new here, feeling down,

jona187

How is everyone?

Situation:

May 25th: took my pregnant wife to er room due to extreme back pain and vommiting. Spent 3 days in the hospital trying to find out what's going on, due to the baby, they couldn't do certain tests. Sonogram picks up renal mass.


May 28th: Induced Labor for three days, which started March 30th, my first son was born on April 1st:

They gave my wife a few days of rest and perform CT SCAN with contrast and Chest XRays, etc..

April 8th: Radical Nephroctamy is performed to removed right kidney.

She was diagnosed with an 8 cm Chromophobe Stage II Cancer localized within the Kidney Capsule and encased in membrane

May 19th: Today is her 29th bday and I'm feeling so sad thinking the worse in every way possible eventhough I'm trying to be positive. Sometimes it creeps up on me and today it hit me. Took a long hour NYC 4 train ride home in tears....

I just needed a place to vent

My wife is a trooper, but my mind is making this worse for me emotionally

How does everyone else cope with this

connieprice1

Just do the best you can
Jona, Congrats on the baby boy. I too am a caregiver and I have broke down many times over the past six months. I realize that it is not fair that your wife has to go through so much when she is pregnant and I understand your need to vent. I have met and seen so many people that are fighting for their lives with cancer and are on their 2nd or 3rd bout with this disease. Hopefully your wife's cancer has not spread anywhere else and removing her kidney has also removed her cancer. Cancer has many ups and downs and sometimes its like being on a roller coaster that never stops. Just try to stay strong for your wife & baby as they will need your strength over the coming months if she should be receiving chemo or radiation treatments. Hang tough and try to take everything one day at a time. I will say a prayer for your family, Homer & Connie

Barbara53

tough times
These are tough times, but I'm so glad you and your wife have that beautiful baby!

I'm a researcher by trade, and just took at look at your wife's diagnosis. It's a rare one, for sure, but "more treatable that other renal cell carcinomas" with high 10-year survival rates following surgery at stage II. Take heart. There is light at the end of the tunnel. You can beat this thing.

jona187

Barbara53 said:

tough times
These are tough times, but I'm so glad you and your wife have that beautiful baby!

I'm a researcher by trade, and just took at look at your wife's diagnosis. It's a rare one, for sure, but "more treatable that other renal cell carcinomas" with high 10-year survival rates following surgery at stage II. Take heart. There is light at the end of the tunnel. You can beat this thing.

I really appreciate you guys
I really appreciate you guys writing back

Yesterday night was such a tough night for us and just you guys replying back helps


We are going to beat this thing....It's more of an emotional shock and has taken me by surprise eventhough I didn't get diagnosed.

I don't know what to say but thank you for writing back.

yv1214

jona187 said:

I really appreciate you guys
I really appreciate you guys writing back

Yesterday night was such a tough night for us and just you guys replying back helps


We are going to beat this thing....It's more of an emotional shock and has taken me by surprise eventhough I didn't get diagnosed.

I don't know what to say but thank you for writing back.

These are tough times...
But first off congrats on the birth of your baby. I know this is a hard thing to deal with, but like you said your wife is a trooper plus you have a great attitude so you're going to kick butt. We are here if you need more emotional support. I tend to be online mainly when I am at work because once I am home I get sucked in to caregiver duty.

Yessy

mswijiknyc

focus
I had numerous bad days when I let the boogeyman get the better of me. It all boils down to focus.

You have a beautiful baby boy who no doubt is your sunshine. As an eternal optimist, I can almost always find the good in any situation, and that right there is it. Enjoy the good as best you can. It's good to let the bad stuff out too (train rides are good for that), but try your very best to keep your focus on the positive.

Hugs and Loves,
April

coping in CA

Yes, everyone has amazing
Yes, everyone has amazing things to say for suppport. The baby will be your strength. I have a 3 year old with some medical issues and my wife was diagnosed with lung cancer 2 years ago. Good for you for finding this site, vent away. It has helped me immensely. Make sure you take care of yourself the best you can, ask for help when you need it and take Vitamin D and Omega-3. Someone gave me this advice and I really feel a difference when I forget to take it, especially on gloomy days in NYC.

Thoughts and prayers are with you. All the best and congrats!!!!

Shari

KateNTx

Jona, I have no words of
Jona, I have no words of wisdom on how to cope. I wish to God I did. Your son is beautiful, and my prayers are that his Mama will be with the two of you and well again soon. It sounds like you are on a serious roller coaster ride of emotion right now, and I know how hard it is to hang on.
I don't know what your situation is, but I will suggest that you consider any new parent as well as caregiver support groups in your area. Either change on it's own is a huge shock...both at once must be emotionally overwhelming. Know that my prayers are with you and your family.
Kate

jona187

KateNTx said:

Jona, I have no words of
Jona, I have no words of wisdom on how to cope. I wish to God I did. Your son is beautiful, and my prayers are that his Mama will be with the two of you and well again soon. It sounds like you are on a serious roller coaster ride of emotion right now, and I know how hard it is to hang on.
I don't know what your situation is, but I will suggest that you consider any new parent as well as caregiver support groups in your area. Either change on it's own is a huge shock...both at once must be emotionally overwhelming. Know that my prayers are with you and your family.
Kate

omg I really appreciate you
omg I really appreciate you guys writing back

it's pretty overwhelming, but its great to know that I can vent here and get some many great responses.

I really do hope we get over this and continue as a family.

I really really appreciate everyone writing and I'm so grateful to have found this site.

THANK YOU SO MUCH FOR THE WORDS OF ENCOURAGEMENT!!!!

micgrace

jona187 said:

omg I really appreciate you
omg I really appreciate you guys writing back

it's pretty overwhelming, but its great to know that I can vent here and get some many great responses.

I really do hope we get over this and continue as a family.

I really really appreciate everyone writing and I'm so grateful to have found this site.

THANK YOU SO MUCH FOR THE WORDS OF ENCOURAGEMENT!!!!

support/encouragement
It is really difficult when the love of your life has a dx. I am going through the same at the moment and its very difficult with my previously comfortable world thrown upside down. You are very definitely not alone. I have met some wonderful people already trough my wifes dreadful disease which threatens to take her from me. Just hang in there.

neverquit

jona187 said:

omg I really appreciate you
omg I really appreciate you guys writing back

it's pretty overwhelming, but its great to know that I can vent here and get some many great responses.

I really do hope we get over this and continue as a family.

I really really appreciate everyone writing and I'm so grateful to have found this site.

THANK YOU SO MUCH FOR THE WORDS OF ENCOURAGEMENT!!!!

Hang in there Jona; you have
Hang in there Jona; you have more support and prayers from people on this site than you will ever know. My prayers of healing and health are being said for your wife and you and your newborn baby. Take care.

jona187

neverquit said:

Hang in there Jona; you have
Hang in there Jona; you have more support and prayers from people on this site than you will ever know. My prayers of healing and health are being said for your wife and you and your newborn baby. Take care.

I really appreciate the
I really appreciate the prayers and we are doing ok so far.

It's tough sometimes as things seem fine, but then it seems to creep up in my mind.

I can imagine how others are dealing with a cancer situation and my heart goes out to everyone as I can truly relate.

Sometimes I wonder why, but now it's more about the moment

I really appreciate the prayers

sidnuts

jona187 said:

I really appreciate the
I really appreciate the prayers and we are doing ok so far.

It's tough sometimes as things seem fine, but then it seems to creep up in my mind.

I can imagine how others are dealing with a cancer situation and my heart goes out to everyone as I can truly relate.

Sometimes I wonder why, but now it's more about the moment

I really appreciate the prayers

Get informed.
Firstly I echo other people in congratulating you on the birth of your new son. It must be a very difficult time for you both.

I too discovered I had chromophobe RRC 18 months ago, 8.8cm and encapsulated in the right kidney, with no necrosis. Being 37 at the time I was pretty shocked to say the least and with a three year daughter I was devastated with the thoughts of not seeing her grow up.

18 months on I’m feeling fine, still get very tired at times…but feeling great.

I would recommend you visit the Kidney Cancer Online Support Group:

http://www.lsoft.com/scripts/wl.exe?SL1=KIDNEY-ONC&H=LISTSERV.ACOR.ORG


There is also a sub type mailing list for ‘us’ chromophobe types, which has a wealth of info going back years in its archives. I have had great advice from nurses, doctors, patients and cares from this list.

Although it may not seem like it now, it does get easier.

David

jona187

sidnuts said:

Get informed.
Firstly I echo other people in congratulating you on the birth of your new son. It must be a very difficult time for you both.

I too discovered I had chromophobe RRC 18 months ago, 8.8cm and encapsulated in the right kidney, with no necrosis. Being 37 at the time I was pretty shocked to say the least and with a three year daughter I was devastated with the thoughts of not seeing her grow up.

18 months on I’m feeling fine, still get very tired at times…but feeling great.

I would recommend you visit the Kidney Cancer Online Support Group:

http://www.lsoft.com/scripts/wl.exe?SL1=KIDNEY-ONC&H=LISTSERV.ACOR.ORG


There is also a sub type mailing list for ‘us’ chromophobe types, which has a wealth of info going back years in its archives. I have had great advice from nurses, doctors, patients and cares from this list.

Although it may not seem like it now, it does get easier.

David

Hey David,
How are you?
Hey David,

How are you? Sorry for the late reply. I have been juggling work, helping my wife, and caring for my new child. My wife seems to be recovering but there are days when the fatigue just kicks in and drains her. I do understand that fear of not seeing your child grow up. That is my biggest fear for my wife. I want to grow old with that woman and have more children. I also want her to see our children's children grow up . Right now we have one child and we are grateful, but for me, this situation is always in the back of my mind.

Have they put you on any special diet since your operation? They did not recommend one since they said my wife's other kidney was functioning properly, but I don't feel comfortable with that eventhough you can live a normal life with one kidney. I'm more about being proactive and taking steps before something happens.

I do hope it really gets easy. Do you mind sending me tips on how to use this thing? (Mailing List). If you got any helpful emails that you think would help me, would you be so kind to forward it?

DrMary

jona187 said:

Hey David,
How are you?
Hey David,

How are you? Sorry for the late reply. I have been juggling work, helping my wife, and caring for my new child. My wife seems to be recovering but there are days when the fatigue just kicks in and drains her. I do understand that fear of not seeing your child grow up. That is my biggest fear for my wife. I want to grow old with that woman and have more children. I also want her to see our children's children grow up . Right now we have one child and we are grateful, but for me, this situation is always in the back of my mind.

Have they put you on any special diet since your operation? They did not recommend one since they said my wife's other kidney was functioning properly, but I don't feel comfortable with that eventhough you can live a normal life with one kidney. I'm more about being proactive and taking steps before something happens.

I do hope it really gets easy. Do you mind sending me tips on how to use this thing? (Mailing List). If you got any helpful emails that you think would help me, would you be so kind to forward it?

Kidney Diet and other suggestions
Kidney disease runs in my family (I seem to have missed getting the gene, but all of my father's siblings and most of their children got it) so this is a common topic among us. The general agreement (kidney groups, Mayo clinic, doctors) is that a low protein diet will not protect the kidney, but a high protein diet can place stress on it; most of my relatives try to consume the minimum suggested protein amount (for a 130-lb woman that is between 1-3 oz/day).

Controlling weight and blood pressure is very important. If the doctors are not worried, her blood pressure is probably fine, but she should check it regularly. Being overweight will eventually raise the blood pressure (and is becoming a leading cause of kidney failure in the US). Obviously, she should not try Atkins if she is trying to lose baby weight - a healthy diet with most of the calories from whole grains, fruits and vegetables is the key. I personally don't think artificial sweeteners are a good idea, but I don't know of any research that would indicate they are bad for kidneys, so that's just my own opinion.

Lots of water. It should come out almost as clear as when it goes in. Go easy on alcohol.

Don't take signs of a bladder infection lightly - she should get treated before it has a chance to spread to her kidney.

While I understand your concern, do remember that healthy folks rarely have anything happen to their kidneys, so one kidney should be enough forever.

By the way, I love your picture. We do so miss having babies go to sleep on chests.

jona187

DrMary said:

Kidney Diet and other suggestions
Kidney disease runs in my family (I seem to have missed getting the gene, but all of my father's siblings and most of their children got it) so this is a common topic among us. The general agreement (kidney groups, Mayo clinic, doctors) is that a low protein diet will not protect the kidney, but a high protein diet can place stress on it; most of my relatives try to consume the minimum suggested protein amount (for a 130-lb woman that is between 1-3 oz/day).

Controlling weight and blood pressure is very important. If the doctors are not worried, her blood pressure is probably fine, but she should check it regularly. Being overweight will eventually raise the blood pressure (and is becoming a leading cause of kidney failure in the US). Obviously, she should not try Atkins if she is trying to lose baby weight - a healthy diet with most of the calories from whole grains, fruits and vegetables is the key. I personally don't think artificial sweeteners are a good idea, but I don't know of any research that would indicate they are bad for kidneys, so that's just my own opinion.

Lots of water. It should come out almost as clear as when it goes in. Go easy on alcohol.

Don't take signs of a bladder infection lightly - she should get treated before it has a chance to spread to her kidney.

While I understand your concern, do remember that healthy folks rarely have anything happen to their kidneys, so one kidney should be enough forever.

By the way, I love your picture. We do so miss having babies go to sleep on chests.

The doctors aren't worried,

The doctors aren't worried, but I do want my wife to establish better eating habits to be proactive. I don't want her to react one day when we go to the doctors and say well now you have a kidney problem because they said we didn't have to make any dietary changes. I don't let her consume dark colas or any soda for that matter and we are incorporating more fruits and vegetables. She loves bbq flower seeds, but the sodium on that is ridiculous, so she's going through withdrawal from that. That was her favorite childhood snack. I also try to have her stay away from caramel coloring as I have read that manufacturing of it involves alot of chemicals. It's just not what it use to be.

Thanks for the compliment in regards to my son laying on my chest. I love holding him on my chest. His smile gets me through the tough times when I'm down. I really do appreciate the tips and have passed them to my wife. She did not like to hear about the protein part. She was a big meat eater. It's been hard for her to change some of her past habits, but we are working on it.

Again, thanks so much for the reply.