Post nephrectomy blues

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 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

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.

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!

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 .

twinthings said:

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 .

 

 

 

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

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 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. 

 

 

 

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!

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. 

 Three cheers for 2014!

GSRon said:

Three beers to go with the

Three beers to go with the cheers...

That's a very nice sentiment, Fox!

Hugs - and cheers!

Jojo