plus I think I haven't saved enough money, especially given my health situation).

I did start seeing a counselor last year because of the fear, anxiety and depression. Recently I stopped seeing her. I don't think she could relate to the cancer and started feelingl like she liked me coming every week just to get her $75 or whatever it was. In fact, I find that only people that have had cancer really seem to be able to relate. My family doesn't understand me. They think I've become a hypochondriac (and maybe I have). I've heard I'm too needy (through the grapevine from my younger son, who isn't talking to me for the past 6 months). I've had some scares this past year, and they all turned out not to be cancer, but I really thought they might be. I think even my oncologist doesn't trust my reports any more when I go to him with an issue, because I've cried wolf 3-4 times now. At first he investigated quickly and thoroughly. Now he seems to blow me off. I don't know that I blame him.

Since I'm "cured", the family and 1-2 close friends all seems to think I should get over it and move on. But I can't. I have a high chance of recurrence (I was Stage 3a, Grade 3, and have been told by 2 RCC experts that the chances are near 50% that I'll get mets at some time in my life) and I'm very aware of it. Even my primary care doctor doesn't get it. He recently said to me at a checkup "when you hit the 5 year mark you'll be able to move on".  I thought "you really don't know much about kidney cancer", but I didn't say it. Ignorance of kidney cancer is one of the things I battle constantly. But I find most people really aren't interested in hearing about it. When I start to explain, I see the look in their faces. They don't really want to know the details about something that has nothing to do with them...

What do I do? I meditate. Sometimes. Haha. I wish I did more regularly. I'm trying to eat better and exercise more. I've been trying to lose weight, with little luck. It's very discouraging that a cancer diagnosis can't even get me to lose weight. 

I pray sometimes, even though I don't really believe in it. Lol. I listen to Gerald White's guided meditation CD. I get more sleep than I used to. I'm trying to take better care of myself. I drag my ass to the support groups twice a month. I pop in here and read a little and try and respond. I so appreciate reading what is going on with all of you. I often don't feel like posting. When you post good news, I'm happy to hear about it, but I often can't get myself to post a 47th "great news and I'm glad" response, but I do celebrate with you. And when it's bad news, I feel sad and wish it was better, even though I might not post that for the same reason (that there are already so many others saying what I would have said, and not wanting to add another "me too" post). Sometimes I don't post because I just don't know what to say (literally, I don't know technically about the issue, or I'm just at a loss to find words that would be helpful).

Sometimes I think how often I'm reading here is an indication of how unhealthy my mind is....

I've made a local friend from one of the support groups who also has RCC. He's very different than me, in that he knows almost nothing about RCC. I asked about his pathology report, and he told me he doesn't know what it says. He didn't want to know. He just lets his doctor take care of it. In some ways I admire that approach. He and I have lunch every few weeks. We seem to "get" each other. It helps.

I care about you guys and what happens to you. I wasn't around when the news of Texas passing was posted/discussed. I learned of it only a few weeks later. I have to say I cried over the next couple of days as if I had lost a close friend. I find that rather weird, but it is what it is. I really felt I had gotten to know him, and I hated to hear about the suffering that he and others here endure. This disease just sucks and I'm sorry we all have it/had it. Whatever. You know what I mean.

Thanks for posting this question and so many others. I appreciate it. And thanks to the others that posted on this topic. And sorry for rambling...I feel like I actually wrote too much this time.

Todd

donna_lee's picture
donna_lee
Posts: 429
Joined: Feb 2009

Before I digress, you guys have a distinct advantage in being able to observe the coloful rainbow you expel...and if you miss the bowl, you spouse will darn well tell you something is wrong with what she cleaned up off the floor.

In my case, a yearly exam with uninalysis, showed hematuria.  But I wasn't told about it until the PC called me in after an ultrasound for possible gall stones, and said I also had a mass in my right kidney and one or two in the left side of my liver.  You can read the details on my "home page".  Seven and a half years later, two recurences, and lots ot tests, and much sould searching, I've begun adjusting to what it's like, not always easily.

First, I think your age at the time of diagnosis has a lot to do with how you sort things or prioritized your life.  I know my reaction would have been different at 20 or 50. At 63, my kids were on their own; my husband and I had been together for years and had a successful business; but I was not ready to give up.  As I whispered to my granddaughter born 6 weeks after "the surgery, " I want to be around for your wedding, and you can't get married until you're 50". (Exageration!!)  

In the first couple of years, I was afraid to plan anything beyond the next test.  The longer I survived, the easier it became to plan for furture activities.  So let me share what we did from Dec. 26th to Jan 4th.  With a 50th Anniversary coming up this summer, we wanted to have the kids and grands all together with us.  Our location on the west coast, logistics, kids school schedules, warmer weather, etc. pulled us all together in a beach house in San Diego for the time. Of course we wore ourselves out walking...SD Wild Animal Park, Zoo, Sea World, shopping at Saturday Mkt., shopping in Julian, shopping at an outlet mall, eating-eating-and did I say eating.  We relaxed in the sun, watched dolphin swim past, and individually or collectively spent time visiting and playing.  Some of the greatest joy was from watching the grandkids interact and for our daughter and D-I-L getting time to visit after young ones went to bed.  And remember that new baby from 2006?  She whipped my butt playing Uno and we all laughed about it.

This becomes part of the new normal.  Trying to live the life you would have lived anyway, at 100%, while you are in that moment.  It doesn't mean I'm not anxious a bit about the lab tests (CBC was OK; don't have the CMP, yet) and whether I'll be allowed to have a CT next week or if it will be skipped, again.

And Fox, you have a way of making us dig deep and share the things that make this board important.  The physical side of cancer seems small when you look at the emotional toll and terror it creates.  I think I've come out the other side a better person.  More tolerant of most things, but not willing waste my valuable time on frivolous fools who waste my time.

Let's hope 2014 brings Good Wished to all.

Donna

dhs1963's picture
dhs1963
Posts: 381
Joined: May 2012

Donna,

Thank you for writing that.  The aspect of planning has been hard for me personally and professionally.  I am younger than many people on the board, with the RCC diagnosis at 48; I recently turned 50.  I am not retired, and can not retire yet.  I have a 11 yo daughter that requires support -- both financial and emotional.  I need to make sure she has the money to go through college....I have to pay for a Bat Mitzvah in about 15 months.  And yet, I am scared to think more that three months into the future at any given time.  At the moment, my horizon is one week....though I scheduled a meeting for after my scans....that is optimism, I guess. 

About this time, two years ago, I was planning a glorious vacation....a month long road trip driving from DC to the Rockies....We were going to leave on June 19th, after school let out.  On May 1, 2012, my primary concern should have been Bryce Harper's home debut with the Nationals (Nats).  Instead, on that day, they told me of the mass on the kidney.  Priorities shifted.  But, my Dr (urologist) told me that, after the surgery I will be "cured".  Stage 1 RCC is cured by removing the tumor.  You do follow up scans, but those are a formality.  On the 19th of June, instead of leaving on the road trip, I had a kidney removed.  I had planned to miss 3 weeks of work.  The Dr. said I would be 100% by 6 weeks, so we booked a trip to Oregon for late August.  But, nothing went smothly, including the wound getting infected and opening at 4 weeks.  I felt worse at six weeks than I did at two weeks. I returned to work in Mid August.  I could not move, and ended up cancling the trip (and eating the plane tickets). 

But, at least I did not have cancer.  I had my 6 month scans...they were done at NIH, as I was participating in a study on familial kidney cancer (my father and his father had it).  I was sure that the scans would show nothing.  I had the next several months planned, I was really feeling good...90+% recovered.  Then at about 1:00 PM on Dec 19, six months to the hour of the nephrectomy, they told me that everything is not good...there is a mass in my lung, which was removed 6 weeks later (after confirming it was cancer).  My plans for the future were on hold.

After than, I would plan only to the next scans.  I am now one year out, and plan only to the next scans.  So, I know what I am doing until Thurs.  And I do have a meeting early the week of the 20th. 

I am not comfortable planning further.  Professionally, this has been a problem...I am now planning work a little further.

todd121
Posts: 640
Joined: Dec 2012

I've read all these shares, and I'm humbled to be among you all. I couldn't respond individually. Words were lacking.

Thanks for posting your experiences.

Todd

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