Scared To Death

My husband has stage four renal cell carcinoma.  We tried Nexevar but found the tumors only increased and so he has been in hospice at home since January 18, 2007.  At that point the oncologist told us to expect anywhere from a couple of days to a few weeks.  Well it is February 15, 2007 and he is still hanging on.  Prior to the diagnosis he was 6'3 and weighed about 190lbs.  He weighs 145 now.  He started lucid daytime "dreaming" or hallucinations a couple of weeks ago and does that off and on, more so at night and early morning.  We had to increase his morphine three days ago to 2mls every three hours on top of the hydrocodone he takes every eight hours for the pain.  He is in and out of sleep basically all day long.  My employer has allowed me to work from the home to be with him but I am scared to death.  I just wish I knew when and how.  I feel like I am waiting for the axe to fall.  I myself am taking valium three times a day to deal with all of this as it is.  We have a 7 year old son at home as well.  This is the hardest thing I have ever experienced and I don't know that I will make it through this - I feel like I am going crazy, mad one minute distant the next crying - everything feels like it is closing in around me - we have friends that visit and that is a belessed distraction.  I just don't know what I will do without my husband -we had so many plans - plans that we will never realize-  Just had to vent

Janet

On 2/16/2007 Pookabear wrote:

My husband has stage four renal cell carcinoma.  We tried Nexevar but found the tumors only increased and so he has been in hospice at home since January 18, 2007.  At that point the oncologist told us to expect anywhere from a couple of days to a few weeks.  Well it is February 15, 2007 and he is still hanging on.  Prior to the diagnosis he was 6'3 and weighed about 190lbs.  He weighs 145 now.  He started lucid daytime "dreaming" or hallucinations a couple of weeks ago and does that off and on, more so at night and early morning.  We had to increase his morphine three days ago to 2mls every three hours on top of the hydrocodone he takes every eight hours for the pain.  He is in and out of sleep basically all day long.  My employer has allowed me to work from the home to be with him but I am scared to death.  I just wish I knew when and how.  I feel like I am waiting for the axe to fall.  I myself am taking valium three times a day to deal with all of this as it is.  We have a 7 year old son at home as well.  This is the hardest thing I have ever experienced and I don't know that I will make it through this - I feel like I am going crazy, mad one minute distant the next crying - everything feels like it is closing in around me - we have friends that visit and that is a belessed distraction.  I just don't know what I will do without my husband -we had so many plans - plans that we will never realize-  Just had to vent

Janet

Hi Janet,

I truly feel for you. I too have my husband home with stage IV RCC,bone mets as well as other parts of his boday (*mostly bone)though he is not as bad as your husband. A couple of questions though have they tried using Methadone for his pain? My husband is now on it and uses oxycodone in between for breakthrough pain and it has helped, not just with pain but how lucid he is. Also he is on home health/hospice but has not yet been put on hospice completely so they are letting him take Sutent. Has your husband had the opportunity to try Sutent, it seems to be getting really good results. In all honesty, prior to the Sutent and this site I was feeling exactly like you, and my boss laid me off so I can devote all of my time and attention to my husband. I thought that I would loose my mind. We too have children at home a 16 yr old son and a 9 yr old grandson that we raise. It is awful and scary and heartbreaking. I feel helpless and never know what will come next. I can tell you that being on this site and speaking to others helps. Keep in touch, we all need each other.

Debbie

Hi Janet,

I saw your headline "scared to death" and I could instantly relate to you.  Even though my situation is different from yours, (I am a cancer patient) I can relate to you because I lost my brother when he was only 34 years old to cancer.  He was my best friend and my only brother.  I too was scared because I could not imagine  going on with life without him, but now it is about 30+ years later and although I still miss him, my experience tells me that the people you expect to help you might not, but help and support will come from people you least expect it from and you and your son will survive this.  I didn't believe in God but believe that invisible as He is, He placed people in my life that have helped me.

Whether you believe in God or not (I got mad at God for taking my brother away from me) I recommend finding a local church and go visit the pastor during the business day.  Tell him or her what you are going through.  Not only will most churches take you and your son under their wings but even better, I predict that you will feel the presence of God even if you didn't believe in Him before.  It happened for me, it can happen for you. 

May God bless you with comfort and peace despite all the things that frighten us along life's pathway.

Richard B. in Conroe, Texas

Hi Janet

 I'm scared too. My wife (age 50) was diagnosed with Stage 3 colon cancer last June and everthing has been bad news since then. We learned a month ago  it has since recurred in the same location. Old chemo treatment is now out the window. Have started a new treatment and added in Avastin. The statistics start freaking you out but the Cole's notes version is survial rate is about 10% assuming the Avastin shrinks the tumour and that shrinkage success rate is 25%. She is on morphine for the pain and basically sleeps all day. I have a daughter 20 away at university and twins aged 13. I'm still going to work.

I know exactly how you feel when you say you are waiting for the axe to fall or you're going crazy.  I don't want to think the worst but I have no choice. I am trying to be strong for her and the kids but find myself crying on the drive to work. Powerlessness. Anger. Feeling alone. being a full time single parent but with the added responsibilities of being her caregiver and being worried all the time about the prognosis. All the plans that we made....etc etc It's very hard. I wish you luck. Hang in there. Not a lot of choice but to go through the process and hope for the best.

On 2/16/2007 Pookabear wrote:

My husband has stage four renal cell carcinoma.  We tried Nexevar but found the tumors only increased and so he has been in hospice at home since January 18, 2007.  At that point the oncologist told us to expect anywhere from a couple of days to a few weeks.  Well it is February 15, 2007 and he is still hanging on.  Prior to the diagnosis he was 6'3 and weighed about 190lbs.  He weighs 145 now.  He started lucid daytime "dreaming" or hallucinations a couple of weeks ago and does that off and on, more so at night and early morning.  We had to increase his morphine three days ago to 2mls every three hours on top of the hydrocodone he takes every eight hours for the pain.  He is in and out of sleep basically all day long.  My employer has allowed me to work from the home to be with him but I am scared to death.  I just wish I knew when and how.  I feel like I am waiting for the axe to fall.  I myself am taking valium three times a day to deal with all of this as it is.  We have a 7 year old son at home as well.  This is the hardest thing I have ever experienced and I don't know that I will make it through this - I feel like I am going crazy, mad one minute distant the next crying - everything feels like it is closing in around me - we have friends that visit and that is a belessed distraction.  I just don't know what I will do without my husband -we had so many plans - plans that we will never realize-  Just had to vent

Janet

Dear Janet,

I know what you are going through.  My husband was dx with stage IV advanced metastic renal cancer in May of 2005 and was given 6 months to live.  He has been through Interleukin 2 and is currently on a study drug  which helped but has suddenly stopped working.  His left kidney was removed and his adrenals are huge, so large that they pop out of the sides of his shirt looking like fat but they are not!  Kidney cancer has spread to his bone and lungs.  He is exhausted all the time, jaundiced and weak and has rigors (severe cold chills) and night sweats and severe pain in his legs.  I feel helpless and overwhelmed by it all.  People tell me he looks "good."  I don't know who they are looking at.  Because my husband does not look "good."  I don't know why they say these things to me.  I don't necessarily want them to say, "gee he looks bad," but I want them to acknowledge that he is sick and that I am a woman and try to do it all with no help!  Maybe I want someone to say, "let me help you do the "guy" stuff" but nobody does.  Because he is not bald from chemo and does not weigh 84 pounds, they think he is okay and can't "see" the cancer and the bulges in his sides they think are weight gain.  This is real and painful and scary and I feel for you.  This thing goes on and on and the suffering increases and the CT scans and blood tests and now this "study drug" and nothing seems to work.  It's like we are running a race and some giant is holding us by the shirt and won't let us get to the starting line.  Meanwhile the weakness and illness and I'm raising my 12 year old grandson and he is a God send who hugs on command and sees more through his young eyes than all the grown up children do.  I bless you and hope the best for you and anyone who has to face this beast of a cancer.  Hugs from me to you.

Janet,

i just went throught the same thing.  Except it was my mother and she had lung cancer.  She was diagnosed in August .  She was actually doing pretty well and then all of a sudden after Christmas she went downhill fast.  Almost overnight she went from talking and laughing to hallucinating and being unable to have a conversation.  Back in august the doctor gave us a prognosis of up to two years, however she died last month on Jan 20th at the age of 62, only five months after being diagnosed. 

I remember  when we first started using the hospice service and the nurse told me that we were looking at days to a few weeks.  I was floored.  I was expecting at least a solid year of being with my mom.   All the things I wanted to do for my mom, the things i wanted to tell her, the places i wanted to take her.  Cancer destroyed all those things.  I at least had my sister who was there from the start.  She was the primary caregiver and we always had each other to lean on.

having gone through it in the last couple of months I can tell what to expect.  It sounds like you are very close to the end.   I am here if you need any help at all.  My name is john and i am 32.  Please call anytime day or night  and ill do what I can.  If thats is too much for you with me being a stranger than just write me an email.  But whatever you do know that you are not alone.

you'll be in my prayers,

john