Post surgery - lost/confused

Hi Joe, 

I am sorry to hear it took so long to get to the root of your health issues. The way you are feeling right now is very normal, you are shell shocked. Such a major life change in a matter of nine days, it is not even like missing a chapter it's like reading from a different book. There may always be a lingering sense of disbelief, it is very hard to come to terms with. So the answer is, no you are definately not alone in this, for many people it is a shock discovery and a speedy operation, with little time to assimilate.  

Try not to over think it, you will slowly get you head around it. I found that working out a positive way to proceed with my life helped a lot. Working on ways to stay healthy ie. change of diet, exercise, lifestyle etc. has helped with my determination to move on and stay motivated.

I am glad to hear the surgery went well and you are making a good recovery, I hope you able to rest until after Christmas? 

Djinnie

Hi Joe!  I know how hard it is to wrap your head around a cancer diagnosis.  We all do.  Especially when it happens so fast.  I was told on May 16th that I had a malignant 4.7 cm tumor on my right kidney and on May 29th I had a radical nephrectomy, laparoscopic vs open like yours.  Unlike you, I was asymptomatic...I did not lose 30 lbs to kidney cancer...darn it!!  Luckily, I also did not have the fatigue and other symptoms you dealt with.

I think part of the reason I had such a hard time processing a cancer diagnosis, followed by such a quick "cure" is because, my whole life cancer has been associated with death.  I never knew of anyone who had cancer one day and not the next.  I thought it was, if not a death sentance, certainly a life sentance.  Something patients either lived with or died with.  I don't seem to fit into either of those catagories. 

I have of late, been focusing on the positive side effects of cancer.  Surprisingly, there are more than I imagined there could be.  In fact, in many ways, I am finding this to have been a blessing in disguise. 

I hope your healing continues to be uneventful and that you are able to enjoy the holidays!

Sindy

HarleyMom117 said:

Another one with 'shell shock' here!

Hi, Joe -- I'm Terri.   I had an open radical nephrectomy on Oct. 2 to remove my left kidney and the 4cm cubed tumor within.   Prior to that, I was a healthy 46-year-old female non-smoker with no symptoms or history whatsoever, and (like many), my cancer was found by accident.    My surgery took place 10 days after diagnosis (it would have been a week earlier -- but I had tickets to my first Blackhawks game in 15 years, & I wasn't letting cancer take that from me!!)

I, too, felt what others have (rightly) called 'shell shock'.   Initally, when word of my condition spread among family & friends, I was almost embarrassed by the outpouring of concern I experienced.  After all, this wasn't REALLY cancer -- cancer is months of chemo & radiation, cancer is hair loss, cancer is being horribly sick -- you don't have cancer one day, and then not have it the next.    Yet I still had to reconcile my less-than-normal (in my mind) experience with the fact that it is, indeed, the very scary thing called CANCER.   Now, 2 months post-op, I am better than I was, though still have not completely come to terms with the newest addition to my medical history (though I did have a good cry last week when the local blood bank called to ask me to donate.  I was only 2 donations away from completing my 12th gallon at the time of my diagnosis.  I still don't know if I will ever be able to donate again -- I've been afraid to ask the question).

Well....I apologize for my rambling (I write like I talk -- which is quite sad for my friends and family ).   I hope something I've said has helped you a little.   Please keep us posted on your recovery and on your continued treatment -- I've found this site to be an incredibly supportive community, and a great place to ask questions!  I am so grateful for the help and guidance I've gotten!   You will be in my prayers.

Terri

Hi Terri, 

I am glad to hear you are doing better, as you say it takes time and an inordinate amount of patience! I have a feeling you may not be allowed to donate, I know that I can't here in France. When I had cancer the first time ten years ago, I was living in Texas and they would not allow me to donate there. Mind you! I discovered I was disqualified in the USA anyway because I came from the UK, we Europeans are all considered to be carriers of Mad Cow Disease, because of the tainted meat back in the 1980's. That was a bit of a shock as it wasn't something I had come across before!

Djinnie

I'm not sure if I'm supposed to write on here, since I am not the patient. But Joe, your story just jumped out at me. I am so sorry for all you are going through! I can totally relate to the shell shock, but from a different perspective.

Unlike you, my husband had no symptoms of kidney cancer. He fell off the ladder while cleaning gutters in October, and a mass was discovered in one of the scans they performed at the hospital. Long story short, he wound up having a radical nephrectomy, if I got that right, which included removing the left kidney, spleen, adrenal gland, lymph nodes and a nodule on the pancreas. The nodule was also kidney cancer. Nothing in the lymph nodes, but we were told it could spread through the bloodstream.

The surgery was on Nov. 15, and was done with laproscopically with a robot. My husband is just starting to feel better.

So we have a few different appointments with oncologists coming up - a local doctor recommended by primary physician, and we are also scheduling a visit to MD Anderson.

It sounds like you don't need further treatment at this time? I would be curious how others on this forum decided on which oncologist to choose. This is all so overwhelming.

You and all the other survivors on this discussion board are in my prayers. 

Joe C said:

it's an adventure

Couldn't have summed it up better myself Terri.  Nice to meet you.  Kind of funny to hear so many people with the same experience..., not knowing we had something or not experiencing the 'traditional' cancer experience as we used to know it. Though it makes me feel normal to have a similar experience.

So happy to hear your post op experience has been positive.  I hopeful of a final diagnosis from pathology myself.  I'm looking at things in terms of goals.  Next on the plate is getting longer walks in outside and errands as well as getting off pain meds.  Then, perhaps yoga, stretches.  Maybe back to the gym for crossfit.  Seems a long process but it really keeps me positive to make the little goals.  Now I'm rambling...!

I had not thought about not being permitted to donate blood.  That is a bummer as I enjoyed giving. Well, each day I'm learning something new about what to expect.  It's an adventure.

Hi Joe, and I'm sorry to tell you Welcome to the Club.  I had about 2 weeks from ultrasound for possible gallbladder problems (which I would have happily taken!) til I had robotic assisted Laporascopic removal of my right kidney.  Chromophobe. 6.7 cm with invasion to the renal vein and the sinus fat.  Stage 3a grade 2.  Took me the entire two weeks to get my head wrapped around it.  Cancer hit my family hard in 2012-13...sister died of small cell lung cancer in Sept '12, her grandson, my great nephew (8yrs old) was diagnosed with Burkett's Lymphoma, then me in April, 2013 right after nephew was declared in remission, so this knocked me for a BIG loop.

you will adjust to your new normal and will get your strength back.  You'll also get on a first name basis with doctors and scan techs really fast! LOL. What I don't understand is why the men are always the ones who get to lose the weight?!?!  

Stay with us and we'll all learn from each other.  We are all here and we all get scared at times and we prop each other up when needed.  There's lots of good information on here.  Oh, one thing my family dr. told me was "walk as far as you can comfortably, then the next day, walk that far again and add 10 steps, next day walk to the +10, and add ten more steps, and do that every day.  Twice a day if you can.  You will build yourself up at a pace that won't keep you fatigued."  Good advice!  Drink lots of water, cut out most of the salt,  eat good healthy fresh foods, and cut down on the protein.

glad to have you here...don't push yourself too hard...your body has been through MAJOR trauma, and even after the outside incision heals, the inside is still a battle ravaged field.

Joe C said:

shell shock

Hi Rose,

Thank you for reaching out!  These boards are your second home to feel, share, and learn. You have as much right to talk on these boards as me and anyone else.  The more sharing from you, the better off we all are as the magic of these boards is fueled by interactions.

I am sorry to hear about your husband but it sounds like reovery is going well and I'm sure he couldn't have gotten there without you. I think spouses are harder hit than the survivor. I really felt for my wife, watching me go through the pains and challenges because it was all out of her control. She didn't have to say it, but i could see the feeling of helplessness in her eyes. As a survivor, I have to say that all of the little things, like adjusting a pillow, were mountainous feats in my mind and I would not be at such a positive place without her attention.  A spouse and a survivor are equals in this adventure.  We experience different perspectives and challenges but we are on the same journey together (a good thing to remember if you question your permission to post in the future).

To answer your question.  I kind of fell into the right oncologist.  I'm 35 and my wife's friend (a nurse at Northwestern in Chicago) saw the symptoms progression and guided me to her hospital with some urgency. Given so much happens so quickly you can kind of feel rushed into an oncologist to take care of the emergency.  I think you are doing the right thing by having multiple interviews with oncologists and getting the feel for the right type of person and approach for your husband. Personality matters as I quickly learned this will be a long term relationship.  I would also consider the strength of the institution they work in (strong technology, research, availability of other specialists). 

Regarding my further treatment.... I just received good news from my oncologist yesterday evening. My pathology reports came back and I was given a T2b, N0 which means it's a stage 2, being > 7cm (mine was 10.4cm) and limited to the kidney with no metastases ("mets") in the 10 lymph notes they pulled. The cancer is an aggressive grade 3 so it was/is a great boost to hear it was contained and in stage 2.  I just received the vm, so I had to shout out this news somewhere!   I still need to go in every three months for scans, blood, urine tests, but I'm pretty psyched about that!

I've only been on the boards for a week, I'm a newbie, but I became confused real quick by all of the terminology used.  You'll see survivors use some terminology on the boards.  Not sure if this will help you or if you need it, but the link below helps educate on renal cell classifications.

http://www.cancer.gov/cancertopics/pdq/treatment/renalcell/HealthProfessional/page3

Thanks again for reaching out!  Good luck on the oncologist meetings and let us know how they go.

Joe

First you are on a plane ride...then someone kicks you out the door at altitude...you're in free fall...then you grasp and find a cord to open a parachute (surgery)...then you land, but it's on an island...oops, it's not inhabited.  But you are a survivor!!!

Remember the word survivor; it will give you the hope that things will get better.  No one said it will be easy being a survivor, and we all have our stories of the low/bad parts.

Some things you can and should do for yourself: become informed about the disease from reliable sources, be your own medical advocate, ask the oncologist for explanations, get a copy of every set of labs and test results.  If you don't understand them, ask what they mean.  Use the internet to obtain basic definitions of lab results and terminology.

Don't keep your feelings bottled up.  Share with family and close friends if you can.  Participate in a Support Group, which increases survivabilty by 25%.  Hospitals, Doctors, Hospice groups, churches, community education, etc. may sponsor one nearby.  Exercise and healthy eating should be high on your list.  Many people turn to religion or spirituality, but that is your choice.

I started on my plane ride 7 1/2 years ago thinking I might have a gall stone; and was told I had Stage IV Kidney cancer with 5-7 months to live.  My response after the shock wore off, was bull s...., I'm not ready to die.

We need you to keep on surviving and totally skew the rates that the oncologists use.  You can and will be a survivor.

Donna

Srashedb said:

Rose: I am also not a patient

Rose: I am also not a patient but my husband is; his kidney cancer diagnosis was made 7 months after complaining of flank pain. When an MRI was done, a large mass showed on his right kidney as well as two mets on his spine.

He was diagnosed in July and went through spinal surgery, a 16- day small bowel obstruction, 10 radiation treatments to the surgical area and 6 sessions of cyber knife to the other met.

25 pounds lighter, he had a radical nephrectomy in September with clean scans in late November; the tumor was 10 cm, grade 2.

these last months are a blur and occasionally, I relive parts of them with some form of post traumatic stress; a spouse is welcome since we caretake and get useful information for our patients so welcome!

this is a really nice group.

Sarah

Sarah and Rose, kudos to you both! 

I can honestly say, I'd rather be the patient/survivor than the spouse/caretaker of one.  Each time I saw the helplessness in my husband's face, it broke me.  I do not doubt for a split-second that he was every bit as scared as I was, maybe more.  He has so lovingly lived up to the vows he made to me 32 years ago, to cherish and protect me, but he couldn't protect me from cancer and that weighed very heavy on him.   Cancer happened to us, not just me.  I bear the physical scars but the emotional scars, we share.

You caretakers are, in large part, why we patients become survivors! 

God Bless you and have a Merry Christmas!

Sindy

Joe C said:

shell shock

Hi Rose,

Thank you for reaching out!  These boards are your second home to feel, share, and learn. You have as much right to talk on these boards as me and anyone else.  The more sharing from you, the better off we all are as the magic of these boards is fueled by interactions.

I am sorry to hear about your husband but it sounds like reovery is going well and I'm sure he couldn't have gotten there without you. I think spouses are harder hit than the survivor. I really felt for my wife, watching me go through the pains and challenges because it was all out of her control. She didn't have to say it, but i could see the feeling of helplessness in her eyes. As a survivor, I have to say that all of the little things, like adjusting a pillow, were mountainous feats in my mind and I would not be at such a positive place without her attention.  A spouse and a survivor are equals in this adventure.  We experience different perspectives and challenges but we are on the same journey together (a good thing to remember if you question your permission to post in the future).

To answer your question.  I kind of fell into the right oncologist.  I'm 35 and my wife's friend (a nurse at Northwestern in Chicago) saw the symptoms progression and guided me to her hospital with some urgency. Given so much happens so quickly you can kind of feel rushed into an oncologist to take care of the emergency.  I think you are doing the right thing by having multiple interviews with oncologists and getting the feel for the right type of person and approach for your husband. Personality matters as I quickly learned this will be a long term relationship.  I would also consider the strength of the institution they work in (strong technology, research, availability of other specialists). 

Regarding my further treatment.... I just received good news from my oncologist yesterday evening. My pathology reports came back and I was given a T2b, N0 which means it's a stage 2, being > 7cm (mine was 10.4cm) and limited to the kidney with no metastases ("mets") in the 10 lymph notes they pulled. The cancer is an aggressive grade 3 so it was/is a great boost to hear it was contained and in stage 2.  I just received the vm, so I had to shout out this news somewhere!   I still need to go in every three months for scans, blood, urine tests, but I'm pretty psyched about that!

I've only been on the boards for a week, I'm a newbie, but I became confused real quick by all of the terminology used.  You'll see survivors use some terminology on the boards.  Not sure if this will help you or if you need it, but the link below helps educate on renal cell classifications.

http://www.cancer.gov/cancertopics/pdq/treatment/renalcell/HealthProfessional/page3

Thanks again for reaching out!  Good luck on the oncologist meetings and let us know how they go.

Joe

wow joe that is good news well if it can ever be good news!!  just take it easy and listen to your body....i had my nephrectomy nearly a year ago and i still struggle a bit but hey i can deal with that and you will too......have a wonderful christmas and here's to a happy and healthy new year....

eims x