I've been following his mother's posts on FB. I cannot imagine. It is horrible losing my mom last year, but losing a son, so young. I am at a loss for words.
So great to hear things are well!
Have you tried applying for medicaid? I know it's not a fast process, but just as Kris v recommended, speak to the social worker and they may be able to give you information. Let them know of your situation and hopefully, they can assist you in the right direction.
I couldn't have said it better myself. I also am a home care nurse and agree that home care services are not utilized enough. I think if doctors were better educated on the variety of services available for patients at home after discharge from hospitals, it would help patients and families...
Also, if anyone is a veteran, I do believe the that government will pay for private duty assistance in the home that medicare and private insurances do not cover.
Also, speak to a social worker at the hospital or if you already have home care services at home, most home care agencies have social workers available, they may be able to assist you finding volunteer organizations may offer respite care.
My dad read the book " Proof of Heaven" and in it was a poem by David Romano "When Tomorrow Starts Without Me"...
When tomorrow starts without me,
And I'm not there to see,
If the sun should rise and find your eyes,
All filled with tears for me,
I wish so much you wouldn't cry
They way you did today,
While thinking of the many things,
We didn't get to say.
I know how much you love me,
As much as I love you
And each time you think of me,
I know you'll miss me too
But when tomorrow starts without me,
Please try to understand,
That an angel came and called my name,
And took me by the hand,
And said my place was ready,
In heaven far above
And that I'd have to leave behind
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye
For all my life, I'd always thought,
I didn't want to die.
I had so much to live for,
So much left yet to do.
It seemed almost impossible
That I was leaving you.
I thought of all the yesterdays,
The good ones and the bad,
The thought of all the love we shared,
And all the fun we had.
If i could relive yesterday,
Just even for a while,
I'd say good bye and kiss you
and maybe see you smile
But then I fully realized
That this could never be,
For emptiness and memories,
Would take the place for me.
And when I thought of worldly things
I might miss come tomorrow
I thought of you and when i did
My heart was filled with sorrow
But when I walked through heaven's gates
I felt so much as home
When God looked down and smiled at me,
From His great golden throne,
He said, "this is eternity
And all I've promised you,
Today your life on earth is past
But here it starts anew
I promise no tomorrow
But today will always last
And since each day's the same way
There's no longing for the past
You have been so faithful
So trusting and so true
Though there were times
You did somethings
You knew you shouldn't do
But you have been forgiven
And now at last you're free
So won't you come and take my hand
And share my life with me?
So when tomorrow starts without me
Don't think we're far apart
For every time you think of me
I'm right here in you heart.
Thank you Laney for your kind words.
My mom was diagnosed with renal call carcinoma approx 12 years ago. Partial nephrectomy took care of that, but unfortunately, she was diagnosed with this 12 years later.
My mom received IMRT and chemotherapy at the same time. Chemo: gemzar only. IMRT 28 sessions. Gemzar for 7 months. My mom decided to stop gemzar after 7 months because she was feeling so ill. Initially, she received clear scans(CT and PET scan) after treatments, but then became ill only one month later because of occluded bile ducts. She then required stents. Her tumor was also in the caudate lobe. No surgery due to involvement of portal vein.
Everyone responds differently. Unfortunately, mom initially received great news after treatment was done, but then only one month later, complications started.
My mother's needle biopsy came back negative for cancer, but PET scan showed concern. They obtained sample via ERCP which came back at positive for the cancer.
I pray that you will receive good results!
I am sorry, I took so long to respond to you. First of all, I hope your mom is doing well and she enjoyed her trip!
My mom received radiation and chemotherapy at the same time. She received total of 28 sessions of radiation and chemotherapy once a week for 3 weeks, with one week off for approx 7 months. She was supposed to go 8 months, but she decided she had enough. She tolerated both treatments fairly well for about 2 or 3 months, but then complications one right after another. My poor mom was hospitalized approx 10 times in 18 months, most of the time because of the side effects of the chemotherapy. She went thru hell. She then finally decided she had enough and requested to stop chemotherapy. She got about one month off, then repeat PET scan and CT scan. The oncologist was actually surprised that the liver had improved significantly and that the tumor appeared to have shrunk and was not seen on the scans. He wanted to see her again in 3 months for repeat scans. Then about one month later, I noticed she was jaundiced, called oncologist, they scheduled another CT scan and they found that her bile ducts were occluded. She then was scheduled for ERCP, resulting in 2 plastic stents. They could not insert metal stents because the ducts were too narrow. We could not believe in just one month, how she can go from a clear scan to occluded bile ducts requiring stents. From then on, she became sicker and more hospitalizations due to infections from the stents.
Michelle, the stents, especially plastic (because they are smaller in diameter) are prone to infections. My mom became septic, ICU for almost a week, then it was down hill from then on. I think she was just so sick of being sick and spending majority of the time in the hospital.
As I stated, before she was diagnosed, she was her normal self, active, no pain. She was completely symptom free. But, in her case, it was after she received the treatments that she became so ill.
So, in hind sight, I think, if we could go back in time, I think my mom would have chosen not to receive treatment, given the difficulty she experienced from the radiation and chemotherapy. But, when you are told that you have cancer, you initially want every treatment that is available.
Everyone is different Michelle. My mom just did not do well with the treatments given to her. Especially after the stents were placed. But every person has different experiences. What we learned from our experience is that quality of life is so much more important than quantity. We, especially myself was so not ready to give up and did not want to lose my mom and encouraged her to go through the treatments. But, I saw my mom suffer so much that I wish I can go back in time and knowing what I know now, realize early on that quality of life is more important. Sometimes I feel so guilty, but I know that will not bring my mom back. I miss her everyday, but I know that she is with God and is not suffering anymore.
I hope your mother stays well. Don't be afraid to ask questions. You are your mom's best advocate. But, if you feel like crying, cry. It is a tough journey.
So very sorry. I must say that your post almost mirrors my mom's journey. At first, I too spent every chance I got on the internet looking for more information about this cancer. But, this site is such a good resource. Wonderful people here with great advice and support.
Unfortunately, my mother passed away over 7 months ago. It was a very difficult journey.
My mother's tumor was centrally located, did not qualify for surgery either. Tumor was about the same size as your mother's. She went thru chemo and radiation, which was hell. When she was diagnosed, she was completely asymptomatic. They actually found the cancer by accident. But probably about one month into the radiation and chemo, she became ill, in pain. Everyone is different. Some tolerate treatment well. But in my mother's case, she did not, but she completed chemo for about 8 months. Then a month after her treatments ended, she became jaundice and required stents. One thing about plastic stents that my mom experienced was that fat that the clot off easily. Watch your mom for fever, chills, nausea, vomitting, abd pain. If symptoms occur, please call MD immediately. My mom actually became septic and required a week in the ICU because of the infection.
It's a tough road, but with you by her side, she will be stronger knowing that you are there for her, by her side, every step.
I often felt so helpless, seeing my mom suffer as she did. This is a terrible disease and I hope they can find more effective treatment.
I hope your mom has fun in Vegas, hopefully bring back from $$$.
I just love your posts. I miss my mom so much. It's been almost 6 months since she passed away and reading your posts.. very comforting. Thank you!
I am truly sorry that your brother is going through this. My mother had plastic stents. We were given option for metal vs plastic. We were told that the metal stents had decreased chance of clogging only because they were larger in diameter. But the bad thing about the metal stents we were told were that once they placed them, it would be very difficult to remove because of the tissue that grows over them and the stents become imbedded. MD stated that if the metal stents become occluded, they could either try to clean it out or place a plastic stent within the metal stent. But because the occlusions were too narrow, metal stents were too large and was not an option for my mom. So, she ended up with 2 plastic stents and one external/internal stent. The problem is the infection that occurs. I truly believe, it was the multiple infections that followed the stent placements that caused my mother's condition to worsen so quickly. She was admitted with sepsis, spent several days in the ICU and after that her condition quickly worsened. We were told that infection following stent placement was a given. That it would be very difficult to prevent infection. She was on numerous IV antibiotics at home.
The external/internal stent we flushed twice a day, so it decreased the potential for occlusions, but my mom went through much pain with each change.
First, Cipro was the choice for treating the infections, but later stopped working. She was on zosyn and another IV antibiotic at home.
Her stents were changed every 6 to 8 weeks due to blockage and infection.
I hope they can find a solution for your brother.
My mother had 2 internal stents and one external stent. She also had numerous infections and was in the ICU one time with sepsis. After the sepsis, that's when her condition worsened. The infections took a toll on her. increased weakness, loss of appetite, muscle mass,etc... I think the infections ultimately lead to her passing rather than the cancer itself. She could not have the metal stents because of the narrow passage. The internal plastic stents continued to clot off due to sludge, resulting in infections. It was awful. She too was on IV ATB at home. We were torn because without the stents, the bili levels, ammonia levels would increase, but with the stents, infection... it's a tough situation.
My mom left us almost 4 months ago. I miss her everyday. I still have the sweat shirt she wore the last. I have it hanging on my stairwell. I keep it covered so I don't lose her scent. Work keeps me busy. My dad is trying hard to keep it together, but he has his moments. He dreams about her a lot. He says in his latest dreams, my mom keeps leaving and he chases after her. He says she is probably trying to give him a message to let her go and live his life. He is now living by himself and everything in the house reminds him of mom. It is hard, but take it day by day.
So very sorry your loved one is going through this. My mom had 2 internal plastic stents and one external/internal stent. She suffered so much from the stents. They caused infections after infections, pain, hospitalizations, sepsis. The external stents are very uncomfortable/painful. The internal stents, unless they are metal, they clot off, get infected and cause so much suffering. Abdominal pain was chronic after the stents were placed.
I truly hope your loved one can get some relieve.
I visit my dear mother's grave at least 2 times a week. ( it is very close to my home) I feel peaceful when I'm there. I know her spirit is not there, but I still go.
Thank you Carrie. My heart goes out to everyone diagnosed with this terrible cancer and their loved ones.
I've been reading the updates on FB that Lisa C. has been posting on Lauren's surgery. Been praying for her recovery. With you by her side, I'm sure she will be fine.
I totally respect your dad's decision not to accept treatment. If I can be honest, in my mom's case, the treatments that she received (chemo/radiation/stents) caused more problems, hospitalizations and suffering that I feel she could have avoided if she did not receive treatments. Although reality is that if one does not receive treatment, the cancer may progress faster, but at least I feel my mom's quality of life would have been better. She was completely asymptomatic when she was diagnosed. Actually she was diagnosed by accident. She was eating well, active and feeling fine. She did started having complications once chemo/radiation started. At the time that your physician tells you that you have cancer, you are in a daze, in denial. Then you get to the stage where you want to try anything that may help. But in my mom's case, those treatments made her feel so ill, so many complications. Each treatment she received, cause a complication. She could not get a break. We were actually told that after her chemo and radiation, the PET scan came back clean, but then ONE MONTH later, she became jaundice, then all hell broke loose.
So, respect your father's choice, I now realize that QUALITY OF LIFE IS FAR MORE IMPORTANT THAN QUANTITY OF LIFE. We learned it the hard way.
Very sorry what you and your family is going through.... at times I wanted to scream because I was at my wits end seeing my mom suffering so much. She endured radiation, chemotherapy, one external stent, 2 internal stents, infections, IV antibiotics, sepsis, numerous ER visits, hospitalizations. To be honest I don't know how she endured all of this for 1 and 1/2 years, because I certainly could not have. My mom left us 12 days ago, although I know she is no longer suffering, we miss her terribly.
It is ok to feel frustrated, overwhelmed, angry. This cancer robs us of our loved ones. If you feel like talking, feel free to contact me.
My beautiful mom and best friend went home to heaven May 13, 2013. It was the day of mom and dad's 50th wedding anniversary. She left us with a smile on her face to let us know that she is in a better place. I miss her greatly. I was blessed to call her "omma" (korean for mom) for 44 years. She was the most sweetest and selfless person I know and God is lucky to have her in heaven. I cherish everyday that I got to spend with her! I love you mom!
God bless everyone who has been diagnosed with this thief of a cancer and their loved ones.
my mom has 2 internal stents and one external/internal stent. The external stents are a pain in the butt. Make sure you flush them with normal saline at least daily. The internal stents become infected due to blockage. My mom has been hospitalized several times due to infection. All this only after one month after clear PET scan. Can't understand it.
My mom had clear PET scan one month after chemo/radiation. Then approx. one month later, she became jaundice. CT scan showed blockage of bile ducts which was treated with two internal stents. One week later, she developed fevers. After two hospitalizations, IV ATB, stent changes, was discharged home. Only to be readmitted again after another infection. During an attempt to place an additional external stent due to blockage of another part of the liver, she became septic and was in the ICU for 5 days. Was placed on zosyn and daptomycin, recovered, sent home for 4 weeks of IV ATB. She's doing better but now since the external stent placed, a lot of abdominal pain. Can't win. I hope your sister is doing better. The bacteria that grew: e coli, VRE. Since the clear PET scan, it has been a roller coaster ride.