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THE KIDNEY IS OUT

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

John went today to have the right kidney removed.  We knew they were going to be taking the kidney, nodes, and adrenal, but there was a question as to whether the liver or colon were affected.  We were told 4 hours good time for no complications, six hours if they had to resect any of the liver or colon.

Just over three hours in and he was done!  His liver and colon are clean, the doctor is confident she got everything out of there.  Originally, it was going to be a vertical incision, but the head dude in charge felt a 'hockey stick' would be better as they could lay open the flap and access everything all the way over to his right side. It was also easier that way since he'd been robbed and stabbed in 1995 and already had a scar in the same area that they were able to mostly cut along to not damage his muscles further.  The fact that she looked like the cat that ate the canary made me feel better.

He was out of bed, standing and sitting, in recovery, and drinking water. Also gave his pain a 5, even after moving himself out of the bed, standing, in a chair, then back in the bed.  Didn't want the pain meds offered until his dose time came again, participating in conversations I was having with the nurses.

So now the only thing left are the small mets in his lungs and a couple of larger ones in his aorta.  We're going to start the Sutent in four to six weeks, depending on his recovery from the surgery.

I hope everyone has a good night and a good tomorrow; I need to go decompress a bit before bed. Other than a nap, I've been up since 3:17 this morning.

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Cakelady,

 

He can do without that bum kidney. Now lets take care of the rest of the business as soon as the bowl games are over.

 

 

Icemantoo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

considered chronic diarrhea a bowl game. It stopped being fun at a roll of Charmin a day. Cakelady, it sounds like your husband is doing exceptional. Keep the faith.

icemantoo's picture
icemantoo
Posts: 3351
Joined: Jan 2010

Unlike fox I was thinking of a softer type of Cotton (bowl)  where Michigan State plays Alabama New Year's Eve. Go State.

 

 

Icemantoo

 

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Glad your hubby is doing better...and YOU too!

On to recovery now~

BTW: I used a lumbar wrap over my abdomen following several surgeries. It was okay'd be my surgeons too.

It helped hold in the healing, sore muscles esp when getting uP and moving about.

I would put dry ice packs  inside the wrap near the incisions to help with the swelling and it did!

I rarely needed opiates as the ice did the trick!

Keep us informed as to how he and you are doing anytime!

Healing hugs,  Jan

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

Now you two can concentrate on having a Happy New Year. I am so happy that John is doing so well following his surgery.Not needing the pain meds is awesome.  Now it is time for you to take a breather and get some well needed rest. You are going to have to take care of your Mr. for a while once he is discharged. Happy New Year to you guys and all of our kidney cancer friends.

Regards from a fellow New Orleanian!

 

Nancy

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

That sounds like a very successful surgery! So happy to hear this news!

Now on to recovery -and it sounds like your husband is well on his way. Don't forget to take care of yourself too! You are doing great!!

Hugs

Jojo

jason.2835
Posts: 337
Joined: Nov 2014

Cakelady,

I chuckled a little at your headline "THE KIDNEY IS OUT" because I know exactly what that feels like.  GET IT OUT!!!  NOW!!!  (I say that in an Arnold Schwarzenegger voice, for some reason).

- Jay

JenRen
Posts: 2
Joined: Oct 2014

I just read your post an remembered when I saw my surgeon for the first time. He confirmed the biopsy results (RCC) and asked what questions I had. I asked him what course of action he would recommend. There was only one "get it out"! We did :)

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Bowl games, TP, and AHNOOOOLD.  Yes, it will be a good new year.  We won't be partying with friends of ours like every year, but I'll take it.

 

He's doing exceptionally well, according to the nurses. and the attending.  He was up walking the ward when I got there today, ate a little food, drank a lot of water, had all of the wires and bells and whistles removed.  No bleeding or swelling, no uncontrolled pain, so they're talking about letting him come home tomorrow.

I slept like a brick last night, and even though he woke me up early and it was only about five hours, it was solid, coma-sleep, so I'm good.

He also talked to the head of something, maybe surgery, about the first doctor.  That dude is reeeeeally in his craw.  Turns out he's some low-level noob who actually quotes from 'the book', whatever book that is. He was told that clinically, the information the guy gave him was correct... for a 70-year old man.  WTF?  I have words.  So many words.

mrou50
Posts: 389
Joined: Mar 2013

 I am glad the surgery went well, hopefully the recovery goes fast and he is up and around real soon. Remember to take care of the remaining kidney and he will be just fine.

 

Mark

skathleen's picture
skathleen
Posts: 9
Joined: Nov 2015

Cakelady, I couldn't be happier for the two of you.  The advice that Jan gave about the lumbar wrap is priceless.  When I was having problems returning to work and sitting, she made that suggestion.  I wish I had used it sooner because it makes a HUGE difference.

Be patient with both your husband and yourself during the recovery.  I was all gung ho when I got home but found out that my body had different plans.  Recovery was slow and where many people mention six weeks being a turnaround point, mine was at seven.  I'm sure the stress of returning back to work after four weeks and getting ready for my children coming home for Christmas did not help.

Reading your good news has made my day right.  Please keep us updated on how both of you are doing.

Kathy

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Everything sound very positive and your husband seems to be doing a great recovery!  Happy New Year and may the good news continue!

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

It was so bittersweet today when I heard him tell a lifelong friend on the phone that he finally feels like he has hope, because he should never have been put in a position to feel like he had none before.  He's still digesting everything because later in the day, he said he hopes all of this is not for nothing, but it was so great to hear him say earlier about having hope.  I think he finally has the first doctor out of his system enough to move past what he was told.

He's doing much better today.  We called his doc yesterday because the pain in his back has been pretty bad.  Turns out the tumor had not intruded into his muscle but it was adhered to its membrane, so after they removed it, they did some clean-up work by way of scraping.  So I guess it's like having a brush-burn inside, and we all know how miserable the little things are- like papercuts are the worst!

I truly and wholeheartedly hope you all get good news and scans and visits from uncle NED in 2016.  May we all live to the fullest and take every bit of life and squeeze it for all it's worth.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

OMGosh, your last post brought tears to my eyes~ Glad he has some hope and healing to look forward to~

But that muscle issue sound horrible. Does icing it even reach that area?

I will pray for his relief and continued HOPE!

I thank God you are in his life my dear!!

Healing hugs,  Jan

cheatinlil's picture
cheatinlil
Posts: 202
Joined: Jun 2014

God bless you cakelady,

From one caregiver to another: cheers to NED 2016! Hugs :)

Pandabear1011
Posts: 123
Joined: Jun 2014

I know y'all are so happy to have that kidney out! I remember that feeling. It sounds like your Hubby is a trooper. Sending good healing vibes y'alls way. Hugs from Panda in Texas

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

We just got off the phone with the surgeon.  She got the path back, confirming it's clear cell but she said it has sarcomoid features and that it's aggressive, so I don't know how that changes anything.  Does it mean it's just more aggressive?  She said we're still planning on the same treatment plan, but did acknowledge that she wants a biopsy of his lungs because the adrenal and lymph nodes taken during surgery were not affected.

She said the lungs are the first place rcc likes to go, so she feels it's still rcc there but wants the biopsy to be sure.

Any input?

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Just want to offer you and your hubby HUGS and Healing vibes!

I cannot tell you several folks I know who got bad news intially

are still here, improving all the time..don't let this bring you down.

We're here for you along the way....HUGS, more HUGS,

Warmly, Jan

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

A little down, not out.  

I told him it's not in his brain, bones, didn't show in the nodes, adrenal, liver, vena cava... so, we get a biopsy and make 100% sure it's rcc in his lungs.  He painted cars for a lot of years, not always wearing the proper equipment.  We all feel so invincible until we don't.  He's not giving up, neither am I.  He's a project now, LOL!

If it is that in his lungs, we fight.  And we research and we fight and we come here and read success stories and lean on each other and we fight some more. Laying down and dying just isn't an option.  None of us get out of this life alive, but no sense giving up the time you are given.

Pandabear1011
Posts: 123
Joined: Jun 2014

Hi, Cakelady...Yes. Sarcomatoid features are considered aggressive on top of whatever grade his tumor was(Grade 1-4). You might consider joining SmartPatients(if you haven't already). They are very knowledgeable over there and might be of some help to you. .....Panda

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Cakelady I love your attitude. With that you're bound to beat this thing right into the ground!

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Sarcomitoid features is more agressive.  I have a sarcomitoid.  You need to get to MD Anderson, particularly if the things in the lungs are mets.

I had Sarcomitoid with a SOLITARY met to the lung.  That was removed.  I have been lucky in that I am three years NED.  

Sarcomitoid tumors will not respond well to many first line treatments, including IL2.  It seems to respond to the new drug, Opdivo.  They also respond to traditional chemo better than normal RCC tumors.

You need to go to an oncologist that has seen this before.  Make an appointment with MDAnderson.  Today.  I am being seen at Hopkins in Baltimore, mostly because of proximity to my house (60 miles).

But, the most promissing treatment, if it is an option is to cut the tumors out.  That will depend on how widespread it is.  If they are all over the lungs, that will not be an option.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Removal is not an option.  Small but widespread. Our 'team leader' is an MD Anderson guy,  so we have that. We go for a test and staples out on the 19th,  biopsy of lungs soon after,  then we wait for results to proceed. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

I am so sorry to hear this news. But the good news is that your hubby is in good hands and that sarcartamoid responds well to Optivo.

I believe from the bottom of my heart that you and your husband will sail through this. You have each other for support, and from what you have posted here, you two will be a force to be reckoned with!! Laughing

Hugs

Jojo

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Will the mets be sarcomatoid because the main tumor was? Nothing else around it was affected,  nodes all clean,  adrenal,  liver,  colon. 

dhs1963's picture
dhs1963
Posts: 513
Joined: May 2012

Did they say the percentage of sarcomitoid features?  That is important too.  I have been investigating this, I have three reasons for you to be optmistic:  1) treatments are improving, 2) Some people have survived (me, for example), and 3) pessimism sucks.  

The thing you need to remember is every day you wake up is a gift.  I know it sounds corny, but if you can embed that into your mindset, it really can help.  I like to think of me being on Bonus time.  (In addition to the sarc. RCC, I have Cornary Artery Disease; I am only 52).

Good Luck.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

That's my next question for her.  The reports, etc., all get uploaded to his patient file, so we can see them as they are entered into the system.  If I don't see them in a couple of days, I'll be texting her.  I figure no sense in wigging out at the moment because we can't do anything until next week when he goes in for the staple removal and some test. The biopsy of his lungs should be soon after; I kknow they want to get that done so they can get the results back in time to start whatever treatment at the six week surgery recovery mark.

To be honest, not much about life has changed in the last couple of months.  We still did the holidays, house maintenance, work, arguing, blah, blah.  He's up and about from the surgery and wants to go back to work next week, even just on short runs. His doctor is very pleasantly surprise at how well he's doing, off the pain pills, mobile, no gastric issues, eating well, all that stuff.  All he has is a longer scar than what he had before, and I've been busier because I've been having to do all the work, cooking, cleaning, etc.  I read every label, know way more big words than I knew three months ago, and can make perfect ghee, without burning it, every time.

He gets upset at times, focusing on a limit he feel he has on his days.  He laments not growing old, watching grandkids grow up (we have none as of now), and dying in his bed at 80 like he always thought he would. It's always short-lived, and I always just kind of blow if off, partially because I'm not the over-emotional type, it wouldn't do him any good for me to be upset, and because I really don't think he'll be dead any time soon.  I tell him we're all dying every day, that every morning we wake up is a win, even without cancer.  I drive 40-50k a year; I'm not a scary driver, frantic, freaked out, or defensive.  I don't see every short brake as "OMG I ALMOST GOT KILLED!!!!", but I literally did almost get killed by a fully-loaded dump truck about two years ago.  When you can reach out and touch 20 tons coming at you at about 45mph, yeah, you can say you almost died.  I remind him of that.  I remind him of our friend who died at 19, another who died at 18, another at 38, another at 46 just months ago by suicide.

Cancer may be what kills him, but I won't let it be what he dies from.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

We are living with cancer.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

He's still digesting, is all.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Went back to work today. Like nothing is wrong with him. I hope this is a sign of how things will be. He ggoes tomorrow to have the staples out. His Dr. wants a test done,  a visit with another doc,  and I guess we find out about the lung biopsy. 

JenRen
Posts: 2
Joined: Oct 2014

I just returned to this site after a gap of 10 months. Saw your posts. Sending you both my love and prayers, I will check back often to see updates. 

Jeni 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Just waiting for the lung biopsy results.  It's only been six business days, not counting the day of, but it seems like forever.  No changes, he's back to work full-time with no complaints of anything other than a twinge now and then at his back.

The Keto is really agreeing with him, other than a few things he really misses but just does without.  I have him on maintenance macros because I worry about him losing too much weight on the Sutent.  Just hedging my bets.

It's strange because life seems so normal.  It's almost scary, like the other shoe is going to drop, even though there's not much left in there at this point even if the lung spots come back as sRCC.  I guess we just move to taking Sutent and hopefully minimal side effects and scans in April.

I hope all is well with you and you and YOU!

 

Bonnie

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Waiting can be rather difficult. But if it is available in Medical records, you CAN pick up your own copy

and know ahead of time. Do you want to know ahead of your doctor appointment?

Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

and dont forget the moist toilet paper. Thank me later

Tim Wisneski's picture
Tim Wisneski
Posts: 17
Joined: Jan 2016

Wish you guys the best, sounds like things are gooing great!

Im waiting to go in for much the same operation, the waiting to get it done drives ya crazy! 

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

So it came back as the same rcc as what was in the kidney.  I guess it's good because we have a head-start on knowing what it was, and already have a treatment plan in place for that.  I guess it's bad because we were hoping it would be just some crap in his lungs since it was almost too small to biopsy at all.

Found out the original was 10% sarcomatoid, so while it's not good that it was at all, it was a low percentage.

Waiting on a call from the Onc so we can start treatment, then a scan at the end of March to see how it's working for him.

He still feels fine, still confident we can at least maintain it as is and have good quality of life.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Well it is good that the results show RCC. Now the plan can be set in place for meds and monitoring. He seems to be doing very well through it all! Great attitude and great support and care from you!

Hugs

Jojo

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Well, it is good to know what you are fighting.

He is so lucky to have YOU and YOU have us!!

Keep us informed. We're here for you both!

Hugs, Jan

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

Gonna make it work!

I'll keep y'all in our little loop.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

If it has to be a fight, at least it's a known quantity. And rcc is certainly not the death sentence it used to be, so we're going to be okay.

Got his appointment today to start- 2/23, which was the earliest the onc could get him in. He even called and acknowledged that it's further out than we all want but there's a huge backlog, so it seems everyone is being proactive.  Since there was no change in his scans from November until the CT for the biopsy, he doesn't seem too concerned about an additional two weeks.

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

No side effects from the Sutent.  He had one day, about three days in, where his urine was neon green but then never again.  He also had one very slight bit of dizziness in the shower- I think it was from a hot shower and him sitting on the seat in there, then standing up.

It's almost like this isn't even happening; I don't know what to think.  I'm grateful beyond words and thoughts that life is going on and he feels good and this isn't affecting us except in such a minimal way.

But I keep waiting for the other shoe to drop.

Tomorrow is another day.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

This is wonderful news! Thank you for sharing....and hoping the other shoe never drops!

Hugs

Jojo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

footsie would suggest that you wear lighter shoes. Maybe barefoot. Nip that sucka in the bud.

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